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Prayingmom
02-15-2005, 05:32 AM
Someone from the cancer board said that I should come here. My 19 year old son is dying of cancer. It has been a year since we learned that he has cancer. The cancer has relapsed now for the 3rd time. We have prayed so hard. We have asked everyone we know to pray for him. I feel so numb. He is really going to die and there is nothing that anyone can do to stop this. Even my husband who has tried to keep up his hope for a cure is sad now.

I have chronicled Jason's journey these 18 months--it begins with post #124 on page 25 here.

My precious son passed away on 8/25/05 at 1:00 after going into a coma and was received into the arms of his Lord and Saviour, Jesus Christ. Our hearts are broken. We hurt. We wouldn't ever want him to endure the intense pain he felt during the last days again. We loved him so much and now we miss him so much. The last months of his life, the last hours of his life--all are recorded here. God bless you all for caring and praying for him and for us. It was a journey we never wanted to take.

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Debbie04
02-15-2005, 11:07 AM
I'm so sorry to hear about your son. Don't give up hope though, hope is all we really have at a time like this. Pray relentlessly. God does hear our prayers, I know this for a fact. I will pray for you and your son and hope for the best. God Bless You All.

sugaredwillow
02-15-2005, 11:24 AM
My son is very ill also he has agressive jra that is also affecting his vision I know how scary this can be. Pray for Jesus to heal your son. Jesus is what has gotten me through all of this. I will pray for your son. God bless you and your son.

sugaredwillow
02-15-2005, 11:37 AM
Have faith in Jesus he can heal your son. Have faith in Jesus and he will be healed.

Blue102
02-15-2005, 11:38 AM
I'm so sorry. You have my prayers.

Tiffyholman
02-15-2005, 11:45 AM
My parents are Pastors of a church and they have been for 35 years now. My mom has late stages ALS or lou gehrigs disease. We have prayed so hard for her and it is really easy to lose hope, but remember God is the only one that can help you through this. When I realized that I felt better even though it didn't take all the pain away it helped. God is still in the healing business and pray every day that he will heal your son all it takes is faith of a mustard seed to move a mountain, than anything can be done with that. I will pray for you and your son, I'll add him to our pray list at church. God bless you.

LoriGymnast
02-15-2005, 12:02 PM
My heart breaks for you and your family. I have a 17 year old son and I cannot even imagine your pain. I prayed for your son and your family as you all need a touch from heaven right now. When I prayed I asked Jesus to give me a verse that would give you encouragement at this time. John 10:28, "I give them eternal life, and they shall never die; no one can snatch them out of my hand." Are you a christian, a follower of Jesus Christ? Nothing is impossible with God, and where we think there is no hope can sometimes be wrong. Only God can give you real peace at a time such as this, I will keep you all in my thoughts and prayers. This life is short, but Prasie the Lord we can know we have eternal life!

Lanew
02-15-2005, 04:24 PM
I agree with everyone keep praying,also where two or more are gatherd in his name he will be there. I believe if everyone here that has read your sorrow If we all come together in prayer I believe Jesus will hear us all in agreement. At 6.00 pm wed Feb 16th we all stop what we are doing and pray for this young man. If thats ok with you.
I loss my 16 yr old son in a car wreck, we never got a chance to do something. We know God can and we should lift your son up to him to heal.

Prayingmom
02-16-2005, 04:01 AM
Hi Everyone (Lanew, Lori, Tiffy, and others who have stopped by),

Thank you all so much for caring and for praying. My son had a good day--or at least as good as he can with what he faces. He got out of the house and went to visit his old high school--a friend was in visiting from Pennsylvania and he wanted to see her. I will join you in praying for my son Wed, 2/6/05 at 6PM and thank you for suggesting this. I am usually in the church library at that time, but I will try to find a spot to be alone--perhaps back to my car. Thank you for the Scriptures you shared also. Well, it is late and I guess I just need to try to go rest. My little girl has an orthodontist appointment (for her braces) tomorrow at 10:20 and it is already 2:00 AM here. God's blessings to all of you.

Lanew
02-16-2005, 08:39 PM
Please keep us posted on your son, He will be in my prayers each day. you to will be in my prayers you need His Loving Arms Around you also.God Bless you and your Family.I know God heard our prayers. :angel:

xtina0706
02-16-2005, 09:10 PM
I am sorry to hear what you,your family and son are going through right now.I cant imagine what it must feel like knowing something so bad is waiting.I too lost my 14 month old daughter a month ago.She had a heart defect when she was born and had had 2 heart surgeries.She was doing fine until last month she got a cold and the infection spreaded to her organs.I'm still waiting on the hospital on the autopsy.But what I wanted to tell you is that at first you feel like your world is going to end but it does get better.You think about them everyday but about the good memories you had together not about what happened.Your family and friends also give you a lot of support which really helps also.I hope you feel better.God is with us all.

dreamer79
02-16-2005, 10:57 PM
I am so sorry to hear about your son (((hugs))) let him know now how much you love him. Give him all the hugs and kisses now him wish you luck!

pillzpillzpillz
02-17-2005, 09:34 AM
Prayingmom,

As I write this, I have tears in my eyes. I have an 18 year old boy whom I love dearly and I am a survivor of a very rare, fatal form of small cell ovarian cancer. I had my 18 year old when I was 18 and then I had my second son when I was 21 - I had a planned c-section with my second son b/c of a tumor on my left ovary - at the time they thought I had a fiberoid cyst (normal in pregnancy) but it wasn't, it was the worst thing ever- only 5 women in the USA have survived this cancer past 5 years, I am now the 6th - Please don't lose hope, I was 21 when this happened to me, I went through intensive chemotherpay AND radiation therpay without knowing if what I was going through would even work or be worth it - -was I using what time I had left being sick from chemo? We didn't know, but I HAD to try, I wanted to live and see my kids grow - I remember falling to the floor and begging the Dr. to stop talking (when we were told) I couldn't hear anymore - I didn't want to die.

Your son has age on his side and he is still here, there is STILL HOPE. I am so sorry for what you are going through, I have no clue what it must be like to see your child go through this, I just know what it's like to go through it. I would imagine my mom and dad would be able to identify with you and your husband. It was hard on me to see the pain I was causing my parents, to know that my dad was crying at my bedside. Please keep the faith...I am going to pary so hard for you and your family, I believe in the power of prayer. Your son is going to live through this and this time in your lives will become a distant memory~
Pillz...

Ruth6:11
02-17-2005, 02:02 PM
I am so sorry to hear about your son. I know that no one, even God, has guaranteed ANY of us life on earth forever. God understands more than just how to heal... He also had to watch his son die...

Sometimes what you pray for changes.
I remember that when my Dad was diagnosed with colon cancer I prayed for a miracle - that his Stage IV cancer would disappear. Then, over the next 4-5 months my prayer changed. I prayed for him to not be in pain, I prayed for him to be at peace.

God did answer my prayer.
:angel:

eddiesbaby
02-17-2005, 02:08 PM
Hi. I am so sorry for you and your son. I have a seven year old, and I too cannot imagine this. I am so so so sorry and I will pray for you.

If it helps any, just remember that there IS a Heaven and God has a reason for everything, even tho sometimes it seems like a cruel thing to take someone so young.
He isn't dying, he is going to a better place. One day, far from now, you will also go there. God has a reason for everythng he does!

Prayingmom
02-17-2005, 07:09 PM
Thank you for all your prayers. I guess as far as what I pray for--well as long as my son is not suffering or in pain physically (though there is always the mental anguish of a terminal prognosis)I pray for healing here. We have been very fortunate in that respect, so far. Sure he suffered through 6 weeks of radiation that put him in a wheelchair for a month in summer 2004 and he suffered the torture of chemotherapy for almost a year and one surgery to remove cancer and several bone marrow biopsies--and it has been a very, very hard year, but the tumors have not been painful for him so far and I hope they don't start pressing on things and causing him pain. I will keep praying for complete healing here on earth and believe with all my heart that if it is God's will my son will be healed. God is able to heal--I know that he is--but he doesn't always heal every person. If he is not to be healed I will pray that God would be merciful and that he would not have to suffer --that he could just slip away from us in his sleep. And then, oh how I will miss him.

pillzpillzpillz
02-18-2005, 08:02 AM
Prayingmom~

Please, keep faith...I know that you are listening to the Dr.'s and I am NOT discounting what your son has been through - I know full well what he has been through, I too went through radiation and chemo along with very painful biopsies when I was 21.

I wanted you to know what your son may be feeling about you and his dad - Being in your sons shoes, it was hard for me when I knew that my mom and dad were sad about me all I wanted was for them to not have any pain from what I was going through - - I didn't want to be a source of sadness for them- they did a very good job at not crying in front of me of being scared. I know when I was first diagnosed, I went through many emotional stages to finally, acceptance. I didn't think I was going to live.

Anyway, I am hoping and praying your son is going to have a remission - I am praying so hard....I hate to think that he won't make it...I don't even know you guys, but I can feel the pain in your posts and I can't help but get caught up in this and PRAY he will have a sudden remission. Something is drawing me to you and your posts...

Pillz

Samantha317
02-19-2005, 07:13 PM
I think God must have led me to this thread. My heart aches for you and your son. I just want you to know that you, your husband and your son are in my thoughts and prayers.

Sam :angel:

Euclid
02-20-2005, 12:36 PM
Don't give up hope! Spend every last minute you have! Were all here praying for youre son!

Lanew
02-20-2005, 06:25 PM
I pray today that your son is doing better, I pray that he gives you the peace in knowing he is there every step of the way. God Bless your Family. :angel:

Prayingmom
02-21-2005, 04:05 AM
Pillz, Diggadog2, Samantha, Euclid and Lanew,
Thank you all for stopping by here and for praying for my dear son. I know that God can heal -- no matter what -- but things just don't look good for my son. There is a longer message over on the cancer board that I just posted. There may be an opportunity for my son to participate in a clinical trial--we'll see tomorrow.

Thanks so much for caring.
prayingmom

pillzpillzpillz
02-22-2005, 08:06 AM
I am not a church going person but I belive in prayer:

Dear Lord, please bring comfort and your healing powers to this family in need. Please take away any pain their son is going through and bring comfort and even joy as they wake each day - please lord, give this child the time he needs to see his family through any transitions you have planned for them - be it life or another journey.

-Amen

Prayingmom
02-25-2005, 03:34 AM
Hi Everyone,
Pillz--Thank you so much for praying. It means the world to us to know that people are praying for us and for my dear son.

Things are about the same. My little girl has a cold and my second son has hurt his back skateboarding, took him to the doctor today and my third son had an orthodonist visit today--just normal things. I wish that were all we had to deal with--just normal things. It's hard to imagine that this is my life--that doctors have told us that my precious boy is dying. He still seems so strong, so tall, so full of life. He can still jump over fences with those long legs of his. But he has these lumps that we can see and we know that they are cancerous and we don't know what else this cancer is doing that we can't see. His little brother who is 16, when we were first told that big brother's cancer was terminal, said, "Mom, it won't kill him--he's so strong." and I told him that cancer can bring even strongest man down. I just watch my son sleeping sometimes--just wishing time could just stop here while I still have him or that Jesus would just return now to take us all home--so there won't be that pain of separation.

Just been thinking about deaths of those I've loved.

When I was about 10, in 1966, the first tragedy I can remember occured in my life. My uncle--my dad's youngest brother--was cutting down a tree on the hillside above the old homeplace. My grandmother had been to the barn up on top of the hill. My uncle saw her walking home, but he didn't see that she had turned and started back to the barn, possibly to check on a new calf--we don't know. The saw was still on when he saw his mother in the path of the falling tree. Later, he remembered that time seemed to stand still as the tree stood and then began falling. The saw was still on and was loud--he yelled, "Mom, get out of the way!" She probably never heard. She died immediately when the tree hit her. My favorite grandma--the closest thing to a saint that I've ever met--died immediately. She was 66--born in 1900. She married at 16--we grandkids could never understand why she married our grandfather--who was not a saint at all in many ways--we called him "Groucho" because he was so grouchy and hard to get along with. She was so good, kind and caring--sang hymns as she did her work all day, a woman of prayer who had sent 3 sons into World War II and all 3 returned home. My dad was one of them - only slightly injured by shrapnel on the beach on D-Day. One son had been a prisoner of war and had escaped and another was injured in such a way that he could never have children(we kids knew that, but not details), but he married a wonderful widow lady with 2 little boys, whose husband had died of infection(when there were few antibiotics) from a gunshot wound received in a hunting accident. My grandmother was at church every Sunday and was overjoyed and proud to be able to fill a pew with her grandchildren of which she had 22--she taught the primary Sunday School class for 50 years. She truly lived by the saying, "If you can't say something good about someone, don't say anything at all." We never heard her complain or say anything bad about anyone. She was part-American Indian and we've always been proud that we are, too and even at 66 her hair was still black (no gray at all and no dye). I've always thought that it was partly because she turned every worry over to the Good Lord and didn't carry unnecessary burdens to worry herself gray as we so often do.

My mother's father who had a stroke when I was 3 in 1959, died the year after my grandmother, in 1967. His left side had been paralyzed and he had been crippled all those years since the stroke, but he sat on the couch all day long reading his Bible. That's how I remember him most. He would put the date when he read it through again--many times after the stroke. His left lip turned down because of the paralysis of his face made me think for years that he was angry. It really wasn't until my own father had a stroke 3 years ago that I truly understood that he couldn't help it, that the stroke did it.

Then, an even worse tragedy occured. My little brother, 18 months younger than I, died in a car wreck on July 2, 1972. He was almost 15. We had fought as children, but at some point, between the ages of 10 and 12, I decided that TV shows and such were not worth fighting over and also had learned what a really neat person my little brother had grown up to be. We were friends. I liked being with him. We stayed up watching scary movies late at night. Billy had been told never to ride with this particular cousin (the son of my mother's sister) because he had been clocked going 130 mph and had received a reckless driving ticket. There was no sign that my cousin had been speeding on the little dirt road. The truck just went off the side and started rolling. By the time it rolled to the bottom of the hill, my brother's neck was broken and he was just gone, his face began to turn a darker color immediately. One cousin, the driver -- his nose was severed, but repaired by plastic surgery and the other cousin had a broken collarbone. My parents were heartbroken. My mom fainted when she arrived at the scene and someone suggested putting her in the ambulance with my brother, but someone else had better sense. She couldn't eat for days. The only thing she could keep down was coffee. She lost 20 pounds in those first few days and she looked skeletal. Me, at 16 -- I was now an only child in a very sad family -- so confused. I had always thought, if my parents wouldn't let me do what I wanted to do that they just didn't love me and didn't want me to have fun. Now I saw how foolish I had been--they just wanted to protect me. I felt I didn't deserve their love--I had lied to them and gone places without them knowing--I was the one who deserved to die, not my good hard working brother. In a round about way, God used that to show me that even though I am undeserving (aren't we all undeserving) that He loved me and sent His son to die for me. I prayed to receive Christ when I was a senior in high school when I visited the Christian college I would attend for 2 years. One of my cousins, the sister to the one who wrecked the truck, had always been one of my best friends; that is until she wrote a letter that said, "People say that your parents are crazy. That all they talk about is your dead brother." I never answered her letter and have never had much contact with her since then. Before this I had wanted to be just like her and she was not a good influence on me. My parents did the best they could after my brother died. People just expect you to get on with your life after such a tragedy. People who thought they were crazy, just couldn't possibly understand what they went through in losing a son. Two years later they had another baby. This brother was 18 years younger than me. Though my parents tried to move on, the sense of loss remains even today. My youngest brother was a joy to them. He still lives with them, but has OCD(obsessive compulsive disorder).

Ten years ago, my dad's youngest brother--the one who cut the tree(above) died in a tractor accident just around on the other side of the barn from where my grandmother died. We will never know why the tractor went off the side of the hill (some thought he perhaps was looking over at his salt lick for deer across the creek) where it rolled crushing him--he was alone and alive under the tractor for several hours.

Now my son has terminal cancer. I've thought about advice even I have given my mother. I've told her that you can choose to be happy--that it is up to you, yourself. I just didn't understand. You really can't understand until you've lived it and even living through my brother's death isn't the same. Right now, I don't feel that I can choose happiness. This is a very sad time. We can laugh and perhaps for a little while get our minds off the worst thoughts. But the thoughts are still there, just under the surface. We do have faith in God--faith that no matter what happens in the end it will be okay--this world is not the end. We have faith--though we don't understand how with such a tragedy, that God causes all things to work together for good to those who love Him, who are called according to His purpose. God is in control of our lives--if He were not we would completely despair.

We had such hopes and dreams for our son, not that we were planning his future, but we just knew that he would accomplish things with his life. His life has not been trivial. We will never forget our dear sweet son, just as I have never forgotten my brother.

Thanks once again for your prayers. The doctors are still considering what treatment options are still available to us. I don't know if anything can offer hope for a cure other than the healing hand of God, the Great Physician.

kerry1
02-25-2005, 03:05 PM
"Mom", I'm so sorry.
I don't know why God heals some kids and takes others back home with Him. I don't know the reason (if there is one) that an 18-year-old has to suffer like this. All I know is that life goes on, and when our mortal bodies wear out, there is new life waiting for us. I'm a Christian, but I don't think you have to be Christian to be saved. I honestly don't know the rules. I just know I've seen "peeks" of the other side and it is peaceful and beautiful there. There's no hate, fear, pain or prejudice. I hope your son gets better, but if he doesn't, it isn't the end. You'll meet up with him again. God bless all of you.

susieq0726
02-25-2005, 03:35 PM
"We had such hopes and dreams for our son, not that we were planning his future, but we just knew that he would accomplish things with his life. His life has not been trivial. We will never forget our dear sweet son, just as I have never forgotten my brother."




Your son HAS accomplished many wonderful things in his life. He has brought great joy to you and your family.
Only God truly knows what's best for your son now. Though we sometimes don't understand and hurt from God's work, we must believe in him and his love for us. He will take good care of your son. My prayers are with you and your family.

Prayingmom
02-28-2005, 05:24 AM
If my son is taken, although he has brought great joy into our lives, being our firstborn, his will always seem to be a life that was cut short. That was the hard thing in dealing with my little brother's death in the car wreck when he was almost 15.

It's one thing when our grandparents pass away--even if it is a tragic accident as with my grandmother--still you can look at their lives and think--they lived a good life--they accomplished a lot. They married, they had children, etc. They left a legacy. It is quite another when it is a young person who dies either through disease or accident. It would seem that their potential was never fully realized and then there are years and years of missing them and thinking how old they would be now. My brother would be 47 now. I'm sure he would have married young and had a houseful of children and probably be a grandfather by now.

Suzie Q, Kerry 1 and others, thank you for your prayers for my son. Praying is the most important thing we can do.

tintx
03-01-2005, 12:04 AM
Prayingmom,
I'm so sorry for what you, your son, and family have been through and may be facing. I wouldn't tell you to give up hope for a cure/remission, but you may also need to start preparing for the best death possible for your son. That may sound awul, but there are things that can be done to ease the transition for him. I encourage you to get information about the needs of the dying so you'll be prepared to do what's necessary to support him through this, as well as getting the support you need. You've been entrusted with this, and it is an opportunity to give him a precious gift. I hope this makes sense to you, and maybe he will have a miracle. But if the miracle isn't what you expected, I'm sure you'll rise to the occasion.
God Bless You,
Tintx

desertflower
03-01-2005, 02:12 AM
Prayingmom,

I am so sorry you and your family are going through this. I have said a prayer for you all. God bless you.

pillzpillzpillz
03-01-2005, 08:02 AM
Prayingmom~

How is your son today? Please check in and let us know (if you feel like it of course) I have been praying and would like to hear from you, if you are up to it :)

-Pillz

Prayingmom
03-01-2005, 09:17 AM
Hi everyone,
Thank you so much for your concern for my son and us. Things are still the same--no changes that I know of. I still fear even asking him if there are any new lumps or if the ones he has are growing or if he has new symptoms. He doesn't complain of any pain, but he would try to endure without complaining. Since we have talked to hospice, now I know that things can move pretty quickly with them if we need them--as things could change very quickly with this aggressive cancer. It was first in his foot and grew there with absolutely no symptoms so that when he was diagnosed it had already spread and had completely taken over his bone marrow. So the cancer seems to like growing in his bone marrow and will probably come back there again, barring a miracle. We just pray and pray, and feel so helpless as we watch our son, who to all appearances is healthy, and have been told that it is inevitable that it will come back. His friends are in denial--no, he won't die, they say--we won't let him--like they could stop it themselves. Some of his friends visited and spent the night Friday and Saturday and I had some worries with them, because one brought a girl on Saturday--I ended up losing sleep all Saturday night--I left a message about it on the Teen Health Board. After responses on that board I feel that I made a very bad choice.

Thank you all, Pillz, Desertflower and Tintx and the many others who have stopped by and are praying for my son. Please pray for the mercy of God that He would heal my son--and I hate to even put this down--put that if he is not to be healed that God would grant a merciful death for him and comfort and peace and healing for us all.

4given1
03-04-2005, 01:56 AM
PrayingMom,

I am so sorry to read about your son, but please don't lose hope. Please read James 5:14-16. I implore you to discuss these verses with your son, and with complete and child-like faith, do what is commanded. It is NOT God's will that ANY of us be sick. Yes, we all may have an appointed time and not a second longer, but God does not will that the time we DO have be spent in ill-health.

My precious, beloved Grandfather who just last week was called Home to Heaven, was divinely healed of Stage IV lung cancer. I was fortunate enough to witness this miracle. His father before him was healed of a serious heart ailment. Both men did what was commanded in James.

I will be praying for you! :)

pillzpillzpillz
03-04-2005, 08:14 AM
Dear Lord,

As you know I am not a devout church going person but I DO blieve with all my heart. Please bring to prayingmom's son the feeling of overwhelming love and take away any fears and pain he may have while he makes his final journey home to you. Also please, if it is your will, bring a sense of calm and understanding that a parent needs to see a child leave this wonderful place before them - please help ease the pain only a parent losing a child completely understands. I love you dear Lord as does this family that is quetly leaning against you in this tough time. IF healing their son is something you wish for this family, please do so as soon as you can so that this child can see some of the world still waiting for him. Either way, engulf this family in your love and calm, embrace them and bring to them contentment that I know you can.
-Amen

momsbrandi
03-04-2005, 02:55 PM
Praying for you, your family and your son. God is in control.

katkat
03-05-2005, 08:50 PM
Why would God heal one persons child yet let others die? I do not think God heals. I think that he lets life simply happen.
My heart feels so sad for you. I nearly lost my son three times due to Crohn's disease. I know that you feel so helpless. I wished I knew something to say that would help you cope but you and I know that nothing can make this acceptable to you. My heart goes out to you.

pillzpillzpillz
03-07-2005, 08:44 AM
Why would God heal one persons child yet let others die? I do not think God heals. I think that he lets life simply happen.
My heart feels so sad for you. I nearly lost my son three times due to Crohn's disease. I know that you feel so helpless. I wished I knew something to say that would help you cope but you and I know that nothing can make this acceptable to you. My heart goes out to you.

I respectfully disagree with you - I do believe God CAN heal - he does heal some and others he calls home. I believe he heals ones who still have work to do here and for others, he calls them home. I believe God healed me, I had a fatal form of cancer and I lived - it has been 14 years for me now and I know why I was left fere....I have a spcial needs child (he was born c-Section and I had a 5lb tumor on my left ovary that was cancer) and he is thriving as I am able to care for him and the rest of my family - I have been tested by his needs but I am dealing well -- I am very blessed - I thank God for helping your son with Crohn's.

-Pillz

katkat
03-07-2005, 09:00 AM
I see no reason for God to take anyone before they are old. What would be his purpose? I didn't say he couldn't heal. I just said I don't think he does. Did you get cancer treatment? As you well know some cancers do respond, some don't. You are one lucky lady. But stop and think about it.....I know of many, many people who died that had someone that needed them to take care of them for one reason or another. Why did God spare you for that very reason but not others? Why does God allow innocent babies and children die at the hands of abusers, disease and suffer at the hands of monsters? I guess this is getting off subject,,,,, I just look at things realistically I guess. My heart breaks for anyone suffering by losing a loved one, especially a child. As for my child he is grown up and suffers daily with his Crohns. His depression and pain has lead to drug and alcohol abuse. You might think God spared my son from death, three times? But why help him a little and not all the way? If it was God that helped my son why didn't he cure him? What about modern medicine, don't you think it had something to do with his survival? I do credit God giving scientist the brains to create the medical treatment that my son has received. But he is in no way cured and well off. He lives in a vicious circle of pain and despair, yes now much at his own hands. I will not judge him because I know what his life is like. Even talking to him on the telephone I can hear that he is in pain.

katkat
03-07-2005, 09:32 AM
I sound cynical and mean spirited........I truly don't mean to sound like that. I guess there are many times when I prayed that I received nothing.
hugs to all.

pillzpillzpillz
03-07-2005, 11:13 AM
KatKat - I am sorry for your pain and I hear what you are saying - life isn't fair and it isn't fair that God takes babies and innocent children (or anyone for that matter!) and I have questioned daily why I lived. I don't know why I was spared but the 14 year old in the hospital room next to mine was at the end of her life. I was 21 at the time and surely had lived more then she.

When one goes through pain like you, myself and prayingmom it makes me question WHY?, just like you. I guess I hold on to hope that there is a reason for everything and that someday we all will be able to see why and understand because many times I don't understand. Sometimes I get so ANGRY to think that all of this hurt seems senseless and if there is a God WHY IS HE DOING THIS TO US!?? But then I try and remember what he did for us and also remind myself that we don't know right now why these things happen and maybe the secret to life is that one day we will know and will be free of pain and live in a beautiful tranquil place once we are called home, maybe then we will know? I have to believe in something or I might not have a reason to stay on this earth - yes, my kids are a good reason, but I could do without the pain that my son goes through with his needs etc.

KatKat - I can feel your pain through your words and do not at all feel like you are cynical - I could just hear the pain in your words, that’s all. I hope the pain will subside for you and I truly hope your son will be OK. My brother also is ravaged by alcohol and drugs to numb the pain he is going through as well, so I understand to a point (I'm not his mother, just his sibling) what you are going through.

KatKat, I hope you have a good day and that you will find it in your heart to forgive me for triggering unhappy feelings, I didn’t meant to sound like I know it all or am a preacher b/c I am nothing like that. This thread has brought religion out in me that I never knew I even had! The fact that Prayingmom's son is dying and she is sharing this private moment with us, is so sad and it touched my heart and soul.

katkat
03-07-2005, 02:03 PM
Oh Gosh you don't owe me an apology, honest you don't. I wished I did still have the faith that you do. I lost it somewhere along the way and now I have to fight to not sound cynical and bitter. I cannot understand the pain that we have to go through, and I wonder why others seem to have easy lives , they are born into money, brains and beauty and have life handed to them on a sliver platter while the rest of us get stuck with sick children, pain of our own and struggle our entire life just to get by. It seems my life is one bad thing after another. Right now they are testing tofind out why I have these white spots on my brain......is it Lupus or Lyme disease but most likey I will be diagnosed with MS later down the road? Who knows, I hope I didn't upset you or anyone else, especially praying mom. ITs not fair for me to tell her that there is no hope that God will save her son. It breaks my heart to think of what she may be going through.
I hope you all have at least a tolerable day, if not fantastic.
hugs to all
Katkat

pillzpillzpillz
03-08-2005, 08:24 AM
Hi KatKat - I hope the spots are nothing - I know the feelings of being scared of the unknown. I know what you mean about some people having it all - I wonder about this too - sometimes I even think "why didn't I get born into money!? I struggle paycheck to paycheck and it's a big deal if I am able to go out an buy new sheets for oue beds for crying out loud! I also wantto tell those that say money can't buy happiness to just give me a shot at it b/c it may not buy happiness but it sure helps!! LOL

I was also handed some scary news yesterday - possibility of colon cancer...why not, I went through Ovarian why not colon as well?! My first wish was to be able to see my children grow up (or live long enough so they would remember me) - my oldest is 18 and my youngest is 14 - I want to see BOTH of my boys graduate highs school and get a start on their lives. I am not ready to go through chemo and radiation again, I don't think I can do it. I am jumping ahead again and need to stop. Maybe they will find nothing with the colonoscopy - That is how I need to think.

Hugs to you KatKat - I hope you feel the love the I am sending you. You are loved my friend. Also, to prayingmom who started this thread, love to you too - and your beautiful son.

katkat
03-08-2005, 09:19 AM
Thanks, Giving, I will check that out later.
Pillz, (funny name to be calling you) I totally agree with trying to find out if money can buy happiness. Hey but I want the rest too, beauty and brains. I'd like to be political brain smart too. I get a headache trying to read some of the newspaper. lol
Do you take any supplements? My brother swears by Calcium as a cancer preventative and cure. From reading I think it does have some points leaning that way. I need to start taking it right away.
JUst remember that early detection and treatment is the best thing so don't put anything test or treatments off. I know how scary it is thinking about not being there for your kids. I had a lump removed from my neck in 91, my kids were in middle school at the time and I about how a nervous breakdown until after the results came in.
Once again the treatments are not fun but you have to start as soon as possible to increase your chances.
take care.
Kat

Prayingmom
03-09-2005, 11:52 AM
Dear KatKat, Pillz and others who have stopped by here,

Thank you so much for caring and praying for my son. That means the world to us. Sorry I haven't posted in awhile. I've been busy and unusually tired. I don't know why I've been so tired, but this week I've just gone on to bed instead of staying up and posting, although I have read the posts. My son had a wonderful weekend with his girlfriend, Katie, visiting. One of his best friends is out for spring break and will be here a lot this week, so that will be good. My son saw a new oncologist this week--PET and CT scans are scheuduled--will post more about that on my thread on Cancer--relapsed cancer.

KatKat, I'm so sorry for what you've been through with your son with the Crohn's disease and his problems now. About God healing---I do believe that He still heals some people. I don't know why God heals some and not all. I know that God's ways are higher than my ways and that I can't fully understand everything about God. I believe that God is good, that He loves us so much that He sent His only Son to die for our sins, that there is a reason for the things that happen. I don't believe that God causes the evil or bad things that happen, but He allows them and that God can use even the bad things in a Christian's life for good. Sometimes things are so good that we think we feel self-sufficient like we don't need God. That is the danger of worldly wealth--often the wealthy think they don't need God. We live in a fallen world. Suffering happens to both the good and bad, the rich and the poor. I think about Job in the Bible sometimes. He had it all: wealth, respect, health, a large family, good kids, huge herds of animals, and then he lost everything in just one day. All 12 children were killed suddenly, the sheep were burned up, oxen and donkeys and camels were stolen, servants killed, Job was covered in painful boils sitting in the ashes, and no longer respected as it would appear the wrath of God was upon him. Job is left with his wife who eventually encouraged him "to curse God and die." But even in all this Job didn't sin against God. When he heard all the bad news, "Job arose, and rent (tore) his mantle, and shaved his head, and fell down upon the ground, and worshipped. And said, Naked came I out of my mother's womb, and naked shall I return thither: the LORD gave, and the LORD hath taken away; blessed be the name of the LORD. In all this Job sinned not, nor charged God foolishly." Job 1:21-22.
Job said this to his wife, "What? shall we receive good at the hand of God and shall we not receive evil?" One other thing I remind myself of is that this world is not the end. The time we are here on earth be it brief or long is very short compared to eternity. All of my 4 children have accepted Jesus Christ as their Saviour and I am very thankful for that. No matter what happens, whether they live long or short lives, I will see them again in heaven--I have that hope.

When I cry about my son, it is because I hate to see him suffering now and the thought of the suffering he may go through and that I, myself, can't make it all better the way mommies are supposed to. I cry when I think of how much we will miss him and the years and years that we will miss him. I'm crying for us -- missing him, but he will be in a better place. (It has been 33 years since my little brother died and I still miss him so.) I would give my son hope and a future if I could. I wanted him to have a good life to go to college, have a fulfilling career, purpose, dreams, a loving wife, happy children, good friends. Helpless, but not hopeless. All we can do is draw near to God and pray for healing. It is far better to draw near to God than to turn away from Him in times of trial. At least, in God, we always have hope.

KatKat and Pillz -- I hope these most recent scares--the white spots and the possibility of colon cancer turn out to be nothing as more tests are done and that everything will be fine. Kat -- just don't take too much Calcium. I did and ended up with kidney stones and think that there might be a relationship there. I will lift you all up in prayer also. God bless you both.

katkat
03-09-2005, 03:00 PM
OMG you are so brave, your post made me cry, cry for you, your son, for pillz, and I guess for my loss faith. I remember the story of Job but you told it so beautifully. I will pray that God keeps his hands on you and your son and the rest of your family. I don't know if God does much listening to me these days but I'll give it a try.
I just wanted you to know your post touched my very soul.
hugs
Kat

noaone
03-09-2005, 04:52 PM
im sorry to hear this. i will pray for him

sungirlcali
03-10-2005, 07:07 AM
You are in my prayers.

pillzpillzpillz
03-10-2005, 08:24 AM
Dear KatKat and Prayingmom,

You both have effected my life so much and I have never met either of you in person - it is interesting how I can connect with two people that have had such an impact in my life. Prayingmom, I feel you have restored my faith, I had faith initially, but not like I do now. I few you are an angel on earth and I know that I may sound corny, but I truly believe that God has chosen you to teach and that you have, to teach and to help your son in his journey, whichever journey that may be. KatKat, you are a special person that has been tried by life circumstances and almost lost sight of faith and God, but now I feel like some faith has been restored. You are special and loved. I have a wonderful feeling that both you and I will be OK - we were both drawn to this board and this particular posting for a reason I believe.

-Pillz

katkat
03-10-2005, 09:19 AM
I was thinking yesterday the same thing Pillz, maybe God sent us together for a reason. I got my test results yesterday from all the blood work they did. All came back normal for Lupus, Lyme,and all those other diseases that I never heard of. That only makes it more likely that mine is MS but its so hard to diagnose. No more test will be ran until October. I plan to go on with my life as if nothing is wrong unless more symptoms appear. I also plan to start taking the time to pray more and try to have faith that God will listen to what I have to say and will include both of you and your families in my prayers. I don't understand God, why people have to suffer, (Tsunami, etc) I guess its not my job to understand. I hope you both will come to this thread and post your updates so we will know, it automatically comes to my in box so I will know when ever anyone responds to this thread.
When the warmer weather gets here I will be online less because we own a campground and I am outside all the time. But I will check my email each day and will see when someone post in this thread.
hugs to you both
Kat

pillzpillzpillz
03-10-2005, 09:47 AM
I for one definitely want to keep in contact and thankfully when you or prayingmom responds, I get an e-mail letting me know. I want to know how you make out KatKat and I think your approach of not focusing on sickness, and rather going about your normal life is a very healthy way of handling the situation. Worrying doesn't change anything and can consume most of your life if allowed. I will do the same once I get my appointment for my test. Right now I am still waiting to hear when I have to have the test done, but once I am done, I plan to live my life as usual no matter what the results.

Prayingmom, if you can find the time to keep KatKat and I up to date on how you and your son/family are doing - - that is IF you want to share those intimate thoughts and feelings with us, please do. You are truly a blessing :)

Hugs and God Bless both of you~

-Pillz

Janet S
03-10-2005, 04:42 PM
God Bless You All,
I am so moved by your story of Job from the Bible. Job had such faith! I, too, believe that God does NOT make these bad things happen -- but somehow, because of the Fall, our lives are plagued with illness, accidents and other maladies. The Good News is that Jesus Christ, our Lord and Savior, redeemed us and gives us all the opportunity for everlasting life! Our hope of eternity with our loved ones in heaven gives us joy!

I was so impressed when the Pope stated that he joyfully accepts the suffering that he is experiencing - he says that it makes him "closer" to God, because Jesus suffered so much for us. I know you must be suffering with your son and perhaps, thinking that this makes you closer to God, may help in some way.

My prayers are with you and your family and I know that you are praying constantly - it is the truly the greatest comfort to pray.

Love,
Janet S

Prayingmom
03-17-2005, 01:37 AM
Hi Everyone,
Sorry that I haven't been on lately. We still haven't received the results of last week's PET scan. Tomorrow my son will have an MRI of his head and a CT of his chest and abdomen. Waiting for test results wears me out. My imagination runs wild. He has the tumors that we can see on his arm, shoulder and chest and it is so scary to think about spread of the cancer. I have spent a lot of time researching antiangiogenesis drugs this week, since that is what the clinical trial is going to be.
Please pray for good results and good response to the drugs and no bad side effects.
I posted on the cancer list, too.

Kat and pillz -- I'll try to keep in touch--sometimes I just get so tired and when we don't have any news I don't post a lot. Janet -- thanks for stopping by and for praying for my son and for our family.

rainswirls
03-17-2005, 06:50 AM
you and your family are in my prayers!!im the same age as your son and im so sorry that he has to go through this , not to mention the emotional hurt you and your family feels.But remember you can never pray to much.God is wonderful and can do wonderful things.I know things are probably so hard for you right now and you just want to break down but remember your son needs your strength too. Ya'll are in my prayers!

katkat
03-17-2005, 07:40 AM
Prayers on the way lady. I can't imagine what you are dealing with emotionally right now. Life is so unfair.

Prayingmom
03-17-2005, 07:55 AM
I haven't gone to sleep all night just thinking about the doctor's visit and getting scan results. It is just one hour until I need to get dressed to take my son for the scans. I may try to rest a little now. We have to leave at 8:00 to be there for the 9:00AM scans.

froggy123
03-17-2005, 12:03 PM
Hello prayingmom,
As I read through all the posts, I found myself with tears in my eyes. I'm 17, and can't even imagine what you or your son are going through. I do know what it feels like to be your son's friends though. A close friend of mine has cancer, she's 18 next week. In December, she was given 3-6 months to live. It's so scary thinking that we'll loose her. It was so surreal when I went with her family to do funeral arrangements. Her parents tell me and others not to be sad, that we are the ones that are keeping her healthy longer. That it helps to have loved ones near. That when she's alone, she just looks at pictures of when she was healthy and cries, but when friends are around, she has her life back - she smiles and has her *spirit* back. I think what scares me is that she is planning a wedding for April with her boyfriend of 3 years. I wonder what will happen if she passes away before then... It's scary! While this probably doesn't help you much with your son, it may be nice (for lack of a better word) to know that your son isn't alone.

My sister-in-law also has cancer. She was given a year to live when she went off chemo about a year and 2 months ago. She has a 3 year old and is currently pregnant (due in July). It seems like she's been spiraling downhill since she had to go of all cancer treating drugs because of the pregnancy. By just talking to her, you can tell she's very weak - she has to take a couple big breaths in order to finish a sentence. Also, doctors can't figure out why, but they can't get her blood sugar below 400 (she is diabetic) but has never had a problem keeping her sugar levels in check. She keeps saying that she just wants to live long enough to see her 3 year old go to school. I'm thinking...I want you to live long enough to see your baby first. We've been told that it's a little more than a 50-50 chance that she will die during her c-section. Now, docs are considering doing an emergency c-section at 7-7.5 months pregnant because of her health. Which would make the baby being born in May? How scary! I think it's a little peace of mind for everyone knowing that the children will go to a good home, my mom is filling out papers tomorrow for adoption once my sister-in-law passes away. She was talking to my mom the other night about me going to college and my mom said that her kids will go to college too, and my sister-in-law was like "oh, you just made all my dreams come true!" It's sad...sometimes I don't know waht to think...

Especially when my brother (father of both kids) is on drugs and really doesn't care. Instead of being a dad, he treats his 3 year old like a little sister - he doesn't want the responsibility. It just kills me that he isn't even trying to stop using drugs (marijuana, cocaine, and who knows what else) when his wife is going to die and he has kids. Not that I'm wishing death upon my brother because I'd be heartbroken, but why can't God take the ones that are already screwing up their lives instead of people who really truely want to live, you know?

The only thing that I can think of is that He is taking all of these great people (including your son prayingmom) to teach everyone in those peoples lives some sort of lesson. I read a bedtime blessing bood every night, and one of the days it just hit me...we aren't supposed to know why God does things like this - even though we all try our best to figure it out and justify it - but we cant. If these people do pass away, it must be in His plan. Instead of thinking why my friend, why my sister-in-law, I guess I'm coming to terms that God must be making these people go through such a hard thing - along with everyone involved - for some reason, and I'll have faith that everything works out knowing that there must be a reason beyond what I can comprehend.

I think I'm done blabbing now, I guess I needed to vent a little. But I will definately pray for your son - prayingmom.

Prayingmom
03-19-2005, 01:37 AM
I just posted a message about my son on the cancer board, but thought I should let you all know the results of the scans here, too, since you all are praying for him too. As bad as we hated to hear it, the news was as we should have expected. Though we had hoped the cancer is not spreading, it is. There are numerous involved lymph nodes now in the retroperitoneal area of his abdomen and there is spread to a bone called the illiac crest. I'm not sure exactly where these areas are, but that's what they told us. The MRI of his head and neck was clear--no sign of cancer--so not sure what has caused the headaches. His blood counts were still good: Hematocrit 46, Platelets 205,000, and White Blood Cells 4.8, so it may not be back in the bone marrow--but blood counts are not the same as a bone marrow biopsy.

He started the oral investigational anti-angiogenesis drug called PTK. It made him nauseous and he threw up by the time we got home. He took it again today and was nauseous again, but not for as long as with chemotherapy. This type of drug has never been tested in someone with his type of cancer. It is only a Phase I trial which means that they are mostly checking for the safest most effective dose. Please pray with us that God might use this to heal him and give him years of life.

My son was talking about working at the hospital this summer where he used to work in the Information Systems area. I do think that would be good if he really felt like it. This cancer is so aggressive that if it can't be stopped the time he has may be really short. I hurt for him--I would gladly give my life in exchange for his. Sometimes I start thinking about what I could have done to make things different if only we had known what was going to happen. This cancer has no known causes--but I think--what if he'd eaten different foods, lived somewhere else--would anything have made a difference? I feel as though I have failed him in some way to not be able to protect him from this.

Thank you for caring and praying for us, though we will never on earth see your faces.

pillzpillzpillz
03-21-2005, 08:27 AM
Dear prayingmom~

I just said a prayer for your son and so hope that the PTK medication will add several years to his life. I have heard of miracles happening with NEW medication. At one point there was a woman I was working with who's aunt was stage IV ovarian cancer - nothing they had tried worked. This was when Taxol was still in trial use and hadn't been approved by the FDA. She was given the trial medication and the cacner completly went into remission. She lived an extra 2 years and then sadly, did end up dying from her cancer, but what I am saying here is that if this new medication can work and IF it can add several more years of life for your son, I pray to God it will - I belive!!! I love your son and I don't know him, I keep thinking of my own 18 year old son who's x-ray just came back with a "shadow" in his left lung. I am praying it is nothing more then an old scar from an infrection as the Dr. said. He has been sick with a terrible cold for the past 6 months that get's better then worse but never goes away - much like myself when I was battling ovarian cancer 14 years ago. I am scared but still have hope he is fine.

Anyway, this isn't about me. I just wanted to give you som rays of sunshine and HOPE and my prayer.

Love,
-Pillz

Janet S
03-22-2005, 04:53 PM
Praying Mom, your wonderful son and friends,
It is so good that your son has plans to work at the hospital..info systems. He must be very talented and bright. I am sure you are so proud of him.

Given this week is Easter week, we have special prayers for you all. The Easter message is so joyous and triumpant! Victory over death!

I remember the Gospel story about Lazarus - he was already days in the grave and Jesus restored his life.

We pray that God restores you all and answers your needs.

God Bless you all!

stiletto23
03-25-2005, 01:31 AM
Prayingmom, I know you are going through a very very hard time. I'm sure everyone who has read any part of this thread has prayed for him and your family. With that being said, please try to be happy with the time you do have left with him. I believe in my heart that is what God would want. Do not make him sad with your sadness. Help him enjoy the time left and enjoy the time you have left in his presence. Might there be any place your son would like to visit? Maybe a trip to Australia? New Zealand? Take him somewhere beautiful! I know if I were going to leave this earth soon I'd want to do something like that with my family/friends. Even a nice beach or somewhere peaceful he could rest for a bit away from hospitals if he is not up to a long trip. Ease his pain in whatever way you can besides medicine. Get your minds of it the best you can. If you know this is terminal help him enjoy the rest of his life instead of dwelling on the suffering if at all possible. Should the lord decide to call your son home soon, rest assured you will see him again in God's grace with no more suffering.

SylAlien
03-25-2005, 05:07 PM
im 18 and my 19 yeard old friend just died 2 months ago of bone marrow cancer what a ****e dup thign to happen to a kid so young. he fought on and off for a year

last1
03-27-2005, 09:53 PM
Dear Prayingmom: It's almost April and so I don't know where you are with your issues right now. I am prayerful that you will have the support to move through this awful tragedy and that you have friends and spiritual support. You haven't mentioned Hospice? Are they involved? I have referred so many people to this wonderful organization and hope that there counseling support, nurses, social workers and volunteers can be of assistance. God bless. CS

pillzpillzpillz
03-28-2005, 12:01 PM
im 18 and my 19 yeard old friend just died 2 months ago of bone marrow cancer what a ****e dup thign to happen to a kid so young. he fought on and off for a year

SylAlien~ sorry to hear about your young friend.

Prayingmom-

Just wanted to check in and see how you and your son are doing as well as the rest of your family? I was happy to read about your son's interest in working this summer, he has a positive outlook which is so very importnant when battling cancer (remember, I was there at the age of 21 with a very poor prognosis).

Anyway, thinking of you and your family, especially your son - may God guide and love you and your family through this very difficult time and may his healing powers be shown through your son by remission or extended, pain free life.

Prayingmom
03-28-2005, 11:25 PM
Dear pillz, Janet S, stiletto23, SylAlien, cflas and others who have stopped by to check on my dear son,

Thank you so much for caring and praying. It means so much to us. I just posted a new message on the Cancer list that is very long. I won't put the whole thing here, but you may want to look at it. After taking the new investigational drug called for short PTK from Thursday to Sunday (4 days) he noticed that the visible tumors seemed smaller and softer. By Monday, they seemed smaller and less protruding to me. We had gone to visit grandparents 300 miles away during that time. I haven't noticed any more changes and almost wonder if it was our imagination--but I really think that there was a change. He will have a new PET scan before receiving the IV investigational drug Avastin on Thursday. Please pray that there is a noticeable shrinkage of the more threatening tumors in his abdomenal lymph nodes that (according to the scans done 2 weeks ago) are encasing his aorta. I'm so concerned that if they are ENCASING THE AORTA which is a major blood vessel supplying the lower body that his legs will go numb, and lose function--I really don't know what the scans mean.

He seems to be feeling fine right now, laughing, playing video games--his girlfriend, Katie and some other friends were home from college on springbreak and spent a lot of time over here visiting. My son enjoyed having them here. They went out to a movie, out to eat, etc. I so wish I could just video tape him laughing and talking so I could just be able to hear him again if he is taken from us. He just clams up and hides from a camera.

Thank you so much for praying. It truly means the world to us. We still keep praying for healing. When there are no known cures--I guess investigational drugs are the best thing to do as long as they don't cause suffering themselves. If only something will work that will offer hope to all those in our position.

wishn
03-29-2005, 02:34 AM
I have been reading your post, but everytime I start to reply....my heart just breaks for you and having a son who is 25, daughters 23 and 18....I think about what you are going through and the tears never end up allowing me to post. I had went to bed two hours ago but woke up a few minutes ago and wanted to let you know I am thinking about you. My day had lymp cancer and it was one of the most difficult things I have gone through. We learned my favorite...most awesome and loving uncle was diag. 8 weeks ago with the same type of cancer. Very sad news.

Please, please , please...never say you have failed with your son in stopping this thing. You are such a wonderful and loving mother....anyone who reads your post know that about you first and foremost. I wish I could find the right words, but in this situation...I think the only right words are...You are in my thoughts and prayers. Your son is so blessed to have you and other family. This is what assists in his healing.

I will check back in tomorrow to see if you have posted and possibly how you and your family are doing....

Hugs, prayers, kind thoughts,
Annie :angel:

pillzpillzpillz
03-29-2005, 08:52 AM
After taking the new investigational drug called for short PTK from Thursday to Sunday (4 days) he noticed that the visible tumors seemed smaller and softer. By Monday, they seemed smaller and less protruding to me.

Oh, I believe our prayers are working!! I am so certain when he goes back to the Dr. the Dr. will say that they are smaller - I am praying and praying for your son...Oh dear lord, please, please have mercy.

Please post and let us know what the Dr. says etc. from his next appt (if you feel you can).

Hugs~
pillz

DCV
03-30-2005, 11:46 AM
Its hard to let go, I know, we can only bear the cross we were given with strength, compassion and dignity. Make everyday as special as you can. In the end, we will all see our loved ones again in the next life. I truly bleive that they come back to guide our souls to heaven when we go too. Its sad for us, but a happy time of reunion for those who pass, because they get to see all those who went before.....

Prayingmom
04-01-2005, 02:14 AM
Hi everyone,
Scans done today show what seemed like to me --rapidly progressing disease-- and that the PTK must be doing nothing to stop it. The nurse practioner said "you've only been on the PTK for 20 days--give it more time." I'm afraid that time is something my son doesn't have much of anymore. I posted the exact reading of the PET scan on my other thread on the cancer board. My son had been planning a beach trip with his friends at the end of May when they all get out of school. I'm afraid that he will either be gone or in intense suffering by then. I have been crying(not in his presence) since we heard the bad news.

Thank you for your concern and for your prayers.

Tiffyholman
04-01-2005, 09:20 AM
I am so sorry to hear the news, you have to keep hope alive. I know it's hard believe me I just lost my mom a month ago. I pray for strength right now for you and courage, for the fight that your in right now. My heartbreaks for you, and know that you are in my thoughts and prayers daily since you started posting on here........

pillzpillzpillz
04-01-2005, 12:16 PM
Oh, I'm so very sorry - my tears flow along with yours but I am noT giving up hope..it has only been 20 days, lets just see how it goes from here....we can't change the path that the Lord has him on, I just wish we could see the path so we would know, but we must put our faith into his hands and follow the path. Thank you for keeping us updated. It must be hard to write this let alone live it...all I can say is that I wish I could take some of your pain away and promise you everything will be OK. I haven't given up hope and I believe many others here praying for you, your son and family, haven't given up either. Stay strong (you are so very strong!!) and keep faith and follow the Lord's path.

Hugs
-pillz

katkat
04-01-2005, 01:03 PM
I am so sorry to hear he does not seem to be responding to the medications. Is there other treatment they can try? My heart is breaking for you, I know how hard this has to be on you. No one thinks they will have to go through something like this until it hits home.
Pillz what about you? Have you found out anything about your condition yet?
hugs to you both
Kat

pillzpillzpillz
04-01-2005, 01:14 PM
I am so sorry to hear he does not seem to be responding to the medications. Is there other treatment they can try? My heart is breaking for you, I know how hard this has to be on you. No one thinks they will have to go through something like this until it hits home.
Pillz what about you? Have you found out anything about your condition yet?
hugs to you both
Kat

Hi KatKat - thanks for asking, it just seems so trivial compared to what prayingmom is going through. My colonoscopy found 4 polyps with pre-cancerous cells - having a past with cancer, this scared me. Luckily I went. Due to th radiation therpay (necessary evil) I had when I had Ovarian Cancer, my colon is lined with red blisters (along with the polyps) that lay flat against the colon wall. Due to medication I am on now, I wasn't able to be sedated and it was so painful. Anyway, I'm glad I went and I will need to go back every year for follow-ups - normally women in their 30's don't need to have this procedure done yet - the Dr. said had I waited until the usual age of 50, we would have been discussing how much of my colon to take as well as treatment plans - so I feel very lucky.

Thanks again for asking :)
-pillz

Samantha317
04-01-2005, 01:31 PM
Hi Prayingmom,
I just wanted you to know that you, your son and your family are in my thoughts and prayers.

Sam :angel:

katkat
04-01-2005, 01:33 PM
Early detection is key. What kind of medication would prevent you from being sedated for this procedure? I can't imagine going through that without sedation.
I've got very bad feet. They started going bad when I was only 19. I stayed home with my kids until they were in grade school; then I went to work in a factory full time. My feet got worse and worse through the years, long story short, two foot surgeries my feet are really bad and I was sent to a pain clinic. One day I was sitting in the waiting room looking around, they all seemed to be so bad off compared to me. I said to my pain doc that I felt foolish after seeing so many in such bad shape, he told me that even though they might have worse pain than me, it still didn't mean I didn't have pain. I guess what I am trying to say it is the same for you. Yes it is true Prayingmom and her family are going through hell right now, but you still have your issues and they are still just as real no matter what anyone is going through. It is good that you know you must watch your body carefully from now on. I Know that you know how very lucky you are to be cured of ovarian cancer, that is very rare.
I am going to be 50 this year. I don't even want to think about having that test done, but I know I should.
take care

pillzpillzpillz
04-01-2005, 03:03 PM
Hi KatKat - yes, please schedule your procedure as soon as you are 50 - it normally doesn't hurt and I have heard over and over that the worst part of the whole thing is the prep kit - the day before you have to drink this terrible stuff and then you are up all night long going to the bathroom etc. It's awful. Most people don't feel the procedure at all and a friend of mine from work went right to sleep and didn't wake up until after it was over. So, don't worry, it won't be too bad and is WELL worth it (even if you have to deal with the pain) I will be going back again and again to make sure my polyps never turn to cancer.

-Pillz

last1
04-02-2005, 09:53 PM
Dearest Praying Mom: I have read each and every message here since your first entry and I am amazed at the work you and your family have done in this space. You are opened your heart and your soul, and shared your pain in ways that so many people would be unable. ANd, in so doing, you have triggered an outpouring of love and sentiments from so many people that it is truly a miraculous thing. Each of us is touched by your courage and will and this is evident in the varying ways that people are reaching out. ANd, you, in the middle of all of this, manage to respond to them out of love and kindness freely given. You are a wonderful, miraculous, and courageous woman. Your entire family remains in our thoughts and prayers. Please keep us posted and, if there was something more that we could do for you, I feel as though it would be done. Blessings...CS

Prayingmom
04-05-2005, 01:15 AM
Thank you all for caring and praying.

sculpture
04-05-2005, 02:10 AM
I feel for you and I wish that all turns out well for you.

Prayingmom
04-07-2005, 01:14 PM
Hi Everyone,
Tiffyholman, pillz, katkat, Samantha, Sculpture, and cflas,
Thank you for stopping by, for leaving messages for me here, and for your prayers. You all have been so very kind. One of my son's doctors who treated him for the year of chemotherapy in 2004 called today. I have been keeping her updated with e-mails. We talked for awhile about my son. I talked about how I wish we could have added a different chemo during the time of radiation when he was off of 2 chemo drugs-a vulnerable time, and of hopeful treatments in the works--but lack of funding for the research. She talked about how his cancer - rhabdomyosarcoma - in him has always spread and behaved more like a leukemia. I spoke to her without the usual tears. We've lived this nightmare for more than a year now. In that time, I have cried millions of tears and I'm crying now. For now, my son is not experiencing pain--or at least not telling us if he is. No observable changes. Everyday like this -- good days -- if you can call them that -- when he can just live -- is a tremendous blessing, but these days are going by too quickly. How I wish I could just stop time somehow--stop the cancer--if just for a while--how long would I ask for--a month or two--a year--time for him to live and love and maybe marry--time for him to be in college.

Back before my son was diagnosed with cancer, in 2003 - in the spring - when he was a junior in high school, we had some disagreements. I think that most teenagers go through a rebellious period, but then come out of it. At the time, he was sullen and obstinate. He seemed depressed. He refused to do his schoolwork and sometimes refused to eat. He only wanted to play videogames. He said once, at that time, "I think you care more about my schoolwork than you do about me." After that, I backed way off on trying to get him to do schoolwork and just let his dad talk to him about it. I love him more that life itself and it was a shock to think that he saw things that way. I wanted to take him to a psychologist about the depression, but my son would never agree to go to a psychologist.

By the fall of 2004, as a senior, a lot of those problems seemed to have been worked out, but I noticed him making a lot of negative comments to his brothers. Not wanting to fuss at him at all -- avoiding disagreements with him--wanting him to know that I loved him. Instead of fussing I put little posters with positive messages on the wall behind his computer downstairs in the rec room. He didn't like them and thought his friends would think they were stupid. They are still on the wall, even though it has been over a year now that we moved his computer up to his room so that while on chemotherapy he would be in a warm place and people could visit him in small groups and only if they were healthy.

The posters are still on the wall over my computer, which sat beside his on the table downstairs. This is what they say:
"Positive people don't put others down."
"Winners make the grade. Whiners make excuses."
"Watch your thoughts, they become words. Watch your words, they become actions. Watch your actions, they become habits. Watch your habits, they become your character. Watch your character, it becomes your destiny."
"Even Einstein asked questions"
"Whatever....
Whatever is true,
Whatever is noble,
whatever is right,
whatever is pure,
whatever is lovely,
whatever is admirable,
if anything is excellent or
praiseworthy--think
about such things."

These posters with all their good messages are a constant reminder to me of the time that my son was sick and we just didn't realize it. Declining and tired, he didn't know what was wrong. We didn't realize how sick he was. We all thought it was just a cold that he hadn't gotten over. Even the first doctor that I took him to said that it was "just growing pains"--and I guess it was--cancer growing --causing pain. One of his brothers could see it and was worried about him--he told his granny during the holidays of 2003 that she really needed to talk to him---that he was more and more tired. My son told his granny about the pain deep in his bone and she was immediately terrified of what that might mean and told us to get him to a doctor right away, which we did. A painless tumor difficult to locate in his foot had already spread to bone marrow--completely replacing all the blood making elements. Stage 4

Last night Jason asked me to help him apply to college. He wants to go to school where his best friend is in school. He said that this college has a scholarship for cancer survivors. It is the first time in a long time that he has said anything that sounded as if he has hope. I didn't discourage him--I just said "Okay, I'll work on it." The cancer seems to be spreading so fast that I'm afraid unless God stops it that he won't even be able to go on the beach trip at the end of May that he and his friends are planning. His back is hurting a lot more and he said that he may need to start taking something for pain at bedtime.

We still keep praying for a miracle. That is what it will take. Thank you for caring and praying with us. My God who made this whole universe and raised Jesus up from death-- He has the power to heal. Miracles still happen. Even if God doesn't answer our prayers as we want Him to, we still will believe and trust Him. Even with tears in my eyes, I will still praise Him. We do have hope beyond this short life, because of what Jesus did on the cross. God bless you all.

Sister3
04-08-2005, 12:19 PM
Dear Prayingmom,

I'm so very sorry to hear about your son. Please know that I too, will keep him and your family in my prayers.

It makes my heart jump for joy to see you have not lost your faith in God and that you turn all your hopes and prayers toward The Great One. It's a very difficult thing to make people understand that just because God does not answer our prayers the way we would like them to be answered, does not mean that God is not with us or that He is not merciful. It's nice to see that you know that.

By far, the pages of this thread have been the saddest and most encouraging I've ever read. Saddest because my heart is aching for what your son and your family are having to go through. And encouraging because in reading these posts, it's evident that your son and your faith and Christianity have changed the hearts and minds of some who may have been lost or had questions of faith.

Prayingmom, if by you posting about your sons illness, has brought even just ONE person to Christ, then his life has not been for nothing. You can rejoice in the fact that your son is the reason that another name has been added to God's Book of Life.

I lost a son to SIDS on 3-16-1984. John 3:16-The most famous quote in the bible, "For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have eternal life." This quote never really connected with me until my daughter, who would never have been born if we had not lost our son, became a saved Christian and led me and my husband to Christ, 19 years later. If it were'nt for my son's death and the birth of my daughter afterward, my husband and I would not be Christians. God has a purpose and a plan for everything. For years I could't understand why He took our son. Now I rejoice in the fact that He did.

EVERYTHING has a purpose. The good, the bad and the unexplainable. Sometimes it just takes a little time for the reasons to be revealed to us... and sometimes they're not revealed at all. But knowing you have Christ as your savior makes all the difference. :)

You have been blessed and your posts are a testement to His love.

You are in my thoughts and prayers.

jessy28
04-10-2005, 07:22 PM
my sister died after beating cancer and relapsing a few years later. I really think at some point, if the person sick is at a point to be able to deal with the enabadble, it is best to look at the time left as just that. it might be best to just enjoy the time you have left and say all the things you want to say before the end. it is sad and really hard for everyone involved to accept but make sure to spend as much time as you can with him and let him know you really love him.

last1
04-13-2005, 09:59 PM
DEar prayingmom: Just wanted you to know that you continue to be in my prayers and that I can't imagine your despair. As a father of four children (all now in their late twenties/early thirties) I shudder to think about your grief and can't imagine how you are managing day by day. Know that you are lifted up on angel's wings; that you are loved, and that we all think of you daily and pray for daily as well. cflas (chris)

wimzie1
04-13-2005, 10:16 PM
Dear PrayingMom

I've kept apprised of your situation and that of your son's for a while.

I read all of your posts, and pray that he starts to feel better, and that you also feel like he may get better.

As of late, I'm feeling like his pain is getting worse, and he may be getting sicker.

Just wanted to say that you are such a strong woman, and a wonderful mother.

I'm a mother also, and hope he can get well.

You are an inspiration.


God bless,

BM

mikesbaby
04-18-2005, 02:36 AM
im praying for you! im so sorry

chriznat20
04-18-2005, 05:41 PM
Reading this whole post has brought tears to my eyes... Im a 25 year old guy and cant ever imagine what you are going through! I wish I could do something, or somebody could do something.......
Please just enjoy the time with your son NOW. Make videos, take lots of pictures. Write little notes back and forth to each other. That way, one day you can pull them out and just smile.
My 59 year old Mother has dementia. I moved out of home when I was 22, right when she started declining. (I now bought a house around the block from my parents) In January my Father had a massive heart attack - we almost lost him. Now I am so much more aware of the inevitibility of death. I miss my Mom sooo much (shes still here, but not with it) and my Dad is so weak now (hes 10 years older than my Mom).... its so scary to me. Sometimes I will be driving somewhere and just thinking about conversations I'd 'like" to have with my Mother.. the usual son and mom stuff. It makes me cry.
My prayers, thoughts, and deepest caring is with you and your family. Please take care. :)

katkat
04-18-2005, 06:41 PM
You are a fine son and its sad that your parents are in such bad shape at such a young age. 59 may now seem young to you now but its only 10 years from me and people are shocked when I tell them I have grandchildren. Anyway, at least you are close to your parents, thats great, and its great too that you have such a kind and caring heart. Many young men your age do not have the same heart as you do.

Prayingmom I've not been back here for a while, I've been wrapped up in my own problems. My stepson and his wife were expecting twins and she went into labor 3 & 1/2 months early. The first little boy weighed only 1 pound and 10 ounces and died within the first half hour. The second little boy is still struggling to live. I've been posting on the pregnancy board about this, Brian was born at 1 pound and 13 ounces, at two weeks old he still is the same weight. We are hoping and praying that he pulls through without bad side effects of being only in his mama's tummy for a short 26 weeks. He's has some serious close calls and the funeral of his brother was so sad, I have never seen a casket the size of a shoe box before. My husband took it pretty hard seeing his only child, carrying his firstborn son to the grave.
Prayingmom I hope God gives you the strength to get through this awful time in your life, I always tell first time moms that they will find out what real love really is when they have their babies. Its hard to lose a child, and just not right at all.
hugs
Kat

Prayingmom
04-18-2005, 09:20 PM
Dear chriznat,
It makes me sad to hear about what you are going through. It is so hard to see the ones we love suffering and declining in health. It is wonderful that you do live so close to them. My father who is 82 now, had a heart attack 4 years ago. During the surgery to have a stent placed in his heart, his heart stopped beating and he suffered a stroke. They went ahead and did a quadruple by-pass surgery and he is still living, but can no longer move his left arm. He seems like a shadow of his former, jovial, talkative self. I do miss my dad the way he was. They live 300 miles away and I so wish I could be there to help them, even if all I did was run errands for them. Thank you for stopping by and praying for my precious son.

Dear katkat,
Thanks for stopping by. I have missed you and I'm so sorry that the babies came too soon. If only they could have stayed safe inside their mother's womb just a few more weeks. Perfect little babies--just too soon. I had a miscarriage the year before (it was May 1994) my Jenny was born. I was only 3 months pregnant and there was no baby to be seen when I had the miscarriage, but I was so sad because of the loss. It seems like the moment you hear that you are expecting, your hopes and dreams and joy rise for your baby. I just can't imagine the sadness of losing one so small. I am praying for little Brian that he will to begin to thrive and gain weight and strength, no bad effects from the early birth, that he will grow to be a blessing and a joy to you all. I can't understand why those who don't even want a child seem to have them and then those who have so much love for children sometimes can't have them or have trouble like this.

-------------------------------------------------------------------

Just want to thank all who continue to stop by here. Thank you for caring and for praying. You guys are the greatest.

I posted on the cancer board yesterday. He made his trip to Birmingham to visit Katie. He stayed at her grandmother's house. He seems so tired. He is taking long-acting morphine for the pain and sometimes has to take extra pain medicine for breakthrough pain. I don't know what is going to happen. Thoughts of losing him make me so sad. I know he is going to heaven, but it will be like telling him good-bye and he leaves on a long trip and I won't see him until I take the same journey. I just don't want to think about not seeing him for the next 20-30 years until I go to heaven too. He called me from Birmingham and left a message on my cell phone. He said, "Hi, Mom! Just calling to let you know I arrived safely. Bye." Without thinking I deleted it. I wish I had saved it to listen to over and over. It would be nice if those arriving in heaven could make one phone call to say those very words.

Of course, we keep praying and praying for complete earthly healing. I mean, my son is not dead yet and God could still heal him. That is what we need. A miracle--- . I don't believe we have much time, if God doesn't heal him.

Thank you all for praying.

BlueSunday
04-20-2005, 08:59 PM
I am so sorry about your son. I lost my 12 year old nephew on October 23 last year to cancer, and today is actually his birthday. It was the hardest thing I've ever dealt with, because it is particularly difficult to deal with the death of young people. I am still not over losing my nephew, but as cliche as it sounds, the thing that I always do cling to is the thought of him not suffering anymore.

rhody
04-20-2005, 10:50 PM
Hi,

I'm also sorry to hear about your son. I lost my mother to cancer more than 30 years ago. It has made me very health-conscious.

I also had severe health problems. It's a very long story, but after decades of trying to find out why I had all of these problems, I linked these to my mercury-silver dental amalgams.

During this period of trying to find anything to help me, I read so much about natural cures, with diet and herbs (since doctors could not help me). Later in life I realized the effect toxins have also on our body. I took copious amounts of herbs many many years ago. I would drink these almost every day.

With all the reading that I had done, I read also about cancer patients who healed themselves naturally. It's very rare, but I have so much faith that for some people they could be cured this way.

I know someone who had stage IV cancer for years, and survived until her 80's with her natural herbs. She would take some chemotherapy, and then she would tell them to stop, as it was too painful or uncomfortable. She'd go back to the herbs.

There's so much that doctors do not know, and if it were me, and someone in the orthodox medical world told me that I was going to die, then I'd search outside their knowledge base. I'd try to find that natural combination of substances (foods and herbs) that would enhance the immune system to cure the cancer.

I know it's rare, and the medical community often scoffs at such things, but they only live within their known and proven science. Sometimes we have to go outside of that...I know I would...and I know I did...and am healthy today.

I'll say a prayer too...and remember that God speaks through all of us...we wish so much that your son recovers.

lost spirit
04-22-2005, 02:22 AM
My heart goes out to you and my prayers are with you .
May God look down on you're son with warm loving eyes and touch him with a warm loving hand .
Never lose faith and always believe ........
When there's no one left to turn to turn to god because he's always next to us whether we realise it or not we just have to listen .

trivas
04-23-2005, 05:08 AM
prayingmom: your screen name says alot. as a mother we worry and we tend to always try to find a solution to a problem; but as a "praying mother" , we put our troubles in our Lord up above. He listens and feels your pain. He's in pain as well; but might have other plans. We can't ask Him to do His will if we want Him to do ours. Be strong and don't loose faith. I'm praying along with you. take care

sculpture
04-28-2005, 01:44 PM
I pray for you, your son, and your family.

Prayingmom
05-15-2005, 12:43 AM
Hi Everyone,
Sorry it has been so long since I posted here. Sculpture, trivas, lost spirit, rhody and BlueSunday, thank you so much for your messages and eveyone thanks so much for your prayers.

I just posted a new longer message on the cancer healthboard about my son. He has started a new oral chemotherapy called etoposide. The doctors say a single agent like this is palliative not curative and just hope to give him more time. He seems to be feeling better and has less pain in his shoulder blade, although he does seem to sleep more and seems more tired. He bows his head often--I wonder if he is praying, thinking or just tired. The radiation oncologist said that the CT scan didn't show skeletal involvement. The tumor board met and discussed my son and said that they think the PET scan was actually showing cancer invading the bone marrow in his spine, shoulder blade. We are hoping and praying that his trip to the beach (they leave next Sunday) will be wonderful and that he can have fun with his friends and not be sad. We continue to pray for a miracle and know without a doubt that if God chooses He can heal my son no matter what the doctors say.

Thank you all for praying and once again I apologize for not letting you know what is happening.

katkat
05-15-2005, 10:23 AM
I was wondering how you and your son was doing. I'm sorry to hear that he has not shown any improvement. We lost the other twin that was born early. He lived for 37 days, long enough for me to get my hopes up that he'd actually make it. He got septicemia and went very fast. We were thrilled with each ounce he gained, he was up to 3.4 pounds, but it was not meant to be. Maybe God felt he needed him in heaven.

cookingmom
05-17-2005, 08:50 PM
Dear PrayingMom,

I have just read your posts and wanted to tell you that I too will be praying for your son, you and your family. I praying for healing for your son and for strength, courage and hope for all of you. God bless you, Bern

michaelii
05-18-2005, 02:54 AM
If there's no other hope, why don;t you consider radical alternative treatments..?

Bio-medical in tijuana, mexico claims to have saved several end stage cancer patients, and I personally know 2 friends whose lives were saved...

Worth a shot...

Jasmina
05-18-2005, 06:58 PM
I just read your post, and I wanted to give you my blessings. I can only imagine how hard this must be for him, for you, and the rest of your family. God makes miracles every day, and I'll send a prayer in his direction for you. God bless.
~Jas :angel:

katkat
05-18-2005, 11:00 PM
I've also heard of people dying from treatments they got from Mexico. A third world country is not where I'd want to get treatments from. I think this young man is in Gods hands now. Only he can save him. From the way his mother talks he is a wonderful young man. When we know that the person we are losing or lost are in Gods care until he takes them home makes it a little easier. I know that my grandson suffered the last day he lived more that I want to think about. Now he will never know what suffering is again. I KNOW that God is taking good care of him and I know that Prayingmom's son will not suffer the everyday aches and pains, nor the hurts that this world can and does deliver us throughout our lives. I know it will be hard for her and her family to have to give him up but they know that someday they will see him again. They have to hold on to that thought to get through the roughest hours.
God bless them all.

Prayingmom
05-23-2005, 06:26 PM
Hi everyone,
Sorry it has been so long since I posted here. I stay busy. I just recently posted on the cancer board - string - "relapsed cancer" about Jason. (If you go there look at the last couple of pages). Thanks to everyone's prayers and the Lord's answer to those prayers, Jason is on the beach trip that he has so longed to go on. His girlfriend, Katie, went also. The post there on the cancer board is much longer, but I can't just copy and paste it here as we are not allowed to post the same message on different boards. Jason's younger brother Justin had an unusual X-ray that shows what they say is a chondromyxoid fibroma, also had an MRI, but we must take him now to a pediatric orthopedic radiation oncologist, a specialist and it may have to be biopsied to make sure it is not cancerous. That post is there also.

Thank you so much for praying for our dear son--and even though I started this string as "My son is dying" you know that we are still praying for complete healing for him here on earth--and that in reality we all "are dying". We just hope that he doesn't have to leave us now. Day by day, week by week, we just don't know what is going to happen. We'd love to plan a beach trip with Jason and our family, but things are so uncertain.

holeinheart
05-27-2005, 01:30 PM
I read your post and my heart went out to you all, a few years ago I was told I had only two years to live and had to tell my small son and my new husband this , they where devistated .............we cried, we took stock of our lives together and I prayed to god with all my heart that this was a terrible mistake. God answered my prayers , my cancer ( a huge lump on right shoulder down to the bone which was removed + therapy + other ) has gone and I am now clear .
I now have lots of other 'nasty' conditions to cope with ,but I am one of the few who made it.
Please dont give up hope, please be positive about the time you have left together , every day is a specail day to treasure for the rest of your life. My thoughts, my love and my hope's go with you all, Hole in the heart.

LOtRsfan
06-02-2005, 12:24 PM
yea, i'm soooo sooo sorry! may Jesus be with you at times like this!

Cutiepie4u318
06-06-2005, 07:42 PM
I will pray for your son.... Love Ya and the best of luck...Courtney

brit18
06-16-2005, 08:49 PM
I am sorry for what is happening. I am 13 and last year my best friends cousin passed away from Leukemia. He was 17 and he was awesome. When we found out that he wasn't going to make it we did a bunch of kool stuff that we would always remember. We took lots of pictures and would type up a summary about all the cool stuff we did. We would put it all in a book and keep it. We all stayed strong and it worked well on all of us. We just though of it as him moving... moving to heaven sorta. I hope for the best for you. Stay strong, for you, your husband and your son.

brit18
06-16-2005, 08:50 PM
sorry i think i already sent this.

sparkylarky
06-17-2005, 01:11 AM
I, too am so sorry to hear about your son. Life isn't fair. I wish there was anything that anyone could do to save your child. All I have to offer you is my prayers. As others have said, "Pray to Jesus". Ask for a miracle. Have faith. Know that all of those that read your post, are praying and thinking of you at this very difficult time. When you feel helpless and don't know what to do, hold on to the crucifix of a rosary and know that you are holding Jesus (he is with you). May God bless you and give you the strength to carry this very heavy burden. JOANN

brend3111
06-19-2005, 02:58 PM
I am so sorry to hear about your son. I too had cancer. It is never easy...The best thing is to draw on Jesus. He resides in each of us. Pray and expect a miracle. Everything the body needs to heal is inside of us. Buy Bernie Segal tapes on Guided Imagery, I will be praying for your son and family-God Bless You

Tammy Spencer
06-21-2005, 02:36 AM
hi i have read all your threads and my heart goes out to you i have came to this board because my father has menanomia cancer and they have only gave him a year and it has been pretty close to it and he is still able to do some he has went through alot of treatment and i always pray for him not to suffer as i do my husband with his lupus that is in i.c.u in columbia just hoping the best for him also but i couldnt even amagine loosing my son it would feel like my world would fall apart and myheart goes out to you so very badly makes myproblems seem so easy compared to your just keep faith and believe god can do miracles thats what i do and i sure hope your son gets through this i know he goes through alot of pain but if good can come of it it will be worth it and also you and your son get a little more time to let eachother know how much you love eachother which i am sure you all know but extra time never hurt anyone my mother had cancer but she died in a car accident didnt get time to tell her everything i wanted so i sure make sure i do with my father and my husband even though he cant talk back to me "husband" but still i tell them everyday i love them they are the most important part of my life besides my kids but my kids help me alot through this if i didnt have them i just dont know what i would do but my heart goes out to you praying mom and everyone esle i will be praying for you!!! God Bless

aelisemc
06-22-2005, 09:52 PM
My 17 year old son passed away on May 14th from a rare neurological disease, so i know how you are feeling watching your son go through everything that he is. I can tell you one thing that has made our son's passing a little easier for us and that is that he told us throughout the last month of his life that he was going to heaven with jesus and that jesus was in our house. i pray that a miracle happens and your son is healed, but if that is not to be, i pray for strength for you and your family as you help your son deal with his illness.

Ann

peekabooman
07-05-2005, 01:34 AM
When you've done all you know to do, all there is left to do is pray. Sometimes I think God doesn't listen to me at all and everyone says "he has a plan". But I keep on praying and try hard to keep my faith but it is so very hard. I have been losing my baby for 3 1/2 years. He wasn't suppose to live this long but he has. He is a little miracle but I'm still told he won't live a long life. I've been greiving since the day after he was born. I'm doing everything I can with him to make sure he has a fulfilled life before he goes. I can't imagine having a otherwise healthy child get cancer later in life. IT just doesn't make any since to me but we have to keep holding on and believing there's a reason for it. This is my favorite scripture but when things get bad I can't help but to question God.
Jeremiah 29:11-- For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future. For me this verse helps me remember that God's plan for my baby is so much better than the one I think it should be. I am able to see only a little of my baby's life at a time while God sees the final chapter.
Charlotte

mindomaximus
07-24-2005, 08:54 PM
I can't say i know what your going through. But I'll pray for you and your family.
God bless you all. :angel:

xledzepplinx
07-29-2005, 03:13 AM
im so so so so sorry about ur son
the same thing happend to my friend

he was relly close to dying and we talked for hours at a time and my friend had to understand that he deserves to live

make sure that ur son nos he deserves to live because ther mite b a little voice in the bak of his head tellin him he needs to die

jus kill off the voice and cancer will die with it

P.S. NEVER EVER GIVE UP HOPE BECAUSE UR SON CAN FEEL IT NOMATTER WAT U SAY SO KEEP THAT HOPE ALIVE
HE CAN COME THROUGH IT

mousey
07-29-2005, 03:53 AM
This is so sad =( i am so sorry for your family and your son.. please keep hoping and praying and never ever lose hope, you never know what can happen. The brain is a powerful thing, your son needs to believe that there is hope for him and he needs to keep fighting this thing...you'll be in my prayers =(
xox

Summermoon
07-30-2005, 11:12 AM
Hi,

Just wanted to say i have been thinking about you and sending healing thoughts to your family at this difficult time, may you all be strong :angel:

Love and Light T xx

spencer123
08-09-2005, 06:11 PM
Hi, I am so sorry to hear about your son. I would try reading the posts about visions near death and life after death. These posts are SOO comforting to the point where your happy and feel very emotional in a positive way. I pray to god that your son does make it. But in the case that he doesnt, it is because god needs him more than you do. God chose him to come early over many many other people. I hope this is comforting to you :)


God works in mysterious ways

Prayingmom
08-28-2005, 04:54 AM
My dear precious son Jason passed from this world into the arms of his Lord and Savior, Jesus Christ, at 1PM Thursday, August 25--which was also his father's 50th birthday. The pain had finally gotten so bad that he just couldn't hide it from us anymore. At one point early Monday morning, he said, "Mom, just go out and close the door and try not to listenm," as he moaned in pain. We did manage to get control of the pain, though at times he still hurt. Tuesday night he went to sleep with a headache, dizziness, rapid heart beat and swollen feet. He never really woke up again, except to say Yes or No and incoherent words--except once on Wednesday he managed to say "Am I dying?" I loved him so. He wrapped his little hands around my heart over 19 years ago on the day he was born and he has taken a good part of my heart with him.

God bless you all for caring and praying.

Thank you.

kerry1
08-28-2005, 11:25 AM
I'm so sorry your son is sick. I will pray for him too, but God doesn't always answer our prayers the way we expect. I just know one thing - your son will always be alive in the true sense of the word. God does give us eternal life. I hope you're taking care of yourselves too at this stressful time. :angel:

ryka
08-28-2005, 10:26 PM
Prayingmom-
I am so sorry to hear about your loss. I know this must be an extremley hard time for you. I have been following this thread for months and wanted to thank you for opening up about your son and sharing your feelings. KNowing about your situation has really helped me get through some hard times and realize that there are other people out there dealing with the death of a loved one. Your story has truly touched me.Once again I am so sorry to hear about your son.

Samantha317
08-28-2005, 11:28 PM
Prayingmom,
You have my deepest sympathy for the loss of your precious son. Your son and your entire family will never be forgotten. I pray for strength and peace for you.

Sincerely,
Sam :angel:

katkat
08-29-2005, 12:00 AM
Prayingmom I am so sorry to hear that you lost you wonderful son. Only you or other parents can begin to know how it feels. Us who have been reading your post and praying can only imagine. I know that when we lost Bryan it hurt terribly but he was only with us for 37 days and was our grandson. Your Jason was with you for 19 years, 19 years of a growing love. At least you know without a doubt that Jason is with the Lord now. You know that you brought him up in the knowledge of Jesus and that he is the answer and the way to heaven. No longer is he in pain and someday you and your husband will see him again, I know that and so do you. Yes you'll miss him and the pain will seem unbareable at times but with Gods help you will go on with your life. Don't forget the rest of your family, they need you and miss him as much as you do. Some day you and Jason will be reunited. Don't ever doubt that. I wished I could so something or say something to make it not hurt so bad.
God be with you.

pillzpillzpillz
08-29-2005, 10:24 AM
Oh no...I am so sorry....I am just so very sorry...thank you for sharing your son with us, I read about your son a lot and it almost seemed like I knew him and your wonderful family...

May the lord wrap his arms around you & family and hold you all tight through this difficult time.....

God bless you and your family and of course, Jason.

Kaylee4C
08-29-2005, 11:19 AM
I'm sorry to hear that... you're in my prayers. :)

God bless,
Kaylee

Johnsternow
08-29-2005, 01:13 PM
I don’t expect you to remember me or to ever respond to me either. I have nothing to offer as so many heartfelt people here have all said it all. I just wish to express my true sympathies and feelings once again and to let you know that you and your entire family has been and will continue to be in my thoughts and prayers daily for peace and comfort at this extremely difficult time.

MySonChris
08-29-2005, 02:27 PM
Prayingmom, I am so very sorry! I can not express the depth of my sorrow. Your son was so strong and brave- a true inspiration and hero, and you are the most wonderful mother. I pray for strenght and understanding for you and your family and know that your son will be watching over you until you can all be together again. I know there are no words that can ease your pain but I will never forget you or your sweet son.
Charlene

HippyChic8123
08-30-2005, 05:56 AM
I'm very sorry for your loss, altho I don't know much about cancer, (of any form), I've been trying to learn about it because it can happen to anyone...I'll keep you and your family in my prayers, and hope the best...cuz I'm not sure theres much more I can do.

Prayingmom
08-30-2005, 07:39 PM
Hi Everyone,
I just thought that I would recount the last few days of Jason's life.

We took Jason up to visit grandparents in East TN on Friday, August 19. He took his last dose of the 3 week cycle of oral etoposide that night. He didn't sleep well that night and he had leg cramps that day and on Sunday when we returned home. He lay on the couch all weekend with his head turned away from us and didn't talk much. You know that he had expressed a desire to ride a 4 wheeler. My mother bought one from an uncle a few weeks ago and had hoped that Jason could ride it. He said, "Mom, I just don't trust myself anymore to handle one of those. I wish that I could have riden one back when I was healthy--2 years ago." Josh and Jenny enjoyed the 4-wheeler as Jason lay there on the couch.

At home on Monday, Jason woke up hurting. He said that he hurt all over at first, but as he woke up more it seemed that his knees were hurting more than anything. I gave him all the pain medicine that I was allowed to give him and he was still in pain. He has always been so tough that he could cover up the pain he felt. He was hurting so bad that he moaned and groaned and screamed in pain. He said, "Mom, just go out of my room and close the door and try not to listen." I went out and fell on the floor, praying for God to have mercy on him. Then I got on the phone and called hospice to try to get more pain relief. Back last July when the doctor gave him a death sentence Jason had asked two questions--how long do I have?(they said months, not years) and how will I die? They couldn't give him an answer to that, but the doctor promised that he wouldn't have to be in pain. I couldn't stand for him to be suffering. Hospice said that we had liquid morphine in a comfort kit in the refridgerator. It is fast-acting and I could give him some every 30 minutes until there was relief. It took an hour and a half before there was pain control. All that day, I stayed very near to give him a dose every time the pain began to return. I slept downstairs where I could hear him if he called me.

On Tuesday, when he woke up the pain was even worse and now not only his knees, but his ankles were hurting. He said they felt as if they were broken. So we started the same routine and I even called hospice who came out and allowed an increase in the long acting morphine that he had been taking for some months. By late that night he noticed that his feet were swollen. He hadn't had much sleep all weekend or Monday and Tuesday and he hated to go to bed because his legs hurt worse when he got out of bed. He was sitting at the computer, barely able to keep his eyes open, nodding in and out of sleep, with a bad headache and feeling dizzy and nauseous. When he got up to go to the bathroom, I checked his blood pressure and pulse and his heart rate was 155. I said, "Honey, I know that you are tired. Why don't you just try to go to sleep." So he took some medicine to help nausea and got in bed. It was 2:00AM. I slept in the floor of his room. I was supposed to wake him up at 5:15AM to give him more pain medicine, but I overslept until 6:30AM and he seemed to be sleeping well. My husband said not to wake him. But, as Wednesday went on, Jason never roused. We tried to wake him and couldn't get him to wake up. He couldn't open his eyes, but sometimes would open his eyes partially and give a Yes or No answer to our questions and then would say something we couldn't understand. I was out of the room when he asked (in his dad's presence) "Am I dying?" but he was out again almost immediately. He was still in pain at times as he grasped the covers and grimaced and I was frantic to get relief even then. I thought I had no way to give him pain medicines with him unconscious, but hospice told me that I could give him .25cc of liquid morphine and it would be absorbed through his gums. In this way we managed to give him pain relief and he seemed to no longer be in pain. He was in a coma and he slipped deeper and deeper into this deep sleep as Wednesday became Thursday and I lay sleeping in the floor again. On Thursday we couldn't rouse him at all. By around noon, when one of his friend's mothers was over, she said that my husband needed to call Jason's brother, Justin to come home from his Arby's job. We called all the children in the room so they could say "Good-bye to Jason." Hospice nurses told us that even though he couldn't respond he could still hear us at times. We are all around him telling him how much we loved him and that we would miss him. His breathing changed and around one he raised up, his eyes opened and then he was gone. It was 1:00 last Thursday.

His brother, Justin, ran out of the room. David found him sobbing and alone. He said, "I had so much more that I wanted to talk to him about." That afternoon, Justin went out on the lake and went cliff diving. One place they went diving was under a tall bridge where they had to climb out on metal beams over 40 feet above rocks and then the lake. It was dangerous. I didn't even know where he had gone. The funeral is over and Justin has closed up again and is trying to be tough and unemotional.

He is gone--he is gone and I know that he is in a better place. I truly am thankful that he is no longer having to suffer, but I miss him so much. I don't know if you had read this before, but last summer, after the doctor said that there would be no cure for him, Jason said, "Mom, it's okay if I die now. It will just mean that I am in heaven a few years before you." When I told him how my own mother had become so bitter after my brother died, Jason said, "Mom, I don't want you to be bitter. I want to see you in heaven." Jason was just a little boy when he prayed to receive Christ. He was only 4 years old. I thought he was too young to understand and tried to put him off. He pleaded with me to tell him how to be saved because, he told me that he was having bad dreams about going to hell---this was not something we talked about in our home and I don't remember the pastor at our church even emphasizing it. When Jason told me that, I decided to go ahead and share with him how to be saved and he prayed with me. He never had another bad dream like that after we prayed. He never wavered in his faith. Jason was not a follower. He was a leader. He would not give in to peer pressure even in areas such as his speech. His friends say that he was the most moral person that they ever knew.

Jason was the answer to many prayers of a barren woman (me). He was the best Christmas present David and I ever got (he was born just before Christmas). It is hard to imagine that God has taken him back so soon. We do have 3 other children and I know we must go on, but this hurts so bad. I would never want him to come back and suffer more, but I had so prayed and hoped for miraculous healing.

God bless you and all your loved ones. Thank you for praying.

Prayingmom
08-31-2005, 12:58 PM
I thought that I would tell my dear son's story here, even though now the struggle is over and he is no longer suffering and in pain. I feel that our suffering will not end until I see my son in heaven. Last Thursday on his dad's 50th birthday, my son passed away. He had been on hospice care for many months, but really didn't require much care until the last terrible week.

It all started in Dec 2003. He turned 18 just 9 days before Christmas. He was a senior in high school. He had always been so healthy. His brother was worried about him at Christmas, because he had been so tired and his chest had been hurting and he had been out of breath, but we didn't know any of that. He always downplayed any physical ailment and when he was hurt, he would say, "Don't worry, Mom, I'll be fine." His brother told asked his grandmother to talk to him about the symptoms and she was actually terrified when she heard that among other symptoms that he was having that he was having pain deep in his sternum. She told us to get him to a doctor as soon as we got home from her house 300 miles from ours. I took him to his pediatrician's office on 12/31/03 and the pediatrician did no tests and said, "It is just growing pain. He still has a lot of growing to do in his chest and I can almost guarantee that it is just growing pain." This pediatrician retired that day and I have never gotten to talk to him about what was really wrong with Jason. So in the first week of January I went ahead and took him to have his wisdom teeth taken out. He just never seemed to recover after that and became paler and paler and more and more tired. Around the third week of January 2004, I took Jason to his new doctor--a general practioner and he actually only saw a nurse practioner and when she heard the symptoms many tests were run. All of the tests were normal except for the blood tests which showed pancytopenia. This means that all the cells in his blood were low: low red blood cells, low white blood cells and low platelets. We returned the next week for a recheck of his blood and this time the counts were even lower. They set up an appointment for a couple of weeks later with a hematologist. I begged for a sooner appointment and that doctors office said that if I could get him there by 1:00 they could see him that very day. They did several tests, but the worst one and the most critical one was the bone marrow biopsy that they did in the office without putting him to sleep. It was so painful and only the first of many bone marrow biopsies that he would have done. He always said that it felt like a broken bone for days. We went out to eat at Outback Steakhouse that night, not knowing that our world had already started to change to something that we could never have imagined in our worst nightmares.

The next day while he was in classes, I got a call saying that he had leukemia and that we were to bring him to the hospital as a room was waiting for him. That was his last day of class ever. He was admitted to the hospital. The next day they had to do another bone marrow biopsy as the first one had been sent to labs all over the country as required by our insurance. By the end of that day (2/6/04) he had had many scans done and they still hadn't found the primary tumor. The new biospy showed that it was something much worse than leukemia. It was alveolar rhabdomyosarcoma (ARMS) with t(2,13) gene translocation. He was diagnosed on 2/6/04. He had a central line placed for chemotherapy to be given and received his first chemo that Friday. He threw up for days and lost 13 pounds. He was already so skinny--always had been thin. A PET scan on the following Monday showed that He had a tumor in his left foot that had spread to bone marrow (so it is stage 4) and the symptoms we noticed were due to the anemia he had. He spent 21 days in the hospital with the first hospitalization.

The doctors wouldn't even give us statistics. They just said that our child wasn't a statistic and advised us not to even look. I probably shouldn't have looked, but when I did I found that his chances were to live were less than 3%. Probably less. Some people say that if it is in bone marrow at diagnosis that there is no chance for recovery. Being 18, he was given choices to make about treatment. No treatment was a choice and he would have been gone very quickly. There was VAC (Vincristine-ActionmycinD-Cytoxan) or an even more intense treatment VACIME that was VAC with iphosfomide and etoposide with mesna. Jason chose VAC.

At the beginning there was a 100% replacement of all blood making elements with cancer cells in his bone marrow. On 4/9 there were no cancer cells in his bone marrow, but by 7/30 there were some cancer cells in fibrotic tissue in his bone marrow which the oncologists said were resistant cells and they considered it to be a relapse while on treatment (Vincristine-Actinomycin-Cytoxan). Chemo had to be changed. The oncologist said to all of us including Jason that there were 3 choices: 1) stop treatment- a viable option, he said; 2) cytoxan-topotecan 3) more intensive treatment with VAdrCIME which would involve more surgery to put in a different central IV line. Then the oncologist said, "No matter what you choose it will only prolong your life. There will be no cure for you." I hate it that he tried to take away all our hope. Jason really didn't want another surgery, and I was so thankful that he didn't want to just quit treatment. He chose the cytoxan-topotecan, but after the first day he just wanted to stop treatment as we were at the clinic for over 8 hours and he was nauseous. It was given in the clinic every day for 5 days with hydration and then a 2 week break and then repeated. He had a bone marrow biopsy and a PET scan done on 10/1/04 just to see the new chemo was working. After 2 treatments, the same doctor said that there is always hope and asked Jason he if he would continue treatment if the tests showed good results. The oncologist also said that our other children: Justin, 16; Josh, 13; and Jenny, 9 could come down with us to the clinic to have some blood drawn to see if any of them were a match for Jason for a bone marrow transplant just in case we ever wanted to consider this. It is considered experimental (and I found that it is not effective either) and our insurance would not pay for it, but many friends have offered to help raise the money if it is needed. The bone marrow transplant process just sounds so hard.

We just kept praying and praying and praying that God would heal Jason here on earth. I know that God can heal. He is able to do that with just a word. Nothing is impossible for God. Jason, himself though thought that he wouldn't make it. On the way home from the clinic one Friday he gently said, "Mom, it will be alright if I die now. It will just mean that I will get to heaven a few years before you all." My tears flowed as I tried to say, "But honey, we'll miss you so much." Jason did well through the chemo. Nausea was his worst problem. He had 23 days of radiation to his foot that ended on 6/18/04 and burned his foot badly and put him in a wheelchair for about a month. Yet just a few weeks after these terrible burns to his foot he went on the youth mission trip where they have Vacation Bible School for inner city kids. In August of 2004 he seemed to feel fine and if not for the bad bone marrow report at the end of July we would never have known that he had relapsed. We met 6 other families with children with rhabdomyosarcoma at the hospital where Jason was treated--4 from our own small town.

I will write more later. Once again, thank you for the many prayers that you offered up for our precious son. If only they could have been answered the way we wanted them to be......

God bless you all. Hug your children. Let them know every day that you love them. We don't know what they future holds and how that in just a moment our lives can change forever.

Soulcatcher
08-31-2005, 01:20 PM
You write and amazing story and I feel fortunate to have read it. I think you should print this whole section and possibly make a book in memory of your son. I feel I have lived with you during your time of struggle. I think other mothers and families struggling would get a very good inside look of a mothers feelings. Maybe your newspaper could share this story so that mothers are informed better. Just a thought, maybe in the future. Your son was amazing. I have followed you on this site to know how your family is doing. He was so strong to tell you to not be bitter so he could see you in heave. Wow. I am sorry for your loss but will rejoice that he is sitting beside Jesus and happy and healthy and suffering no more. I pray that angels will surround you and keep you safe and that God holds all of your hearts in the palm of his hand so that you don't hurt. Your always in my prayers. I hope his siblings are doing as well as can be expected. Lots of love your way.

Prayingmom
08-31-2005, 01:29 PM
Thank you so much. I guess one of the things that I hope is that even though his life was short that it has made a difference.

He was such a huge part of my life and will always be. I know that life will go on, but he will always be a part of me. He brought us such joy. Oh, I remember how joyful the day of his birth was. To hold my own newborn son was the dream of a lifetime. How can he be gone? But he is.

shnswms
09-01-2005, 09:25 AM
Your story breaks my heart. I am curious did Katie make it back to see him in his last week? And by chance did Jason play an online game called World of Warcraft? I remember you mentioning he spent time on the computer. The reason I ask is because I may have played the game and spoke with him numerous times. Recently, someone named Jason who played the game died on 8/25 from what they said was a rare form of cancer he fought for almost 2 years. This story sounded so much like your Jason's and they passed away on the same day. His real life friends posted it on the game message board and there was a big showing of condolances and people saying such great things about him. We are even going to have an in-game memorial to him. I just thought I would share that because if it was him I found him to be a wonderful person. Thank you for sharing Jason's story with us.

Shane

Prayingmom
09-01-2005, 12:41 PM
Katie didn't make it back in. That was among one of his last wishes. He and Katie were supposed to go to a Coldplay concert in Birmingham on 9/16 and he was looking forward to it, just so that he could see her. I think he knew that he was failing quickly when he said on Tuesday, "I just wish I could see Katie one more time." Katie called the morning of 8/25 and asked Jason's dad if she should come home and David told her, "I think that would be good." Even if she could have gotten here in time, Jason couldn't have responded to her as he was so deep in his coma. Katie left Birmingham at 12 noon. About an hour after she left, she had a problem getting her breath and had to pull off to the side of the interstate. She said that she had a feeling for a few minutes as though she were floating and then felt fine again and drove on. The thought crossed her mind that at that moment something might have happened to Jason. It was 1:00 when he died--the same time that Katie had to pull off the road. I don't understand -- but have thought about the connection and the love that they shared. We were very concerned that she would get here while he was still lying on his bed. They had taken him away by the time she got here. One of Jason's chief concerns was the pain his death would cause all of us who love him. He was not worried about dying. I suppose he knew that it was inevitable. We just didn't know that there would be such a crisis and that he would be gone so suddenly and that he wouldn't be able to respond to us during the last days.

Yes, Jason was a big World of Warcraft player. That was him. He sat at his computer a lot playing the game when he didn't feel like doing anything else. During the last days, when Katie was here and he played WOW, she said that it seemed as though he couldn't concentrate enough play. Thank you for sharing. He really was a wonderful person--his friends say that he was the most moral person they ever knew. You brought tears to my eyes. I miss him so much.

We keep his music playing in his room all the time. He always had music on, day and night, as well as a fan always going beside his bed. We can't get his main computer to play music right now, but maybe one of his friends can help us. The music he started the Tuesday night that he went to sleep and never woke up is Pure Imagination by Maroon 5--it is beautiful. It played as he lay dying. His away message on his computer that night said, "Every new beginning flows from some other beginning's end," which is a quote from a song called "Closing Time." We have that song playing on the other computer in his room now over and over. One line in that song says "I know who I want to take me home." Jesus took Jason home last Thursday. His life has ended here, but his life in heaven has just begun. Today, my dear son is in a place better than any of us could ever imagine. It helps to think that even though he is not here where I want him, that he is in that better place and that he isn't suffering physically and he doesn't have to look with dread wondering what dying will be like.

Rossy32
09-01-2005, 01:21 PM
I am so sorry to hear that your baby is dying, i know the pain of losoing a child it is so hard to let go them i lost my son Angel over 13yrs ago and the pain will never go away but keep faith in God if it is meant for him to leave your side just remember he will be in a better place and pain free and when the time comes you and him will be reunite again. Will keep him in my prayers

Prayingmom
09-01-2005, 09:17 PM
I just thought that I would repost some of my posts over the last year. I saved them all and the prayers you all prayed. Thank you.

This one is from Sept 2004.
Thanks so much for your prayers for Jason. It has been a very hard week for us as Jason went down every day to the clinic to receive chemo to try to stop this terrible cancer-rhabdomyosarcoma. They told him on Monday that the ultrasound showed very numerous spots that look like rhabdo. He was very discouraged, but agreed to do chemo this week. On Tuesday, he felt so sick that he said, "Mom, can I just quit?" That's like saying, Mom, just let me die. I told him that in the middle of a week of chemo is not the best time to make a decision like that and that we should talk to his dad and his doctor before he quits. That day he was not hydrated enough and we had to stay from 8 until after 3 and Jason hates that so much. He felt so bad that I cancelled the urology appointment who will do the fine needle biopsy of the lump, and the radiation oncology appointment. These have been rescheduled for next week. It was just too much to expect Jason to endure the chemo and while miserably sick also go to extra appointments on the same day.

On Wednesday, one of his best friends surprised Jason--e-mailed him and said "We are on fall break (from college). I'm home. Can you come over and pick me up." Jason's whole attitude changed in a moment and he was out the door in a flash to go and pick Trevor up. On Thursday amazingly Jason had no nausea that afternoon after chemo. He wanted an Arby's large roast beef. That night we went out to eat at Outback Steakhouse. We laughed and had fun. Over 500 people had called Jason's "prayer" pager to say they were praying for him over those 2 days. I think that it was an answer to prayer. On Friday, he was sick on the way to the clinic and threw up--he thought it was because of Outback. So much of this nausea is psychosomatic--very real, very hard to control, but a mental thing. He gets sick just walking into the hospital on a day when he is to receive treatment.

Please pray concerning the tests that are coming up. On Thursday this week at 5:00 he will have an MRI of his head to see if cancer has invaded this "sanctuary" site. He has no symptoms, but as cancer appears to be in the other sanctuary site (at this point Jason had found lumps in his testicles which were both removed in mid October and for the rest of his life he had to receive a testosterone injection every 2-3 weeks)it could be here too. Also pray that the lumps would just disappear or just not be cancerous that they saw on ultrasound this week.

Thank you for praying for Jason.

In Christ,
Pam

Prayingmom
09-01-2005, 09:27 PM
This is my post from 9/23/04.
Hi,

Jason is due to have scans on Oct. 1. It seems like it will take most of the day. He will have a PET scan at 8 AM, doctor's appointment, bone marrow biopsy in the office and then an MRI of the left foot. If the results are good we hope that he will continue on the current therapy (Cytoxan-topotecan) torturous though it is. If they are not good it may mean the end of treatment. He has alveolar rhabdomyosarcoma (ARMS) with t(2,13) gene translocation with the primary tumor in the left foot and on original diagnosis on 2/6/04 there was 100% replacement of all blood making elements with cancer cells. At first his oncologist said that Jason would be a good candidate for a bone marrow transplant since it was only in the one spot and in bone marrow. After being on chemotherapy (VAC - vincristine-actinomycin-cytoxan) for 2 months there were no cancer cells in his bone marrow on 4/9/04; but by 7/30/04 cancer cells were back in fibrotic tissue in the bone marrow while Jason was still on high dose chemotherapy (relapsed) and suddenly this "tell it like it is" oncologist says that we have 3 choices: stop treatment (onc says it is a viable choice); cytoxan-topotecan (better quality of life) or VAdrCIME involving a new central line(Hickman catheter) and lots of time in the hospital. No matter what choice we make the oncologist said that it would not be a cure and that it would only prolong Jason's time here. Since then I've had nurses say that "That oncologist isn't God," and the oncologist himself relented somewhat and said that there is always hope and that I can bring my other children in to have them tested to see if they could be bone marrow matches for Jason. My sons age 16 and age 13 are brave enough to give a sample of blood, but when I mentioned it to my little girl who is only 9 she cried and said that she just couldn't, so we will just check the boys tomorrow. I don't know if we should even consider doing the bone marrow transplant. I have searched and searched for more information about it and haven't found much. I want to read some success stories for bone marrow transplant and rhabdomyosarcoma.

[Bone marrow transplants for rhabdomyosarcoma are more commonly done in Canada, but I never found success stories for someone who had cancer in bone marrow at the beginning.]

Prayingmom
09-01-2005, 09:31 PM
I am putting Jason's story here--a story of ups and downs of fear and hope and lots of prayer. Jason passed away 1 week ago today. We miss him so much. This post is from 9/27/04

Hi Everyone,
This is the week that Jason will be having all those tests done. On Friday, October 1, 2004 Jason will have a PET scan, a bone marrow biopsy and an MRI. The MRI is of the left foot as that is where the original tumor was found on 2/6/04. Jason has been on chemo ever since then--7 months. On 7/30 cancer cells were back in his bone marrow. He had relapsed so the chemo had to be changed. The new chemo is harder on him--he gets so tired and the oncologists have told him that there will be no cure. The scans on Friday will tell us if the new chemo is working. If it's not then there is no use continuing it. Even if it is working Jason may still want to stop it as he can't stand the side effects and the doctors give him no hope for the future.

Please pray for Jason and for us. My heart is already broken. I don't know if I can bear any more bad news. A pretty girl came up to me at church yesterday (Sunday morning church) and said, "I love your son. I'm praying for him." It made me cry and I had a hard time the rest of the day. I cry a lot these days. I never knew that I had so many tears. Jason never wanted pity, but we are in a pityful situation. Even though Jason is 18 and a foot taller than me, I can't stand the thought of losing him. I want him to have a future. Please pray for good results from the tests. Pray that God would heal him so that the doctors would be amazed and we could give glory to God for his miraculous healing.

Prayingmom
09-01-2005, 09:40 PM
I am putting Jason's story here. This is from the day after scans were done on October 2, 2004. Jason has been in heaven for 1 week today.

Jason had tests yesterday--so far only 1 result has come back--The PET scan. The doctor said that it is showing uptake in the left foot, where the original tumor was and which he had radiated for 6 weeks. It is not good news. Jason wanted to leave yesterday rather than wait for the MRI. Now the MRI is rescheduled for next Wednesday at 5:00. We are still praying for a miracle--but if we don't get that we must resign ourselves to what will come. It is hard, but our hope is not only for this life. Jason says that dying would be better than more chemo.

Time is of the essence to stop this cancer that many call a beast. At Christmas 2003 Jason had been more tired than usual, short of breath, had pain in his chest on exertion and then started having pain deep in his breast bone, but he didn't tell me all these symptoms--He told my mom at Christmas. The pediatrician, on Dec 31, 2003,said "I can almost guarantee that it is just growing pain" and did no tests. It was actually the cancer invading bone marrow with the accompanying anemia. I wish that I had insisted on more tests, but even at that time it was already in bone marrow. It wasn't until 5 weeks later and another doctor who referred us to a hematologist/oncologist that Jason was diagnosed. If rhabdo can be found at the earliest stage before it has spread (Stage 1) chances are so much better for a cure. For Jason, we had no early symptoms as there was no lump. He was stage 4 (the worst stage) when the cancer was found.

This is from 10/5/2004
Hi Everyone,
Thank you for your prayers for Jason. The news from the bone marrow biopsy was good. We were expecting the worst. I give God the glory. Let's keep praying that Jason will beat this dreadful cancer. The oncologist called around 4:00PM yesterday afternoon to tell us that no cancer cells were found in the bone marrow biopsy. At this point they have done the stains, but not the genetics study (PCR looking for the t(2,13) translocation). After the PET scan that appeared to show update in his foot this news is remarkable. I think that even the oncologist was surprised. I don't know what to think, except maybe we still have a ray of hope. Jason is still scheduled to have the MRI of his left foot done on Wed at 5:00pm which will let us know what the PET scan really picked up. Perhaps it was a false positive or David suggested that perhaps it is rapidly growing healthy tissue. Plese pray that the tumor is not growing at all in original site, as he can take no more radiation and the only other option would be amputation. The oncologist thinks that we should get together on Friday and talk. Jason wants to have input on his treatment now. If he is willing to go on with treatment next week will be a treatment week. He has actually been acting pretty relieved at the possibility that treatment might be over for him and he has been asking how long he has to live and how he will die. I pray that he will be willing to continue treatment even though he is so tired of the side effects of chemo--nausea and tiredness. It is hard for him to go on with treatment since the doctor said that there is no hope of a cure. At 18, Jason has the final choice, but I think that it would be a shame to stop when results are positive.

I am also researching antiangiogenesis drugs and hoping that I can find one that affects bone marrow and sarcoma and that the doctors will allow it to be added to his chemotherapy. There have been some excellent results with these drugs and they seem to target the angiogenesis (formation of blood supply) process of just the tumor, so there are not as many problems with toxicity to normal cells. Given that we have received a terminal prognosis, what could it hurt to try these. They do have their protocols they follow though. I am just searching for something to help him live.

This is such an emotional roller coaster--all the suspense leading up to scans and good news or bad news lifts us up or drops us down. How we want our son to live.

This is from 10/6/04
After we prayed with Jason tonight he told his dad and I that he had already decided before we got the results of the bone marrow biopsy that he is going to stop treatment. He said that he can't stand anymore chemotherapy. Even when there is hope for a cure, I have heard that it is hard to continue treatment. Jason has been told that there is no hope for a cure. I wish that he didn't trust the one doctor so completely who was so brutally blunt with him in saying that there will be no cure. It took away all hope for his future in this life. What can he plan for in the future? What does he have to look forward to now?

He is responding to this chemotherapy. I don't want needless torture for him, but this chemo is working right now. No cancer cells in his bone marrow. There could always be some major breakthrough in cancer treatment at any time that could give more hope. It is hard to think about him just quitting and then the progress of the disease and Jason's decline. He looks so healthy now. His hair has grown to 1/2 inch. His color is good. He is 6 feet tall, 140 lbs--hasn't lost weight. Even his blood counts are good. I've always thought he was so handsome, but, of course, he thinks he is not at all. I love him so much.



This is from 10/9/2004:
Hi Everyone,
Today is October 8. We got Jason's test results back and they were actually good. His bone marrow biopsy was clear of all signs of cancer--the stains were clear as well as the genetic studies. The PET scan had showed uptake in his left foot, but the MRI showed no sign of cancer. So we praise God for these good results. Also Jason has agreed to continue treatment for awhile. He had been ready to stop treatment. So this is a real answer to prayer also. Every 2 rounds--about every 6 weeks he will have scans done again to make sure the chemo is working.

Jason was asking last night about where this cancer spreads and what is done if it spreads. Then he told me that in has found a lump. An ultrasound was done of the area and numerous spots lit up that seem to show metastatic disease and active cancer cells. A fine needle biopsy of the lump is scheduled for next Wed. to verify. This just made me sick. If it's cancer it will have to be radiated. I hope that he will continue treatment after learning this news. Please pray that God would take care of this lump and that when they do the biopsy that there are no cancer cells, that it is another false positive. Pray that every cancer cell in Jason's body would be cleared.

[Remember--this is a chronicle of the journey we made with our dear son Jason. Jason's struggle with cancer is over forever. He passed away last Thursday]

Prayingmom
09-01-2005, 09:45 PM
This post is from October 25, 2004--Just before Jason had surgery.

Thank you so much for your words of encouragement and your prayers for Jason. Sorry I haven't been here for a while. We've been busy. We had company from out of town and several doctors appointments for Jason. We saw the urologist and the oncologist who both said that we must assume that the masses in Jason's testicles seen on the ultrasound (too numerous to count) are spread of his cancer-rhabdomyosarcoma. A fine needle biopsy will not be done. Jason is scheduled to have surgery on Wednesday. He needs to be there at 7AM and the surgery will be a couple of hours later. While he is on the operating table a section of tissue will be taken and checked for cancer cells and if it is cancer then both testicles will be removed. If this is done he will have to have testosterone replacement therapy for the rest of his life. Jason is willing to do this. The oncologist wanted to make sure that Jason wasn't being pressured into this. I can't even begin to talk to him about it. I would never pressure him. I hate for them to cut him. I can only hope and pray that this will stop the cancer and that he will have years to live. Even now when it looks so hopeless that this could be anything but cancer, we pray that it won't be cancer or that God would take care of this before Wednesday.

Jason went out iceskating with friends on Saturday night. I was glad that he wanted to get out and have fun. He came home sad and sat alone for awhile. He wouldn't tell me why. He just said, "Don't worry about it." His friends finally told me that Jason can't skate as well as he used to because of the damage one of the chemo drugs has done to his ankles. While everyone else had fun, Jason had to sit out and rest a lot. This is my son who never got tired, who always had more energy and never slowed down. I love him so much.

Lots of girls visit Jason, but tonight the girl he likes best came to visit. She doesn't get to come often. She lives 5 minutes away, across the river, but it takes an hour for her to get here since there is no bridge near us. Her mother always brings her and drops her off and she stays until 10PM. Jason had his dad rent a couple of movies and they watched movies together, and sat on the trampoline alone in the dark for awhile. At least the weekend ended better for him with her here for a few hours. I don't know if she knows how much her visits mean to him. Jason is such a gentleman and very shy with girls. The most he has ever done is hold her hand--I doubt that he has ever even kissed any girl.

I so dread this surgery for Jason. More than anything else pray that Jason will be healed, that God would take this cancer away and that there will never be cancer cells in his body, for strength and health for his body damaged by chemo. God can heal--God still does miracles.

Best wishes always,

Prayingmom
09-01-2005, 09:50 PM
This post is from the day that Jason had surgery. I think it was October 27, 2004.

Thank you so much for praying for Jason.

The surgery is over. Jason did fine. As the oncologist expected, the surgeon found that the testicular masses were cancerous, so both testicles were removed intact through 2 abdomenal incisions. Jason was wanting to leave the children's hospital as soon as he woke up--(woke up to the sound of crying babies all around him in the recovery room). He got to leave 3-4 hours after surgery. I have grieved for the loss, but he has shed no tears. Jason will never have children. Realistically, given the prognosis--I can deal with this loss. Losing Jason would be much harder. Please pray that Jason doesn't have a relapse, that he can live a life with purpose that brings glory to God. I did ask the oncologist today if this would be considered a second relapse and she said that it is not. She calls it an isolated testicular relapse. Since it didn't return to his bone marrow, it was not considered to be another relapse.

He is in some pain in the area of the surgery as well as in his throat from the intubation for surgery. He doesn't want to be knocked out so he won't take the narcotic pain relievers. He has always hated giving in to pain and has often refused pain medicines. I did give him Ibuprofen 600mg tonight. He won't even use the ice bag. He drove himself to church tonight.

God bless you all.

October 29, 2004
God can just turn things around. We are definitely praying for God to work in Jason's life, to heal him.

Jason has been in some pain, but he doesn't want to take the narcotic pain reliever that was prescribed. I'm not sure if he is just being tough or if he doesn't like the way the medicine makes him feel. When I ask him how he feels he says that he is fine, but he told his dad about the pain.

September 20, 2004
Thank you so much for your responses and that you are praying for Jason. It is so hard just watching him go through all this torture with chemotherapy, when I just wish that he could have his life back and be starting college like all his friends. How quickly things changed for all of us the day he was diagnosed and how I wish that we could have just a few of those carefree days once again when we were all healthy, laughing and hiking in the woods, playing in the creek. I wish that this were just a bad dream that I could wake up from.

Prayingmom
09-01-2005, 10:24 PM
Random thoughts from 2/2005
Someone said, "Anything for our precious children!" I agree. I've thought about that a lot and yes, even as far as to give my own life to save one of my children, I would do it. Go ahead and take my heart for them--it already belongs to them anyway--from the moment they were born and even before--they have had my heart. If I could give my life for Jason, I would. I love each one of my 4 children so much and even if I had a dozen children it wouldn't make losing one any easier. My brother Billy died in a car wreck when I was 16, and he was almost 15. A car accident is so sudden--my brother was just gone in an instant. It was in 1972. It has been 33 years and I still miss my brother. I will miss him until the day I die. So I know as a sibling what it is like to lose a loved one seemingly before their time. The thought of it hurts even more as a parent and with a child with cancer. The uncertainty of it all, pessimistic doctors who say there is no hope, crying out to God for mercy, needing a miracle--and knowing that we don't deserve mercy or a miracle any more than any other parent who has a child with cancer. Always having had healthy children, the world of pediatric oncology has been a shock. It hurts so much to go down to the oncology clinic and walk in to see all those precious little children having to endure the torture of cancer treatment and knowing that many will not make it.

God's blessings to all. Thank you all for stopping by to check on Jason.

Jason's grateful mom--no matter what the future holds, I have been blessed.

Prayingmom
09-01-2005, 10:59 PM
For those who are interested, I am just writing a chronicle of the journey that my dear son Jason made since he was diagnosed with a rare childhood cancer called alveolar rhabdomyosarcoma in February of 2004. It has been a journey of hopes and dashed hopes, the torture of chemotherapy, many prayers, ups and downs-a roller coaster ride that all who are given this diagnosis take--only a bit different when it is a child--or in Jason's case, a young adult who at 18 was ready to finish high school and head for college. He lived through it with strength and courage, never complaining as he made his own decisions about treatment and our hearts broke as we watched him fight. He left us last Thursday at 1:00PM to go to heaven where today we live in the hope that he is cancer free and happy and healthy. We miss him so much.

Jason was on chemotherapy continously from the day the cancer was diagnosed in February 6, 2004, until December 1, 2004. He was supposed to be on this high dose IV chemotherapy until February 2005, but in the middle of a week when he was to receive chemotherapy every day in the clinic, he decided that he couldn't take it any more and quit. The doctors had already said that there was no hope of a cure and he was so sick of being so sick all the time. He really had 3 more treatments every 3 weeks to go, but we couldn't force him to continue. He had already endured more treatment that he didn't want to take, when he said, "Okay, I'll do it just for you, Mom." Always as he had chemo I would pray that God would use the chemo to rid him of the terrible cancer and I would cry as the poison dripped into his dear body. He quit treatment with no intentions of ever starting it again and the doctors made no plans for more scans, although Jason was under the impression that if he ever chose to, he could go back on chemotherapy. In my heart I knew that if the cancer came back, it would be too advanced for more chemotherapy.

In December, without chemotherapy for the first time in a year, and the lastest scans done on November 17, 2004 showing no signs of cancer--Jason began to feel the best he had felt in over a year. By Christmas, food even tasted good to him for the first time since before treatment started. He felt great and was so happy. He had known a girl named Katie for some time. She had dated one of his friends. I'm not sure when they started dating, but she came to his 19th birthday party. Just a skinny little thing, she sat in his lap that evening, even though the girl he had been dating from across the river was at the party so it seemed a bit akward. Jason had always been so shy, it was kind of surprising to me as his mom to see a girl sitting in his lap. Being nosy, I looked at an instant message he sent to her later. In the message he sent he said that she had made his 19th birthday the best birthday of his life--she had given him his first kiss.

Jason didn't get to start college, although he wanted to, in the fall of 2004 with his class. Katie, also 19, was enrolled in a school in Birmingham, AL. Jason spent a lot of time instant messaging her, calling her, longing for her to come in and hoping for summer to come and Katie to come home. He had a really good couple of months and then he noticed a lump in his arm.

2/7/05: (Exactly 1 year since first diagnosed)
Jason told us about a new lump in his arm just yesterday. It was biopsyed today. It is cancer again. 3rd relapse we are heartbroken. What more must he suffer. My mom is already talking to me about where we will bury him. We don't know how much time we have left with him. Probably only a few more months. Mom lives 300 miles away and would like him buried there so she won't have to travel far. Tears........crying. I would want him close, so I can visit the grave every day and cry and put flowers there. Dad had a stroke and can't travel easily. He can't come to a funeral here. We still keep praying for a miracle, but are losing hope.

2/8/05
Since we heard the bad news today, he has stayed in his room on his computer. I don't know what to say to him except I love you. He's too big now for me to just sit and hold him. He always been a good boy. He didn't deserve this.

2/9/05
I had to be gone today with my other children. I was almost afraid to leave him alone for those 4 hours--with all that he must be thinking--would he hurt himself. He says that he is not in any pain right now. Some of his friends have come by today and that helped. He applied for disablility months ago and gave up on ever getting it--2 disablity checks came for him today and that cheered him. Once they denied him any payments because they said he wasn't terminal so him getting the checks now is sad to me because even they (SSI) have changed their minds, but I won't tell him. Ever since this weekend my neck has been so stiff--it hurts so bad--I think it is the stress--I can't even look at him for long, or talk to anyone about him without crying. We are still praying........God can still heal him........This is so hard.

aelisemc
09-02-2005, 01:24 AM
I am so sorry for your lose, I know from experience those words have been said so many times to you, I also lost my son, Zachary on May 14th of this year. He had been sick with a very rare form of epilepsy for 5 years. My thoughts are with you and your family as you go through these next weeks and months. Our stories seem very similar, I also know what it is like to lose a sibling, my sister was killed when i was 16 (she was 19) in a car accident. You are able to see what your other children are going through losing their beloved brother. Hang in there I wont tell you it is easier almost 4 months later, but knowing that you did everything that you could for your son will give you some peace. I have found that looking at pictures and remembering the fun and not so fun times have given me great comfort. my thoughts are with you.
Ann

clogbopo
09-02-2005, 01:29 AM
I am so sorry to hear that. This is such a shame and he is so young and it is so unfair.

Prayingmom
09-02-2005, 03:28 AM
aelisemc,
Thank you for your kind words. I am so sorry that you, too, have had such loss, both of your son and of your sister. It was one of the things I cried for as I looked to the future--that my children would know the same loss that I had when I lost my brother. It is hard to lose a sibling--I already knew that. It is even harder to lose your child. God bless you.

clogbopo,
Thank you for stopping by and reading Jason's story. I know that we are all anonymous here, but I just wanted this story here so others could read about him. I wish that he could have survived this cancer.

Prayingmom
09-02-2005, 03:38 AM
From Feb/2005

We've tried to have hope. The doctors gave us no hope after it came back the first time. They told us not to even look at statistics because the statistics are so bad. Even now, I was trying to talk myself into--if it is only 1 lump, maybe it could be removed and radiated. My son is trying to decide if he even wants to go get more scans done. I asked him about it today--if it is just one lump in his arm. He told me that he just noticed another lump on the left side of his chest. He's thinking no more scans--that it will be better just not knowing. We have lots of people praying for him, church and family have spread the word. It seems like that's all we can do. I just hope that if God takes him that he won't have to suffer a lot. We need a miracle for him. I don't know why this has happened to him. His doctors say there is no known cause for this cancer or most other cancers of childhood, but there have been at least 2 other children in our small town with this same rare cancer and 1 child with leukemia who lives just a few streets from us.

From 2/11/05

It made me very sad today when a lady from the hospital called to set up a time when they can come and talk to us about hospice care for my son. They think that the cancer will progress and we will need it soon. We are thankful that he is not in pain. He does seem very sad.

My husband and I were married for almost 7 years before our first son-Jason- was born. It got to where I just couldn't bear working in the 2 year old nursery at church anymore and I cried when my sister-in-law announced her pregancy 3 years before our son was born. They didn't even want children then--her husband was still in med school. Finally I went for infertility treatment. I had hyperprolactemia and had to take medicine for it and take basal body temp every day and still for over a year there was no pregnancy. Finally I just gave it all to God and told Him that even if He didn't bless us with children I would still praise Him. The next month I was pregnant. I remember holding my newborn son, so perfect, so precious and I felt so unworthy, but so blessed to be his mother. My husband videotaped him at 9 days old. I sat and watched the tape later that night and cried as I thought of how soon my little baby would be grown--you know the old song "turn around and you're 2, turn around and you're 4, turn around and you're a young man going out of the door" and now it does seem like the years have flown by. I loved him, read to him for hours. He taught himself to read. He is funny, bright, athletic, handsome, daring (of course I'm a little prejudice). He always amazed me with his deep insights and how quickly he learned. Once we looked up info in the encyclopedia about a famous man. After reading all the man had done, my son asked, "but, Mom, was he a Christian?" The article didn't say, but that, in the end, is the most important question of all. My son asked Jesus to be his Savior when he was only 4. So no matter what happens now, in the end--everything really will be okay. (I just don't know how I will make through the coming months and in the years between, but I am ready to say, though it hurts, God, even if you take my son, I will still praise You.) There is a better place than this world, where there is no suffering, and all the cancer patients there are healed and healthy. We still are praying for healing here and now.

Prayingmom
09-02-2005, 03:42 AM
2/11/05

Thank you all for praying. I feel my heart will surely break. Nothing new to report, just thinking about things.

Just thought I would list the things that make me cry right now, if for no other reason than to have it written down.

I cry:

When I think or say the words--we were so happy. I am thankful for those happy times of laughter and joy. I thought they would never end. We have been so blessed. Eighteen years of strong healthy children, I have found, is more than many families have. We've seen so much sorrow in other familes this year. I wonder when we'll ever be happy again. Things will never be the same without our oldest son.

When I look at my son's dear face or hear his voice and think about possibly very soon I won't look on him--see his face or hear his voice--until we meet in heaven, but thankful we do have that hope--that this is not the end.

When I look at a picture of him and think of the years that the pictures and memories are all we have left and his brothers and sister will someday say--that's your uncle- He died before you were born--I wish you could have met him--he was a great guy. I had a brother who died in his teens and we have missed him for so many years. The missing of one who has died young and wishing they could have lived a full life never really ends for those who knew them.

When I see others teens, working or in college or just having fun at the mall, and wish that my dear son could be having the best time of his life right now, instead of knowing his days here are quickly passing.

When I think of getting him to sign forms for Do not resucitate(sp?) and joint accounts at the bank.

When I think of him suffering and on hospice as we await the final days. Oh Lord, please don't let him suffer.

When I think of the world just going on without him. The sun will still shine, the flowers will bloom, the world will go on, while he lies in the grave. Our lives changed forever.

When I think of the day he dies. It may be a relief in some ways--no more suffering, no more cancer, no more looking with dread to the day. But then we will have the funeral to arrange and to live through, standing there trying to be composed when my heart is ripped apart and a piece of my heart is placed in the grave with him.

When I think of standing at his grave as they bury him in his black suit and red shirt, that we bought for the prom, before we even knew he was sick.

I guess I could go on and on. I'm torturing myself. In reality, I can cry for almost any reason. All people have to do is ask me how I'm doing and I can say "I'm fine," the expected response or I can think, "How can I be fine, when my son is dying?" and just get started crying again.

What calms my spirit for just a bit are hymns and songs of praise. Today, especially, I was thinking of this song;

When peace like a river attendeth my way,
When sorrows like sea billows roll,
Whatever my lot, thou hast taught me to say,
It is well, it is well, with my soul.

It was written my a man who had lost his fortune in a fire; he sent his wife and children on ahead to voyage to England, while he took care of some business matters and would follow. Their ship struck another and sank and his wife and children drown. As he passed the spot where they died, he wrote this song. He knew deep grief as we do now. It is hard to make sense of all of this suffering--

Thank you for praying. I fear the hardest part of my son's journey is yet to come. (He went to heaven last Thursday)

Prayingmom
09-02-2005, 04:01 AM
2/12/05
Hi everyone,
Thanks so much once again for caring and praying our son. I asked him today, if there are any new lumps. There are none that he has noticed, but he is noticing that he bruises more easily. This is an indication that his platelets are low and that the cancer is taking over his bone marrow once again. Probably his red blood cells and white cells are low again, too. It would seem that our time with him grows shorter and shorter. There is no magic place where we can take him or special words that we can say that will make it better and we don't know what more he must suffer. He is not in pain, and still laughs with his friends. Two of them came home this week-end just to see him, probably thinking that the good times are almost over. All we can do is continue to pray and look to the only one who can heal -- our Great Physician. Sometimes I just don't think I'm strong enough to bear this pain, this loss, even though my dear boy goes on each day, with no tears, no complaints, bravely showing us the way.

2/13/05
When we went to church this morning, we left Jason here at home sleeping. He hasn't been to church in awhile and we don't push it because flu is rampant here. In his weakened state if he got the flu that could be the end. He was still sleeping when we returned, even as 2 friends and his brother were on his computer and X-box in his bedroom. I kept walking past his room, wondering how he could keep on sleeping, worried that he might already be gone and thinking that if he could just pass on like that it would be okay--just so he doesn't have to suffer more. He finally did wake up and say that he feels fine. I thought how full-circle we've come. I remember watching him sleep as a newborn baby--the joy of each small breath--my first little baby--watching just to make sure that he was breathing and now he's 18 and I watch to see if he is breathing, and know that without a miracle his breathing will stop. Some of the songs at church made me cry. The choir with a soloist sang "The Anchor Holds" and that applies to our situation. I made a good lunch--well my husband grilled-hamburgers, hotdogs, filet mignon steaks, chicken breast and I made lots of stuff to go with it including homemade chili for the hotdogs and deviled eggs. They all enjoyed that.

Through this whole past year I have wished we could just hold on forever to the good days (even this day), that the cancer would just hold off, and stop, if just for a while so we could have more time to enjoy together as a family, before my son is gone. We hope to make a visit to grandparents in 2 weeks, we would go next weekend, but my son's girlfriend (Katie) is coming home from college for a visit. They can give him red blood cells and platelets, but if his marrow is failing--well this can't go on too long and I wonder how things will be in a week, 2 weeks or a month. And I keep thinking--God can still heal him. He is able to do that. Nothing is too difficult for God. Jesus even brought Lazarus back when he had been dead for 4 days. So we keep praying, but know that what we really need only God can give us--a miracle.

2/14/05
Sometimes my husband has not been open to talk about my son's cancer. He has believed that God will heal him and would discuss nothing else. Sometimes now I can talk to him. Last night we finally got a picture of our whole family with the Christmas tree, which I have refused to take down until this picture was taken. It may be the picture we send out with Christmas cards next year. After the picture I talked with my husband about one thing that has bothered me--it was me that desperately wanted children, he had said that it didn't matter to him if we had any. It's funny how his words from 20 years ago have stuck in my mind. If I hadn't wanted children so much, that I went to infertility doctors, probably none of our children would have been born and none of this suffering would be happening now. We would just be an old childless couple and would have never known the joy and happiness (nor the intense sadness we feel now) our children have brought to our lives. He said that he was glad that we have 4 children. That means a lot to me.

With my son, I regret that we moved away from his hometown (which was also my husband's hometown) when he was 10. He had such good friends and our families lived there too and it caused him such sadness to move away. It took him years to make good friends here and he has been lonely. My husband had never lived away from that town his whole life and I think that he always wanted to move away. My dad was an ironworker welder and worked on construction jobs. We had to move at least 6 times after I started school and I always felt out of place and lonely and I could never claim any place as my hometown, and then my brother died. I didn't want that for my children, but husbands have to have jobs and so we moved.

I regret not going on more trips with the kids and not getting more "things" like motorized riding toys (but with 4 kids-it would have been so expensive). Though my son is so brilliant--he has always thought that he couldn't live up to our expectations and I hate that. Sometimes I wish that we had never gotten him video games because it seems like he has spent too much time on them and not on people, but we don't complain about that now since it still gives him pleasure to play these games. One of my biggest regrets is that we didn't know about this cancer soon enough to stop it--if we could have only known before it spread--but there was no way we could have known, but I still regret that we didn't know sooner.

Our pastor had a special prayer time for my son with some of the deacons and high school youth leaders. I know that I could talk to him, but he is such a busy man and he has been sick--he will be having a kidney transplant soon-the kidney will come from his daughter. There are always people at church I can talk and cry with. It is so hard not to cry when I start talking about this with anyone. I just can't cry and talk at the same time.

2/14/05

My husband tells me that it doesn't help anything whenever I mention these regrets. I am doing it less, really I am. I know that for all my wishful thinking that there was no way that we could have known about the cancer sooner. Sometimes an injury with resulting scans has actually saved a child's life, by allowing the cancer to be found sooner, but that was not to be in our case.

My mother and her sisters are the world's worst for holding grudges for years, looking back with regret and blaming others. My mom has blamed my dad for 30 years for letting my little brother stay at my aunt's house where he ended up going with a cousin who had received a ticket for reckless driving. My brother had been told not to go with him anywhere. That day my brother died immediately as the vehicle rolled down a steep hill. His neck was broken, while my 2 cousins only received minor injuries. Now dad is old (80) and crippled from the stroke he had after his heart attack and during his by-pass surgery four years ago and mom is his unhappy caregiver who doesn't drive (though she has had a license for 40 years) and feels trapped. Maybe they both feel trapped. I really don't feel that I'm like her and yet I still wish that things could have been different for my son.

The hymns and songs of praises do help. There's a chorus that goes, "God is in control. I believe that His children will not be forsaken." I know that He is in control. I know that He can heal, too. So we keep praying. After all even King David in the Bible, wept and prayed, as long as his child with Bathsheeba lived. I know it is a bit different, but I do pray and cry out to God for mercy that he might spare my son's life (and in the back of my mind, I'm thinking, or a merciful death without suffering if he is not to be healed here).

This week my son may see a new doctor who can do phase 1 trials. The children's hospital doesn't do phase 1 trials, but at 18, my son is old enough to do these. He will never agree to more chemo with the nausea and vomiting. The doctor said that there may be some biologicals--immunotherapy that they can try. I believe that the day will come when there are better treatments for cancer. There was a time when our president (USA) declared war on cancer. The cure hasn't come yet. I asked my husband why he thought more progress hasn't been made and he said that the appearance of AIDS might have been a factor. You know, by necessity the search for treatment for AIDS because of sheer numbers of people affected(this disease is totally devastating the continent of Africa), has taken many researchers and research dollars. Childhood cancer research is very much underfunded. Some mothers whose children either die or recover from cancer become advocates and raise funds for childhood cancer research. There won't be a "magic bullet" for all cancers as some had hoped, but if researchers can find targets for individual cancers, so that only cancer cells are attacked by the treatment, then there will be more hope. I was just reading about research on this type of treatment where they were specifically working on a target for my son's type of cancer. It said it was in the pre-clinical phase. One always hopes that the treatment needed will be there in time for their own child, but research is slow and pain-staking always and even more so for a rare childhood cancer.

Prayingmom
09-02-2005, 04:12 AM
2/15/05 (I posted my first note on the death and dying forum on this date)
We've made it through another day. I haven't cried as much today. I feel sort of numb. This is really my life. My son is dying. He is dying. The doctors can't do anything. We can't do anything. Everyone is powerless to make him well. Lots of people are praying for him and still this is the way things are. We are really going to have to decide where to bury him and write an obituary and lay him to rest.

How did this happen? He was always the healthiest, the brightest, the strongest, the most daring. It's only been a little over a year ago that we even knew he was sick and now we come to this.

My son doesn't cry or show much emotion except he seems happier when his friends can come. He asked tonight what his blood counts are--but the last blood they took wasn't to check counts. He feels that his counts are low. He can still get red blood cells and platelets (I think he probably needs a transfusion now) and that will help some, but he can't go on long with cancer cells taking over his bone marrow.

I'm afraid he doesn't feel well enough to do much to get out of the house. He enjoys his on-line games. He enjoys his friends coming over. Knowing that time is growing short though he didn't say it that way he has asked if he can visit his old high school tomorrow. I can't go to sleep..........but I'll try. It is so late.

Remember us in your prayers.

I posted my first note on the death and dying forum

2/16/05
We haven't contacted hospice people yet. Although my son doesn't need this right now, if things progress he might soon and it will be a comfort if we can relieve the suffering he may have. We are supposed to set up an appointment with them and they will come to our house. My husband, son and I will all need to be present at this meeting.

Thanks for the encouragement to pursue this. Thanks for caring. I still pray for healing, but I know that this all needs to be in place if my son needs it.

I have read the story of Peter Marshall who was chaplain of the US Senate and pastor of a big church in Washington, D.C. back in the 1950's. He died an early death-1 heart attack, then a space of time, then a second heart attack. His wife, Catherine Marshall, wrote his biography. He preached several sermons on death and dying and how if we know Christ as Savior we have no need to fear death. Elizabeth Elliott, after her husband along with 3 other missionaries, were killed by Indians in South America that they were trying to reach for Christ leaving an infant daughter, said that the way she got through it was to "just do the next thing" however mundane and ordinary--sweeping, washing clothes, dishes, etc.

2/16/05
Thank you so much for your prayers. We desperately need them. Just now my son told me that he has noticed 2 more lumps. One is on his chest and one is on his shoulder--and so the cancer is spreading. All I can do is just listen--I can't stop this--I am helpless. I set up an appointment for him to get a red cell and platelet transfusion tomorrow at 10:30, but he doesn't want to get up and go to the hospital tomorrow. I wanted him to feel better when his girlfriend comes in this weekend. He went out and bought her some things for Valentine's Day yesterday. He hasn't eaten today. He says he is not hungry. Another thing that makes me cry: just wondering if he will be with us still when spring comes or when his sister has her birthday on April 3rd.

2/17/05
My son has noticed 2 new lumps yesterday. There is a new one on his chest and one on his shoulder, so the cancer is spreading. Such an aggressive cancer. If you search for ( rhabdomyosarcoma- most common childhood sarcoma) - that is what he has. He wouldn't let me fix or get him anything for lunch, and wouldn't let his dad get him any supper. Finally, after church, I just bought him one of the sandwiches he loves and he ate it. He doesn't talk about how he is feeling, but he is depressed.

He talked to a new oncologist with a new group today. This doctor does a lot of research. He wants us to get a sample of my son's tumor from the hospital where surgery was done. He said they can test it with monoclonal antibodies to see if any of them will work. In all my research I haven't found monoclonal antibodies being used for treatment so I don't know for sure what is going to happen, but how I pray that something will work--if only new hope could be brought to all children with this cancer. My son will see this doctor after clinic hours on Monday. On Monday, also, I'm hoping that he will have counts done and get a transfusion if he needs it.

The lady from SSI called today and said that she could make the disability payments retroactive to the day we applied the first time back at the end of March, so he may get more money. I just wish that we could give him the good health and time to enjoy spending it. It will be the most money he has ever had in his life. The people at the bank say that unless we have power of attorney, my son will have to come into the bank to sign papers to make his account a joint account or a payable on death. When he goes into the clinic on Monday we may also get to talk to them about hospice care.

You asked about our little girl. She will be 10 soon--she's almost as tall as me now (I'm 4' 11" & my husband is 6'). We have sons who are 17 and 14 also. If you click on my name at the top of one of my posts and go to "anyone over 35 and pregnant" my post #9 it tells of our struggle with infertility. I was 35 & 39 when the last 2 were born. I love each one of them so much and wish we could have had more, but it wouldn't make losing one any easier. The other children--well they don't cry about their brother--they pray and ask their classes at church to pray. My daughter is always wanting to invite a friend to spend the night or planning play times. She has 2 really good friends. Our children have been told how critical things are for their brother, but I don't think any of them can really comprehend what it will be like for him to be gone. I'm not sure I can either, but I sure think about it too much. It is better for me not to go there.

Prayingmom
09-02-2005, 04:16 AM
2/18/05
My son's cold is bothering him and he is coughing more. One of the places this kind of cancer likes to spread is to lungs--he hasn't had scans done for months--just doesn't want them. Every time he coughs I am more concerned. It is probably just a cold--that's all--(I keep trying to convince myself) but with all the lumps (small cancerous tumors appearing, one was tested so we know they are cancerous) I can't help but think about what is happening to him inside that we can't see.

When someone you love is so sick and you want more time with them--one more day is never enough.

2/18/05
all who stop by,

Thank you so much for your concern and prayers for my son. His friends do know how much they mean to him, but they mostly are away at college right now. His 2 best friends came in last week-end after we got the bad news and this week-end his girlfriend is in and it means so much to him. I really do think they know that they brighten his world and make the days easier to bear.

Well, Monday is the day that we find out if my son can be involved in a clinical trial. They want him there at 3:00PM at the new oncologist's. His appointment for blood counts and transfusion (if needed) is at 11:30 at the place he has been treated all year. A transfusion of 2 bags of packed red blood cells takes at least 2 hours and then if he needs platelets it will be more time plus we have to wait for the blood counts and then for the right blood to be sent up. I probably should just take him early, since the new doctor's office is concerned that a transfusion will make us late for the appointment. It would be nice if he didn't really need blood, that my son is wrong about that, because certainly needing blood means that it is in his bone marrow again. It would be wonderful news if he didn't have to get a transfusion, but my son has been correct so many times about relapses and such. We are supposed to talk with hospice that day while we are there also.

As he refuses any more chemo, there aren't many options left. I thought that the new oncologist was going to test monoclonal antibodies. Although it was my husband and my son who talked with the new oncologist, it was my understanding that the doctor is not actually creating a new antibody, but is just wanting my son's tumor sample to test the antibodies he already has available to him to see if any of them work. I don't think that any have been created specific for rhabdo yet, but I haven't spoken discouraging words--just praying and hoping that there will be something that will work.

I JUST FOUND OUT-- IT IS NOT MONOCLONAL ANTIBODIES THEY'LL BE TRYING. It is another biological--some growth factor?? I don't know what it is? --but it is not chemo. So it's back to my research--there is more information about it on the papers they gave my husband when he delivered the tissue samples to them. The drug company is actually paying for testing the tissues--I'm sure it would cost us a small fortune if we were paying. I know this is just a last ditch effort. ---- Is there really any hope? I know we are just grasping at straws, but we are so desperate--but not so desperate that we are going to Mexico--- I really think that there are alternative treatments that just take advantage of people. Please, I hate to keep bothering you all, but please pray that whatever this oncologist tries that it will work and that my son is willing to try it and will have few or no side effects. If something like this works for him it might help other children with the same cancer. Perhaps God will give us the miracle that we have been praying for --healing for my son -- and it can help others, too. I will be so sad--another disappointment--if we go into the new clinic and the oncologist just says that nothing he has will work. We want to hope, but our hopes have been dashed so many times as he has been in remission twice and then the cancer comes back.

meatball
09-02-2005, 04:16 AM
prayingmom-
just wanted to send love and hugs your way. I am so very sorry to hear of your loss, I lost a dear friend of mine when I was in high school. I still think about him everyday. I will ask him tonight to watch over Jason in heaven. Know that Jason is no longer in pain.

Keep telling your story.. please take care of you too.

Prayingmom
09-02-2005, 04:25 AM
2/19/05

Thank you so much for your prayers and encouragement. I have not cried today, at least not so far. Emotions come and go, but mostly I stay in a state of numbness--trying not to think of a future without my precious boy. I try to stay away from the thoughts of him suffering, dying, being buried and missing him for years and years. Praying always, but knowing that it is out of my hands and knowing that we must accept whatever happens. We are not the first or last ones who will suffer such a fate. I'm very grateful that he doesn't seem to be in any pain. His girlfriend is here right now. She brought all her books over so that she can study while she is here. Last night they went out to see a movie. I haven't heard him coughing much today--I hope his cold is going away. I'm praying so hard for a miracle straight from God's hand--or even through this new doctor--a new medicine to give all children with rhabdo more hope. Because of my son's age, he makes his own medical decisions now and that has been so hard to accept, but even if he was less that 18, certainly, his opinions on treatment should still be considered.

I bought some supplements (just multivitamins, Calcium, Vitamin C, Green Tea Extract........) for my son, but he has a hard time swallowing tablets anyway and for awhile he took some of the things I bought. The immunopower has been recommended before, but he isn't interested. He doesn't want to take anything extra now--not even the Bactrim and Diflucan the oncologists want him to take to prevent infections while his immune system is weakened from chemo. With the relapse he and the oncologists probably think it doesn't matter now. Unless the oncologist says there is hope with this Phase I trial, my son has already given up on treatment. He says that he just can't stand anymore chemo and the oncologists talk about quality of life for him that more chemo would take away. We just need a miracle. Take care. We just need to get through one day at a time. God's blessings to you and your family.

2/21/05
Thanks for your messages and for your prayers. Really, I'm am so thankful for my other 3 children--my oldest son's cancer makes me worry about this or something else happening to the others. I could never have imagined anything like this happening to any of my healthy children--and this my oldest son was the healthiest of them all--never getting sick and refusing to wear a coat even in freezing temperatures. Even if I had 12 children it would still make it no easier losing one as we have hopes and dreams and special love for each child. If you have only one child and lose that one, then your arms are empty and what else do you have? I see that, but this is still unbearably hard. Having lost my brother at an early age, I know what it is like to miss someone who was "too young" to die, as I have visited his grave on the hill above the house my great-grandfather built before 1900. My grandmother and all her brothers and sisters were born in that house, as well as my dad and all his brothers and sisters. I have missed my brother for 34 years and still cry on the anniversary of his death--July 2--. He was good--better than me--why did he have to die? Trying to make sense of it--all these years. I know the Lord used it to bring me to Him, but the loss has always been so hard. It was my brother's death, in fact, that made me want to have more than just 2 children, since I was left as an only child afterwards (but then mom and dad had another baby 2 years later when I was 18). I always wanted more than 2, so that if anything happened to one, the other wouldn't be left as an only child. We had hoped to have 5, but it just didn't work out and now I'm too old at 49 to have any more. A new baby would be such a joy, as my little brother made us laugh and brought such happiness to my heartbroken parents. I sometimes have thought about foster parenting--there is such a need--but it can be such heartache too--since you love the children and they don't get to stay with you and sometimes go back to abusive parents.

Tomorrow, my son will have blood counts done to see if he needs a transfusion. He thinks he does. He is usually right about these things and if he does it will take hours and hours. The appointment with the research oncologist is at 3:00 and that office is concerned that an 11:30 appointment at the other office and a transfusion will make us late. My son must sign forms of consent to participate in this clinical trial before they will even test his tissue samples to see if the new drug will work and unfortunately, I have learned in reading the consent forms that the clinical trial is for a chemotherapy agent linked to an antigens on specific cancer cells. Now it will be a miracle if it will actually work on his cancer--it may even be the first time his kind of cancer has been checked with this drug. They can check to see with the tissue samples from his tumor if this drug will even work. PRAY THAT IT WILL WORK.
Since it is chemotherapy even though it is linked to an antigen so that it targets cancer cells, it can still cause nausea and vomiting and many other side effects. Nausea and vomiting is why he stopped taking chemo and said he would never do chemo again. We haven't talked with him about it. Even if he signs his name to the form, he doesn't have to go through with the treatment. If he does do this then all those scans will have to be done again. Phase 1 Trials of Drugs--especially chemotherapy makes me think so much of human lab rats--I never wanted that for my son--I don't want him to experience unnecessary suffering. But if this treatment brought hope--a cure--for my son, it might help others also.

This weekend, I've even been afraid to ask him if the tumors on his arm, shoulder and chest are growing--I figure they are--but choose not to know. He seems to be getting over his cold and he truly enjoyed his girlfriend's visit. It was nice to hear him laughing and talking with her and she got him out of the house to go to a movie. I hope that she made it safely back to college 4 hours away in the rain. He had been getting so tired of us asking several times a day, "How are you feeling?"

He is such a sweet boy. He's always been so kind and considerate and I know it hurts him to know how much we are hurting for him. He has always been so concerned about others feelings. From the time he was 13 to the age of 16 he took piano lessons and he became so good at it--getting into the Level 4 books. I loved to hear him play. He could memorize so many pages of music. I so wish that we had video-taped him playing. He never plays anymore. He says the chemo has affected his ability to memorize and concentrate. Reading long novels was one of his favorite things. He never reads them anymore for the same reason.

We all seem to be at a loss for words. He doesn't even want to talk about the cancer. He just tries to stay busy with his online computer games. His days seem so long and monotonous. (Except for those bright spots when his friends come to visit). Because of the flu going around, we haven't even been encouraging him to go to church.

Thank you for praying--please remember us tomorrow--it's hard to pray for people anonymously I guess, but if you pray for us--I'm sure that God knows and hears and He knows who we are anyway. My son goes by his first name, but if you want a name you may use his first initial and middle name--J. David . Thanks for praying.

Prayingmom
09-02-2005, 04:34 AM
2/22/05
Thank you once again for your continued prayers. It means the world to us that you care. We were thrilled that my son did not need a transfusion yesterday. His blood counts were pretty normal. His hematocrit was 42, his platelets were 260,000, and his white count was 3.5. He was so convinced that his counts were low because he had bled and bruised more when his port was last accessed and the biopsy of the tumor on his arm was done and so we were convinced that his bone marrow was filled with cancer cells. So it is such a relief for us and I think he was very relieved. We praise the Lord that he has heard our prayers.

We met with the director of Alive Hospice. It was very difficult hearing all he had to say, but I felt that it was good that we met with him. If my son's health deteriorates and he is in pain and suffering, (after all--he has been given a terminal prognois), hospice can help. He can get care here at home which is where he would most like to be. We just still continue for healing.

The new oncologist that my son saw was very nice. Of course, this doctor didn't minimize the situation--relapsed rhabdomyosarcoma is a very dire situation. He has over 40 phase I clinical trials that he can try. Phase I is the first testing in humans and it is mainly to determine therapeutic dose. This week they will be testing my son's tumor to see which ones might be the most effective. But who knows--perhaps, Lord willing, one of these could offer hope of a cure that none of the currently accepted chemotherapy can. Being on a clinical trial is pretty demanding, as there are extra stays and visits just for checking blood levels of the test drug. Please pray for my son concerning this decision and for the doctors as they test his tumor. On the way home, my son said, "Mom, don't get your hopes up that there will be a cure. You're just setting yourself up to be disappointed." His hopes have been dashed so many times. But so many people are praying for him, and God hears prayer and God is able to heal. Pray that God would heal my dear son completely here on earth.

Thank you so much for praying.

3/01/05
The thing I keep thinking is that if we had only caught it in time before it spread--it would have changed everything, but we had no warning. Cancer in little children and all young people is heartbreaking--what they have to go through with the chemo, surgery and radiation.

We still have not heard from the new doctor about results of the tests he did on the tissue samples. I hope we hear some good news soon from him. I am afraid that he will want my son to do more chemo and I just do not believe he will agree to anymore.

Thank you so much for your prayers.

3/3/05
Hi Everyone,
Thank you for praying for my dear son. It is hard for me to get my son to try anything else, but I keep looking into these things. It has been a week and 3 days since we took him to see the new doctor who asked for the tissue samples of the tumor so he could check to see if any of the targeted biological treatments that he has (all Phase I drugs) might work. We still have heard nothing at all back from him. My husband called the office today and neither the doctor nor his nurse were in. Oh, I hope and pray that something he has will be just the thing that will work. A week and 3 days seems like so long--knowing that the lumps we can see are cancer-- My son hasn't mentioned any other lumps. I hate to even ask him and I don't.

3/4/05
Hi everyone,
Thanks for all your prayers and concern for my son. Things have not changed for him as far as we can tell--but so sure that things are happening and tumors are growing internally beside the 4 lumps we can see. With no chemo they are just growing unchecked. The new oncologist didn't call at all for over a week. Finally, my husband, David, just went to the office, yesterday, and sat and waited for someone to tell him results of the tests. To us it didn't seem like they thought it was urgent to let us know anything.

The tumor tissue was negative on all tests: for estrogen and progesterone receptors, Her-2, epidermal growth factor receptor, CD117, and CD34. This means that none of these targeted therapies will work. The doctor was not there in the office. There is a Phase I study of PTK787/ZK222584 in Combination wtih Bevacizumab (Avastin) in patients with refractory and or advanced malignancies that the doctor would like my son to try, but it was already full. One patient dropped out of it this week. Since the doctor was out of town, he doesn't even know the spot came open. David asked them to hold the place. This is antiangiogenesis therapy. My son has had company and we haven't told him any of this yet. His girlfriend, Katie, will be here this weekend and there are plans for lots of his friends to get together and go to a movie tomorrow night. Perhaps we can tell him about this on Sunday. He will have to sign a consent form. They monitor effectiveness with PET scans and it would be at no charge to us. David made an appointment for Monday at 11:00AM. I don't know if it is even worth it to put him through something like this with the many visits to the office it will require to be on a trial. As always, at his age--the decision is up to him.

It seems as if we actually avoid the subject of his cancer. He doesn't want to talk about it. He just wants to play his computer games and instant message his friends and talk and laugh with them when they come here. I am so overcome with sadness. I haven't taken the Christmas tree down--thinking that my precious boy won't be with us when we put it up next year, but I guess I'm going to have to take it down soon because sometimes I just sit and look at it with all the ornaments we've collected for 25 years including those Baby's First Christmas ornaments and the ornaments the children made at church with their pictures, and I cry. You know, even when your children are grown and gone you always expect they will come home for Christmas. But my son will never be here at home for Christmas again, unless God performs a miracle and we really do keep praying for that.

I wish our house could be like Sleeping Beauty's castle and our whole family could be in a deep sleep until the cure is found for alveolar rhabdomyosarcoma and then we could just awaken, my son be treated and be well and healthy again.

Thanks for thinking of us.

Prayingmom
09-02-2005, 04:53 AM
3/9/05
Hi Everyone,
Thanks for leaving messages of encouragement. It means so much to know that you all care and are praying for my dear son. Someone left a note on my string on the death and dying board here that said that she didn't believe that God heals--I answered her today. I still believe. I still have hope in God, whether or not my son is healed. We are stilling praying for healing--it is all we can do.

On Monday, my son went to the new doctor, a research oncologist. After
reassurance that he could drop out of the study at any time and that the
main side effect is high blood pressure, which may not be a problem for
a slim young man like my son, who normally has low blood pressure and that
nausea is not usually a problem, my son signed the consent form. It is a
Phase I trial of 2 antiangiogenesis drugs -- PTK787/ZK222584 (PTK) in
combination with Bevacizumab (Avastin) in Patients with Refractory
and/or Advanced Malignancies. I imagine that he is probably one of the
first rhabdomyosarcoma patients on this trial. He receives a PTK tablet
every morning. and then, every 2 weeks, I think, Avastin IV. Not sure, but I
think its every 2 weeks that he has to spend 8 hours there (but with a 2
hour break for lunch) to check blood levels of the drug. That will
mean a 10 hour day since it is at least an hour to and an hour
back during rush hour. He might get really tired of such long days.

Of course, before he can even start the trial, he will have to have
scans done. They have to see what is there right now so that they
can see how effective the trial is. For some reason they can't do the
PET scan and the CT scan at the same facility. Since the PET will be
charged to research, it must be done at one place and since my husband
works at a hospital, the CT must be done at an his hospital. That's kind of
hard, since it really could be done at one place at the same time.
He must drink 2 bottles of the chalky contrast liquid for the PET scan
---don't understand that--always for the PET scan he has just gotten
the radioactive glucose IV, but not chalky stuff to drink.
The people doing the CT say that he must drink 2 bottles of their own
chalky contrast liquid. He didn't think that he could drink that much(4 bottles)
chalky liquid for both scans in one day, so the PET will be done at 9:00
this Friday and the CT will be done 3/17 the day he starts taking the
PTK tablets. It is really kind of scary to me for him to be getting scans
again. It has been 3 months since the last ones and now with the lumps
we see--what is going on the inside--it's like I want to know, but I'm
afraid to find out. Please--please pray that there are no more tumors found.

The research oncologist also spoke about the drug Yondelis and that,
for my son, he might be able to get it for "compassionate use." It
seems that he would love to have a patient on it, but I haven't looked
up anything about it. He looked closely and actually read the
information that I mentioned on here about the monoclonal antibody 8H9
and said he would check into it and seemed very interested. He says he
knows people at Sloan-Kettering. If nothing else, the fact that he
listened to me -- meant alot.

By the way, they did blood counts and my son's hematocrit is 44.7 -- two
weeks ago it was 42, his platelets are 212,000 (they were 207,000) and his WBC is 3.8 K/uL(it was 3.2). All were really good. I know it isn't any thing the same as actually having a bone marrow biopsy done--but at least the counts are good and aren't dropping.

Please pray that this treatment will work for my precious child. We are thankful that he is willing to try this. With him refusing chemotherapy because of the side effects, there just aren't many options left.

3/13/05
The PET scan was done on Friday. We have not heard the results yet. Waiting is so hard. If the news is bad--I wish we just didn't have to know. I just try to not think about it and then when I do, all I can do is pray to God that the cancer has not spread any further. Thank you for praying.

3/16/05
Thank you all for praying. It means so much to us. We still have heard nothing about the results of last week's PET scan. It was done last Friday. I know they must have results. Maybe they are waiting until tomorrow's appointment to tell us. Even my son has been asking if we have heard anything yet. At times like this--my imagination can just run wild. After all, we do know that there are cancerous lumps that we can see on his body. I won't even mention what I've thought about his cancer spreading. He seems fine--just had more headaches. Just trying to stay calm and hope that the news we receive tomorrow won't be bad.

Tomorrow he will have a CT scan with contrast(more chalk to drink)of his chest and abdomen and an MRI of his head. Two nights ago he asked for something for his headache. It is the first time that he asked for something and said that he is tired of having a headache, that he has had it constantly for a week. But the next day he said that the headache really just comes and goes and he hasn't needed anything else for pain. Certainly, the first thing we think of is spread of cancer to his head. Please pray that we don't receive devastating news tomorrow. I hope and pray that the cancer hasn't spread further. He starts the first trial drug tomorrow. Pray for good response and no bad side effects. Thank you for caring. Please be merciful to us, Lord, and spare our oldest son.

3/18/05
I'm too tired to post a complete message, but thought I would let you all know that the scans have been done and results are back. It took forever today, plus I have caught a cold so I am worn out. They did not see any tumors in his head or in his feet. Being one of the most aggressive childhood cancers---untreated it will spread. Now my son has many small lymph nodes in the abdomenal area that are cancerous and the cancer is growing into the bone of his left iliac crest. He started the new oral investigational drug today--he threw up when we got home. Please pray that this new drug would work well with no more nausea/vomiting. If it doesn't work there are few or possibly no more options for him. Thank you for thinking of us and praying for us--especially praying for my dear son.

3/18/05
Hi Everyone,
Thanks for stopping by to check on my son and for your prayers for him. Yesterday was a long day. He had to drink the chalky contrast at 7:50. Then we left our house at 8:00 for the 9:00 CT scan. He had that done and then we had to go to a different facility for the MRI at 11:00 and then on to the doctor's office where we waited more than an hour. We didn't get home til 3:00PM.

The scans show that the cancer is growing and spreading in the lymph nodes of the retroperitoneal area in his abdomen. There are many small tumors in that area growing together so it was hard to measure size. The largest single area is about the size of a postage stamp. At this point it has not spread to any organs. It is also spreading toward the bone of his illiac crest. He has not complained of pain in those areas. The MRI of his head was normal so the scans showed no sign of cancer there (don't know why he has been having more headaches)and his blood counts once again were completely normal with the Hematocrit-46, White Blood Cells 4.8 and the platelets 204,000. It was a relief to us that the MRI was normal and that the blood counts were still good. Certainly, we expected tumor growth even though we were hoping it wouldn't, but it was still difficult hearing that the cancer is spreading.

He took his first dose of the investigational (antiangiogenic) drug after we ate in the cafeteria at the hospital and then we left to come home. It made him nauseous and he threw up when we got to our house. He took medicine for the nausea and this just knocked him out. He slept until about 9:00 PM and then got up for 3 hours and went back to sleep. He must take 3 tablets each morning. They gave us enough for 1 week. In 7 days he has to go back to the clinic to get more medicine. Then in 14 days he will have to stay at the clinic for 8 hours. On this 8 hour day is when he will get the IV of Avastin--also an antiangiogenic.

Please pray that my dear son can tolerate this medicine and that it works to stop & shrink tumor growth. Pray that God would heal him. Our God is an awesome God. He can heal with or without medicine. He is still in control in the bad times and in good times. We praise Him for each new day. He thank Him for blessing us with our sweet boy.

In Christ,

Prayingmom

Prayingmom
09-02-2005, 04:55 AM
3/28/05 (Easter)
Hi Everyone,

Hope that you all had a wonderful Easter. It was a rainy day in here. We so wish that our oldest could have gone to church with us, but he stayed home resting. He seems to feel fine. We are just so very concerned about what the latest scans show. Thank you all for continuing to pray for him--for stopping by to check on us. It will be a long day for him Wednesday especially and Thursday. Pray that the PET scan on Thursday shows improvement.

About his scans(these were the ones done before treatment started about 2 weeks ago)- the nurse said that they show cancer in lymph nodes in the retroperitoneal area. For several days I didn't look at the reports that she had printed out for me. As I look at these reports they worry me a lot. A doctor still hasn't gone over the scans with us to tell us what they really mean and we actually have the CD of the scans with us here at home. One of my son's doctors told us last month that these tumors we can see will not kill him. It will be when the tumors invade vital organs. It worries me that the scans show lymph nodes ENCASING the aorta and beginning to invade a bone. My son will see the doctor this Wednesday, spend 8 hours in the clinic that day for the investigational PTK drug blood draws every hour and then return on Thursday for a blood draw 24 hours after PTK, a repeat PET scan with contrast and then IV administration of Avastin over 2 hours as part of the drug study. I haven't noticed the tumors getting any smaller since those first days (we really did notice a decrease in size and softening of the tumor at first) and you know how it is-now I'm almost wondering if we just imagined the tumors shrinking. They really did seem to be less protruding after the first 5 days of the new drug. The research doctor said he would love to have a patient on Yondalis (another promising investigational drug not even approved for testing in the USA) and spoke of trying to get it for my son for compassionate use. How I pray that these drugs are doing something to stop the tumors.

This is what the first PET scan says: There is intense FDG activity present within new retroperitoneal adenopathy (lymph nodes-I think) which ENCASES THE AORTA and includes periaortic and aortocaval nodes and extends to the level of the aortic bifurcation. In addition, there is a small focus of FDG activity within a left common femoral node. Definite new osseous metastasis indentified within the left posterior iliac crest with no obvious destructive osseous lesion seen on the concurrent transmission CT. Intense focal FDG activity within a small axillary node and a small soft tissue nodule seen along the left lateral chest wall.

IMPRESSION:
1.Marked hypermetabolic activity with inferiorly bulky adenopathy
present within the retroperitoneum as well as a small focus within the left common femoral region.
2.New osseous metastasis to the left posterior iliac crest.
3.Subtle activity within a left lateral chest wall soft tissue
nodule with definite small nodal metastasis to the right axilla.

The CT scan of the chest says:
1.Single enlarged right axillary lymph node measuring 12 X 19 mm.
2.Lungs clear. Mediastinal structures normal in size, position,
and configuration. No mediastinal lymphadenopathy. Chest wall otherwise unremarkable. Bones normal as visualized.

The CT scan of the abdomen and pelvis says:
1.Multiple enlarged, confluent periaortic lymph nodes. Confluence
makes measurement difficult. Largest discrete collection measured as
follows: Aortocaval lymphadenopathy measuring 23 X 32 mm
2.All other abdominal and pelvic organs and structures are normal
in size, position, configuration and appearance as visualized.

The MRI Brain w/wo contrast:
Normal MRI of the brain-no areas of abnormal signal intensity or enhancing lesions.

I know these scan results won’t mean much to most of you except those in the medical field, but I did want you to know that the kind of spread of tumor we are seeing is very, very serious and could threaten his life. The aorta is the major blood vessel supplying blood to the abdomen and legs. We just don’t know ourselves what the scans mean, but the research doctor may clarify things for us. Please pray concerning the PET scan—that the new drug is having some effect. Sorry this is so long.

Thank you all for caring so much. You all are just wonderful. No matter how things turn out--as I keep on praying for mercy and healing from God--I will be forever grateful to everyone who has cared enough to lift my dear son up in prayer. May God richly bless you.

In Christ,
Prayingmom

4/1/05
Hi Everyone,

My son had a PET scan yesterday, 20 days after the last one, and the results have made me very sad as it shows progressive disease. We haven’t seen the doctor since before treatment with PTK/Avastin – anti-angiogenesis began. My son only saw a nurse-practitioner today and at first all she would tell him was that there was a “slight increase in size of the retroperitoneal nodes,” but when I asked for a copy of the PET scan results then she looked more closely before handing it to us and the scan is showing progression. She kept telling him not to get discouraged, that she has seen the Avastin do remarkable things. I feel that we are seeing the end of his life—that time is very short. He has been planning a trip to the beach with some of his friends—just them—no parents—at the end of May when they all get out of school—2 months from now. From what the scan (below) says, I’m afraid that he won’t be able to go on such a trip. My heart aches. I love him so much. The hurt is beyond words. My sweet, sweet boy……….



Intense uptake is present within a right axillary node, with moderate to intense activity within two small left chest wall nodules. These have significantly increased since 3/11/05. There is extensive uptake within metabolic fat within the neck, upper chest, and right axilla. There is moderate to intense uptake within upper abdominal retroperitoneal nodes, which has slightly increased since the prior examination. There is significant increasing activity within the large posterior left iliac bone metastasis. Several small new areas of moderate to intense uptake are now noted within the left acetabulum, and within multiple areas in the thoracic spine. A new area of moderate focal uptake in the left upper extremity, probably corresponds to a subcutaneous metastatic deposit. In the lower extremities, there is a small new focus of moderate uptake within the distal metastasis of the right femur.



IMPRESSION;

Progressive metastatic disease as indicated above.


This has been a hard day. A long day for him and for me, and then such news at the end. Dear Heavenly Father, please be near and comfort us at this time. Lord, we know that you can heal. In your mercy please touch and heal my son. Amen.

Praying for a cure for all cancer--especially in children.

Prayingmom
09-02-2005, 05:02 AM
4/11/05
Hi Everyone,
Thank you once again for stopping and for the encouraging messages and your many prayers. I check by here almost every day--sometimes several times a day. It means so much to know that you care. I really wish that I could thank each one of you personally.

Sorry it has been so long since I posted anything here. I wish I could say that nothing has been happening, but actually my son's back is hurting more and sometimes he has to take medicine for the pain. To me, his face seems more tired all day long as though he has lost sleep. He has always been so tough, refusing pain medicine even when he had broken bones and during radiation, so I know that it must really be hurting. He says it hurts most in the morning and sometimes it keeps him from getting to sleep. The latest scans showed progression of the cancer. These were done about 1 ½ weeks ago. Today at 11:15 Central Daylight savings time my son will see the research oncologist and I guess he will discuss scan results. Right now my son seems more hopeful than he ever has, even wanting me to enroll him in college next fall at MTSU (Middle Tennessee State University) and saving his money for college. Pray that God would work a miracle either through a medicine, a person, or just God himself and that my son would be healed here on earth and that God would receive all the glory.

Thursday will be a very long day for him if the research oncologist decides to continue treatment. It is the last day that he has to stay for 8 hours for blood draws and all. Then on Friday he has to come in for the Avastin injection and after that he is leaving for Birmingham on his own to spend the weekend with friends. Doing something feels so much better than giving up--please pray that this meeting today with the research oncologist won't be the end of our hope---even if it means a different clinical trial.

In Christ,

Prayingmom

4/13/05
I am sorry that I have not posted here lately to let you know how the appointment went on Monday. My son had blood drawn and we saw the research doctor. His counts had dropped slightly-Hematocrit 40, WBC 4.0, Platelets 196,000, but were still normal. His sternum has started hurting some if he coughs. His back is hurting more each day so that he takes pain medicine for it and this is the same tough boy who refused pain medicine for radiation burns last summer. He must be in a lot of pain. The research doctor says that it is too soon to tell if the drugs on the clinical trial are working and even though he admitted that there is spread of cancer, he said that it is hard to tell how much with just a PET scan. He wants my son to continue on the clinical trial. The first dose of Avastin was given on the same day after the PET scan was done. I think that it is very obvious that these drugs are not working as his pain increases each day. This is so different than at the children's hospital-the minute that there is progression or relapse the chemo is changed whether you like it or not.

This is terrifying, but what options do we have-my son doesn't want to go on chemo anymore. It seems like doing something, even though it seems ineffective, gives him hope. Lately he says things like, "If by some miracle I survive this cancer..." and "Now, that I'm going to college in the fall....." (He is wanting us to get him enrolled) Yesterday, he asked me how much a small house would cost-and explained that he was just wondering about it for someday. I DON'T EVER say anything discouraging, although inside I'm crying and thinking, "But honey, you'll probably be gone before summer begins ...or ends" and wishing and praying that his future could include all the things he is dreaming of and later when I'm alone I cry out to God for mercy and healing. My son is still going to Birmingham to visit his girlfriend, Katie, this weekend. He is saving his strongest pain medicine to use there if he needs it. He still has plans for the beach trip at the end of May.

He told me something yesterday that seemed so sad. There was a time when he was younger-15, 16, 17....when he would say -"I hate my life" We talked about it yesterday in the car. He said that he is happier now that he was back then (when he was healthy). I asked him why. He said, "because of Katie." How I wish that he and Katie could have met long ago.

Thank you so much for thinking of us.

Best wishes to all.
In Christ,
Prayingmom

Prayingmom
09-02-2005, 05:07 AM
4/13/05
We stayed closer to home for his treatment--and now he does not want more chemo. Most everything that is left in the chemotherapy line would have dreadful side-effects. We are trying a lot of anti-angiogenesis drugs in addition to the clinical trial. Things that are OTC that have been recommended by a husband in Florida whose wife was given 5 months to live with an ovarian sarcoma--after 3 months on these OTC drugs his wife had only scar tissue and now 9 years later she is alive and healthy -- cancer-free and she never received chemotherapy. I wish that we had started all these OTC drugs months ago. My son's cancer is so aggressive. I don't know if anything can stop it now.

Thank you for praying.

4/18/05
Thank you from the bottom of my heart for your continual prayers for my son. Thank you for caring, for checking to see how he's doing and for the encouraging messages.

He returned safely this afternoon from his visit to Birmingham. He said that he had a good week-end. We were so glad that he was able to make the trip and are also thankful that he made it home.

His pain has increased alot. His next scans are scheduled for May 9. Despite the doctor saying that it is too early to tell if the clinical trial drugs are going to work, with the increasing pain it seems to us as though the cancer is spreading rapidly and unhindered and it seems as if the doctors don't care about anything except keeping patients on the clinical trial regardless of results. But what other choices do we have? He just needs a miracle to beat this cancer. No chemotherapy will do it -- only God can heal him.

When he reached Birmingham he called and left a message on my cell phone. He said, "Hi, Mom! Just calling to let you know that I arrived safely. Bye." Without thinking I deleted the message. It would have been neat to have saved it forever. I have no recordings of his voice since he's grown up. It would be neat to have that message to play and replay if God takes him on to heaven.

His brother, Justin, left his cell phone in his shoe under the trampoline and our dogs got it and chewed up the antenna and broke the camera on it and today Justin backed his dad's car into a friend's truck. It didn't hurt the truck but left a huge dent in David's car. Justin is just sick about it. He has had a very hard week. I told my older son, "Just see what happens when you are gone........"

Please continue to pray that God would work a miracle so that our dear son is completely healed here on earth. Pray also for pain relief for him. Also, I'm so sorry that I don't sound as hopeful as Chris's mom--I have done so much research on this type of cancer and truly a child with stage 4 rhabdomyosarcoma who survives is a MIRACLE and there are a few that have survived. Honestly, though treatment and cure for some types of childhood cancer (namely, leukemia) have improved, but in the last 30 years there has been no improvement in survival for (Stage 4) metastatic (spread) rhabdomyosarcoma. Research for childhood cancer is underfunded and very little goes to childhood sarcoma research because it is so rare. Even when fundraising is done, the majority goes to the more common cancers: breast, lung, bladder, and prostate--all adult cancers. And yet there is still research going on--and even if it is not in time for my beloved child--I hope and pray for the fine research doctors who devote their lives to finding better treatment and a cure. I pray for major breakthroughs this year.

Thank you so much for lifting my son and our family up in prayer. It means so much to us to know that you are praying.
In Christ,
Prayingmom

Prayingmom
09-02-2005, 05:18 AM
4/21/05
Thank you so much for stopping by and for your encouragement and your many prayers for my dear son. We are just trying to get by day by day. None of us ever really know what tomorrow will bring, you know. We just keep praying. His pain has seemed to increase, but he has never been one to complain. He never wanted to take strong pain medicine--never in his life. It was a point of pride for him to prove how tough he is, so that even with broken bones from accidents he didn't want pain medicine. Now he is on a 24-hour long acting morphine and is allowed a faster acting medicine for breakthrough pain. I had hoped it wouldn't come to this--but I don't want him to suffer, so I'm glad that the pain medicine is available and that it helps.

He went to the clinic today to have blood drawn for blood counts and the investigational drug study. We asked if he could have scans done earlier than the end of the study which will be May 9, just to see what is causing the pain he feels in the area of his shoulder blade. "No" was the answer. In response to the question I asked about more pain meaning that the tumor is growing, the nurse just said, "Not necessarily." His blood counts were still pretty normal. The hematocrit has fallen a little more so that it is down to 39.6, (It was up to 46) but is still normal. His cancer first spread to his bone marrow and is probably growing there now, but you can only tell if a bone marrow biopsy is done. I have little confidence in what the nurses and even the doctor tell us anymore and feel that the investigational drugs are having no effect on stopping the cancer. It seems like their main concern is for my son to finish their clinical trial no matter what and it will be 3 more weeks--May 9 before it is finished. My son says that he feels that something is pressing between his ribcage and shoulder blade. It seems foolish to think that more pain is not caused by growing tumor. My son's name is Jason David -- it means beloved healer--a name his father felt led to give him among several he had chosen--on the day he was born. Little did we know when he was given that name that our son would need the touch of Our Beloved Healer--Our Heavenly Father--that our son would need a miracle just to live to the age of 20. Even if you didn't know his name, God knows who you are praying for. --Thank you so much for asking others to pray for him. Our lives are in God's hands.

Thanks for the advice on getting him on tape. I don't even know how to operate the camera. I really need to work on that. My husband and my middle son know how to operate the camera, but it seems that they don't see any urgency in trying to get my son on tape. Part of it is that he hates it so much that it is annoying to him and we hate to annoy him.

4/27/05
Many people have suggested all kinds of complementary/alternative treatments. It is hard to sort through information and decide on alternatives. We have had so many suggestions. People have suggested Noni Juice, Oxygen therapy, high dose Vitamin C, more antiangiogenesis OTC drugs, the Halleujah Diet, some clinic in Texas, something called Graviola (an adult oncologist mentioned that one) and so many other things I can't even remember them all. I just wish that I knew which ones would actally work. We are doing some extra things, but don't know if any of it will make any difference. My dear son would just be happy to have enough time to go on the beach trip he and his friends are planning for late May. He has always loved soft drinks and I have kept them available for him and his friends. Some websites say that glucose feeds cancer and suggest that sweets (sodas and candy) be eliminated from a cancer patients diet. In the last week my son has stopped drinking sodas and eating candy. He misses them and I hate for him not to have something he wants when it is unknown if it will help at all, but he said today, "I doubt if anything can stop the cancer, but I will be happy just to have more time." He so wants to go on the beach trip in May with his friends.

All of my worries before my son's cancer diagnosis seem now to be so trivial. We were so blessed to have 4 healthy children. We all take so much for granted and yet it can all change in a moment either from illness or accident. Any loss is hard. I don't feel that I am so strong. I cry and whine way too much and even now think so much about what life will be like without my son here. My son--he is strong. How does he go on each day knowing that this awful thing -- this awful cancer -- is growing in his young body and that all the doctors have given up hope? How can he say that he is happier now than he was when he was healthy just because he has a girlfriend?

I was just reading today -- on some personal websites of cancer patients and came across one where the little girl (Molly) whose webpage I was reading was diagnosed with cancer--pre-B Acute Lymphoblastic Leukemia (ALL), in November 2003 when she was 2 1/2 and is still undergoing treatment. It has been hard for this family, but they were making it. Previous to their daughter's birth and just after their son's birth about 9 years ago, the mother was diagnosed with thyroid cancer and had 2 surgeries and was treated with radioactive iodine, but 4 1/2 years later they were blessed with their little girl (Molly). After all they've been through on March 29, 2005 (4 weeks ago), the father fell off the subway platform and was struck by a train and died. April 29 would have been his birthday and the little girl's birthday is April 30. How can so much happen to one family? I don't even know them, but I pray for them as they try to pick up the pieces and go on. The mother shared this poem:

“The agony is great and yet I will stand it."
(an internet search will give the rest of the poem)

I know that there is always someone who is worse off. I was reading the website I mentioned above and thinking that and hoping that something else doesn't happen to our family. I feel so vulnerable now. Cancer -- that was something that happened to other people -- not to my family -- not to my 19 year old son and now I am concerned for what else may happen to those I love. A car wreck--a mole that changes--my little girl saying things about growing pains (that's how this started with my son who has cancer).

I also think of the tsunami victims. I think of starving people in Africa and so many with the AIDS virus there. There was a train crash in Japan yesterday -- so many died-- so many were hurt. The headlines said that 2 little children, a brother, age 3 and a sister, age 2 were found drowned in a pond yesterday--this family lost both their children. So much suffering in the world----

Probably this is all incoherent--I'm just rambling--but these things go through my mind, as all the while I pray for my son to be healed.

Thanks everyone for stopping by. We simply do not understand why we must walk this path, but it is where we are and we have no choice.
........................................ ........................................ ..................................
We were very thankful that my oldest son went to church on Sunday. It has been many months since he had gone and it was so good to see him standing there in the hall talking to one of his Sunday school teachers. From the way he was standing it seemed that his back must have been very stiff and he was probably hurting--but he hasn't complained in days about it. We just make sure that he always takes the 24-hour time release morphine on schedule and that his short-acting oxycodone tablets for breakthrough pain are always available. Our pastor is preaching a series of sermons on "Fear Factor" -- not the stuff you see on TV -- but things we all face everyday that we are really afraid of. Sunday's sermon was about the fear of death. My son has said that he is not afraid to die -- he says that he is ready to go -- he asked Jesus Christ into his heart when he was just 4 years old -- before that he had been so worried about going to hell and this was not something we even talked with him about to scare him or anything. He prayed a prayer with me and never mentioned that fear again. He walked down the aisle at church and was baptized and I really believe that he truly understood. The thing that I do fear for my son (and I don't know how he feels) is the actual process and pain of dying. I don't want him to suffer-- to be in excruiciating pain for days on end. Of course, what I really want is for him to be healed and I know that nothing is impossible with God--nothing is too hard for Him.

Prayingmom
09-02-2005, 05:30 AM
4/30/05
Hi everyone,

Once again, I am sorry that I haven't written in a while to let you know how things are going. I do check back by every day to read the messages you've written and I really appreciate the good advice about the SIBS camp and all, though I don't know if I could bear to send them to camp--my boys have gone on church trips, but my little girl hasn't. I'll check into it.

I just hate what I have to write and sorry this entry is so long. I wish that I could write good news of shrinking tumors, but that is not the case. Jason went to the clinic on Thursday as part of the drug study to have blood drawn and to get another 7 days of the trial drug. We have stopped asking him so much how he feels during the week. He gets so tired of us asking all the time. I thought we could wait and just let the nurse practioner ask him. He told her that the pain in his back under his shoulder blade and in his sternum is continuing to increase. There are now some new lumps at his shoulder blade that can be felt and a new very small lump on his chest. He says he will be happy if it just slows the cancer down.

His blood counts remain about normal with the hematocrit droping a fraction of a point and platelets and white blood cells staying the same, but I noticed that one of the lab tests that is supposed to be in the 300-600 range has been steadily increasing week by week from normal to 2,200. I asked the nurse what it meant. She said it was a liver function test and then mistakenly (I hope)said, "But he does have some cancer in his liver" I said, "No, there has never been a scan showing liver involvement"--the scan mentioned bulky retroperitoneal adenopathy but also said no abdomenal organ involvement. I came home and researched it and one of the dose-limiting toxicities of the PTK was elevation of liver enzymes. I don't know how high they would allow this liver enzyme to rise before they would stop the drug--but he does have only 2 weeks left on the trial.

I heard the nurses talking, but it may not have been about my son--although I think it was because we were the only ones left in the room. One nurse said, "I can't write progressive disease, so what can I write?" I didn't hear the answer, but I thought, "If it's progressive disease why not just write that?" While my son was putting his shoes on I slipped around the corner and asked the nurse practioner, "With new lumps and more pain, it seems to me that he is having progressive disease." Then she asked sweetly, "Oh, does it seem like progressive disease." I said, "Yes, could he possibly have scans done early." (You see, progressive disease is a reason to come off the study.) So after we left they called the doctor and a PET scan is scheduled for this Monday at 2:00 in the afternoon and a visit with the doctor on Tuesday at 11:00. Originally, they would have been on May 9. They called to tell me as we were driving home, so I told my son that he was having scans done early and why. He had thought that the drugs were working and he was getting better--that this was giving him time and perhaps they are. This has made me very sad to cause him to lose hope again.

A sad thing is that my son has had to take his anti-nausea medicines and so he hasn't always been fully awake or aware when the nurse practioner talks to him about scans and even when the doctor talked to him it seems like they've all downplayed any progression of disease and my son had the idea that things were actually improving or at least not getting worse. He would stay on these drugs forever if they would only slow down the cancer since they have so few side effects (we thought-until I noticed elevation in liver enzymes). He has been making plans to go to college in the fall. None of us really understand the significance of any of these scans. No one has shown us the scans or explained what they mean or how extensive the bulky adenopathy is or the spread to iliac crest or what is going on in the thoraic spine. We don't really even know where these things are exactly or what to expect. My son feels that they've been less than honest with him.

He says that he is not ready to quit fighting. He says that he is willing to do more chemo. He must have forgotten how he felt in last year when he quit and I can hardly bear the thought of him suffering through chemo again with hair loss and all the nausea and vomiting. He is interested in what the next step will be. If these drugs truly are not working and may even be damaging his liver, probably he will have to come off of them.

On a much brighter note, his girlfriend, Katie, is home this week-end and even surprised him by coming in a day earlier than she had told him. She got here on Thursday. She brightens and brings joy to his life and really makes him want to live. "I'll do chemo, if Katie is here," he says. I only wish that he hadn't stopped chemo back in December 3 rounds early, but who knows what difference that would have made. At least, he had 2 really good months and he met Katie during that time.

Please pray concerning these scans and doctor appointment. Pray that despite what we see that the cancer hasn't spread internally. Pray that God would give the doctor wisdom in deciding what to do next. Please pray that the cancer can be stopped. Continue to pray that he can go on the beach trip at the end of May. You all know that God is bigger than any problem we have. We just need to keep our eyes on Him. It is just so hard for me not to think about losing my son.

Dear Lord,
Please put your healing hand on Jason. Remove this cancer from his body and restore his health. Humanly, his being healed is impossible--but with You, Lord--nothing is impossible. I know that You can heal Him. I turn to You. I trust in You. Thank You that You are in complete control of his life. Please heal him and may you be glorified in this.

Thank you, dear friends, for joining us in prayer for our dear son.

Prayingmom
09-02-2005, 05:34 AM
5/4/05
Hi Everyone,
Thank you so much for stopping by to check on our sweet boy and for your prayers for him and for our family. Thank you for the messages and prayers you have left here. Honestly, I come back every single day to check for messages and to read the ones you have left.

Jason saw the research doctor yesterday. The results of the scans were really bad. The cancer has spread a lot. The investigational drugs seem to have made no difference, so he is off the drug study. The bulky retroperitoneal lymph nodes appear to have increased in volume. The place causing him pain--his left shoulder blade--the doctor believes it is a cancerous lymph node that is pressing on nerves. The worst part was the report of spread to the skeletal system. The report says: Dramatic increase in the number of skeletal metastases with lesions noted scattered throughout the cervical, thoraic, lumbar and sacral spines, as well as in the proximal left humerus, right scapular neck, left clavicle head, sternum, right scapula medial border, several ribs, multiple lesions of the iliac bones, ischial bones, bilaterally and right pubic bone at the symphysis. Metastases are also noted in the proximal right femur. In the lower extremities there is new abnormal focus of high uptake in the right proximal femur, in the distal right femoral metphysis and five new foci of abnormal uptake in the left femur proximal middle thirds. What all this means is that not only is the cancer spreading through the lymph system, now it is spread rapidly through his bones--not just bone marrow--but in the bones. I thought I heard the doctor say that spread to his bones could cause him a lot of pain.

There has been no spread to abdomenal organs or lungs and his blood counts are still great: Hematocrit 40.9 (increased since last week) White Blood Cells 3.2 (decreased slightly) and Platelets 189,000

My dear son is willing to have more chemotherapy and this is not something we are pushing him to do. What he wants more time. He wants to be able to go on the beach trip with his friends. He loves Katie and said, "If I die..." and then changed it to "When I die...it's going to hurt Katie a lot." So he is willing to do more chemo for Katie. It seems like his cancer has spread so much and is now causing him pain. His shoulder blade hurts especially, but if it is all up and down his spine, well it could get a lot worse. He is taking a 24 hour time release morphine tablet and for breakthrough pain he takes a stronger fast acting tablet. I have very mixed feelings about more chemo. The cancer has spread so much, would chemo now really offer any benefit? Would it really give him any more "good" times. Chemo is really really hard and causes a lot of suffering on its own. It is stupid, but I had hoped that he would have hair when he is buried.

He mentioned yesterday that he wishes he could be like he used to be(don't we all wish that for him?) when he was able to tolerate pain--when he cared about things, when he had the energy to do things. He says that he feels apathetic--that he just doesn't care and that it takes more and more effort to do anything other than just sit at the computer, or lie in bed. He says that it takes effort for him to just be able to concentrate.

It broke my heart to hear him talk yesterday about his dreams. He said, "Mom, how much is the down payment on a house?" Not going into details and knowing how much he already has in the bank, I just said, "Oh, about $10,000." He said, "I really need to start saving for a down payment." A few weeks ago he had asked me how much a small house would cost. He went further this time. He said, "If I survive this, as soon as I finish college, I want to marry Katie." I just said, "Honey, she's a real sweet girl." A minute later, he said, "Mom, I really need to decide on a major for college. Whatever I major in, I want to minor in agriculture, so that if the oil crisis comes, I'll be able to grow food for us." He is convinced from things he has read on the internet that the world will run out of oil within the next few years. So we talked about that for awhile. He talked about how much it would cost to build a cabin up on my parent's farm. We were at Hardee's getting food. He saw a really fancy sports car at the gas station next to us and said something about it and that it cost at least $125,000 and I said that we would never have a car like that, that only a rich person could afford such a car. Then I asked him if he had ever been in such a fancy car and he said that he didn't even know anyone who owned a car like that. Then quietly he said (really more to himself than to me), "I've never even been on a four-wheeler or a jet ski and I probably won't ever get to..........." So in the space of 5 or 10 minutes, I hear about his hopes and dreams of going to college, buying a house, marrying Katie and his despair that he won't even live long enough to drive a four-wheeler or a jet ski.

Dear Lord,
Please Lord, come now and show yourself mighty in Jason's life. Please heal my son. Remove this cancer from his body, remove the pain, and restore his health. Humanly, his being healed is impossible--but with You, Lord--nothing is impossible. I know that You can heal him. Please have mercy on us. Please heal my dear son. I turn to You. I trust in You. Thank You that You are in complete control of Jason's life. Please heal him and may you be glorified.

Thank you for your prayers.

Prayingmom
09-02-2005, 05:37 AM
5/7/05
Thanks so much for your message encouraging us to make the things happen that Jason mentioned. Someone is trying to plan rides on four-wheelers and jet skis for him. I asked him if he wanted to do that. He said, sadly, "I didn't get to do those things when I was healthy and now I'm afraid that I'm just too weak.

Today (Friday) Jason went back to the Children's Hospital. Constipation was his big concern. He had not slept much or eaten in 4 days. He even tried to go without his pain medicines if it would help with the constipation, but he had to take them before he could go to sleep last night. The doctors just told us to give him lots of Miralax. We were giving double doses every 2 hours from 12 noon on. This afternoon he said that he just couldn't drink any more of it unless he had a bm. Finally he had some relief. We are reduced to a pitiful state to be so relieved over a bowel movement, but were so afraid that the constipation might be caused by an obstruction (tumor growth) and that his life could be over this week. The nurse from the adult oncology clinic, I guess in response to a question about this had told him to try a Fleet's Enema and if that didn't work then he should go to the emergency roon where they might do surgery, which is scary--what good would surgery do at this point. He kept asking, "What if it is a tumor?" and was very frustrated. His friends kept coming. One boy spent 3 days and 3 nights with us and Jason is too polite to say, "I really need some time alone," because if he had had some time alone he would have tried the enema. His dad's and this friend's making light of constipation were not funny at all to me, nor to Jason. He is seems very tired after this ordeal.

Jason told the doctors that he was willing now to do any chemo treatment, even the harshest one where he would have to have surgery to have a double port-I think the short name for the drugs used is (6 different drugs)VACIME. The nice lady doctor asked him why he would be willing to do that now and he said that he has a reason to live now. She said that he would have to go through staging again with bone marrow biopsy, and all the scans and she reminded him of how much he would be hospitalized and the problem of neutropenia with these drugs. Then she left the room and the other doctor came in. He, of course, was very blunt. He asked Jason why he would put himself through all that when it would not be a cure, saying that his cancer has spread too much and this treatment would cause him a lot more suffering.

What he suggested was oral etoposide 100mg for 21 days, off for 7, with counts every week and if we can get hospice started they can do the counts for us at home and help manage pain and other problems. We got the prescription. The hope is that the etoposide will just slow the cancer down. I'm very sad-time is slipping away and things aren't so good for Jason right now. I called hospice. They are coming out at Monday afternoon. It was a hard call to make. I have cried so much today. Also on Monday morning Jason will have radiation to his shoulder blade to try to stop this pain. At this point they just will give a couple days of high dose radiation, as they say there is no worry about the long term effects of high doses since there won't be a long term.

He had mentioned wishing that he could have ridden a four-wheeler and a jet ski. Now he says that he may be too weak for either of those, but one of his friend's moms is trying to arrange this for him as a surprise. He still wants to go on the beach trip. The deadline for reserving the house is this Monday. I hope that it all works out for the trip.

I'm very tired and falling asleep here at the computer. I'm still praying and hoping that God will heal Jason, but I have cried off and on through the day.

Prayingmom
09-02-2005, 05:41 AM
5/14/05
Just thought I would let you know how Jason is for today as we don't know what tomorrow holds at all and we keep praying that he will feel fine for the beach trip. It is only a week away. They are supposed to leave early next Sunday morning, and Katie will be home from college this Wednesday. She is going to the beach, too. He has told me that with whatever time he has he wants to spend as much time as he can with Katie. He wishes that he could marry her, but feels that would be an irresponsible thing to do until he has a job that would support them. He seems to have adjusted to the Etoposide the new chemotherapy. He started taking it last Saturday. At first he wanted to take it in the early morning just as he had taken the drugs on the clinical trial rather than at night as the doctor recommended. Doing that he ended up having bouts of nausea throughout the day and for 4 days lost every meal. Now he takes it at midnight, even though he might not go to bed that early. His friends are here much later than midnight and when Jason gets tired he just goes to sleep on the couch in the living room, leaving his friends talking, and playing video and computer games in his room. Some of them don't seem to notice when Jason leaves the room, but a few do notice: his brother Justin and friends Trevor and Josh. Jason seems sadder and quieter than ever---some of that may be just being more tired-or the effect of the Etoposide. Sometimes he just bows his head down and closes his eyes and I wonder what he is thinking or if he is praying. He asked me to be quiet once in the car this week because he said, "I am praying." He said that he believes God will heal him.

His constipation is under control now. The Miralax - a prescription laxative - a powder that is mixed with water and tastes like carrot juice he says plus 2 senna tablets has really helped.

Jason had a CT scan of his chest that included the area of his most intense pain-which is in his left shoulder blade. We thought that a large tumor must be there pressing on nerves causing the constant burning-stinging pain under his left arm. We were surprised when the radiation oncologist said that there were no large tumors and that no destruction of bone has occurred anywhere that he can see in this scan-not even in his spine where the PET scan showed activity. He said that the PET scan used at the clinical trial facility is outdated equipment and my husband said that PET scans are only 5-6 years old and the facilities that got them early now have outdated equipment. At the tumor boards this week they discussed Jason and the oncologists say that the pain is most likely caused by invasion of the bone marrow of the scapula by cancer cells. I wonder if PET scans can show rhabdomyosarcoma in the bone marrow---they didn't show it there on original diagnosis and there was 100% replacement of all blood making elements at that time. Dr. Teng said that he could still do radiation for pain relief and Jason may have that done after the beach trip. It must have been a big relief to Jason to learn that there wasn't a large tumor there. His lungs were completely clear in this scan. The high liver enzymes we were seeing on the clinical trial actually are nonspecific and do not necessarily indicate liver damage, but can also indicate an inflammatory process going on. Jason is now taking a low dose of Decadron with or without his nausea medicines and most days he has said that his pain is less. His neck seems stiffer though and he can't turn his head as easily as he used to. One night David went to Jason's room and prayed and commanded this cancer--this rhabdomyosarcoma to leave Jason's body in the name of Jesus and by the power of his blood. God had brought to David's mind a story told by a Sunday school teacher when David was in college--where God impressed the teacher to do such a thing (not with a disease) with amazing results. In the true story, a neighbor of the Sunday school teacher played very loud music late at night and when the teacher asked him to turn it down it was as though the man didn't even hear him--it seemed like a demonic force was at work and God impressed him to command the man in the name of Jesus and in the power of Jesus blood to turn the stereo off. The man immediately turned the music off, but a few minutes later turned the music back on. The Sunday school teacher continued to pray and was impressed by God to command that the stereo stop working and IT DID. God can do amazing things. I pray constantly for healing and mercy for Jason.

The folks from hospice came twice this week. Once they came just to meet Jason and once to draw blood for the weekly counts. That saves us a trip to the clinic. It is nice that they can send the medicines straight to our house-even things that are hard for us to get like Kytril (most effective and least side effects for Jason) for nausea. Our state Tenn-Care will only pray for Zofran and David's insurance will only pay for 8 Kytril and 1 prescription for pain each month. At least we won't have that trouble with hospice and I think and hope that the nurse was correct when she said that our insurance will pay for hospice. Even now when things seem totally hopeless, it is hard to put hope away as long as Jason is alive. Now we just are hoping and praying for a miracle. Jason walks, talks, and occasionally laughs (but not as much as he used to). Last night we took him out to eat at Steamboat Bill's (Cajun seafood) where he and his dad got huge platters of fried oysters. Neither of them could eat them all so they had the remainder for lunch today. It is very unusual for Jason to eat left-overs, so that just shows how much he liked them. I saw him jumping in our den last night to make the blades of the ceiling fan spin. He was talking about how he used to be able to jump from the gym floor at church to touch the balcony when he was not sick. Last night when I thought he had gone on to sleep Jason got up after midnight and went out and lay on the trampoline with Josh and Trevor just talking and watching the stars. It seemed so good for him to be out of his room with his friends looking at the vastness of God's creation. I went on to sleep and slept pretty well. He told me his pain was less this morning. Tonight he has gone to a friend's house for a bonfire and a lot of his friends went down with him. He may even spend the night. I am so thankful for every day when he feels like doing fun things, when he is not nauseous, when I can hear him laugh, when his pain is less.

Thank you all for praying for Jason.

We continue to pray for healing even though things look so bad. I know God is able.

Prayingmom
09-02-2005, 05:43 AM
5/21/05
Thanks for all the kind words and prayers that you have left here for us. Thank you for caring. I do check by every day, sometimes several times a day, but I don't always leave a new message.

I don't know if I have posted any messages about Justin, our second son, but we have had some new concerns about him due to what was found on an X-ray after he had a skateboarding accident. This just adds to my stress and I am praying constantly that God would just protect our family.

On May 6th Jason's 17 year old brother, Justin, hurt his leg while skateboarding. His left leg below the knee bent out at a right angle and he had to pop it back into place. He wanted to see if it was broken and actually thought that it was, so I took him to the doctor the next day and his leg was X-rayed. The report said that it wasn't broken, but they saw a cyst on his femur. I had to take him back a week later and the radiologist's report said that it is probably a chondromyxoid fibroma. Knowing about Jason and for my peace of mind the doctor ordered an MRI of Justin's knee and the femur. I did an internet search. This is also a very rare condition.

On May 18th Justin had the MRI done of his knee and femur at 7:30AM. The radiologist who did the x-ray a few days ago said that it is a chondromyxoid fibroma. How we hope and pray that it is just that-- a rare benign bone tumor that may require surgery. Some of the other things that it could be include malignant bone tumors- chondrosarcoma and osteosarcoma. What a terrible feeling it was to sit there with that noisy MRI going, with a second son. It will be 24-48 hours before the doctor will get back to us with results. I'm still debating with myself about genetic testing for Li-Fraumeni Syndrome (a rare genetic disorder in the p53 gene that predisposes to early breast cancers-before age 45- and various other cancers including rhabdomyosarcoma) beginning with Jason. I often think that we should just finish filling out the papers and go ahead and make the appointment with the geneticist. The first appointment would just be discussion and then they would recommend whether or not to test, but the test is not cheap.

Several people in our families have had cancer. David's dad had lung cancer and a lung removed about 6 years ago--in his 60's. David's grandfather (mother's father) had pancreatic cancer spread to colon in his 60's. I have a 1st cousin on my mother's side who has relapsed metastatic breast cancer in her mid-30's, and a cousin also on that side who had Hodgkin's in her early 40's and 2 cousins (same side of family) who had children--one with neuroblastoma at age 1 and one with Ewing's sarcoma at age 18(both rare childhood cancers, but not in the Li-Fraumeni group of cancers) My mom's brothers in their 60's have had cancer- one had colon cancer and now has an colostomy and one had bladder cancer and was treated last year. My dad's sister also in her 60's has been fighting breast cancer for several years.

More significant than all these to me is that David's grandmother had breast cancer in her late 30's and David's mother began having precancerous tumors in her breasts at age 35 that led to masectomy at age 41. David's infant uncle (mother's side) died by age 2 back in the 1930's. The baby became jaundiced and declined over several months. Now David's mother will tell you, "I didn't have cancer." Of course she is correct, but the reason that she had surgery was because they expected cancer to develop. She is still living. As far as her infant brother who died, she says that she has talked to her Uncle Art and her Aunt Flo who remember that time and they both say that he died of a congenital liver disorder. In my mind, it could have been cancer. There just weren't tests back then to rule out cancer in a small child, especially for a poor family living in rural southwest Virginia. So many children died back then of infectious diseases. In our day and time, childhood death from disease seemed so uncommon until childhood cancer strikes and then we learn that cancer is the #1 disease cause of childhood death. With the early breast cancer of great-grandmother and his grandmother's precancerours tumors--I thought it might be Li-Fraumeni.

We went back at 1:45 PM on May 19 th to talk to the doctor about Justin's scan. According to what I have read about this condition - chondromyxoid fibroma - the bad things that it might be (malignant tumors) cannot be ruled out with scans (Although findings on conventional radiographs may suggest the diagnosis of CMF, definitive diagnosis requires an analysis of biopsy specimens.), so I don't know what the doctor will want to do. When we saw the doctor about Justin it was just to go over the radiologist's report. This young doctor who is a general practioner admitted that this is way out of her field of expertise. She suggested 2 things--which were also the radiologist's suggestions. Either we can wait 6 weeks and then do another MRI to see if there is any change in the tumor or they can refer us to one of the oncologists at Vanderbilt--an adult specialist (I think it was an orthopedic oncologist) to get his opinion. The MRI is already scheduled now no matter what we decide and they were making an appointment with the specialist for Justin, but we don't know the dates yet. Justin said, "Mom, you worry too much." David said, "No, Justin, she doesn't." Before Jason's cancer I probably would have thought that we could just wait 6 weeks and that it wouldn't matter, after all, my children had always been so healthy. In my mind now, every single day counts when it might be cancer and wishing later that you could have known or done tests sooner just won't help. Despite saying that I still regret that I didn’t have Jason's foot looked at in the fall of 2002 when he leaped off a high platform in the dark on a school trip. He thought he had broken his heel, and limped around for several weeks, but whenever I suggested going to a doctor he protested and said that it would be fine, always wanting to prove how tough he is. I'll never know if they might have found the tumor in his foot at a much earlier stage with X-rays and scans they might have done at that time.

I called Jason's oncologists to ask about this situation and they agreed that the only and best choice right now is not waiting, but to go ahead and see a pediatric orthopedic oncologist and there are 2 of these at the hospital. One of them is the doctor who recommended last April 2004 that 1/3 of Jason's foot be amputated to get rid of the primary tumor. We never went back to see him--we chose to have the tumor treated with radiation instead and as far as we know it has never come back in his foot. But it has come back in various other places including his bone marrow, where it was found at the beginning. I kind of hate the idea of going back to that doctor, because we didn't follow his advice and I'm glad that we didn't--what kind of life would that have been for Jason this year - with a partial amputation?

Thank you for praying concerning Justin's situation.
I will post about Jason next.

Prayingmom
09-02-2005, 05:46 AM
5/21/05
Thank you so much for checking on Jason and for your continued prayers. We feel so helpless, but we know that God is in control and that no disease, not even Jason's cancer is beyond God's power. We know that God can heal Jason and so we continue to pray that way. We are thankful for each and every day, especially the good days, that we have with Jason and his brothers and sister.

I would say that Jason has had a great week. Most of his friends were back home from college by last week-end and so Jason has had plenty of company. Then on Wednesday afternoon Katie got home. I just can't even tell you how much Jason looked forward to Wednesday and Katie's arrival. David asked Jason if he was going to the first showing of the new Star Wars movie. I didn't realize that it would start at Wednesday night at midnight. David ordered 5 tickets on Tuesday night and Jason and I went down to Opry Mills and picked them up. Then on Wednesday night Jason and Katie and 3 other friends went to see the movie and were out until after 3 AM.

Jason has been on the oral chemotherapy, etoposide, for 11 days now. He takes it at midnight with his nausea medicines and 24-hour pain medcine. By the time he wakes up the side-effects are pretty much over, except in the late afternoon he has to take another nausea medicine called Kytril before he eats. He SAYS that the pain is less (in his shoulder blade) and today he said that he is no longer taking the fast acting pain medicine. I hope that he is not just enduring the pain and trying to tough it out, but he doesn't look like he is suffering. He looks really good. He does tire easily.

His hospice nurse came today and drew blood, took his blood pressure, and gave us a copy of last week's blood counts. His white blood cells have increased from 3.2 to 4.0 (in normal range) and his platelets are 220,000 which is also in the normal range and I believe has also increased. His hematocrit is down to 33.8 so it has dropped 6 points, but not enough to need a transfusion. Actually, pretty good counts considering that he felt so bad last week and that he is on oral chemo. It will be at least Monday before I know what his blood counts were from today, but I hope that all will be well for the long anticipated beach trip. They are leaving for the beach at 5:00 AM EST on this Sunday morning and will be gone until Sat or Sun. Please pray that it will be all that Jason has hoped for. Pray for Jason and Katie.

I just posted a note about Justin's chondromyxoid fibroma--a rare benign bone tumor. We expect that he will have to go to a specialist- a pediatric othropedic oncologist in a few days just to make sure. Look at a previous post to see it.

Thank you so much for your prayers for Jason. I am convinced that it is because of answered prayer that Jason is having less pain and less nausea and is enjoying life at this point. We still continue to pray for complete healing here on earth from Jason, with tears throwing our helpless selves on God's mercy, knowing that we don't deserve any good thing from the Lord, yet He has blessed us so abundantly already. He cares for us. He loves us.

5/22/05
Hi everyone,
Jason left on the much anticipated beach trip at 5:00AM this morning. The drive is supposed to be 10 hours, so perhaps they are nearing their destination now. Katie went on the trip, too. The parents of one of his friends arranged the trip and were going, too. I really wish that I could see him walking on the beach again. It has always been one of his favorite places, but I know that I would probably spend too much time remembering and crying about happier times, when my 3 little blue eyed boys, happy and healthy, ran and played on the beach together. Jason's doctors give us no hope for a cure. Jason really wanted this to be a trip with his friends. The parents on the trip promised to videotape and take lots of pictures, which will be wonderful, as we have no videotape of him since he grew up and his voice changed.

Jason has had a great week, with all his best friends AND Katie home from college. Did I tell you that he went to see Star Wars on the night it opened? He sleeps more than he used to. His blood counts from a week ago Friday were good-platelets 220,000 and white blood cells were 4.0 both increased from the week before and his hematocrit was 33.8- a drop of 6 points. He has been on this low dose oral chemotherapy though. They do think his cancer must be back in his bone marrow, yet his counts are still okay.

Pray that they have a wonderful week at the beach. He took a ring with him -a 1/4 carat diamond solitaire. I don't know what it means, but he wants to give it to Katie while they are at the beach. Guys have to go out on such a limb and face such rejection from girls, don't they? Katie means so much to him and to me, even as strong as he has been in facing what life has thrown him; he seems so fragile and rejection by Katie would be devastating. She has added such joy to his life.

Thank you for your prayers.

Prayingmom
09-02-2005, 05:52 AM
5/23/05
They said Justin has chondromyxoid fibroma and it sounded so rare that I figured no one had heard of it here, just like Jason's cancer (rhabdomyosarcoma)-- I had never heard of it before. But the literature does say a biopsy is necessary to make sure and I don't want to take any chances. I talked to someone in the office of his primary care doctor and they hope to get him in to see a specialist next week. I think it is Dr. Holt, but it may be the same office as Dr. Schwartz. It is Dr. Holt--next Tuesday, May 30 at 9:00 AM.

David was born and raised in Kingsport. I was born in Harriman. My parents live in Unicoi County now near where they were born in North Carolina. Dad worked for TVA as an ironworker welder. He learned to weld in the ship yards in Baltimore, Maryland before World War II, and then he was in the navy during the war. He went ashore on the beaches of Normandy. While we were in Harriman dad worked on Melton Hill Dam, and Kingston Steam Plant. We moved all around east TN -- Oak Ridge, and around Chattanooga. After we married we lived in East TN for 17 years and then we moved when Jason was 10. I so wish that we could have been near family this year. It has been so hard not having family near and for Jason to not be able to travel to see his grandparents, when they would have loved to see him more. I miss the support of family that we had there.

5/23/05
We actually lived halfway between Clinton and Oliver Springs in a little place called Marlowe or Dossett (still close to Oak Ridge) and the two years we lived there I went to Marlowe Elementary & Norwood Junior High and some days we (my brother and I) walked home on the railroad tracks. It was kind of scary walking across the railroad bridge (trussel?) to get home. We just didn't want to wait for the bus. Norwood Junior High opened while we were there and I went there in the 7th and 8th grade. We have relatives who still live in Oak Ridge and in Knoxville. We lived in Kingston for awhile when I was really small.

Dr. Schwartz called the partial amputation of Jason foot a limb sparing procedure, and Jason was even willing to let him do it, but both of us were quite shocked last April when Dr. Schwartz recommended it. It would have done no good to cut 1/3 of his foot off just to say he was in complete remission when the cancer was already stage 4 at the beginning so in all probability cancer cells were already in other places, even with clear scans. I read a story where a very good doctor amputated a small child's leg trying to stop the cancer, but the cancer relapsed and the little child spent the last year of his life unhappily as an amputee. Many years later this doctor still regrets the amputation and the quality of life this little child had as a result. I did a lot of research on the internet at the time about distant metastasis and radiation vs. surgery and the results seemed about the same. I protested the surgery and when the tumor board met they did not think that surgery was the best thing.

My Aunt Madeline from Baltimore, MD is visiting my parents this week in East TN. She would have loved to have seen Jason. Seeing a great aunt is not so exciting to him. I know he is exactly where he wants to be this week and just hope that Katie reacts well to his presentation of the ring. I don't want his heart to be broken. All of my aunts and uncles are getting older--all in their late 60's & 70's, but I can see them whenever I go to east TN since they live nearby. Aunt Madeline lives so far away that I am making the trip up to East TN to see her this week while she is in. She only comes in once every year or two. I'll be going past the Oak Ridge exit on my way up today. I'll think of you as I drive by. Best wishes.

Prayingmom
09-02-2005, 05:57 AM
5/30/05
Hi Everyone,
Thanks so much for your prayers for us. It means so much to us that you care. I got back home from East Tennessee last night with Josh and Jenny. My Aunt Madelaine from Baltimore was trying to visit each relative individually while she was in and she only had Monday-Thursday and left for home on Friday. I told her little sister, my Aunt Madge, that I would get lots of Kentucky Fried Chicken and bring it over to her house. My dad, their brother, didn't really like shaving and cleaning up--it is hard for him since his stroke 4 years ago, but I loaded him and my mom up and we drove to Aunt Madge's (in NC about an hour away) on Thursday. There are only 3 out of 7 siblings left and they are all over 70. Madelaine has diabetes now, Madge has been fighting breast cancer for several years and my dad had a heart attack and stroke. Aunt Madge made a few calls and 22 of our relatives came (including the widows of 2 of dad's brothers) and we spent a few hours together. It was neat getting together. One of my cousins had film of my grandmother and grandfather that most of us had never seen. My grandma died in 1965 and grandpa died 10 years later. My dad cried. Aunt Madge had wished we could all get together on Sunday, but we didn't have Sunday together. Aunt Madelaine's son, Barry, who drove her down kept thanking me for suggesting the whole idea of a get-together, but everyone brought food. So many times at their ages it is only funerals that bring the family together, so he was glad that we could just get together.

We didn't talk to Jason this week, but Markell, the mom on the beach trip, called several times during the week. She said that Jason and all his friends had a great time either at the beach or at the pool. Markell said that Jason and Katie only had eyes for each other all week, but they had no time alone and the ring did not appear on Katie's finger. I don't know if Jason didn't present it to her, changed his mind for now, didn't have opportunity or what. Markell made sure that Jason got his oral chemo this week. Friday was the 21st day of the chemo, so he is supposed to have a 1 week break. I made an appointment for him to go and talk to his oncologist for this Friday at 11:30. He had been talking of more aggressive chemo, but it seemed as though he had no choice, that they didn't think he would receive much benefit, only more suffering. I guess I will have to cancel the appointment. When Jason got home late Saturday night and I told him about the appointment he said that he thinks he just needs to leave his life in God's hands now and if his life is to end soon at least he can enjoy the time he has left, since the oncologists have been so discouraging about aggressive chemo. He was very tired when he got home, but he stayed up late until 2:30AM. Today, Sunday, Katie came and woke him up around 10:30 and they drove up to the cabin that Katie's family owns on the lake. I think that her whole family was up there. They've been gone all day and it is now past 8 pm. The ring is at the top of his bed. The one tumor on his arm that I can see seems much smaller right now.

Justin's appointment with the orthopedic oncologist is this Tuesay at 9:00AM. I have read more and it seems as though most bone tumors found incidentally like this one of Justin's that are not causing pain are more likely to be benign---Just trying to calm my fears. When I am afraid I will trust in God.

David is still in East TN. He came up on Thursday, the day his sister flew in to the Knoxville Airport and drove up. She lives in Denver, CO. He doesn't get to see her much. He will probably stay until Monday, just to spend more time with her.

Thank you for your prayers.

Prayingmom
09-02-2005, 06:01 AM
6/2/05
Thanks so much for stopping by, for your notes of encouragement, for your prayers and for your concern for Jason. I'm sorry that I didn't get to post yesterday about how Justin's visit went with the orthopedic oncologist. After we got home from our trip to East TN, I washed several loads of clothes(washer is in the kitchen), but I had not washed dishes, and before I did the kitchen sink was stopped up and wouldn't drain and it was backing up into the dishwasher, so I couldn't even wash dishes. It gets kind of hard to fix food in a kitchen when you can't use the sink. A plumber came out today, and now my sink is working--Still haven't had a chance to work up the 5 gallons of strawberries we picked in East Tennessee, but they are in the refrigerator. The plumber had heard of Jason's cancer (rhabdomyosarcoma) a little girl at his church had it. She is finished with treatment and still doing well.

God has answered our prayers concerning Justin. This specialist said that it is not the kind of tumor mentioned before. She says that it most certainly is a non-ossifying fibroma which is a very common benign tumor found in over 30% of children. It should resolve by itself and will probably ossify on its own--nothing will need to be done. Another X-ray with a marker to measure and compare size was done and in 2 1/2 months he will have another X-ray just to check it for growth. I will feel even better when that X-ray is taken, but this doctor really seemed to know what she was talking about, so we are praising the Lord for this good news.

Jason is having a good week, though he always seems tired and it is so unusual for him to be in bed so early each night. He becomes nauseous each night and must take antinausea medicines and the 24 hour morphine capsules at midnight. Katie doesn't have to start her job at the UPS store (formerly Mailboxes, Etc.) until next week, so she is spending much time here and Jason loves it. He is wanting to move into the big bedroom downstairs, that his little brother has had for several years--so he won't be so cramped for space when his friends come over. Jason could have had that room years ago, but when he didn't take it, Justin did. Justin is being very gracious in giving up his big room for Jason. It is hard changing things around. Jason's friends are helping. This weekend they emptied the entire room except the couch and bed and steam-cleaned the carpet and wiped down the walls. They want to paint next. Jason wants me to empty the closets--that will be hard. I think as I empty them that we need to get rid of clothes they won't use. There is still a lot of work, painting and new furniture to think about.

Jason is having a break from the oral chemo this week. He had talked about being more aggressive with treatment and doing IV chemo again before he left for the beach, but has changed his mind and says that since the oncologists don't think it will do any good as far as giving him a chance to survive cancer that he will just leave his life in God's hands. He will continue on the oral chemo he said. The hospice nurse is supposed to come on Friday to check his blood counts and if his counts are good enough, then he will start chemo again on Saturday. The lumps on his arm and shoulder seem a little smaller than they were and he isn't having to take extra pain tablets for breakthrough pain. We are so thankful to God for these blessings.

Thank you all for praying for Jason. We continue to pray for complete healing. God is so good.

Best wishes.

About the genetic testing- it is not necessary, but if we have a family cancer syndrome it would be good to know, as it could mean that if Jenny (even though she is only 10 right now) also has it then she definitely would need to begin having mammographies in her early 20's--this could save her life. In the Li-Fraumeni syndrome (a defect in the p53 gene) -- in which there are early sarcomas and early breast cancers before age 45 there is a 50% chance of a child receiving the gene for it if a parent passes the gene down. It is not a 100% chance of getting cancer though--it is a predisposition for cancer. Right now only Jason would be checked--they have to have several vials of blood and unless God performs a miracle for him our time is limited in getting this done. If Jason is negative, then no one else would be checked, but if he is positive then down the road the other children or even David -- since it was his mother and grandmother with early breast cancers could have genetic testing done. In a few years with all that has been learned about genes, perhaps a defect in the p53 gene could be repaired. Who knows?

[We never had this testing done. We would have had to take Jason down for an appointment and they would have needed 6 vials of blood to test. I couldn't bear doing any more than was necessary to cause him more pain.]

Prayingmom
09-02-2005, 06:15 AM
6/9/05
Thank you all so much for caring and praying for us in this awful situation where the doctor's offer us no hope of a cure for our precious son, Jason. He is still ambulatory, though certainly I fear that the day may come when he may not be unless God heals him miraculously. He has started his oral chemo - etoposide - again and will have to take it each night for 21 nights before he has a break for a week. He is not complaining of more pain at the moment, but he is having a bit of trouble with constipation caused by his narcotic pain medicine. He has bouts of nausea-but is still eating well. Katie is working at the UPS store. She comes by before work and then again after supper to spend time with Jason. It seems as though he is more and more tired. No one can say what the future holds--how much time he has left and no more scans are scheduled ever.

It takes hardly anything to get me started crying. I've always been pretty sentimental--I even cried when I was a little girl watching "Lassie" with my mom saying that if I kept crying over it she would stop letting me watch it.
When I think about how healthy my little blue-eyed baby boy was, or how I held him, or remember my 3 little happy boys laughing and playing together, the dreams and hopes I had for Jason, his dreams and hopes now, our memories of his life--I cry and plead with God to spare his life and heal him. I often just feel so exhausted.

Jason has moved into Justin's room and is sleeping there, but there are still a lot of things left to move. The new room that Jason has -- as I've thought about it, it reminds me of a tomb--so dark--so cold. I lay on his old bed and cried the day he finally moved. That had been his room for 10 years (so many memories) and His room has always been just across the hall from mine now he is much further away. I can't easily get up and stand by his open door and watch him breath and just pray for him. I can't hear him if he ever calls for help. I miss him being close. What he wants was for people to quit hanging out all the time in his room and yet he spent a lot of money on pads for an X-Box game called "dance-dance revolution" so that his friends could have fun playing this game in his room. (So that kind of invites them to come in to his room). Last night they hooked it up to speakers so that the music was way too loud. The loud music and all -- Jason just couldn't tolerate it. He just seemed so tired and it seemed that he just needed to lie down and rest, but he couldn't. He and Katie went to downtown Nashville--I think it was just to get away from the noise and chaos. He would never tell his friends if he was feeling bad.

I spent a good part of the day trying to find a loveseat for his room. I finally found 3 that are the right color, but I thought I might take Jason there so that he can chose the one he likes best. He wanted only a love seat instead of a long couch so that his friends won't sleep in his room as they have been doing (and being on his computer constantly night and day) and not allowing him to get a good night's rest. He needs his sleep.

Justin is supposed to take the ACT test this Saturday. He didn't do well on it when he took it last year. I hope that he can get a better score this time.

I am very tired right now. We continue to pray for complete healing from God for Jason - a miracle. God bless you all.

6/13/05
We praise God that Jason still feels well and know that it is because of answered prayers.

The move has been completed. Jason is in his big new private downstairs bedroom that once was Justin's. I know that it has been hard on Justin giving up his room. In some ways I think the days when things were being moved were absolutely exhausting for Jason (and me). We still have clothes to go through and get rid of, DVDs and videogames to move, but the big job is over. Jason is really enjoying the room. His new bed with the thick plush mattress is better for his back. He has been sleeping better, he says, though he thinks that his back may be hurting more and he mentioned that he thought that tumors may be growing again. I cried the day he moved into his new room. His old room was just across the hall from mine and I could look in and see him breathing and that was a comfort to me. The new room is so dark that I can't see him at all when he is sleeping. I know that I am awful for thinking this, but this thought crossed my mind: that his new room is like a tomb --so dark and quiet. He really likes it that he can play his music louder at night without bothering his dad and of course that is what Justin misses.

Jason has had less nausea this week than last week, but it is still a problem. I mixed up the Miralax for constipation on Thursday and he said that he didn't need it, so that problem is better. He is thinking that his hair will all fall out within the next few weeks. He says he has been losing more hair. I have hoped that it wouldn't with this oral chemo. He is still up tonight playing video games.

Katie is due back tomorrow from a trip with her family. I know that Jason will be glad to see her. About the ring---I opened the box and the ring is still in it, so I asked him about it and apparently he had spoken to her about it, but he just said "Don't worry about it, Mom." He doesn't seem heartbroken, so whatever she said, she must have been kind. I still don't know what the ring was meant for. The ring just sits on a shelve in his room.

On the question of why there would be no more scans? Well, the reason is that the doctors consider Jason's cancer to be incurable. They do the scans and biopsies as part of staging the cancer before they start treatment so they can see what progress is being made. The one chemotherapy he is on now is considered palliative, not curative. They expect his cancer will soon become resistant to it and then grow and grow. The only reason he might possibly get more scans would be if he were in intense pain in a small area--a few days of high dose radiation to the area might alleviate the cancer in that area. Of course, what I keep hoping is that Jason's cancer would just melt away and that 2 or 3 years from now the doctor's in amazement and wonder would want to do scans and find that the cancer was completely gone. That would be a miracle--but not too difficult for God.

It has been a quiet rainy weekend and we did really need rain. It would have been good to sleep through, but Justin had a roomful of overnight guests on Saturday. I took the power cord for the X-box away at 2:00 AM and told them they all needed to go to bed when they got back from a late drive out to a restaurant close to 3:00 AM. Two of them left when I said they had to get up at 9:00AM. Justin isn't really supposed to even be playing Josh's X-box, since one of his friends (we don't know which one) broke Josh's headset, and Justin is supposed to replace it--which he did, but the new one didn't work even when it was just out of the box. We had made a rule that Justin couldn't have overnight guests on Saturday night(so he would go to church on the Sunday's he doesn't have to work at Arby's), but he promised to bring all the guys that spent the night to church with him. Then they wouldn't get up and even Justin didn't go to church and in fact lied about it--saying he went, but I had written the mileage down, so I knew that he had not gone to church. I think that Justin is embarrassed to go to church with the haircut that one of his "friends" gave him--they call it a "frohawk" and I don't like it at all, but he says that he will cut it all when it grows out more.

Church was great today, both this morning and tonight. It had been awhile since we had been to church on Sunday night due to traveling.

Many have recommended diets and such. With him on chemotherapy all of last year--we were very fortunate that he could eat anything at all, that he didn't have to have tube feedings. He was in critical condition when first diagnosed with failing bone marrow. He lost so much weight at first. He still has a lot of nausea. He is taking a lot of supplements, but can only manage to get them down once a day when it is supposed to be 3 times a day. If he were a little child I could more easily force a big change in diet. I know that he wants to live, but I don't know that he will be willing to change his diet. I have heard of some of the things you mention and I will check into it. Thank you for the suggestions. I have heard that diet changes can make a huge difference in some cancers, like breast cancer or colon cancer and even leukemia and lymphoma, but--they have never seen diet changes helping with Jason's kind of cancer. If it offered a cure......if it offered hope of extended life.... I just hate to take the food he loves away from him. About alkalinity-----I've heard that, too and I feel that all the sodas he drinks aren't good for him. I only drink water myself. Some have recommended something called cesium chloride. I have researched so much and have really not found answers. Our hope is in God alone.

We continue to pray for complete earthly healing for Jason. Thank you so much for your prayers for him. He has been so strong through all of this.

In Christ,

Dear Heavenly Father,
Please come and show yourself mighty in Jason's life. Even though the doctors say that it is hopeless we trust in you and know that you can heal him. Please place your healing hand on him and remove this cancer from his body. Lord, we know that nothing is impossible with you and this is a problem in which we need a miracle from You. Please heal Jason and may you be glorified in this. We trust in you and know that you are in complete control of Jason's life. We praise your Holy Name.
In Christ's name,
Amen

Prayingmom
09-02-2005, 06:21 AM
6/22/05
Hi Everyone,
Thank you once again for stopping by to check on us. Your concern and prayers mean so much. God hears and answers prayer. We do believe in the power of prayer.

Jason had a good week last week. He is taking only the 24 hour time release morphine for pain and has stopped taking the other pain medicine that was for breakthrough pain. He doesn't complain about being in pain right now. I don't know if that is just him being tough or if there is less pain. He is still taking the oral chemotherapy called etoposide and it is causing his hair to fall out. He thinks that he will lose his hair again--with other chemo he has lost eyelashes and eyebrows too. He must take the chemotherapy until this coming Friday and then he gets a 1 week break. The hospice nurse did ask how long the doctor wants him to take the etoposide and when will we know when to stop it. I don't know, but she is supposed to ask the doctor this week. Jason stays up late almost every night playing computer games. He got a new game so there is a challenge to beat the game.

On Saturday, Jason went to a friend's Eagle Scout presentation and then he went out to eat Saturday night with Katie and was out until late. He had the car out all afternoon and evening. He was so tired on Sunday.

The hospice nurse came on Friday to draw blood for counts. His White Blood Cells are 4.2 (increased), Platelets are 199,000 (decreased but okay), Hematocrit was 30 (a pretty significant decrease from 35 but not low enough to need a transfusion). Jason's doctors are sure that cancer is back in his bone marrow, but they see no need for scans or bone marrow biopsies, so we really don't know what is going on with the cancer, but continue to pray for what seems impossible--complete earthly healing.

I asked the hospice nurse if he might just go to sleep and not wake up. She said that just looking at him, with all his bodily functions working and all, that it isn't likely. She said for that to happen his heart would just have to stop beating. She said that what is expected to happen will not be an easy process. How I wish there was somewhere we could go or someone we could take him to who has a cure for this awful cancer. The only one we can go to is our dear Heavenly Father.

We are planning a family vacation to Lake Cumberland in Kentucky toward the end of July. I have never been to the area(about 3 1/2 hours away), but I have reserved a house with a hot tub in a gated resort community that has 3 pools. Cumberland Falls, the only waterfall in the Western Hemisphere where you can see a moonbow (on clear nights with a full moon-and there is a full moon when we hope to go) is only 15 minutes away. This is a month away and really it takes an act of faith to go ahead with plans when our son's immediate future here on earth is so uncertain, though his ultimate future in heaven is secure. Please pray that we will be able to take this trip and have a wonderful and memorable time and that we will have many more vacations together.

In Christ,

Prayingmom

Prayingmom
09-02-2005, 06:23 AM
6/28/05
Hi Everyone,
Sorry that it has been a while since I posted. It seems to take forever to get the blood counts back and this week the results were unbelievable even to the hospice nurse(explained below)

Dear Friends,

Just wanted to thank you all for stopping here to check on Jason and for your prayers for him. It means more to me than words could ever say that you would spend your time praying for my dear son--whom you will never meet here on earth. God is so good and I know that He hears our prayers. We believe in the power of prayer because we believe in a mighty God who hears and answers prayer.

Wow, it appears that God has answered our prayers concerning Jason's blood counts even before his week off chemo. The hospice nurse could not believe the first results so she had the lab run them again and they were the same, and so, unless they mistakenly used someone else's blood, Jason's counts are Hematocrit 34 (it had been 30), Platelets 228,000 (they had been 199,000) and white blood cells 2.8 (a decrease from 4.2). This is amazing considering that he had been on his oral chemo for 3 weeks and the trend had been a decrease in Hematocrit and Platelets. We don't know what this means, but we do praise the Lord that his platelets and hematocrit went up and pray that this Friday that will be confirmed when his counts are done again.

I had asked specifically "Please pray that his blood counts will come up this week, especially the hematocrit." on June 25. Thank you all so much for praying and Praise the Lord that he answered that prayer.

Now since I asked so specifically in that prayer and God answered, I want to ask specifically for prayers that God will cause all the visible tumors on Jason's body to begin shrinking and disappear and that the tumors internally would also shrink and disappear, not just temporarily, but permenantly as God heals his body. I know that God can do that. The doctors would say that what I am asking you to pray for is impossible, but Our God, Our loving Heavenly Father can do impossible things. He is the Great Physician.

This evening is when some friends will be coming here to pray for Jason. They will be here at 6:30 PM. I want to thank them for coming here to pray for him and thank you all for praying for our dear son.

Without scans, we really don't know what is going on with Jason's cancer, but continue to pray for what seems impossible, which is complete earthly healing. We look at the blood counts and notice how he is feeling, any other physical changes and that is what we have to go on. This week it seems to me that Jason is less tired in comparison to last week, although he does stay up nearly all night playing computer games and then sleep all day. It is hard going from day-to-day with the dire predictions and with what I, myself, have read about this kind of cancer and stories of other children.

You prayers mean so much to us. Thank you for praying for Jason.

God bless each of you.

In Christ,


"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and minds in Christ Jesus" Phil 4:6-7

"When peace like a river, attendeth my way;
When sorrows like sea billows roll;
Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul."

God is good all the time. Bless His Holy Name.

In Christ,
Prayingmom

Prayingmom
09-02-2005, 06:27 AM
Well, I am very tired and I need to go to sleep. I still need to feed the dog and the rabbit before I go to bed.

Will finish this tomorrow. I wish you could have known my dear son. Jason went to sleep and never woke up. He left us last Thursday at 1:00PM. I loved him so much.

LOtRsfan
09-02-2005, 06:42 AM
ohhh i am so sorry...though as least he's not suffering now, and he's in a better place ;-) *hugs* Jesus will look after him

jimmielegs
09-02-2005, 12:12 PM
mom, I love what you are doing - keeping Jason in your heart and mind - and sharing the last months of his life with us. Please take care of yourself, too.

I believe in heaven, though must confess that during a recent personal health problem, I suddenly became very afraid that there is no heaven. I mean, how can that be? My whole life I have been taught and I have believed there is heaven. That is the only thing that gave me comfort when my beloved sister died many years ago on a September afternoon - that I would see her again.

Doubts still creep in now and then. I think your faith and love of God will be a comfort to you. I offer my prayers for you and your family. Your pain will ease; I promise you that. Cast your cares upon the Lord.

Prayingmom
09-02-2005, 12:38 PM
6/30/05 - (Jason passed away 8/25/05)
Hi Everyone,
Thank you for the posts and your concern and prayers. Words just aren't enough to thank you, but it is all I have.

I saw Jason's arm and shoulder today and it seemed as if the lumps there looked smaller--perhaps it is just my wishful thinking--it definitely is what I want to see happening and what I am praying for. I took all the kids two different portrait studios today and had their pictures made--individually and all together. I even had 1 made of just the boys together--just like when they were little--for 5 years I had 3 little boys before God gave us a little girl. I wish that you all could see the pictures. I think they turned out really good. I spent a fortune. I haven't told David yet. I got a really large group picture that will come already framed. The boys ate at the mall while I picked out the pictures I wanted at the first studio. After the second pictures, Jason and Justin went down to the big mall (Opry Mills) to meet friends. One friend, Jenny, moved to Pennsylvania this year and is visiting this week and they got to see her. Tonight, Trevor, Katie and Alisha came over to watch a movie with Jason. The fan on Jason's computer stopped working tonight, so that computer (his favorite) is out of commission until we can find a fan.

June 30--it's our 26th wedding anniversary. I'm wanting to get membership in a pool near our house. David says that can be our present to each other and that is fine. Jenny and Josh are excited about that--it is so hot here. It is hard to pick out gifts for each other. We have everything we need and all we really want is for Jason to be well again. My favorite anniversary gift from David is a necklace with a gold chain and 4 little golden children shapes with my children's birthstones. I just love it and never take it off. Sometimes I hold the one with Jason's birthstone and pray for him. Our children are our special gifts from God. I love them so much.

I told Jason about the healing service being held near us on Friday night. It is called a Miracle Healing and Praise Event. The doors will open to the public at 5 p.m. Tapings begin at 7 p.m. Seating reservations are available for groups.

I mentioned it to Jason. I told him that I would like for him to go. He is not enthusiastic about going. In fact, he does not want to go. He said, “You know, Mom, it’s not a man who can heal me. It is only God who can heal me.” I told him that sometimes God uses men to heal people and I do believe that some people have the gift of healing even today. I asked him to think about it this week, but I'm thinking that Jason may not change his mind. If there is a chance that God is using this man to heal some, I so wish that Jason would go to this service. I read a little about the man on the internet and it seems that his services are very emotional. There are some who say he is more interested in money. There are doubters. I don't know what is best. I've thought about how people would react to Jesus today, if He walked the streets of our cities today healing people. He created quite a commotion in the cities and towns he visited 2000 years ago. He didn't work a crowd into an emotional frenzy before he began healing, but people became emotional, were amazed and rejoicing after being healed. I don't believe a true man of God with the gift of healing would take money for healing people.

Before I even talked to Jason about it, I saw the problem of the length of time we would have to wait. The service should last from 7-9pm, but the gates open at 5pm. I called the number they listed and talked to a lady there about how tiring the wait would be for Jason, asking if perhaps Josh, Jenny and I could go and wait and hold seats for Jason and David and then let them have the seats we were sitting in. She talked to another lady and thought that would be okay, though there might be a problem if the auditorium is full just getting the ushers to let Jason and David in and even if there were others waiting and being turned away because of no room seeing someone allowed to go in. She told me that the auditorium seats 1600 and that Rod Parsley is bring 600-800 people with him so there are only going to be 800-1000 seats available. She said that they have been getting a lot of phone calls about this service. I asked her what time she thought I should get there and she said that early afternoon (2 or 3 p.m.) would be good. She suggested (just in case we didn’t get in) that I bring a prayer cloth in an envelop with a self-addressed stamped envelop to the gift shop. [Do you know the story in the New Testament of people bring handkerchiefs to Paul for him to bless and these were taken to the sick and they were healed?]

This all leads back to one thing--our lives are in God's hands. Jason doesn't have to go to a special healing service with a special preacher to be healed. God can heal Jason in his bedroom tonight. God can heal suddenly or gradually. If it is God's will that Jason be healed, then he can heal him anywhere, but if it is not God's will that he be healed then taking him to a 100 different healing services wouldn't make a difference. Trusting God and praying--that's all we can do and the most important thing to do.

Thank you all so much for your prayers.

In Christ,
Prayingmom

Prayingmom
09-02-2005, 12:40 PM
Re: Relapsed cancer.

Dear Friends,
7/4/05
Thank you so much for stopping by here and for your prayers for my dear sweet son.

Well, it has been another eventful day in Jason's life. Sunday, July, 3, Jason went to the cabin that belongs to his girlfriend Katie’s family. They have 2 jet skis. Jason and another guy went out on the jet skis. As they were returning to the dock the second time they went out, Jason was following the other jet ski—apparently too close and too fast, though they say it was a freak accident, the jet ski in front “spun out” and Jason hit it head on. Both drivers was also thrown in the water. The other person is a fireman. I guess he is a friend of Katie's family. He was hit in the head and he was floating unconscious face down in the water. Both he and Jason had flotation devices on. Jason found him and turned him over and held him up until help came for him. Since he had a head injury they took him to the hospital. So the fireman has a broken arm and a really bad busted lip that had to be stitched up. Katie said they gave him morphine for pain. Anyway, 6 police cars, a fire truck, and an ambulance all came. Katie’s family had the paramedics check Jason out, even though he kept saying he was fine. He has a small cut on his knee. I noticed tonight that he is limping some and he says that his knee is hurting—the same one with the cut. Of course, it was hurt in the accident. He says both shoulders and his left thumb hurt. He has been only taking the 24-hour time release pain medicine. but tonight I asked him if he wanted some Oxycodone (5mg) and he did—he took 2 of them. I asked Jason if he needed to be seen by a doctor, and he said only if he was sore for more than a week. He is supposed to see his primary care doctor, this Friday at 11:00 anyway. He can’t do anything for him, anymore than the oncologist can—but he always prays with him before we leave the office. The hospice nurse is also supposed to come on Friday to do his blood counts. We don't know what his blood counts were from Friday, but apparently they are good enough that he can continue with the oral chemo--etoposide. I hope Jason isn't too sore today--they collided pretty hard and the second jet ski is damaged pretty badly.

As I’ve thought about this accident, I remember the many, many accidents and emergency room visits that Jason has had. He learned to walk at 9 months and by 10 months he was running, but he didn’t know how to stop. We joked and said we needed to get him a helmet. He’s always been in a hurry. He totalled a car in April 2003, the year before he was diagnosed with cancer. We were always afraid he would die in an accident since he is so accident-prone. We never dreamed he would have cancer—I guess no parent does.

We are still praying for healing. Jason just would not go to the healing service on Friday night. I wish that he would have. I think sometimes people really are healed at such services and if that's the case I just wish Jason would have gone. The 4 men did come and pray over Jason last week and that was really good. One person said that he is reading a book with a title like the Diet that Heals and he said that it would be good if Jason would take communion here at home everyday with just a sip of grape juice and a cracker and a prayer claiming the promise "by His stripes we are healed." I still think of sending a prayer cloth to those people who preached at the healing service to have them pray over it and return it to me.

Thank you all for praying for my son.

Prayingmom
09-02-2005, 12:43 PM
7/6/05
Hi Everyone,
Thanks so much for your messages left here and your prayers for Jason. Today there was another accident. Jason and Katie went to Hollywood Video to get a gift card for the fireman involved in the jet ski accident. They had also gotten him flowers and candy. Though he keeps everything inside, just like his dad, Jason feels really really bad about the jet ski accident and that someone was hurt. Katie needed to turn left out of Hollywood Video to come home and traffic always backs up at the red light there, so someone has to make a space so you can pull across two lanes of traffic to get in the turn lane. (It's one of the reasons we don't like to stop at Hollywood Video ourselves.) Someone hit Katie's car when she pulled into the turn lane. Her airbag inflated and both cars had to be towed, but thank the good Lord that neither Jason nor Katie nor the people in the other car were hurt. Jason called from the scene of the accident and Katie was in the background crying. Katie is at her house and Jason is home, his voice sounds shaky, quivery, like he could cry--he says he is just shaken up from the accident. That was 5 minutes ago. Now Jason has left in my Odessey van to pick up food at Sonic and take it to Katie and just be with her to try to help her feel better. She is very upset. The chaplain from Alive Hospice was supposed to come and meet Jason for the first time today at 3:00, but I had to call and cancel it. Jason is not sure when he will be back from Katie's house.

My poor son. I told you that he was accident prone as he grew up. About every 2 to 3 years there was an emergency room trip for him, starting at age 2. After the accident we would sort of joke about it, as none of them were life threatening. Stitches & broken bones&sun burn, finally a cancer diagnosis. Car wrecks and jet ski accidents. I'm afraid that he is going to start thinking that he, himself, is nothing but bad luck--but I am definitely not going to mention the word luck at all to him. I don't believe that our lives are controlled by luck. I believe that our lives are in God's hands. Through all of this--I do see, God could take Jason at any time, but he hasn't. There must be a reason for that. Jason is still here living with what his doctors say is terminal cancer. I pray for a miracle of healing, which I know that God can quite easily, with just a word, do. But if God choses not to heal Jason here on earth, I do pray that he doesn't have to suffer.

Thank you for praying for us. I never know what is going to happen next. I often wish all my children were small again so that I could keep them close and safe in my loving arms. I wish I could protect them now and make everything alright. I can't. All I can do now is pray and ask others to pray. Oh God, please hear our prayers.

In Christ,
Pam

Prayingmom
09-02-2005, 12:46 PM
7/15/05
Sorry it has been so long since I posted--I think only a week, but I had to look for my string--it was already on the second page. Thank you so much for stopping by and for your messages and your prayers for Jason.

When the hospice nurse came last week, Jason said that he had noticed a new lump on the side of his chest, just above another lump--so tumors apparently are growing. His doctor wants Jason to continue on the Etoposide chemotherapy as she thinks that it has definitely slowed the growth of the tumors. I think that the doctors are surprised that Jason is still up and doing things at this point. So many kids with rhabdomyosarcoma Stage 4 are gone before a year is up.

Jason attributes doing this well to the fact that he has never been happier in his life than he is now because of Katie. When his counts are up, unexplainably he says it is because he got to see Katie alot, ate well, and got enough rest.

He still has some trouble with constipation--he just doesn't ask me to give him the stronger prescription laxative as soon as he should. He expects me to ask him. If he is nauseous he just can't take it. He also wrote down that he is experiencing urinary hesitancy and I notice here at home he has urinary frequency. I'm so concerned that this could be caused by that tumor in his retroperitoneal area growing and pressing on bladder. His doctor asked about urinary tract infection. Things haven't changed much in the last week. His abdomen does look so much more rounded, when it used to be so flat--he has been eating well (not starving himself-like he used to do-unbeknownst to me) and he doesn't get any exercise now, but he hasn't gained weight. Without scans there is no way of knowing, but we just keep praying.

We leave this Saturday for our trip to Lake Cumberland. Pray for us--that it is a good trip, with many good memories that we can hang on to for a lifetime. Katie is going with us. You remember that Jason said with whatever time he has he wants to spend as much time with Katie as he can. I pray that it will be years and years.

We continue to pray for complete healing here on earth for Jason. Healing that will surprise the doctors and cause them to give God the glory.

Prayingmom

Prayingmom
09-02-2005, 12:48 PM
7/23/05
Hi everyone,
Thank you so much for your visit here to stop by to check on Jason and for your faithfulness in praying for him.

Yesterday we got back from our trip to Lake Cumberland and Cumberland Falls in Kentucky. It was hot and humid with at least one rain shower each day. Mostly we all just rested a lot, watched TV, played card games, and there was a pool table downstairs. We did go to the pool several times. Jason and Katie came down to the pool once after it had cooled down a lot. One day we drove over to see Cumberland Falls. It was nice that it was a just short walk to the falls. They were impressive. We had hoped to see the famous moonbow and we started over there on the right night and at the right time, but clouds and lightning increased as we drove so we turned around. As for the trip, it was nice to get away. I just wish we could go to some magic place here on earth where Jason could go to get away from his cancer and be happy, healthy, and well.

Katie, Jason's girlfriend, went with us. Because Katie came, Jason enjoyed the trip--just getting to spend time with her. We were very thankful that she could come and also enjoyed getting to know her better. It goes without saying, but she is a very sweet girl and a pleasure to be around. She even got along with Justin, whose eyebrow, by the way, has healed from his skateboarding accident. We talked with her about her plans. She wants to be a second grade teacher and even though she is only a sophomore this year, she will have the opportunity in January 2006 to student teach with her own second grade teacher (here in town) for the month. This is kind of a new idea to let them student teach a little--early on to make sure that this is really what they want to do with their lives.

We have learned that Jason will not be able to go to MTSU as he had hoped and planned on all summer. The off-campus housing that he and a friend had spoken of just will not work out. Jason thinks that living in a dorm room would not be the best for him and I have to agree. I wish that his hopes and dreams had worked out, but I had my doubts about sending him there where I couldn't monitor his medicines or his diet. Although it is only one hour away that is quite a distance considering his health. David and Jason are set to go to orientation down there on Monday and Tuesday of this week, but now I'm unsure of what to do about that. He was very, very disappointed that the housing plans fell through. He won't mention it again. He will just put it inside and deal with it the way he always does. If I mention it, he will say, "Mom, just drop it."I feel terrible for my part in not checking with the friend's parents so that Jason got his hopes up and then the friend had to break this news to him. The friend's mother said that she had told me months ago that it wouldn't work out, but I don't remember it at all. I guess I just put it out of my mind, figuring it was so far away, but I honestly think I would have remembered. Where's my brain? We aren't sure why Jason wants to try to go to college right now. It seems like even a light load of classes would be so stressful on him. Volunteer State Community College is only 15 minutes from us. That is where we had planned on sending him for the first year of college before he was sick. Perhaps if he really wants to go to college, he could take a few classes there.

Jason seems more tired. His back still continues to hurt in that one spot near his left shoulder blade. He tries hard not to let on, but it seemed to hurt more this week. He tries to be tough and he is. He doesn't complain. He refuses to increase his pain medication because of the side effect of constipation which is always a problem for him now. As far as I can tell his left foot is not hurting that I had mentioned before. The chemotherapy causes him to feel nauseous off and on throughout each day. We didn't get back in time for him to get his blood counts done on Friday. For the next 7 days he will get a break from chemo. Usually, though, he doesn't get a break from the nausea or constipation.

Please pray with us concerning Jason's disappointment about MTSU and the Lord's will there and about the management of his pain, nausea, and constipation--that God would give him relief from all three. Please continue to pray for complete healing here on earth for Jason.

Thank you so much for taking the time to stop by here to check on Jason. It means so much to us.

Jason's mom

Dear Heavenly Father,
Please show yourself mighty in Jason's life and place your healing hand on him. Oh God, please heal his body here on earth and give him hope and a future. You are in control of each of our lives. Nothing is too hard for you. Please be merciful to us and spare my dear son's life.
In Jesus' name.
Amen

Prayingmom
09-02-2005, 12:56 PM
7/31/05
Dear Friends,
Sorry it has been so long since I updated you all about Jason. I have stopped by almost everyday, but didn't have the heart to write. Thank you all for stopping by. Thank you so much for your concern and prayers for Jason. It means so much to us to know that you are praying for him. I feel it is because of everyone's prayers and God answering them that Jason is still here with us and that he has been able to enjoy life these past 18 months despite a diagnosis of terminal cancer. We are so very thankful for this time we have with him. We continue to pray for Jason's complete healing here on earth, knowing that God can heal him in an instant. So we pray for miraculous healing and that God would be glorified.

Jason has been experiencing new symptoms that are worrisome. He is not one to complain, so it is a major thing when he says something is bothering him. Last week Jason told me that he has been experiencing episodes of chest pain that is difficult for him to describe lasting for 5 to 10 minutes. This doesn't happen every day. This week he told us that his knees have been hurting a lot when he first gets out of bed making it difficult for him to walk. Today he said that all his joints are aching and his neck is hurting and that he has been feeling bad all day. I noticed tonight that he is limping and he just got up out of bed. He said that he couldn't sleep and he could barely make it up and down the stairs. He seems to be hurting a lot. These changes aren't good at all. He has had a break from his oral chemotherapy for the past week and is starting on it again today. We don't know what his blood counts are. The hospice nurse told us the lab wouldn't have results until this morning, but we didn't hear from her and so we assume that this counts are okay and have given him his chemotherapy tablets tonight. With all these symptoms he is having, Jason talks of increasing the dose of chemotherapy on his own, but I know that isn't something that should be done without a doctor's approval since he is taking the correct dose already. We honestly don't know what is going on with all these aches and pains. The hospice nurse says that the joint aches could be arthritis and the chest pain could have been stress related due to the heat. We are very concerned, of course, that it is this awful aggressive cancer spreading rapidly and that his time is growing short. Please pray especially about this.

Jason has decided to try to go to the local community college. It is only 15 minutes away from us. Classes start on August 29. He hasn't decided which classes to take yet. Many of his friends, including Katie, will be leaving for college again around August 16. This is the second year he has had to watch them all leave, while he stays here at home. I know that he wishes he could just live his life, get away from home, be on his own and all, but I wouldn't want him to be far away right now. So with all this happening I am back to more tears.

On December 16, 1985, 9 days before Christmas, God gave David and I the best Christmas present ever--an answer to over 6 years of prayer for the blessing of a child--God gave us Jason. When he was 9 days old I sat and watched a videotape of baby Jason and cried thinking of how soon he would be grown and be going out on his own. I never dreamed that he would have cancer at 18 and my heart would be breaking the summer of his 19th year. Oh dear Heavenly Father, please have mercy and spare his life for now.

Thank you once again for praying for us and for our dear Jason. I love him so much and we do so desperately need your prayers. I'm sorry to have to share such news as this.

In Christ,
Prayingmom

Prayingmom
09-02-2005, 01:01 PM
8/01/05
Thank you so much for your prayers--and please keep praying. Jason said that his knee felt some better today-Sunday. He is was still limping, but didn't seem to be in as much pain. He tries so hard not to complain and to keep going no matter what.
***************************************
The hospice nurse just called today (Monday) and said that she will come out tomorrow to draw blood to do a repeat on his counts at a different lab as the hemoglobin on Friday was 8.8 which was unbelievably low. She said that it was so low that he shouldn't even be able to walk around. I'm so concerned now that anemia may be the reason for his severe joint pain on Saturday when he said he was hurting all over. Please pray that his counts are better than Fridays--that it was a mistake by the lab or something, because if his counts are really that low it may mean the end of all treatment and the beginning of blood transfusions and very little time. It makes me sick to think about it. He is supposed to continue his chemotherapy until we find out. The nurse will come at 10:30 on Tuesday and we should get results back Tuesday afternoon.
***************************************
Thank you so much for your prayers.

8/02/05
Jason wanted me to call and find out what all the counts were. When the hospice nurse called back I learned that the counts were not 8.8 hemoglobin, but 0.88 hemoglogin, 1 for white blood cells and 46,000 for platelets. All of these are very low. Someone with a hemoglobin of 0.88 would be nearly dead--unable to get out of bed--would not be getting enough oxygen for life. Anemia is a lower than normal number of red blood cells (erythrocytes) in the blood, usually measured by a decrease in the amount of hemoglobin. Hemoglobin is the red pigment in red blood cells that transports oxygen. Anemia can have many causes. For Jason low counts were the first sign of rhabdomyosarcoma (cancer) in his bone marrow. Normal hemoglobin Male: 13.8 to 17.2 gm/dl. Jason's hemoglobin counts have been hovering around 10 lately.

Somehow knowing that the hemoglobin count was 0.88 makes me feel somewhat better, because it simply has to be a mistake. Hopefully we should find out what his counts really are tomorrow afternoon. Having blood counts high enough is absolutely critical for Jason to continue on chemo. If his counts drop and don't come up they will assume that this chemo is no longer effective and that cancer is taking over his bone marrow again and will stop this chemo. Jason's doctors truly expect that this is inevitable. They don't plan any more bone marrow biopsies, since they don't plan more strong IV chemo. In fact, there are few options left after this chemo--etoposide. There are just a few drugs left that are standard for this type of cancer and only 2 of those are oral--topotecan and cytoxan--and he has been on those before, so I don't know if they would let him try those.

I asked him about his painful joints and his knees hurting tonight and he said that he is okay today. On Saturday night when he was hurting so much he said that he laid on his bed praying for a long time and was finally able to get to sleep. When he woke up he wasn't hurting as bad and hasn't since. I did increase his Decadron (drug for inflamation) from 4 to 8 mg.

The healing hand of God is our only hope for Jason. The doctors give us no hope. This is not curative chemotherapy they say.

Thank you so much for praying for Jason.

8/04/05
Hi Everyone,
Thank you all for your prayers and the the messages you have left here. It means the world to us.

We finally got Jason's repeat blood counts back. I am very thankful to report that the hemoglobin was 10, the hematocrit was 32, the platelets were 131,000, the white blood cells were 3.4 and the automated neutraphil count was 2,626. All except the neutraphil count are a little below the normal range, but slightly improved from the last believable counts on Friday a week ago. Jason thinks that last Friday the nurse was so excited that his port was working well again that she forgot to draw the solution out that she used to flush the line and so she only got a very dilute sample of blood. From now on when she gets his blood the lab at Vanderbilt Children's Hospital will do the testing and I like that better. His port did good again yesterday, so we are thanking God for that also. The hospice nurse never called me to tell me his counts. I called the children's oncology clinic, and the nurse there called me.

Steven spent the night last night and he slept on the tiny loveseat in Jason's room, that Jason wanted small so people wouldn't sleep on it. Jason really wants to have his room to himself at night so that he can really sleep with no noise, nothing to disturb his sleep, but he won't express that to his friends. A few weeks ago Jason even gave up his soft comfortable bed up for a night for one of his friends, while he slept on an old couch. I am sure he suffered more back pain and had to take more narcotic pain relievers as a result. I know Jason wouldn't have liked it, but before that boy left, David and I, each separately had a talk with him about how important it is for Jason to get a good night's sleep (or day's-as he doesn't often go to bed before 4 or 5 AM and sometimes later and how fragile Jason's health is. We may have offended him as he hasn't been back since, but he never came often and when he came he hardly talked to anyone and always took over Jason's computer, not seeming to care about Jason. Jason would never complain.

Steven is still here. Tonight, I am afraid he is keeping my Josh awake. This week, I am keeping the children of our friends for 3 days, as their grandmother is recovering from knee surgery and can't keep them. Their daughter is one of my Jenny's best friends and their son is Josh's age. They are the nicest kids. The thing is--they get here at 7:30 each morning. So Josh and Jenny (and me) need to sleep well. It has been a good week for them, having friends over all day. Tuesday the girls had a lemonade stand and made $11.00. Wednesday I took them all to the pool. Tomorrow, we may go to the park and feed ducks and then the playground. It is just hard to leave Jason. He doesn't ask for much, except for food usually after 3 or 4 in the afternoon. I want to be here just in case he needs me. David has been trying so hard on his own to help the other kids have fun and think about something other than their brother's sickness.

Katie came for a while tonight. Everyone just left Jason and Katie alone while they watched a movie. It is only 2 weeks until she has to leave for college. She has to leave a little early because she got a job as an RA (resident assistant). Since she got the RA job she was happy to be able to quit her job at the UPS store, but I haven't seen her much this week. Jason seemed very tired and irritable tonight after she left and has already gone to bed, which is unusually early for him. He won't tell me how he is feeling--he just wanted me to leave the room. He gets tired of me asking questions, but I was just talking as I picked up clothes on his floor and emptied his garbage.

We just don't know what will happen from day to day, but we know that God is in control and that He loves us and has a plan in all that happens. We continue to pray for Jason to be healed here on earth. We are thankful for each day we have together. There are no guarantees in this life for any of us, but all in my family have trusted Christ as Saviour and so we have the sure hope of eternal life and a home in heaven--a much better place to be.

Love in Christ,
Prayingmom

Prayingmom
09-02-2005, 01:07 PM
8/16/05

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH. Research for childhood cancer is so very underfunded. I'm hoping to host an Alex's Lemonade Stand - you can do web searches to find out about it - in September if I can find a good location. Alex's father said that funds from stands could be designated to be sent for research for a specific childhood cancer. If I get to do this I hope the money can go to Dr. Frederick Barr, who is researching rhabdomyosarcoma.

Please continue to keep Eric and his family in your prayers. Eric will soon be 10. His chemotherapy has been stopped and his tumors are growing. They were able to go on a trip to Hawaii and he swam with dolphins. Pray that his pain can be controlled. He has the same kind of cancer that Jason has.

Hi Everyone,
It has been almost 2 weeks since I updated. I know that you all are still praying for Jason. Thank you so much for your prayers. It means so much to us to know that you are praying.

Forgive me for not writing much lately. I just haven't felt up to it. Jason is doing okay. There are little things that are happening that are worrisome. Everytime he tells me something new - I just feel sick over it and don't know what to do as I can't make the problems go away and I don't even know what they mean. There have been issues like a headache all day on Friday a week ago (he sat in his room all day long, at the computer, no music and not able to get relief from the pain) and that was followed a few days later by stomach problems (diarrhea). We wondered if it was a virus as Josh also had a headache last week, but the first thought with Jason is cancer. His blood counts done last Wednesday were pretty good (Praise the Lord)with WBC of 5.0, ANC of 4,200, (both increased and back in the normal range) but platelets dropped to 123,000 and hematocrit dropped from 32 to 30 and those are both below normal, but then he is on oral chemo. Pray that the hematocrit and platelets would come up again. He told me on Saturday that he has noticed another lump--a small one in the muscle above his left knee--a reminder that his cancer is progressing, that we don't know what else is happening internally and that we don't know a way to stop it. This lump doesn't hurt and it hasn't turned red like the other lumps. Tonight he told me that the area on his chin under his lip on the right side is numb and has been for about 2 weeks, but he says it doesn't bother him. I have no idea what could be causing this. His face seems slightly swollen--I'm thinking from the Decadron - a steroid--the dose was increased when all his joints and his knee were hurting a few weeks ago. We've been trying to taper the dose and decrease it. I don't even know if Jason realizes that his face is swollen and maybe that's why he has the numbness. Kristen comes to do blood counts on Wednesday this week. For now he is still on the chemo. This Friday will be the end of another 3 weeks, so he is supposed to get a one week break--which is scary. Please pray that his counts will be good and about all these "little" issues that could be important. We just have to keep praying.

He is supposed to start college the week of 8/29. David signed him up for a few classes. The classes he wanted most were already full. In the disability office this week at the college where he is to go, he spoke of transferring to MTSU in the fall a year from now. How hard it is right now for me to even think a month (or a week) in advance, let alone a year. I wish there was somewhere we could take Jason so that he could be well again. I am very sad. We are trying to just live day by day the best we can, but it is hard. We continue to pray for complete earthly healing for Jason. The healing hand of God is our only hope for Jason. The doctors give us no hope for a cure.

Jason and Katie spent as much time together this week as they could, but she was very busy getting ready to leave and spending time with family and friends. Katie left for college early this morning. Jason won't get to see her until the end of September when he plans on driving down to Birmingham to go to a concert with her.

Justin goes back to the doctor for the repeat X-ray tomorrow. Josh has had a blood test and then a repeat blood test a few weeks later and there is a concern over elevated liver enzymes. He has to have an ultrasound of his abdomen soon to check and see if his liver is enlarged (don't have a date yet). I have also scheduled an appointment for Josh to go to a dermatologist to have his moles checked--some are large with irregular borders--this is on September 1st.

It has been very, very dry here. David moves a sprinkler around every evening to try to keep the grass from dying. Some places near us have gotten downpours, but it has completely missed us. I haven't been praying for rain or anything else much except the really important things (health for all in our family and salvation for those we love). Everything else seems so trivial to what I pray for constantly which is for God to heal Jason. A few drops of rain fell as I was driving home yesterday afternoon and I did finally pray for rain. I prayed for not just a little, not just those few drops, but a lot of rain. You know what--God did give us rain--buckets and buckets of rain-it poured down and then it rained hard again today. What does that mean? We have all prayed so hard for Jason to be healed. I know that God can heal him--I know He can. If God can send buckets of rain after just a little prayer.......

I just can't thank you enough for your prayers for Jason. How could we make it through each day without your prayers and support and the Lord's continual presence.

Jason's mom

Dear Heavenly Father,
Please show yourself mighty in Jason's life. Even though the doctors say that his cancer is incurable we trust in You and know that You are the Great Physician and You can heal Jason. Please place Your healing hand on Jason and remove this cancer completely from his body, every single cell. Thank you that he is no longer having chest pain or other pain. I lift up to you these new concerns--the headache, his stomach problems, this new lump and the numb area on his face. Please be with Jason and comfort him and take away any anxiety he feels. Lord, we know that nothing is impossible with you. Please heal Jason and may you be glorified in this. We trust in you and know that you are in complete control of Jason's life. We praise your Holy Name for your mercy, your grace, and your goodness.
In Christ's name,
Amen

Prayingmom
09-02-2005, 01:15 PM
8/22/05 10:22AM
Hi Everyone,

We are back from our trip to East Tennessee. It was a hard trip for Jason. He didn’t feel well at all. My parent’s air conditioner froze up and it was too warm. To be comfortable, Jason really needs cool air—I think it helps with his nausea, too. He didn’t sleep well and just wanted to get back home to his own room and to his computer where he can stay in touch with his sweet Katie.

The main reason I am writing is to ask you to pray for him about pain control. This is the week without chemo and he is coming to dread weeks without chemo because he ends up having more symptoms. Right now he is in a lot of pain. He woke up hurting all over, which has passed, but now his kneecaps are hurting a lot. He is rubbing them. It is not helping yet. He says that this will pass. He took extra pain medicine, but it isn’t helping yet. Though I am not in the same room I can hear him and I know that he is in a lot of pain. I don’t know of anything that I can do for him. I will call hospice or his doctor today. He has alway been so tough. This is my little boy who no matter how badly he was hurt, he would say to me, "Don't worry, mom, I'll be fine." Things aren't fine right now and I don't know that they ever will be (until we reach heaven) though we keep praying for healing. The area of numbness on his chin had spread into his mouth and gums when he first woke up. Now it is back to just the original small area on his chin. Please pray for him especially hard this week, while he is off chemo. Also, please pray that his counts come back up so that he can begin chemo again this Saturday night. If his counts don’t come up he can’t start chemo. Please pray for God to heal him.

Thank you all for faithfully praying.

Love in Christ,
Prayingmom

8/22/05 1:15PM
Thank you for praying.

I called hospice to find out what I can do for Jason. He is on an oral time-release morphine called Cadian 60mg. He also has available oxycodone 5mg and hydrocodone/Apap 7.5/500. He has avoided taking extra pain medicines for a long time, but he took 2 oxycodone before I called hospice. Hospice had sent a comfort care box for us to keep in the refrigerator. The hospice nurse told me to give him 0.5ml of the oral liquid morphine 20mg/ml (fast-acting, but only for a short time). I can give him a dose of the liquid morphine every 30 minutes as needed. There are 30 doses in the bottle. Just now I also gave him a 30 mg Avinza (left over from when he was on the clinical trial and they were adjusting his dosage which is also a time release morphine). He took 2 of the hydrocodone. I am to write it all down and perhaps the time release dosages can be increased enough to give him relief throughout the day, especially on the week without chemo. Really this is the most pain that I have ever seen him in. I hope that he can get some sleep today--he only slept for 2 hours last night. He wasn't hurting when he went to bed.

He has finally gotten some relief from pain. It has been about 3 or 4 hours since this intense pain started and 3 hours since his first extra dose of pain medicine. I hope we can get this under control. I can't stand to see him moaning and groaning in pain and barely able to walk to the bathroom.

His college classes start next week. He says he can't go if he is in pain like this and he really wants to go to college, though he says he is kind of dreading it. He said he would like to live at least until next summer, I guess so that his friends would be home with him again. We don't really have any choices as to length of his life. It is out of our hands.

In Christ,

Prayingmom

8/24/05 2:46AM
Hi everyone,

I'm so sorry to keep bothering you, but bad things are happening to Jason and we especially need prayer right now as he is having problems. I thought you would want to know. Thank you so much for praying for him.

I had to call hospice and have someone come out today. She didn't really even look at Jason or check his pulse or blood pressure. He was in bed and she didn't want to disturb him. I don't think that he was really asleep, as he hasn't been able to get good sleep for days. She looked at my record of pain medicines he has had to take to try to stop this pain. After that she talked to one of the doctors at hospice who told her that we need to increase his time release pain medicines from one 60 mg capsule at bedtime to two 60 mg capsules twice a day. That is how bad his pain is -he needs four times as much pain medicine. The nurse called it a pain crisis and said that sometimes it subsides and pain medicines can be reduced later. We were running out of pain medicine and she reordered it and it was delivered today. His knees and now both ankles are hurting a lot. He is miserable. He has a headache. When he stands up, his head hurts worse. His head hurts less when he sits quietly in his computer chair. He is dizzy. His legs hurt more when he gets up after laying down for a while. So all he has done today is sit at his computer. He hasn't slept well in so long that he keeps nodding off. His feet are swollen and feel cold. So we wonder if it is just because he has had to sit all day or is there a tumor blocking blood flow. He is nauseous. He hasn't eaten anything today, but he did drink fruit juices, soda and water. After he walked to the bathroom I checked his blood pressure and pulse and it was 155/82 and his pulse was 142. Later, after he sat a while it was 109/77 with a pulse rate of 112. His pulse has always been around 60 at rest. Could his anemia be so bad that he just isn't getting enough oxygen? Or is it the stress and the pain causing the high blood pressure and heart rate. I wonder if I should just take him in to the clinic to have counts checked and if they are very low he could get a transfusion.

He just took some pain medication and is lying down in bed to try to sleep. Please pray for him. Pray that God would relief the pain so that he can rest and pray that God would give Jason more good days. He wants so much to go to Birmingham to a concert with Katie on September 16. He was hurting so much today that he is just hoping that he can see her again--one more time he said. It is so hard watching him suffer and not knowing what to do or what to say to him and to not be able to stop the pain or stop this cancer. We continue to pray for complete healing-yet with what is happening we can't help but wonder what is happening.......

In Christ,
Prayingmom
[This was the night he went to sleep and never really woke up again--It was Wednesday morning a week ago]

Prayingmom
09-02-2005, 01:40 PM
8/24/05 11:34AM
Dear Friends,

Thank you all for praying.

I just thought I would let you know that Jason finally went to sleep. It was around 2 AM. I was supposed to wake him at 5:15AM to give him more of the time release pain medicine, but I slept until 6:30. Jason was sleeping when I woke up. David told me not to wake Jason-that he needs his sleep. It has been a long time since he has had a good night's sleep. More time has passed and I have tried to wake Jason several times to give him the pain medicine and just can't rouse him. I touched his arm. I touched his feet to see if they are still swollen and they appear to still be swollen. I called his name. He is breathing deeply, but he is making noises, almost like groans, as he breathes. Although he raised his head up a little, he didn't open his eyes or speak to me. Even if he has only gotten 1 hour of sleep I can usually wake him up. I am concerned that he will be hurting when he wakes up or that he won't wake up at all. Pray with me that he is just catching up on the missed sleep and that he will awaken refreshed and not in pain. I had wanted to have blood counts done in the clinic today to see if he needs a transfusion which would take hours and hours. He is sleeping so soundly. Yes, it is definitely an answer to prayer that he is sleeping and not sitting up being miserable.

In Christ,
Prayingmom

8/24/05 4:10PM
The hospice nurse finally came and tried to wake Jason. He wiped a wet washcloth over his face. Jason opens his eyes with a blank stare for a few seconds, but then closes them. He doesn't talk to us. His lips are dry and peeling. The nurse used a special swab to wet them and put chapstick on his lips and that didn't wake him. His blood pressure was okay, but his heart rate was 140. The nurse would not take a sample of blood. We do have that appointment on Friday with his oncologist--if he wakes up. I am very sad to think that he might not wake up again here on earth. This nurse had never seen Jason before and has no explanation for what is happening, but this change is so drastic and so sudden, I don't think anyone can explain it. He thought that it was probably the increase in pain medicines causing this and we are to try to wake Jason up every hour. Jason doesn't seem to be in pain right now. He had been in so much pain for the last 3 days.

Thank you for caring, and for suffering through this with us and for praying for my precious son.

In Christ,

P.S. about the lumps. They began as solid, hard masses under the skin each one about the size of a pea when he noticed the first one. As time goes on the skin above them has reddened and looks inflamed, but he says that they are painless. If you ever suspect that anything could be cancerous, please don't ignore it. Have it checked right away and don't let any doctor belittle your concerns. My son had pain deep in his breast bone (sternum) and shortness of breath--the pediatrician dismissed it as "growing pains"--how I wish it had been. Childhood cancer is rare and the first signs of it are often dismissed until it is at a worse stage.

Prayingmom
09-02-2005, 01:41 PM
Dear Friends,

Thank you for praying for Jason.

I just wanted to let you know how he is today. He has never really woken up since he went to bed at 2:00AM August 24. When he lay down at that time he was dizzy and had a headache. It has been more than 29 hours ago. Yesterday he would open his eyes and speak, usually incoherent words and answers like "Yes" or "No." He was aware enough at one point, that he asked his dad, "Am I dying?" and then just as quickly he was out again. He is even less responsive today and he doesn't open his eyes, but he does not seem to be struggling or thrashing or in pain. He has had nothing to eat or drink in all this time, of course and he is not on IV solutions. He seems to be running a fever. I have kept a cool washcloth on this forehead since 5:40 this morning. Two hospice workers came by to see him yesterday. Today, one of the hospice doctors will come. There has been no suggestion to take him to the emergency room or anywhere.

In Christ,
Prayingmom

Prayingmom
09-02-2005, 01:43 PM
8/25/05
Dear Friends,
Jason passed away and was received into the arms of His Lord and Savior Jesus Christ at 1:05PM today. (His dad's 50th birthday) Jason was surrounded by his dad and mom and brothers and sister. We are sad beyond words.

Thank you for traveling this journey with us and your many, many prayers.

Love in Christ,

Prayingmom
09-02-2005, 02:01 PM
8/26/05 1:58PM
I have been so touched and am so grateful for all of your prayers for Jason. Words are inadequate to express our gratitude as you have come alongside us as Jason fought his battle with cancer.

We have made the arrangements for Jason.

It was difficult, because I had wanted to bury him near us so that I could go often to his grave, but many, many friends and especially many older relatives just could not make the trip here. Even his grandfather could not have come if we had buried Jason here. I thought that if I want to I can go and grieve for Jason at the cemetery where Connor is in our town. I'm sure that Connor's mother wouldn't mind if I come and cry for both Connor and Jason and maybe she will even let me put a picture of Jason there, too. Connor was 10 when he died, last November. Connor is in the mausolem (sp?) Connor and Jason had the same cancer.

Visitation was Saturday 8/27/05 at our church. There was a memorial service afterwards. Brother Glenn, our pastor and Brady, who was Jason's youth minister, conducted the service.

Jason's body was taken East to be buried in the family cemetery. There will be a visitation on Sunday evening at my grandmother's church. Burial was Monday in the cemetery where his great grandparents, his uncles, and great uncles and great aunts are buried. It is high on a hill. We have decoration there every year in July.

I keep reminding myself that Jason is no longer suffering. He is with Jesus, whom he trusted as Savior when he was only 4 years old. He is not with us. I feel numb--just going through the motions-mechanically--most of the time, except when I say the words, "he is gone." and then I cry.

Love in Christ.
Jason's mom

8/28/05 2:30AM
I will post more later, but I just want to thank you again for caring so much and praying so hard for my dear sweet Jason. I never deserved such a wonderful son. What a priviledge it is to have been blessed as his mother. My simple mind can't seem to get a hold of what has happened. It is too much to take in and I can't really sleep. There was an awfulness to the last days of Jason's life--the agony and pain of Monday and Tuesday and then him going to sleep never to wake up except a question, "Am I dying?" and then the end. It was terrible--his breathing changed and suddenly his eyes opened wide and blood came gushing from his nose and mouth. We rushed the other children out of the room, as David said, "Pam, get me something" - to soak up the blood and then Jason was gone......just gone. I haven't told many people what happened at the very end--it seems too terrible and I cry as I write this and that image comes back to me. I'll delete the description later as it is just too much. I'm so sorry to put it down here. I thought it would help me deal with it better if I put it down here. Please forgive me. After Jason was gone, David went out to find Justin (17) who had run out of the room--he was sobbing inconsolably--he said, "There's so much more I wanted to tell him." Justin went out later that day with friends to go cliff-diving--which sounds kind of dangerous to me (diving into the Cumberland River from 40 feet drops). He spent the night at a friend's Thursday and Friday night. He just wanted to go somewhere and not think about Jason dying.

The Lord saw us through this day. So many family and friends came to the visitation and service. When my sweet Jenny saw Jason's body--now just an empty shell--she said, "Did they put makeup on Jason?" Yes, they did--he just didn't look like Jason. His skin, always so soft and smooth, was cold and hard like a rock, but his thin hair, that I often rubbed still felt the same. His dear Katie wore the beautiful black dress that she was supposed to have worn to the formal dance just before Christmas (Jason backed out of going)and she stood and talked to Jason and touched his hands and face. She went back more than once to talk to him. Jason wore the suit that he would have worn to the formal. The service was beautiful. I think Jason would have liked it. The soloist sang, "I Can Only Imagine" that is about how we can only imagine what heaven is like---Jason knows now what heaven is like. Our pastor spoke and it was very good and then his son-in-law, Brady, Jason's former youth minister, who is now senior pastor at another church spoke and it was so nice that he knew Jason and he knew some of Jason's escapades--the boy Jason was before cancer came and robbed him of bits and pieces of his life. Brady was on the youth trip when Jason was so severely sun-burned and he shared the story of Jason's ER trip and how the elderly doctor in the ER just wanted to talk at length about sunburns he had treated in the past, as Jason sat painfully and politely listening, until Brady himself had to intervene. He spoke about Jason and his amazing talents with Heely shoes (special 1 wheeled skate shoes) and how Jason would grip onto trucks and skate behind them, and about the Knoxville Mission Trips and how much going on the trips meant to Jason, especially after the cancer diagnosis last summer. He said that he had never heard anyone speak a bad word of Jason nor had he ever heard Jason speak a bad word about anyone else.

You know that we have decided to bury Jason in the Family Cemetery where, except for the last 2 years, we have always gone to the decoration 4th Sunday of July. The kids always enjoyed the "feast" we had that day as the family got together. My brother, grandparents, great-grandparents, aunts and uncles are buried there. He will rest beside my brother who died at age 15 in 1972. Jason has climbed the tree that is there in the cemetery many times and always after the decoration the kids would change into play clothes or swimming trunks and go down and play in the creek--the same creek that my cousins and I played in when we were young. It seems like a good place. I think it hurts Katie that we are taking him away from here--She told my best friend that when we take him away that it will seem like he is really gone. She came yesterday and found the ring Jason bought for her and she is wearing it now--we wanted to have it made into a necklace for her, but she wants it just as it is. His friends told me tonight that Jason had proposed to her on the beach at sunset when they went this summer. She says that she was so stupid to say No. He was getting ready to ask her again. The last day he was on the computer she told him in an IM(instant message) that she wishes that she had taken the ring when he asked.

My mother-in-law, Connie, is angry with us for taking him back to a family plot. When David talked to her Thursday night he told her that we weren't sure of plans and would be talking to the funeral director at 9AM on Friday. She assumed plans would be a certain way and called all the relatives of the "plans" and had people flying or driving in here. David's parents left their house at 9AM on Friday and we had no way of reaching them as they rode down with other relatives. My mother called and was nearly crying when I said that we might bury him in the town where we live now--my invalid father, and none of my older relatives would be able to come to the funeral. David deferred to me. At the 9AM meeting, we planned to take him to my grandmother's church (grandma died in 1965--she was the primary Sunday school teacher--and she loved for all her grandchildren to go to church with her) for visitation and service led by one of my cousins (whom I don't know) with soloists that I don't know and burial will be in the family cemetery above grandma's childhood home. It will give people up there who loved Jason a chance to say good-bye to him. My mother in law is acting very huffy--she couldn't believe that we made plans without her. She has always been very opinionated. She is not speaking to us, not even coming near us-not me, not her son, not her grandchildren, not my mother. This is the way she always deals with people she is angry with. She dragged my ill father-in-law (easily short of breath) downstairs at my house to "see a picture of Katie" which could easily have been brought upstairs and I think that she did it just to show him my messy basement and I know that it is very messy and embarrassing to me--but there have been far more important things going on the last 18 months than my keeping a perfect house. She and my father-in-law will not be going to the services and burial just an hour away from them she says. I keep saying to myself--it's okay, it's okay. It is her loss. It doesn't matter.

You all are the greatest. Thank you for praying.

Love in Christ,
Praying Mom

Worrytomuch
09-02-2005, 04:17 PM
Prayingmom,
I cannot begin to express my thoughts right now. On one hand I feel guilty for being drawn back to these message boards, day after day, to see if you've posted. I don't know you personally, I can't relate to what you've been through, and maybe its just none of my buisness.
But on the other hand, I feel as if I do know you and your family. Not just know you, but love you. I hurts me to know that there is nothing I can do to help.

Its not fair, the way God took Jason from this world. Why couldn't his last few moments of life be peaceful and beautiful? Why did he have to make what happened happen durring those last moments? Why did his last words have to be "am I going to die"???
I get so mad at God sometimes! He's blessed me in so many ways, I have no reason to be mad personally, but Jason's suffering does make me mad! Every child out there who will not have a chance, its not fair. I understand if God wants them to come back home a little sooner than the rest of us, but why do they have to suffer??? Why do they have to bleed???

But then I look at someone like you and Jason who have been through more than I could EVER imagine and how you still manage to keep your faith and know that it's all part of God's great plan.... It's people like you who keep my faith alive.
Thank you for sharing your life with me. You have given me a new appreciation for life and a new acceptance of God in my life. I accept that the road he puts us on is not always the road we choose. I believe that he doesn't give us more than we can handle. And I pray that if I ever have to travel the road that you have been down, I can be half the woman that you are. I feed off of your strength and Jason will always be a hero to me.

I hope you have a nice weekend. There is still so much to live for and when Jason looks down on you from heaven, I think he wants to see you smile!!! :)
I will be praying for you.
Take care of yourself,
Beth

PS...Don't let your Mother-in-law get to you. We all have different ways of dealing with pain. We can't all handle tragedy with the grace that you have. I hope she comes around, this is a time when family should be there for one another more than ever.

Prayingmom
09-02-2005, 04:42 PM
Both the services for Jason were beautiful, just different as the pastors at my grandmother's church didn't know Jason at all. My mother-in-law did end up coming briefly for the visitation at my grandmother's church. We found out that she had a terrible flare-up of her gout starting Thursday, so she had been in a lot of pain and it got so bad that she had to go to the doctor to get some pain relief on Monday. She was talking to us again by the time we left.

Both my dad (age 82) and David's dad look so sickly. David's dad (age 77) has been having to take high dose steriods and a chemo called methotrexate to try to lower the sedimentation rate of his blood in hopes of preparing for surgery. He is extremely short of breath and he has huge red places all over his skin--I saw his arms--where the skin is breaking down from those two medicines he is taking. These are two of the dearest men--and I am so concerned for them spiritually--even though they are very good--I am not sure where they stand with Jesus. Jason will never have to attend the funeral services of those he loves--he beat us all to heaven.

We keep his music playing in his room--the music he was playing as he lay dying. I go in there and even though I know he is in heaven, I talk to him and tell him again how much I love him and that I am sorry we didn't know how the end would come and that he would be gone so fast. I tell him that I wish that I could talk to him again. I so wish that I could have hugged him one more time when he could hug me back. I wish that he could have told his friends good-bye. I wish that he really could have seen Katie one more time. I wish that he could have told us what he wants us to do with his things. I even wish that he could have told us where he wanted to be buried, but I simply could not bring myself to talk with him about it. I miss him so much.

Huge bundles of sympathy cards arrive every day. So many people were praying for Jason. Now they are praying for us. Flowers were still arriving yesterday. People are still bringing food. I have hundreds of thank you cards to write.

Katie's mom, Carolyn, came yesterday with a card that had a check for $200. She said that several of Katie's relatives will do the same. Rather than get flowers or plants they wanted to give money that we could give to charity in Jason's name. I want to give money for rhabdomyosarcoma research and help defeat the cancer that took my son away. Some have also given money to Gideons to buy Bibles in Jason's name. David used to be a Gideon and God truly can use these Bibles in people's lives--it is not just hotels, hospitals and doctor's offices that get them. New Testaments are given to schools--even in poor countries and often this may become their textbook--the only book the family owns.

index.html
09-02-2005, 05:07 PM
PrayingMom - I only just found you and this thread today, but I want you to know how deeply your story has touched me. Thank you for sharing it publicly. I will never again look at my 12 and 15 year old boys as "difficult". I vow to cherish them more and worry about their schoolwork less.

I pray that God will comfort you as only He can.

I don't want to start a religious debate, but I truly believe that "when all things are made known to us" in Heaven, we will - despite our suffering - fall on our knees and praise God. I know that, at this moment, a loving God is probably inconceivable to you. I trust, though, that in time all of our current suffering will make sense and our God will be revealed to us a loving God who truly does work for the good.

My heart aches for you.

jimmielegs
09-02-2005, 05:56 PM
We keep his music playing in his room--the music he was playing as he lay dying. I go in there and even though I know he is in heaven, I talk to him.

You reminded me of something I had forgotten after my sister died. I remember going to her home on several occasions when no one else was there. I could feel her presence. I do believe that a person's, what?, spirit? some essense of them, stays here for awhile.

I think it's to comfort us. Oh, I suppose you could take the scientific approach to it and say, well, it's just your own body's homeostasis response to grief; you're not sleeping well or eating right, your heart is beating faster, your BP is up. You are feeling a tiny bit woozy and you think you feel a "spirit."

But, no. I truly believe an essense of this wonderful human being remains for a little while. Not forever. Just for awhile. I remember that, after my grief had softened and lessened, I returned to my sister's house. She was gone. And...it was all right.

happyelf
09-02-2005, 06:02 PM
Dear Prayingmom;
Just wanted you to know you and your family are still in my thoughts and prayers during this difficult time. My condolences to you.
Gina

Prayingmom
09-02-2005, 09:43 PM
Just wanted to thank everyone for stopping by--and jimmielegs, happyelf, and index--thank you for leaving messages.

I keep reminding myself that Jason is no longer suffering. He is with Jesus, whom he trusted as Savior when he was only 4 years old. He is not with us. I feel numb--just going through the motions-mechanically--most of the time, except when I say the words, "he is gone." and then I cry. I just don't understand. I wish I could talk to him again--but I couldn't stand for him to suffer any more.

I remember last summer when he was given his death sentence by the doctors that he said, "It's okay if I die now, Mom. It will just mean that I am in heaven a few years before you." I told him of how bitter my mother became when my 15 year old brother died in a car wreck in 1972. Jason said, "Mom, I don't won't you to be like that. I want to see you in heaven."

Dear family and friends, all of those who have prayed for Jason these many months, Jason would say those same words to each one of you-and he just wants to see you in heaven, whether it is a few days or a few years. Our time here on earth has no guarantees and the day will come when each of us must die, unless the Lord returns soon. If you don't know Jesus Christ as your Lord and Savior, please come, believe that he died for your sins, and trust him to save you, and then, like Jason, you will have a hope that never perishes, no matter what happens in this world.

God bless each one as we all grieve the loss of my sweet Jason who bore so much pain and suffering as he tried so hard to be strong (he was) and not to complain.

Prayingmom
09-03-2005, 03:25 AM
Hi Guys,
I took my son Josh (age 14) to the dermatologist yesterday and the doctor said his moles are of no concern. We got results back on the ultrasound of his liver and abdomen--it was normal they said. We are thankful for this. We just need to bring him back in a few months to have his liver enzymes checked again. Justin (age 17) asked me to stop and get pizza at Sabarro's in the mall. That was one of Jason's favorite places to get pizza. Jason liked their mushroom pizza there, but usually they don't have mushroom. A few times while he was sick, I would go down to get pizza and wait the extra time to get his favorite (and get a whole mushroom pizza) because I knew he liked it so much There was a piece of mushroom pizza yesterday and Josh wanted it. In tears, I told the lady who worked there that my son has just died and that he liked their mushroom pizza. It turns out that she had heard of Jason and is the next door neighbor of one of my Jenny's best friends. Jason also like the fruit slushes and strawberry lemonade at Thristys. I would get them as special treats for him sometimes. There is nowhere I can go without thinking of him. Justin asked me to pick him up a new belt at Hot Topic. Hot Topic is where Jason got his wide-leg black pants, boots and trench coat.

I found one of Jason's favorite shirts today. It says "What doesn't kill you will only require brief hospitalization." He loved wearing it and hearing people's reactions to it. I've been sitting upstairs holding it and crying this evening.

Thank you for caring.

meatball
09-03-2005, 06:08 AM
Prayingmom,
My heart aches for you. Reading your posts brings tears to my eyes. I pray for you and your family everyday. Love and hugs. Please take care of you too..

cookingmom
09-03-2005, 02:55 PM
Dear Prayingmom,
I can't begin to imagine your pain. I just wanted to say that reading about the strength and courage that Jason had and your amazing strength and grace is an inspiration to me. I too pray that you feel the comfort and peace that only God can give. I am praying for you and your family. God bless you. Bern

Prayingmom
09-03-2005, 07:05 PM
I feel at such a loss--such emptiness. The sun shines, the wind blows--but the world doesn't seem right anymore. I think, if I should have some life-threatening condition--why even try to save me--just let me go--so that I can be with my son. I had been making sure Jason got his medicine at the right time each day for many months. I was always checking to see if he wanted anything. I spent so much time crying, begging, pleading with God to spare Jason's life. I stayed busy updating our friends with e-mails, asking people to pray for about anything new that was going on with Jason. It is all in the past. It has been 9 days since he breathed his last breath.

I'm helping David clean out the garage this weekend--a job that hasn't been done since the summer before Jason was diagnosed with cancer. What a mess!! We took Josh and Jenny to the pool with 3 of their friends. The pool closes on Monday. Jason never got to go to this pool. Someone from church was at the pool and came up and asked how we are doing. I got in for a while. The water was chilly. Then I got out and sat in the sun, cried a bit and then just sat still and thought about Jason. Justin went to a skatepark in Ohio with friends. He won't be back til Sunday afternoon. Last night one of Justin's friends (Del) was banging on our back door at 3:00AM and Justin wasn't even here. Justin was spending the night at another boy's house. I had to take Del to Kroger's at 3:30AM to meet his father. I don't think Del knew that Jason had passed away.

Prayingmom
09-04-2005, 01:28 AM
I went to the new Super Walmart today. We had watched for months as they built it. Jason would have enjoyed it and as the opening day neared I thought that he would get to go there. It opened on August 24, while Jason lay on his bed not able to wake up. The next day Jason died.

The new store is not small and familiar like our old store. I saw a few of the old employees, but none of the ones who knew about Jason and asked about him. I didn't see any of the old cashiers who cared about Jason and cried with me. In a way it felt there the way I feel everyday now--a strange and unfamiliar world--without Jason. I wish that I could hear his dear voice again. Just to hear him say, "Mom," again would be wonderful.

One of the pastors who spoke at Jason's memorial service here in town, said that all of us here are just existing--that is how I feel right now--just existing. He said that Jason is really living for the first time--now that he is in heaven.

K2P
09-04-2005, 02:29 AM
Hello Prayingmom. I justed signed up to this site yesterday when I was asking about some concerns regarding my 11 year old daughter's 2 week old rashes. Then I read your thread this morning. My concerns seem so trivial at this point.

I read the start of your thread & went to #124 as you mentioned. The chronicle & the succeeding post brought tears in my eyes. I can't imagine the pain you & your family went through in seeing Jason go through those sufferings .

We do not know why this had to happen to any family, anybody, specially to a God-loving & God-depending Christians at that. All I can think of is the inspiration of Jason's life & how you are continuing to cope with the loss by God's grace & strength.

My dad's death when he was just 47 (and me being 14 at that time) left me with this reminder in my head whenever I needed answers to the why's of the loses in life ...Job, in the old testatment was able to say...."Lord gave, and the Lord hath taken away; blessed be the name of the Lord."

God did gift you with 19 years of Jason after 7 (?) years of waiting for him. Then He continued to bless you 2 more kids. God is indeed gracious & kind.

We just do not understand His ways & His thoughts, because indeed they are much much higher than ours.

Anyway,I did not understand myself why God took my dad that that early, leaving my mom, who was just 37 at that time, and his kids aged 14, 11, 6 & 2. My hysterical mom was even mad at my seemingly "cool" way of handling our loss, specifically citing she doesn't like Christians, who like me believes that whatever happens are according to an all knowing God & His will, & His wanting only the best for all His children.
That He has a plan for our lives. And that He is in control.

Today, that 14 year old eldest daughter (me) a mom to 3 lovely daughters, and a wife to a loving husband & hands on father. God has been good to me indeed. He will always be a good Father to all His children.

I will pray with all those other people praying for you & your family...that God continue to guide you & your family as you cope with the loss of Jason, who i am sure has been an instrument for many others to know God, know God more, depend on Him, and see Him as real God, present in the lives of His children.

take care. stay strong for your other kids, ok?

nonu
09-04-2005, 04:32 AM
Dear Praying mom
Do u remember me? the mother of a 9 year old son who did fight with the same monster you and ur son were fighting. I lost the battle on 9th July and my dearest and the only child left and went not to return. I really can understand ur pain in my heart as my heart is filled with the same pain since 9th of july. How a mother has to adjust with the life without her loving and most precious thing of life. This is the most difficult time of our life. I am not able to overcome and really not able to explain my feelings for you also. LIFE IS REALLY NOT SAME, TOTALLY CHANGED. Everywhere and every moment I feel the loss and emptiness. I am not able to stop my eyes, tears come out anytime anywhere. The endless love for my son keeps on flowing out as tears. The last 1 and 1/2 year I dont know what happened in the world around. I was only meant for my son's medicenes, treatment, different trials, prayers and begging before god to show some miracle. And now it is about two month since he breathed his last breath in my arms. I am still living without any cause. All hopes shattered and nothing could save him from that disease. I just remained helpless and watched my son going into the lap of death from his mom's arms.I know you are feeling the same pain, lonliness and emptiness. Dear mom just think that there is someone who is also passing through the same situation and praying for u and ur family. My prayers for Jason.
with lots of love and hugs to you
NONU

Prayingmom
09-04-2005, 06:11 PM
Hi everyone,
Thank you for stopping by. Thank you K2P and Nonu for the messages. It is hard to know what to say. K2P, I am glad that God has been so good to you and your family and that he has blessed so abundantly. Don't ever take those blessings for granted, as life can change in a moment--either through illness or accident--so thank God for all the wonderful times and pray every day for God's protection around your dear family.

Nonu--I'm so sorry about your son--I hate this cancer and so wish that something could be done so that other parents won't have to go through what we are going through. Though it is rare every year 250-350 children in the USA are diagnosed with rhabdomyosarcoma--so that is about one child every single day whose parents hear the same words we heard when our sons were diagnosed. Even though they have learned a lot about it--the outlook for children with stage 4 cancer is no better today than it was 30 years ago. Some think that if more funds were available for research that improvements could be made. So in my heartbreak, I do want to help raise funds for research for this type of cancer. We also plan to send his tumor samples and biopsies that were done throughout the year to a place where they may be useful to help with research. I have a form that we need to sign that will allow them to be sent to the lab doing the research. I spent a lot of time on the internet trying to learn more, hoping that somehow there would be something that would help--it just isn't there yet. So we just helplessly watched as the cancer took over and took him away and broke our hearts. It has been 10 days since he breathed his last breath--tomorrow will be a week since he was lowered into the grave where he lies beside my little brother.

Thank you for your prayers. I will pray for you, too. Time may make this easier--but I never want to forget my son. If a cure is ever found--I will still cry and wish that it could have been in time for Jason.

In Christ,
Jason's mom

Prayingmom
09-04-2005, 06:39 PM
Jason's girlfriend, Katie, sent a message to David asking him to please turn Jason's instant messager off on his computer. She said that it was hard on her and on all of Jason's friends to see that Jason was on-line on their computers and know that he is not here. So David turned it off and changed it so that it won't automatically come on. That is sad, but I can understand.

It has been 10 days since Jason passed away and one week since he was buried beside my little brother on the hill above my grandma's old house.

We went to the Chinese restaurant after church, today. Jason loved going there and the last time we went, Jason was still alive. Josh always wants to go there after Sunday church, now. There was a time when Jason was the only one of our children who loved Chinese food. Josh and Jenny were little and would cry if we went to this restaurant, unless we picked up food for them at McDonald's or Wendy's. Jason liked to get their deep-fried chicken and fried rice and 2 crabmeat rangoons and we always got fortune cookies and we would read them and laugh about the messages.

We went to our church for the first time since he died. Instead of Sunday school there was a special meeting about the new building program. We didn't know some of the people we sat with and as I walked to the sanctuary with one of the ladies, I told her, "My son died 10 days ago." When I mentioned his name, she knew about him. I think that most of the people in our huge church (over 5000 members) have at least heard his name and many have been praying for him for months. She said that her mother, an elderly lady, who also sat with us, had lost a daughter (age 13) to cancer (she didn't know what kind--said that it was in her stomach) many years ago. Her mother is hard of hearing now and didn't hear our names when we introduced ourselves at the table.

I don't want to forget Jason. I wish that our memories could always stay crisp and fresh, that we could recall exact pictures like a movie or better, that everything stayed so very clear in our minds, that we could really relive the good days, but I know that my mind isn't like that. Our memories have a way of fading and so I want to write things here that I remember about him--things we did together, things he loved, favorite things--everything that I can remember. Already I can't really hear even in my mind the sound of his laugh or his voice. I wanted so much for Justin to use the videocamera and record Jason, but all Justin wanted to do was record himself and his friends skateboarding. Whenever we wanted the videocamera the battery wasn't charged up or the charger was lost for a few days by Justin and now we can't record Jason's laugh, or his smile or his dear voice. Right now what fills my mind more than anything are memories of the last 18 months--the shock of his diagnosis, the torture of chemo, the saddness of relapse, his love for Katie, the doctor saying a year ago-there will be no cure for you, the agony of his last days, the horror of his death. This has been his life. I pray that the Lord will help me to remember the good times, the boy he was before.

Prayingmom
09-04-2005, 06:52 PM
Jason's sweet girlfriend, Katie, sent me this e-mail today along with the poem found below. It is a sweet poem, but I can't just release Jason-and not grieve. I know that dear Katie's life will go on. That is as it should be. Just as my life had to go on when my brother died. It is just different as a parent to lose a child. I will be grieving for him for the rest of my life. I know all that about he is in a better place and I wouldn't want him to have to suffer another day--but I wanted him to live. His loss is the saddest thing. My children don't cry for Jason. David seldom does either. But I am his mother. He was part of me, perhaps more than he was of them. He grew inside me and though they cut the umbilical cord somehow there still is something that bound us together, even when he got so big and independent that he didn't confide in me the way he did as a child.

From Katie ________________________________________ _____________________
I suddenly understand why people have a hard time finding the words to talk to me because as I type this I'm at a loss for words.

I know this week has been hard on each of you, please know that you are in my prayers constantly. I know no words I say will bring the comfort you long for, but I do hope that you have found a memory, a thought, a prayer that brings you some comfort.

I also wanted to thank you guys. You raised an amazing young man. A man you can be very proud of. I could never express to you in words how much he meant to me. I know this is true to so many other people as well.

While I was on a friend's website, I found a poem that I thought I would share with you. I hope you like it:

"For those I love,
For those who love me"
(a poem)

You guys are in my thoughts and prayers constantly,
Love always,
Katie

K2P
09-04-2005, 11:33 PM
Dear Prayingmom,

People pass through your thread reply & hope to comfort you in some way. In the end, you are the one comforting & encouraging others.

Thank you for your reminders dear Prayingmom. I will not take those blessings for granted. I will continually thank God for His blessings, grace & mercy for an undeserving child like me.

Yes, time does dull the pain, but we do not expect it to ever go away completely. And we would not want it to.

I pray God will continue to give you & your family strength to take each difficult day one step at a time.

Arememom
09-05-2005, 03:41 PM
I'm so sorry to hear that your son passed away. I know that has to be the worst thing that can happen to a mother. My thoughts and prayers will be with you. God Bless

happyelf
09-05-2005, 10:36 PM
Prayingmom;
I am at such a loss for words. I want to say the words that I know will comfort you-alas, I know of none. I am a mother as well, and cannot imagine the pain you bear, or how you carry on your days. K2P, very well said. Dare I say DITTO for me.
Praying for peace, comfort, hope
Gina

Prayingmom
09-06-2005, 01:48 AM
K2P, Armemom and Happy Elf,
Thank you so much for leaving messages. I like to just come here and talk. I know that there are some limits on what I can say, but sometimes I really like the idea of being anonymous. I haven't felt free to share with church friends that Jason didn't just listen to Christian music. He liked easy listening music and Japanese techno music. The song he played as he lay dying was Pure Imagination that is in Willy Wonka. It is a pretty song. It is still playing in his room.

There was one man, a deacon in our church who spoke to me at a grocery store, oh, maybe 6 months ago, and said, "Is God giving you grace?" I didn't even know how to respond--my son is dying--we are all hurting--dreading what the doctors said was inevitable--praying our hearts out--crying to God for mercy--but my son is dying--How does one answer such a question? In the end, I just said "Yes" but I don't think it was a good question. There are some (at church) who would tell me to just get over it--get on with life--that he is in a better place--and I really know that he is, but I don't know about getting over it and getting on with life. He was important to me--doesn't he deserve to be grieved. I love him--I miss him. I won't stop missing him and Thanksgiving, his birthday and Christmas are coming and he won't be here with us and so I'll get to miss him for the holidays.

I can understand people not knowing what to say. Felicia (age 13) here in our town died in August 2004. She was diagnosed with the same cancer as my Jason, just 3 months before he was diagnosed. It had spread to her lungs and the cancer didn't kill her, it was the radiation to her lungs that did--she never really recovered from the radiation. I met her dad in the clinic just after she died. I saw them at Kroger's just after Christmas. I didn't know what to say to him. I asked her little sister, "Did you have a good Christmas?" It was the wrong thing to say. How could they have had a good Christmas without Felicia? ....but I didn't know what to say--even with us facing the same fate.

Today, my son Justin had to be back at work at Arby's and then he went to visit his friend Josh. My husband David and son Josh were gone from 6:30 AM til 8:00PM on a school trip--whitewater rafting on the Ocoee River. Jenny spent the night at her friend Kristen's and then Bethany and her mom picked Jenny up to go shopping. I was alone alot. I got all our old home videos out and watched a newborn Jason on Jan. 13, 1986. He was 1 month old. I watched films of summer fun, and birthday parties, basketball games and Christmases. David filmed us playing on the beach, when Justin was about 6 months old--Jason was 2 1/2. What a dear child. How precious. Years of love and laughter. My three precious little boys and then my sweet little girl. It was bittersweet. I sobbed. Oh, how I wish Jason were back with us and that the cancer had never invaded his dear body. If we could have only known in time..... If only it were just a really bad dream and I could slap myself awake and the last 2 years had never happened. One of my friends did drop by and sat with me for a while--just to talk. About the time David got home with Josh, our friend who is an adult oncologist dropped by with her family carrying loads of groceries, Chinese carryout and even toilet paper. David said that I should have offered to pay her--but I forgot--home videos were still on and it was Christmas Jenny was only 2 and the boys were all laughing about the toy bugs with sticky feet that crawled down the wall that I had put in there stockings. And I cried some more and she cried with me.

K2P
09-06-2005, 03:45 AM
dear praying mom,

That JAson didn't only listen to all christian music didn't make him less a Christian. I myself enjoy some nice secular pop songs too. Am sure a lot of your co-memebers in church does too. The only difference is that we know what songs have real meaning whenever we need some soul feeding & reflection time.

Go ahead & just pour your heart & thoughts out here. I suppose that is one of the many good reasons this message board exists.

Somebody once told me how to differentiate Grace & Mercy. Grace is something we get from God which we do not deserve at all; while mercy is NOT getting what we truly deserve. Both are ably dispensed by God, according to His Will.

Sometimes, during tough times like what you went through and still going through, we ask God WHY? Am sure He does not take it against us for asking so. We just need to believe in our hearts that even if we question where He is coming from & why He allowed things like this to happen, He still has our best interest in mind. That God is good ALL the time.

Well of course it's easy for me to say, because I am not in your shoes. But I believe that's why God created friends & message baords :-), so that when we can't see clearly bacause of the heaviness of our hearts & minds, someone else will remind us of how it should be.

If time comes for me to be in a situation where my mind gets clouded by heart breaking concerns (I pray not! or at least not in the near future), I will need friends to remind me & re-direct my thoughts too. Thank God for people around us huh! :-)

Will be praying for you praying mom. Don't forget to continue to be a praying mom all the time, k?

Prayingmom
09-06-2005, 03:58 AM
Thanks K2P. I really appreciate you. I'll keep praying--keep praying even harder now for God's protection of the rest of us. There have been so many tragedies in our family. I consider Jason's death, even though he was ready to go (which is a huge consolation), a tragedy. I guess it is very common in human existence for times of sadness to come to just about everyone. Sometimes I wonder about things like--didn't I pray hard enough for my children before. What could I have done to keep my son safe. Was it all out of our hands from the beginning?

Even the doctors don't know what causes childhood cancers.

I'm pretty tired. I need to feed the dogs and the rabbit and go to bed.

Good night.

jimmielegs
09-06-2005, 11:26 AM
Pictures and videos and posting here and crying and remembering and wondering... all of these are healthy for you. There is no timeframe for grieving. There is no cut-off point. There is no rule book. Do what you need to do.

You may think people will forget Jason. Maybe they will. But YOU won't; you'll think about him every single day. That's a good thing; don't ever think it isn't a good thing.

The "normal" things you do - shopping, going to church, cooking, watching tv, even talking to people - those are the things that will gradually become normal again but are not totally normal now because they are all saturated with your grief. Truly, there is no grief which time does not lessen and soften. I promise you.

happyelf
09-06-2005, 06:48 PM
Dearest Prayingmom;
There is no right and wrong -You keep doing what you're doing...whatever feels right and works for you. I'm glad you feel comfortable here to pour out your grief. That's what these boards are for. And writing is cathartic--anonymous writing- especially so. I know you feel alone at times-like how can the world still be spinning, how can that be when your son is gone and your world wants to stop? That is normal. This is all so new, so very new for you. Take all the time you need. I think it's ok for your world to stop once in a while for grief. There's no set time limit. Your memories of Jason will last forever-and in some form so will your grief. As time goes on, it may manifest itself in different ways as you think of the wonderful 19 years of Jason's life, not subconsciously focusing on those good and wonderful yet not so comfortable and carefree last two.
Jason's love of other music types is not to be judged.( "Judge not lest ye be judged." ) That is no one's business-It is what made him the remarkable loving, tolerant Christian man he became. Some things were meant for you to know and no one else. IT's apiece of him you have to yourself. K2P referred to knowing what to listen to in time of need-I agree wholeheartedly with that. I too llisten to other types of music, but know where to find solace. From what you've said here, it sounds like Jason knew where he needed to be, and when he needed to be there.
I can tell you this-altho I didn't now him personally, I will remember Jason. My favorite song is Pure Imagination from my fav movie Willy Wonka...I'll think of him every time I play it. That's a nice choice, and a good song to have in his room.
I am praying for you-for comfort and some peace. You are never alone here.
Gina

Prayingmom
09-08-2005, 02:21 PM
Katie left this message for friends to pray about:
September 8th, 2005.
Today would've been our (Jason and I) 10 month anniversary. It has also been 2 weeks since he was taken from me. I have so many different emotions going on right now that it's not even possible for me to fully explain, but I must march on and take my 2 tests that await me in class today.

I miss him a little more each day.
Katie

The 8th of each month will be difficult for her. She and Jason always tried to do something special to celebrate each monthly anniversary. I think going to the concert next week in Birmingham would have been a celebration of this anniversary. I didn't know the date that was important, but now I do, so I guess I will think about that every month on the 8th.

Yesterday, I thought of Jason as we went to tutorial and I remembered how he would sometimes come down there with us to eat lunch with his friends. There were so many new and unfamiliar faces--people who never knew him. So many of the old friends have graduated. If Jason didn't come with us he would stay home alone (I would worry about him being alone so much), and sleep late. I would call him and ask what he wanted me to pick up for him and he usually wanted 2 Hardee's hot ham and cheese sandwiches since he liked them and we don't have a Hardee's in our town. We went by that Hardee's twice today. It was where he said to me, "I never even got to ride a jet ski or a 4-wheeler." He did finally get to ride the jet ski--but it wasn't as good as if he could have done it as a strong healthy boy. It is also where he asked me "Mom, how much does a house cost?........I need to save up for a downpayment on a house. ....I want to marry Katie as soon as we get out of school." I was sad thinking about him not being here as we start a new school year and that all his dreams for a life, finishing college, marrying Katie....those dreams won't come true. It was nice that he could hope and dream, but oh so sad too.

I sat alone in a little garden at church reading a book called I'll Love You Forever" about grieving for your child who has died or is disabled or has disappointed you. It is hard hearing over and over, "How are you doing?" People ask and they hug me. I am so sad. I miss him. I can laugh and talk about other things, but thoughts of Jason are always there.

Thank you for praying for us.

Traciedee
09-08-2005, 03:35 PM
Bless you and your family at the time of this horrible event.
Have faith in knowing your beautiful boy no longer has pain and is smiling and feeling better now than he ever has. In Jesus' arms he began a new life and one you will share with him someday. Our existance is brief in this world but our love and faith will carry us for an eternity to infinity and beyond.
Let yourself heal and rejoice in all the good times...you shall meet again, in God's time!

4given1
09-10-2005, 02:21 AM
Pam, I have followed your posts from the beginning, and had prayed for your son (and you) many times. I'm so sad to learn of Jason's passing. I will continue to pray for you and your family. Heaven has received a mighty Warrior.
In Christ,
Lainie

Samantha317
09-11-2005, 03:05 AM
Prayingmom,
I just wanted to tell you how much I appreciate you posting Jason's journey and allowing us to share your special son. I was so angry that the other thread had been deleted. I was so relieved to find you here. I didn't know Jason but I felt like I knew him well from the detailed events in his life. I have been following your story since Feb. of this year. I can't begin to imagine how hard this time must be for you. I have 3 boys of my own and I just don't have the words to express how my heart aches for you. You have always been an inspiration to me with your strong faith and what a fine job you did in raising Jason to become the young man that he was. I just wanted you to know I continue to pray for you and your family. May God bless you with strength and peace.

Sincerely,
Sam :angel:

Prayingmom
09-11-2005, 04:50 AM
Dear Samantha and 4given1 and Traciedee,
Thank you so much for posting here and for remembering us--remembering Jason. No more people here on earth will have the opportunity to meet Jason, except through these words. That is sad. We have the hope that all of those who prayed for him who have trusted Christ--will one day meet Jason in heaven.

I don't know if I had mentioned it here, but we found out soon after we made funeral arrangements that Jason had been dropped last spring or fall from the life insurance coverage that my husband had had for him for his entire life. It was just a small policy of $10,000--enough for a nice funeral. When he turned 18 and could no longer go to school--couldn't start college in fall of 2004 or fall of 2005, they said that coverage was dropped. At my prodding David made sure that health insurance was still there after he turned 18. Because he was considered disabled, he was eligible for both health and life insurance even though he was over 18 and not a student and the lady in the HR department promised to take care of both and David assumed that she had, but she didn't. There was no way for David to tell that he was not covered either. After 3 children there is no additional deduction from the paycheck and on the website for the insurance the health and life were not separate. David wanted to work patiently with the insurance and the HR department to work it out, hoping that they would choose to do the right thing. I only sent out a prayer request to the 2 groups I had made to ask people at church (and some of David's co-workers) to pray for Jason, so I probably didn't tell you.

The problem with life insurance appears to have been resolved. This is definitely an answer to prayer. I didn’t make this widely known and I am glad that we don't have to think about this anymore. David told me yesterday that he had received a text message about the insurance and then I cried because I wish we had never had to come to a place where we needed to use Jason’s life insurance. David only had life insurance for the children for this one purpose – for a child’s funeral which we never thought would happen to us (we had such healthy children)—and it is not a place anyone would ever want to come. David apologized for upsetting me (because I cried), but tears aren't a bad thing--I think it would be very sad if no one cried about Jason. I think that men deal with grief differently than women and especially from a mother. I think my sorrow for what happened to Jason and his death will probably last a lifetime, even though I do know that Jason is in a better place and that he is no longer suffering. I like to be reminded of Jason. Please do speak of him, and if I should cry when you talk about him, there is no need for you to apologize for making me cry—I really want you to remember him—to speak of him. Tears are good and tears are healing.

Many of those who came to Jason’s funeral wrote a memory of Jason on a notecard for us. We will save these in a special album. I have saved every prayer that everyone here has ever prayed for Jason. They are really special to me and you all are wonderful for coming, praying, caring, crying for a boy you can only meet in heaven. I still come here every day to see if anyone has left a message.

Love in Christ,
Pam

nonu
09-11-2005, 11:00 AM
Hello Pam I really appreciate you for the patience and courage. I am not able to explain what I wish to convey. It is such a hard time for us. I have no words. The pain is so intense sometimes that I find no way to bear with that. I really want to learn how to live without him. It is extremely difficult. Do you work? How do you manage to pass through these difficult days? As people say time will heal up our wounds but what I feel I have started missing him a little more with the each passing day.
with love
nonu

K2P
09-11-2005, 11:21 AM
Hello Prayingmom.

Today, the message from the pulpit was about prayers & interceding for others. Our pastor said, if out of the blues, we think about a certain person, that is not just a coincidence. that is the Holy Spirit reminding us about the person, and that He is telling us to pray for them. I thought about you among the few persons that came to mind. :-)

I heard from someone, that people get lots of emotional, psychological & spiritual support immediately after losing a loved one. But after awhile, those support slowly ebb away. it will be during those times when loneliness fills you even more. And that is indeed very sad for those who were left behind.

Understanding that, I still can't promise to be checking here for a very long time. But as of now, I really feel the compulsion to check on you. :-) I will pray that when the time comes that posted messeges & replies to you get too far & few in between, you will already be stronger by then; that you will never falter & never give up hope that God, with His loving kindlness, grace & mercy will be able to sustain you & get you through life, and give you back that smile in your heart once more.

I also pray that you will continue to trust that God is good all the time. In trusting that He knows what He is doing & why, you can accept, even if with a heavy heart, that His purpose for Jason's life on earth has been fulfilled. And that with Jason's going home earlier that us, his life story will continue to influence others, & get others to notice that one great God of his life.

thank you Prayingmon. Without a praying mom, Jason wouldn't have turned out the way he did in his short lifetime. Take care.

ksaguy
09-11-2005, 02:49 PM
This is the first time i am saw this thread.
i am shivering badly.
i pray that your son goes to heaven.
i dont know what to say.
oh my god i am crying.
sorry

Prayingmom
09-12-2005, 10:01 AM
Even near the end of Jason's life, the last night when he was awake, when he was in so much pain and he told me that he didn't think he would live, I said, "I'm still praying that God will heal you." I just couldn't bring myself to say the words, "Honey, I'm afraid that you are dying." I wish that I could have talked to him about it. Even if I had known that he would be gone in 2 days, I couldn't talk about it. Saying the words brought me to tears and then I couldn't talk. I wish that he could have said good-bye to all of us. We didn't know the end would come so soon. After he was in the coma, the day before he died, his last coherent words were, "Am I dying?" It makes me cry to think about my son, unable to open his eyes, unable to wake up, perhaps hearing us all in the room with him, in confusion wondering what was happening to him, asking that question.

K2P
09-12-2005, 10:40 AM
Prayingmom, I am sure You did the best you could in reassuring your precious child at that time. Whatever words you said, or left unsaid, were reflections of your deep love & concern for him. Even up to his last moments with you, he would sense the love you all have for him.

I did wonder too why his last words were "Am I dying?" Could it be he saw angels coming for him? i went back to read about your chronicle of his last days. He did went home to be with the Lord peacefully & not seem to be in pain then, right? That was very much unlike the 3 previous days before he went into deep sleep, when he was in much pain & discomfort.

I would like to think that he was ready to move on to the better place then, where pain & sufferings will no longer be a part of him .

I pray that God blesses you peace of mind & peace in your heart.

Prayingmom
09-12-2005, 10:57 AM
Thank you, K2P,
I keep telling myself that we did all we could do. I just had such trouble talking to him about death and I talked with him about it more than his dad did, because all David prayed for was healing. David would barely talk to me about Jason dying--instead, he insisted that we needed to have enough faith to believe that God would heal Jason.

We were supposed to go in to the oncology clinic with Jason on Friday, August 26. He died the day before, on his dad's 50th birthday, August 25. Jason wanted to talk with his doctor about changing chemo-- anything to extend his life. I thought he probably needed a blood and platelet transfusion--if they had been willing to give him one. The cause of death that the doctor listed was bleeding. I often wonder now, if we had gone in sooner--would a transfusion have extended his life a few days. He was in such pain. Would a few days more have been worth it with the kind of pain he was having? Would it have given him time to see his dear Katie that one more time that he wished for when he said these words the night he went to sleep, never to wake up "I just wish that I could see Katie one more time."

Prayingmom
09-12-2005, 11:33 AM
Sometimes I wonder if we hadn't found the clinical trial and encouraged Jason to try the anti-angiogenesis drugs if that would have made a difference in how long he lived. He was on the clinical trial for 5 weeks and he had such hopes during that time that his cancer could become manageable like high blood pressure, being held in check. He had such hope even as his pain increased and I just knew that the tumors were growing and insisted on early scans that showed tumor growth and then he had to drop off the trial.

If he had gone on the oral chemo earlier would it have made a difference?........

I just miss him so much.

Prayingmom
09-12-2005, 08:41 PM
Thank you so much for your prayers for us. Our church is providing us with so many meals. They want to do anything to help and no one could do the one thing that we wanted most of all--earthly healing for our precious son. Please pray also for Jason’s grandparents. I’m not even sure if David’s parents or my parents are Christians, but they prayed so hard for Jason and requested everyone they knew to pray for him. What will they think of God now? In my mind, everytime a loved one dies it is a call to those of us left behind to make sure that our hearts are right with God, because we all must die, and salvation through Jesus Christ is the only way that we have hope—and it is a glorious hope. In Christ, I have the hope of eternal life and that one day I will see Jesus and my Jason in heaven. I want everyone I love to be there in heaven with me.

My mother (her name is Mary) goes out on a daily basis to the little creek where the boys played when they were little and there she weeps as she remembers the happy days when little voices and children’s laughter echoed through the hills. You could stand at the top of the hill on the path going down to the creek and listen to them talking and playing on a summer day. There’s a huge rock that Jason lifted and carried out of one of her hay fields one day a few years ago where she pauses and remembers the day he moved it for her. He was so strong then. There is also a tree that he tried to cut down that still bears the marks of the ax that he swung. All these things and more bring him to her mind. She has buckets of okra that she has harvested and she can hardly bring herself to cook because Jason loved her fried okra and the weekend before he died she had fried him up a big pan of it—just the way he liked it. He ate it and enjoyed it. She is having trouble sleeping. She says that she will never get over losing Jason. When my 15 year old brother died in the car wreck, Mom fainted immediately at the sight of his lifeless body and in the days that followed she went into shock, could hold no food down and lost 30 pounds—she looked skeletal. She became so bitter after my brother died and for years has blamed anyone she could for the accident. There is absolutely no one to blame for what happened to Jason—the tumor in his foot caused no symptoms at all (how we wish it had—removing his leg or his foot would have been sad, but if it could have saved his life it would have been worth it), so that when cancer was found it had spread throughout his bone marrow making it stage 4. One mother, whose son died with the same cancer, told me many months ago that once rhabdomyosarcoma is in bone marrow that there is no chance of a cure. I still believe that God could have healed Jason, but I don’t ever want to be bitter. I am just very, very sad. I miss Jason’s physical presence. Even if he were away at college, I could talk to him on the phone and wait in eager anticipation for his return for holidays and summer vacation, to hear his laugh and the funny stories of his adventures. Nothing was ever static around Jason when he was healthy. Something was always happening.

Both David’s dad, Bob and my dad, William, are in very poor health and I’m sure the stress of losing a grandson hasn’t helped. David’s mom, Connie, has always tried to hold all emotions inside—and perhaps is doing better on the outside than my mom, but with the stress of David’s father’s illness combined with Jason’s illness and death, I know it is hard for her too. She had a painful problem with gout the week that Jason died.

David's younger sister is the process of getting a divorce and one of Jason's cousins--the one closest in age to him--one year younger than Jason was in a psychiatric hospital during spring break--I wonder if there was a relationship with these things and Jason's terminal cancer.

I was just folding clothes and came across 3 pairs of Jason's socks. Each of us have different kinds of socks making it easier for me to sort them. He really like long tube socks. Finding his socks made me remember the day he died. David helped wash Jason's dear body that day. I didn't help because from the age of 6-7 Jason had become very private and I never saw him unclothed after that age, so I wanted to respect his privacy even in death. The people from the funeral home asked for me to give them clothes for him to wear just to the funeral home. I gave them his light brown checked pajamas and one of his white mission trip t-shirts. I didn't give them any socks. They told us to bring his suit the next day when we made the final arrangements. We didn't bring socks or shoes, just the suit, shirt and tie. I thought it would be alright if he was just barefoot in his casket, because he liked going barefoot and that way they wouldn't have to push those socks up over his lifeless feet. But when I saw his socks just now, it made me cry thinking about his cold feet in the casket and no socks and then I thought of how his whole body is lying cold in the ground. I know that it is just an empty shell now and that his spirit is with God (to be absent from the body is to be present with the Lord), but you know his body was part of him. It was what we saw and how we knew him. His body grew in me. I loved his sweet little body that I fed, clothed, diapered, and bathed when he was an infant. I loved the way he grew to look like his father, tall with broad shoulders and thin hips--just like his dad. I've always thought that my husband David with his curly hair looked like Michelangelo's famous statue of David, especially when we were first married and he was so thin. Jason was the only one of our 3 boys who inherited that same physique. As I've said before, he thought he was ugly, but I thought that he was so handsome. I wish he were here alive, warm and breathing again, and not in pain, so that I could just touch his arm, his shoulder, kiss his cheek, run my fingers through his hair (it was thinned by chemo), give him a hug, get him his favorite food to eat, talk to him, even just watch him breath.

Prayingmom
09-12-2005, 09:28 PM
Just after I finished writing and thinking about all that I just wrote in the last post, the Lord put a song in my heart--"I will sing of the mercies of the Lord forever." God was merciful to give us Jason even if it was just for 19 years.

4given1
09-13-2005, 01:32 AM
Oh Prayingmom...I'm following all your posts and they are always so very touching. I don't often respond as I don't always feel I have adequate words, but please know that I am praying!

I just cried and cried when I read about the flood of memories Jason's socks brought back. I know how little belongings can bring bittersweet memories and torrents of tears. I, too, have a pair of socks that belonged to someone so very dear to me -- my sweet Papaw. I bought the soft, non-binding socks for him the Christmas before he passed, and ended up with them when I put them on after his funeral. They have a special spot in my own sock drawer now, and from time to time, I take them out momentarily and reminisce. When he was first called Home, I kept his favorite woolen hat on my dresser. He had worn it back and forth to radiation, and it was full of the beautiful white hair that he began to lose after one dose of chemo. I would often sit for long moments inhaling deeply into that hat and filling it with tears. In the 7 months since he died, it has gotten easier to bear -- but oh, how I miss him. Like you, I know that one day we will join our loved ones in Paradise, and that gives me much comfort.

Praying for you,
Lainie

happyelf
09-13-2005, 05:51 PM
Dear Pam;
You are in my thoughts and prayers daily.
Gina

Samantha317
09-13-2005, 09:10 PM
Prayingmom,
I sit here crying with you. I won't ever forget your dear son Jason. He has touched so many lives. I am sure there have been ones that didn't respond and I am sure there have been some like me that check on you frequently, but just don't know what to say. I do know Jason was an incredible person and there was a reason and still are reasons beyond our comprehension for the incredible pull to this thread. You won't ever know how many people you have brought to know Jesus in your posts. I find comfort in knowing we will get answers to all of our questions and meet Jason, there in heaven. You and your family continue to be in my thoughts and prayers.

Sincerely,
Sam

K2P
09-13-2005, 09:43 PM
[QUOTE=Prayingmom] I’m not even sure if David’s parents or my parents are Christians, but they prayed so hard for Jason and requested everyone they knew to pray for him. What will they think of God now? In my mind, everytime a loved one dies it is a call to those of us left behind to make sure that our hearts are right with God, because we all must die, and salvation through Jesus Christ is the only way that we have hope—and it is a glorious hope. In Christ, I have the hope of eternal life and that one day I will see Jesus and my Jason in heaven. I want everyone I love to be there in heaven with me.

Dearest Prayinngmom, God will bless your heart even more for being concerned about your parents' & your in-laws' salvation in the midst of your grief.

I agree wholeheartedly with what 4given1 & Samantha 317 wrote. And I am sure there are a lot of us who check on your post on a daily basis but does not reply anymore for lack of comforting words to offer. We know anything we say will be inadequate. I check on your thread twice or thrice a day since i figure our time zones are different, me being in southeast asia.

This morning, it's 8:40 am now as I type, my short quiet time with God led me to the verse John 14:27 where Jesus said: "Peace I leave with you; my peace I give you...."

Like a lot of people out there, I will continue to pray for God's peace in your hearts & minds...for you, David & your kids. I hope David is holding out well. SOmetimes, its the guys who are worse hit than us ladies who can release our grief through words & actions & emotions. Your boys....& your daughter...they might be trying to cope in their own ways too. I hope they are doing the best they can in this sad situation.

do take care of yourself

karol

Prayingmom
09-14-2005, 05:18 AM
When I was growing up I thought my mommy was the best mommy in the whole world and because of her I wanted to be a mommy when I grew up. All through my childhood as my friends and I played house with our dolls and made our brothers be the daddies (we just made them go off to work--because that's what our dads did). I dreamed of one day having children and how wonderful it would be. At one time I wanted 12 children--enough for a football team and then it was 9--enough for a baseball team, later it was 6--enough for a basketball team. When my 15 year old brother died in a car wreck when I was 16, I became an only child. Mom and Dad had always only wanted to have the number of children they could send to college--two. When I was 18 my mom had another baby, my little brother Brian. Mom was 38 then and Dad was 50. As I got older I realized that part of that dream would be marrying the man I love and then hoping for children. Because of my brother's death, I wanted to have more than 2 children so that if anything happened to one child, a child would not be left as an only child the way I was. God blessed me so much when I met married David--he is truly wonderful. He is so patient and kind. Even in the face of car accidents--both mine, his, and Jason's and Justin's--David remained calm--so unlike my dad. Why I've even backed into the garage door 5 times (it has been a few years since I last did that). David response the last time was a calm, "If you do this again I don't think that I will be able to fix the garage door." God didn't bless us with children right away. I worked in the two year old nursery at church for years and as time went on and we still had no children, it was harder and harder to work in the nursery. People just keep telling us to just relax, pray, trust God, but then when I was 26-27 and we had been married 3-4 years--my periods just stopped and it wasn't because of a pregnancy. I started going to an infertility specialist who immediately discovered that I had too much prolactin preventing ovulation--so I had to take Parlodel to reduce it and still it was a long time before I became pregnant. Finally, in tears, after finding a verse in the Old Testament about unfruitfulness and still praising God, I told God that even if He didn't bless us with children I would still praise Him. I was pregnant the next month. Then I found a verse, also in the Old Testament, that then applied to me, "He has made the barren woman to be a joyful mother of children." We were so happy when Jason was born. It seemed just too good to be true. I felt so unworthy of such a miracle--a precious child--my own baby to hold and love--after so many years of waiting--6 and 1/2 years. He was due on Christmas day 1985, but he was born 9 days early--12/16/85. Everything wasn't just as I had imagined it--it wasn't all strolls in the park--babies are a lot of work, but they are so worth it and I was so happy, so very thankful for my sweet baby boy.

I had to take Parlodel with each pregnancy, but not for as long each time. Justin was born 2 years later and then Josh, 3 years after Justin. Then around Memorial Day 1994, I had a miscarriage--I was only about 3 months along. I was soon expecting Jenny who is 5 years younger than Josh. She was born in 1995 when I was almost 40. I would have loved to have another baby. David and I had thought that a quiverful would be five, but I thought after forty--with my difficulty getting pregnant--that we shouldn't try again and that 4 children was just the right number for us. The six of us made a nice family.

Sometimes I feel so bad about my thought--if anything happens to one. It almost seems like a self-fulfilling prophecy now, but we never dreamed anything would really happen to one of the children--they were always so healthy. We hardly ever had to take any of them to the doctor for anything except well child visits and a few ear infections. Jason was the healthiest of them all, it seemed--until he got sick.

It has been 20 days since Jason left us. The number of cards we receive is dwindling each day. I think that we are hurting more as his absence sinks in. The children don't talk about Jason. I talked with Jenny today about how she is feeling and she just looked over at the group picture I had made of the children together on June 29 and sadly said, "Jason." Saying his name brings tears to my eyes. I haven't sent thank you cards out yet--for the flowers and plants, memorial gifts given to different charities--Gideons was one we suggested and rhabdomyosarcoma research, all the food, the many churches (so many more than just ours).

David has a book that he wants to read to all of us that people have told him is very good about a man who was dead and they brought him back after 90 minutes. The book is called "Ninety minutes in heaven" I think and is about what he experienced in those 90 minutes. It is hard to get everyone together. Justin stays away alot--skateboarding and hanging out with friends. It is hard to say which one of the children is more affected by Jason's death. We all loved him so much. Justin was the closest in age--but there was such friction between them. He was the first one to voice concern over Jason's health--asked his granny to please talk to Jason about the symptoms. Jason hadn't told me that anything was wrong. They all looked up to their big brother--and Jason was so much like David in everyway--from temperment, his sensitivity, his compassion, to his appearance, his wisdom, his knowledge, his insight. I asked David how he is doing on this second day back to work. He said that he had to leave the restraurant where they ate today. He just sat outside and cried. Jason used to work with his dad in the Information Systems department at the hospital. Right now it seems like we just miss him more with each passing day. 20 days since we last saw him breathe--20 days.

As I think about it I have become more and more concerned about my mother. When my brother died I feel that it really almost killed my mother. She was only 36 then. She is 70 now. She didn't look good when I saw her the day Jason was buried. She says she hasn't been able to sleep well and she spends her days crying. She doesn't drive. She is dad's caregiver after his heartattack and stroke and he isn' t very nice to her sometimes. She is alone a lot with no one to talk to and I live 300 miles away. David wants to go up to a couple of his great aunts birthday parties this weekend and I could go too and see my parents, maybe go over to where Jason is buried, perhaps even order at headstone, but Justin won't go with us because there is a skateboard competition here and he thinks he could win it. It is so hard to think about leaving Justin here alone.

K2P
09-14-2005, 07:32 AM
It's a difficult situation you are in, torn between comforting your mom and not leaving so as to stay with Justin. It will be a lot easier if he just go with the family. But for all it's worth, i think Justin just wants to feel some sort of normalcy in his world too. It could be a coping mechanism. I don't really know.

It's never easy being a mom. But then you do not stop being a daughter once you are a mom yourself.

My heart goes out to you & your family memebers Prayingmom. I can't fathom the hurt you all are feeling. But it's good that David share with you how he really is. You will need each others' strength & encouragement to make it through this storm. Your kids will expect their parent to be there for them. YOu might not be individually strong enough to handle this on your own. But with each other's support, and drawing strength from a great big God, by His grace, you will surely make it through.

God will never give you something you can't handle with His help, right? I believe that's one of His promises. Please claim it. :angel:

Samantha317
09-15-2005, 12:45 AM
Prayingmom,
I just stopped by to let you know I am thinking of you. I continue to pray for you and your family during this time of your loss.

Sincerely,
Sam

Prayingmom
09-17-2005, 03:43 AM
Thank you for stopping by, for praying for us and for caring. I just have a hard time writing now, because I feel that I have nothing to offer anyone. I guess we are doing okay. You know in many ways we have been in mourning since the day Jason was diagnosed in 2/04. The first few days after he passed away, my mind just could not it in--that Jason is really gone. I couldn't get it to fit in my mind at all. I couldn't sleep--. Now I just miss him so much. There is a huge emptiness that only he could fill. I don't cry all the time, but nothing really seems right anymore. I cry more when I am alone, but that isn't often. Josh, Justin and Jenny keep me busy. When I see things that remind me of Jason--places he liked to go, restaurants where he liked to eat or when I go somewhere and remember that he was alive the last time I went there--I cry. Justin left his teen website up accidently and I got on it yesterday and found Julie's site from there. (Jason dated her before he got sick and the first summer afterwards). She has a picture of Jason on her site from the school's formal in 12/03. It was 2 months before we learned the devastating news of his cancer. He was sick then, but we didn't know it. What a smile was on his face, a full head of toussled hair--he was so happy in this picture with many of his friends. Most of the time we keep his music playing in his room and I go there and cry at least once a day. I keep his favorite shirt upstairs and sit and hold it and cry. I hold the last pair of pants that he wore--I haven't washed those yet and cry. The children don't like for me to cry. In the car, Josh plays a CD that Jason made with some favorite music. After Josh got out of the car, Jenny turned the music off--she said that it makes her sad. I thought that David wasn't crying -- but on the 2nd day back to work he said he had to leave the restaurant where he and his co-workers were eating and go outside to cry. We don't see the kids crying.

The COO at the Medical Center where David works asked David to meet with him for 10 minutes, but the meeting lasted more than 45 minutes. David thought that he probably had a book to give him--last time they had such a meeting, while Jason was sick, he'd given him The Purpose Driven Life. Instead he talked, prayed and cried with David. He said that we just don't know the effect that Jason's life has had on others. He said that people have been saved because of Jason. He told David that the administrative team at the hospital gives to the American Heart Association each year. It is their chosen charity. They always give enough that 1 person (usually the one in charge of organizing the giving) is awarded a cruise. This year they are giving all the money in memory of Jason and they are giving enough that David and I can both go on this cruise. Well, that made me cry too--because I didn't want to reap any benefits from Jason's death---all I wanted was for him to get well and live--only a miracle. I had the number changed on Jason's phone today--his friends wouldn't want us to call from that number (they had David turn off Jason's Instant Messenger--it hurt too much for them to always see it up and if Josh got on the computer the IM would say "Jason has returned from away") Jason's phone is Joshua's now--and it hurts to think that Joshua got a phone now because his brother died. Of course, Joshua is glad to have a phone. Justin doesn't have to buy an X-box now--he plays Jason's. Justin is careless with things--Jason didn't like that--so we won't let him use the X-Box if he doesn't take good care of it. Justin, soon to be 18, sleeps with his TV on and often his overhead light on with his door locked -- David thinks that he is afraid. Nobody sleeps downstairs on the $1000 mattress we got for Jason--getting it was worth every penny as it eased his back pain for the short time he had it. I no longer have to rush home to check on Jason, or make sure he gets his medicine. I have more freedom now--but I would gladly have given my life to take care of him. I never wanted to be free of Jason's presence. Certainly, our faith helps, believing that Jason is in a better place and no longer suffering--but the pain of his loss is immense. I know this hurt will never go away.

Always missing Jason.

Michelle1975
09-17-2005, 03:49 AM
I am very sorry!! You and your family are in my prayers! Rest easy he is a far better place!

happyelf
09-17-2005, 01:09 PM
Dear PrayingMom;
Please continue to stop by and share how you and your family are doing. You have so MUCH to offer...even tho the ppl on these boards have never *met*, we feel a friendship has developed. Since Jasons passing, the same ppl, and many new who don't leave msgs, stop by here to see how you are-if you've left a little note msg abt how YOU and your family are doing. It doesn't matter if it's the same thing each time. Just like a *regular* friendship, we care and come by "just because"--not always having a particular reason. Just seeing that friend's note or how their weekend was makes the day a little better. Writing is also very cathartic.
Many times I think it is we, the *anonymous* friends on the boards, who have nothing to offer-just the same words sympathy and hope. Hopefully knowing you can come here to vent or cry or type your little heart out is of some comfort.
Thinking of you and praying for you daily,
Gina

Prayingmom
09-22-2005, 10:54 AM
I just thought I would stop by and let you know how things are. Yesterday was the day we drive down to the tutorial for school. Josh's biology has been so hard--the new teacher is assigning too much work--really. It's twice as much work as teachers assigned in the same book in previous years. I hope it will change soon.

As I sat talking to some other moms, I wanted to say something about one of my other boys and Jason's name came out instead--if you have more than one child--but especially if you have several sometimes you go through the whole list before the right name comes out. Anyway, I said, "I'm sorry, I just can't stop saying his name," and then I cried and they all consoled me and said that I'm just where I need to be and that it is okay if I say his name like that.

Just moments ago on the computer, Katie sent me a picture of Jason I had never seen before. Jason's friend Patrick sent it to her. It is undated and I'm not even sure where it is, but it is obviously a year or two before he got sick. (If only we could have known then--or anytime--- when we could have stopped the cancer before it spread). It is a picture of Tamara, Josh W., Aaron, Jason, Justin, and Pat. They are holding Justin over their shoulders and they all have big smiles on their faces. So happy--times were good. That was then..........and now Jason is gone.

Yesterday, on the way back from the tutorial we (Justin, Jenny and I) stopped at the Hardee's where Jason liked to get hot ham and cheese sandwiches. As we sat there I remembered the day, not too long ago, I guess it was last May, when Jason and I sat at the same drive-through waiting for hot ham and cheese sandwiches. There was a fancy car getting gas at the gas station and I asked Jason, "Have you ever ridden in a fancy car like that?"

He said, "I don't even know anyone who owns a car that nice." Then, quietly he said, "I never even got to ride on a four wheeler or a jet ski and I probably won't either." A little later while we waited for our food, Jason asked me about how much a down payment on a house would be. I gave him a figure and he said, "I need to start saving money for a down payment on a house. I want to marry Katie as soon as we get out of school." Sad memories -- we wanted so much for him to live and for all his dreams to come true.

Justin and I both ordered hot ham and cheese sandwiches. While we were waiting I told him about that conversation with Jason--as I tried to hold back my tears. I asked Justin if he thinks about Jason and he said, "Yeah. Every day."

I started reading the book, "Ninety Minutes in Heaven." It is a true story about a man who was in a very bad car wreck and was killed--he was declared dead when help arrived. The Jaws of Life were needed to get him out and they weren't there and he was dead. The workers attended to others who were hurt and tried to get the road clear. 45 minutes later he was declared dead again-- A Baptist minister that he'd been at a conference with was stuck in the traffic caused by the wreck and walked the half mile to the scene of the accident to see if there was anyone he needed to pray with. No one else was badly hurt, but the minister felt led to pray for the man they had declared dead and the officer let him go to him. He climbed through the trunk of the car and got to where he could hold the man's hand. He prayed for the man and sang hymns for 45 minutes. The man came back to the sound of "What a Friend We Have in Jesus". During those 90 minutes he was in heaven and he remembers the sights and sounds to this day and it has been 14 years now. I haven't read the whole book--just the first two chapters about him going to heaven. He was hurt so badly--has never walked normally since then--the rest of the book will probably be about how he has lived since the accident. His injuries seem so bad that it almost seems as though he would have been better off in heaven. It is an amazing story.

Heaven sounds wonderful. From what the man said in the book--everyone is happy there-- everyone is loved there --there is no pain ---there is no sorrow --worries of the world are gone --it's a huge reunion --people were waiting to greet him --there is endless praise to God.

People keep saying that we are an inspiration--I don't know about that. We lived each day, watching him suffer, be strong and brave for us, sparing us his pain as much as possible. We did the only things we could. We couldn't stop time though we wished we could, and the days sped quickly by. We just wanted prayer, wanted everyone to pray for Jason and believed that God could heal Jason here on earth. We kept praying that for him, but knew that ultimately it was in God's hands. David's boss has invited him to come anytime and speak to employees about Jason and setting priorities. He said that people in the company need that more than anything.

Some say we really should go for counseling. The kids are just keeping it all pent up--if they cry it is in private. One other mom whose daughter died in a car wreck said that her son didn't deal with his sister's death for 5 years--not until he was 18 and then he was diagnosed with the same cancer as Jason and she lost him to cancer in summer 2004--leaving her with no living children. So I don't know if counseling is necessary--I get a lot out of sharing here and sharing with family and friends and feel that grieving just takes time, and can't be rushed, and realize that we will never "get over" Jason's death until we see him in heaven. We will remember and grieve for years--every Christmas and birthday. Going to special places he loved like the beach will bring memories back and I can picture myself walking along the beach thinking of happy times and Jason and crying for him....and I'm crying now just thinking about doing that.

This is from a site I have for family and friends:
Please also--cherish your family. Spend time with them. Take pictures. Hug your children tight and let them know that you love them. Don't stress over the small things. Life is too short.

My cousin e-mailed me this week and said that she is going to talk to her teenage daughter and make things right with her because of Jason.

katkat
09-22-2005, 11:18 AM
Praying mom, of course you other children and family remember Jason. Of course they think of him each day as you and your husband do. Sometimes,,,,,,most of the time nothing is said because it seems that its all been said so many times before and the words are words that each carry inside, and you all know them to be true. Words of pain and heartache, of missing him and wanting him back. Yes, wanting him back even though you know that he is so much better off where he is, in that place where there is no more pain, suffering; only contentment.
This last weekend our son and daughter in law came by, they are the ones that lost the twins. Its the first time we visited without mentioning the babies, but Bryan and Ryan was on my mind. What else was there to say. Its not fair? Well yes it isn't, so unfair. How does God choose who to take and who to leave behind? Who can keep their babies or children and which ones should he take home early?
There is no way any one can comfort you with mere words but just try to be there for you in this awful time of trying to get used to Jason not being there. Try to find some sort of comfort in that you did have him during a time in which to know him better instead of losing him all at once like in a car accident. You had time to see that he was a strong person,,,,remember how he tried to hide the pain from you for the most part? Comfort yourself in knowing that he has seen Gods face.
hugs
Kat

Prayingmom
09-25-2005, 05:14 AM
Katie told me a few days ago in an IM that the Coldplay concert that she and Jason had planned to go to last weekend had been cancelled. The lead singer had the flu. She said a lot of her other friends were going too, but that it just seemed right that it was cancelled--like God was saying, "If Katie and Jason can't go together to this cancer, then there just won't be a concert." She also said that she has been selected go on a special trip to England--as part of her schooling--in January. There are so few chosen to go on this trip and she and one of her friends were picked. So she is excited about that.

One of Jason's best friends came by yesterday. He brought each member of our family a special rubber wristband they had made up it says WLJA (12/16/85-8/25/05). The WLJA means "We love Jason always." We talked for a while. He said that the ring Jason bought for Katie was to have been a sweetheart ring. He said that he thinks that Jason knew that the cancer was taking over more and more. I'm sure that Jason didn't tell us everything.

On June 29, I had pictures made of the children. Jason had asked me what I wanted for Mother's Day and I just said, "Honey, all I want is pictures," but then he was too sick on Mother's Day, so it was June 29. There were group pictures and individuals. I had them made at 2 studios and spent $700 and didn't tell David that I had spent such a fortune. In fact I charged part on one Visa card and the other on my check card so that it wouldn't all come out at once. I was afraid that these would be my last pictures of Jason and they are except for the few snapshots we have and now I will never regret having spent the money. Of course, I would rather have him, alive and well, than all these pictures, but the pictures and the memories are what we have left now. The huge matted and framed group picture looked more like a painting and my children's teeth were glowing white. I called a few weeks ago and asked them to fix it---and they have--I picked up the new picture today and it is more acceptable.

Also in the month of September which is Childhood Cancer Awareness month, Chili's Restaurants across the nation are raising funds for children's cancer research--specifically St. Jude's---but you know it is a research hospital and many different types of childhood cancer are researched there including Jason's kind of cancer--rhabdomyosarcoma. Jason wasn't treated at that hospital, but I think it is a wonderful hospital, a worthy cause and I want to support research that might lead to a cure. They have coloring sheets -- with a chili to color and then for $1.00 or more donation the coloring sheet is placed in the restaurant. Also on September 26--100% of their profits at Chili's will go to St. Judes. We are planning on going to eat out at Chili's that night. I also went ahead and bought 12 coloring sheets for our family to color--I thought Justin, Josh, Jenny and I could each color 3 and then I could take them to three different Chil's restaurants, but in the end it has been only Jenny and I who colored and I took 8 sheets to 2 restaurants and also Jason's picture. Just thought I would let you know about it if you wanted to support this cause. If you colored a chili you could even put--In memory of Jason -- the years of his life and rhabdomyosarcoma (so few have heard of this type of cancer--yet almost everyday in America a child is diagnosed with it).

Church is tomorrow. I'm not sure if I will go. We have always been so regular in church yet I missed last Sunday. Because I just don't sleep well, I was lazy and just slept in. Later it seemed like it was a good thing because when Jenny woke up she had a fever, headache, sore throat and Josh was still pretty sick from his cold, so it was better that we stayed home so that we didn't spread these germs around further. There's a lot of these late summer colds/flu/or whatever it is going around. Jenny got even sicker and I guess I didn't tell you all because I haven't been on here lately. On Monday her temperature was 101.7 and she still had a slight headache, sore throat, stomach hurting, and then she said her right ear was hurting and her ear was ringing--so I took her in to the doctor and they looked at her, but didn't give her antibiotic (said her ear didn't look infected) like they gave Josh for his severe sore throat the week before. So now a week later she is almost better, but still has a lingering hacking cough that sometimes keeps her from sleeping.

This time I may not go to church because my knee is so sore. I stumble and fell in the garage when I was carrying a package in. My left knee really hurts when I climb up and down stairs and there are a lot of stairs at church. There is an elevator too. I think that I will take some Motrin and go to bed now.

Almost every day someone tells me that they are still praying for us. Tonight someone brought us a meal and then sat and talked awhile and I cried. I miss him so much. It's is just like I knew it would be when he told me--"Mom, it's okay if I go to heaven now. It will just mean that I'm in heaven a few years before you." --------and I cried then----last summer (2004)------"but honey, we'll miss you so much."

He tried to hang on as long as he could---especially after he met Katie and she became his girlfriend---but all the while this awful cancer grew and grew---taking him away from us day by day. He didn't want to cause us pain, but he had no control over this and then, even though he had battled the cancer for so long--18 months--it seemed like he was just gone so quickly and because he went into a coma and couldn't talk to us--we couldn't really tell him good-bye the way we wish we could have. Jason has been gone now for a month. I guess I'll always be counting the weeks and months. On Christmas day he will have been gone 4 months and then on my 50th birthday January 24--it will be 5 months since he breathed his last. He's gone--and I miss him so much. I know that he is in a better place, but that doesn't diminish my missing him every day.

katkat
09-25-2005, 07:49 AM
I know, I know..........I wished I could send you a hug or two, hold your hand and help comfort somehow.

K2P
09-26-2005, 09:20 PM
Dear Prayingmom,

My family spent the night up in the mountains last weekend. We brought balloons for each of us to write our prayers & release them up in the air...a symbol of lifting our prayers to God in Heaven which my kids aged 11, 9 & 5 can easily understand. My balloon was full of thanksgiving & petitons. You were included in my prayers. I think i will be remembering you in my prayers for a long time.

i do not check this site everyday anymore. I noticed you do not write as often too. But even if everything gets quiet...be assured that a lot of people will be rememebering you & your family in their prayers too. Your family has touched so many lives.

God bless your family Prayingmom. God will heal your family in His time. Take care & keep on praying.

karol

Prayingmom
09-27-2005, 07:04 AM
Dear Friends,
K2P and Katkat and others who stop by,
Thank you so much for remembering us--especially for remembering Jason. It has now been one month since he left us. For me there is concernthat others will just forget him as they go on with their busy lives. I won't get to proudly introduce him to others and say this is my oldest son and list his recent accomplishments. It may be hard on all of us when people ask--how many children do you have or ask the children about how many brothers they have. There will always be that choice--will we/they leave him out as time goes by because they grow tired of saying "my oldest brother died of cancer." and hearing "Oh, I'm so sorry." I hope they don't choose to not mention him.

I thought about not going to church Sunday morning. I had fallen in the garage and hurt my knee. It is still hurting even today. I really knew that I needed to go though because Joshua had spent the night with a friend and I needed to pick him up since, even though David was at Sunday school, he had to leave early to go downtown and referee two soccer games in the afternoon. The Sunday school lesson centered on prayer and the teacher talked about different aspects of prayer--like praise, thankfulness, confession, petition, intercession. I probably talk too much, but I do usually answer some questions. Toward the end of the lesson he asked us what we are thankful for--not many spoke up, people were slow in answering--some said family...friends...jobs... home... everything. I sat there thinking about what has happened and finally said..."It is kind of sad...but I am really thankful that Jason didn't have to suffer any longer the way he suffered those last few days. ...and I'm thankful for all of you and your prayers and all you've done while Jason was sick." Then he said that we have been an inspiration to others and a witness to others through it all.

On my way to get a seat in the church service, someone from an old Sunday school class stopped me in the hall, to ask how we were--and you know the conversation turned to Jason. I'm sorry--it just can't be helped, because when people ask how we are -- well you know they are really asking how we are dealing with the loss of what is most precious to any of us--. He said that he didn't know whether to say anything or not and I said, "You know, Sam, it would be much worse if you just walked by, and just ignored me." So that, of course, led to more conversation and another brotherly hug.

In Sunday morning church, our dear pastor did mention that his kidney transplant is coming up toward the end of October. The kidney disease he has can be hereditary. He received a kidney from his brother about 10 years ago and 10 years is about what a transplant lasts some have said. This time, reluctantly on his part, his daughter is quite willing to give him one of her kidneys--she is a perfect match. How we have prayed for healing here, too and still do, but now we need to be praying that the transplant goes well for both the pastor and his daughter donating her kidney. This is happening just as our church is about to begin another building program. The Whites sang the special song before the service started. Sharon White, Ricky Skaggs' wife, used to be Jenny's first grade Sunday school teacher and we were in a Sunday school class with Ricky Skaggs at that time. Our boys were friends were their son when they were all younger. Back then, I remember when Ricky prayed for you, somehow it was just something extra special and I had so wanted to talk to him and ask him to pray for Jason or even to come to our house and pray for Jason, not that his prayers had any more chance of being answered, but it was in my heart. Ricky is always on the road and we haven't seen their family in what seems like forever. David did buy tickets for us and we went to see their special "A Skaggs Family Christmas" at the Ryman in December and it was really special. We've lived here 10 years and that's the first musical thing I've been to--everything is so expensive. Well, after the service on Sunday I went down to say Hi to them--a lot of people did. Ricky hugged me and I knew from the look in his eyes that he had known about Jason and felt our pain and sorrow. I told Sharon that I had so wanted to talk to them and ask them to pray and she said, "We were praying for him." I guess our old Sunday school teachers had told them. Somehow it is a comfort to know that they were praying for our little boy.

Justin, Joshua, Jenny and I went to church on Sunday night. It has been awhile since we've been at night, with Jason being so sick and then the funeral and the tiredness I feel now. I often just sleep right through it. We used to be so regular on Sunday nights because my husband was the commander (leader) of the AWANA club in our church. AWANA is a non-denominational Bible memory club for children from the age of 2 or 3 up to 12th grade--though the emphasis is mostly on K-3 which is the most active part of the club. It seems harder to get older children to memorize Scripture though they certainly need it, as I see having verses memorized as one of the best ways to resist temptation and the teen years are full of serious choices and temptation. Participation in AWANA drops off significantly after elementary school, even though a small college scholarship is guaranteed to any who finish the last 6 years. Jason was a helper in AWANA. It was an area of ministry for him and I think that he enjoyed it. He kept records for one age group. Then 3-4 years ago our church decided to discontinue AWANA even though it was a successful program. We miss it. Then Jason got sick and everything changed anyway. After Jason became sick, I don't think that David could have kept on being commander.

Anyway, we went to church on Sunday night. David stayed home to rest his weary knees because he'd refereed two adult women's soccer games that afternoon to help out a friend. Sunday night service is more of a youth service now with lots of music--pretty loud--drums--electric guitar--acoustic guitar--a young song leader and young (and very good) preacher. The young preacher who normally speaks wasn't there Sunday night, so one of the high school youth ministers spoke. In fact, Jeremy and his wife Beth are both youth ministers and knew Jason. Jeremy came to me during the opening prayer time to say that he would speak about Jason at the end of his sermon and that Jason's picture would be up on the screen. He spoke first about his own newborn son who is only a few weeks old--about pacing the floor with him, holding him, loving his tiny baby and understanding a bit better about God's love for him and how God wants each of us to climb up in his arms, be held and just rest and be comforted, as his little son went to sleep in his arms as he rocked him in a rocking chair. God is our Abba, Father--our Daddy. As Jeremy spoke about his little boy, his firstborn child, I sat and remembered my little boy, my firstborn child, my Jason, and his first days of life and the love we felt from the beginning and I cried as I remembered. When I got home, David said that if I had called to tell him that Jeremy was going to mention Jason and that he would have come on up, but I would've had to walk out of the service for a moment to call and don't usually do that. In fact, I didn't even think of it.

Jeremy spoke from John 2, about Jesus' first miracle--water to wine at the wedding in Cana. It was a good sermon with an object lesson that Jeremy remembered from when he was a little kid in VBS and the teacher secretly put Kool-Aid in water and turned plain water into Kool-Aid. It was pretty neat listening to this story from a youth minister's unique perspective. I don't really remember how he moved on to talk about Jason. He said that Jason is a hero to him. He spoke about how Jason's faith increased as his body weakened. I've thought of that a lot--it seemed like Jason just became sweeter and sweeter as his days here came to a close. Jeremy and Beth were two of the first people who came to our house the day that Jason died. Jason's dear body was still laying on his bed when they came in the room and prayed with us. Of course, I was crying that day. Above Jason's bed I had taped this verse, "I cried to you for help, O Lord my God, and you healed me...." (it goes on to say "...and you kept me from the grave.") Psalm 30:2. How we had prayed for earthly healing. When Jeremy saw the verse up there that day, he just thought that it was so sad, but Jason really was healed that very day. Jason no longer has cancer. The picture that Jeremy put up on the screen was one of when Jason was completely bald. It was taken by a photographer from a local newspaper last summer when we first learned that he had relapsed. It was on the screen for a long time. Jeremy had already told Justin and I that he would speak about Jason, but I didn't tell Josh and Jenny. I should have told them--especially Jenny. She had tears in her eyes--remembering her strong, brave, kind, big brother. I so seldom have seen her cry for him. Yet I do know that if God grants her a long life, she has many years to remember him and shed tears as I have since my brother died when I was 16. I thanked Jeremy for mentioning Jason and he said that he was honored to be able to.

So that was my Sunday--you see-- I listened to the lesson, I sang the songs, I listened to the pastor --and I remembered Jason throughout the day. And I really don't mind talking about him--remembering--even when the remembering brings tears--because it is so much better than not thinking of him. I have tried to make it so clear to everyone we know that we are open, we want to hear Jason's name mentioned and if any good can come of that--perhaps in a way it will make his life and death seem to make some sense.

happyelf
09-27-2005, 10:44 AM
Dear Prayingmom;
I have stopped by and read your posts, but have not posted each time. I feel I'm being repetitive, but I'll take that risk and say I pray for you, your family and Jason daily. He is an angel now looking down upon you, and is free from the pain he knew too well.

Please please take care of yourself...By the time on your posts, it seems you are up at all hours of the night/morning. I know the "alone" time and nights are very difficult and resting is not easy, but try to get some sleep.

I enjoy your posts...I think of you daily and it's nice to hear how you are getting along.

My best to you.

K2P
09-27-2005, 01:52 PM
Dear Prayingmom,

Reading your last post made me think of a hauntingly beautiful local song which is entitled Let the Pain Remain.

It is a secular song, so it's not totally "correct". :rolleyes: But basically, it speaks of what you were saying about not letting go of Jason's memories...

It was intended as a lovers' love song. But who is to say that love songs are not applicable for other family memebers? ;)

I also attached the website below, where you can listen to the song if you are interested. It's not the best version for me. I personally prefer the original artist, Basil Valdez, or the remake by Lea Salonga. but i can't find the MP3 for either version.

Anyway, I used to cry listening to this song myself many years back. I find remembering & crying to be therapeutic ways to cope with a loss.

So I would like to share it with you...


Let the Pain Remain
by SIDE A Band

love comes, love goes
but a sudden feeling never lets me be
somehow, i know, quite a part of me isn't changed
since you've been gone

like a sturdy tree thats seen a thousand seasons
i've to shed my leaves in winter
and grow them back in spring
to welcome life again
to welcome you

so goes, my life
still beleive in dreams of having you around
too bad, memories feed the mind and not the heart
where i want you to be,
so i ask myself what you have left behind for me
to go on each day to live as if
i have you once again
what else is there that's real
but all the pain that i feel

chorus:
so let the pain remain
forever in my heart
for every throb it brings
is one more moment spent with you,
i let the pain, bring on the rain
if that's the only way
if there's no other way
to be with you again

too bad memories, feed the mind and not the heart
where i want you to be
so i ask myself what you have left behind for me
to go on each day
to live as if i have you once again
what else is there that's real
but all the pain that i feel


so let the pain remain
forever in my heart
for every throb it brings
is one more moment spent with you,
i let the pain, bring on the rain
if that's the only way
if there's no other way
to be with you again




http://www.*********.com/musicals/donz12/letthepainremain.html

mrzshorty
09-27-2005, 03:35 PM
Dear Prayingmom,

I have read your posts and I truely feel for you, I have not lost a child but I have two children and I could not imagine the pain you feel. I will remember your story and your son. I have a question/favor to ask of you and the posters that come here. I feel that you and the posters all have such wonderful faith and I would like your faith to help my situation. My cousin 6 mo old baby is going in for heart surgery and I too would like to have a prayer for him. His name is Jason Cummins, Jr. I am scared for my cousin as to there are risks and I want to do everything I can to help, including asking god for help. I do not mean to pose on your thread but you guys have sooo much faith I could not help but to ask. Thank you all.

Prayingmom
09-27-2005, 03:51 PM
I will be praying for little Jason. I have seen so much suffering in the past 18 months--not only for my Jason, but also for many other little children. When is the surgery? I will pray for him and for the doctors and all of you--hoping for a good outcome--and complete success.

Dear Heavenly Father,
Please be with this family, with this little baby. Please comfort them and give them peace. Lord, we thank you for skillful doctors and know that you give them their abilities and that behind them all that you are the Great Physician. Please guide the doctors' hands in this surgery. Please allow this surgery to be a complete success and that this little child would grow strong and live a long, healthy life that brings glory and honor to you. Please let everything about the surgery go smoothly from the anesthesia to the time he awakens everything before and in between and after and please mend his little heart back together for complete healing.

In Christ's name I pray.
Amen

happyelf
09-27-2005, 04:29 PM
Mrzshorty;
Please know I will pray for little Jason during this time-for a successful sugery with a speedy and uneventful recovery.
You came to the right place, there are many many wonderful people who will include you, Jason, and his family in theirh thoughts and prayers. Anytime you need support....come here.
Please let Jason's family know he is on a few prayer lists. Please post any updates when you get time.
Hang in there....Kiss that baby for me.

mrzshorty
09-27-2005, 05:16 PM
Thank you guys sooo much!!! His surgery is schedule for Oct. 18, I will keep you posted. Take care,

Melissa

K2P
09-27-2005, 09:25 PM
Dear Melissa,

Am sure all those who saw your request will be praying for little Jason. Along with most, if not all of them, I say AMEN to Prayingmom's beautiful prayer for your cousin.

God indeed is the Great Physician. But the thing that gives peace within us that passes human understanding is knowing Jesus & claiming His promises (that's in a verse i couldn't recall right now) , and that knowing God has everything wonderfully planned for each of His children.

Little Jason is in God's able hands. A song which gave hope to many Christians in passing through trials is Don Moen's "God will Make a Way"

Everyday, a miracle happens. It may not be exactly what we asked for at that particular time. But knowing & believing God is good all the time, we can't help but agree He only wants the best for us.

May God empower your family & relatives as you all go through with baby Jason his upcoming surgery, Melissa. God be with you all.

karol

nancy wanguku
09-28-2005, 05:47 AM
Hallo everyone, to those who may have lost the loved one God gave and takes praise Him for everything. He has taken his precious fruit from His garden. For the sick ones let ask for his healing when everything seems to be impossible there is always an answer from Him. Praise Him always.

Nancy

Prayingmom
10-01-2005, 03:04 AM
My week, Part 1
I have had a busy week. It has been pretty emotional for me. On Monday night we went out to eat at one of the Chili's where I had placed Jason's picture with the coloring sheets that we purchased. All the profits from that night nationwide and the money from the coloring sheets went to St. Jude's. Jenny even got one of the special tee-shirts they had for sale and the money for that went to the same cause. Some of these funds go to children's cancer research, though it isn't specifically rhabdomyosarcoma, they do research that cancer also. St. Jude's doesn't turn people away if they can't pay--is what I've heard. I consider it a very good cause. I am glad that Chili's supports this worthy cause. Jason liked to eat at Chili's. Even when he didn't feel like going out sometimes we would bring him some of their chips and salsa, which he loved.

On Tuesday night, the place where David works had their special service recognition awards night. I've gone to these with him for years. Last year at this time it was on a river boat with a paddle wheel. We cruised up and down the river from 6pm to 10pm. There was a sit down dinner, the awards and desserts on the deck afterwards. Everyone liked it so much that they decided on the riverboat again. Last year when we went to this recognition service, Jason was alive. This year we are missing him. A lot of the people there, probably most of them and there were over 500, knew of our loss -- our heartbreak and of course many expressed their sorrow for us. ....and I cried. Again we were told of how whole churches were praying for him. I had hoped to send thank you cards to each church that was praying for him, but I am beginning to think that is impossible. So many people were praying for him.

I had to come home on Tuesday night and finish packing for the school trip to Land Between the Lakes. Jenny, Joshua, Justin and I all went on this trip. We had cabins to sleep in there and over 100 from our school went. I threw in sleeping bags for the boys, knowing that they would not "make" a bed, but I packed sheets for Jenny and I. We had to leave the house at 7:30AM on Wednesday and we just got back today, Friday, at 5:00PM. This trip was so full of memories of Jason. It has been two years since our school made this trip in the fall of Jason's senior year of high school. He had really come into his own as a senior. He seemed so happy, laughing with his friends. In fact, the last time we went to Land Between the Lake is the last time I really remember Jason alive and healthy-- being the boy we always knew--so full of life and vibrant, daring and brave, athletic and strong. I know that it was actually 3 more months--right after Christmas 2003 that I learned that he was having the pain in his sternum and shortness of breath, but this is the last place I remember him being healthy. Who could ever have imagined then the nightmare that we would live through that would weaken him and slowly sap his strength away and finally take his life? I finished filling a little photo album with our most recent pictures of him to take with us. It also had pictures of him starting from the age of 5 when Josh was just 6 months old. I just wanted to have pictures of him with me on the trip. I cried on the way there remembering and trying to remember more of the last time we went. This time Clorisa, Alan, Justin, and William kept scanning the radio and sometimes a favorite song of Jason's would play and that made me cry. We arrived at the planetarium and had lunch at the outdoor pavillion with the whole school group. When we drove up 2 years ago the elementary school students came 1 day ahead of the junior high and high school students. That year, Jenny came the day before without me since I was committed to driving the older kids. So two years ago, the older students had the picnic area to themselves. The principal of their school reminded me of Jason climbing, practically walking straight up, the pine trees there and he climbed all over the playground equipment and then some of his friends were all kidding and saying that Jason could jump over a tall bush in the field and Jason actually ran and acted as though he might jump over that bush, but instead he just jumped into the bush. He was so happy--having the best time--smiling more than I'd ever seen him smile, except when he was a little boy, but I think that he the way he was with his friends and more calm around us. I remember that day. It was a Thursday. After we all ate lunch we went to the planetarium show. After packing, getting up early and driving 3 hours, and eating lunch, many of us couldn't keep our eyes open through the show. I think I even snored--I do that, to my embarrassment, when I am very tired.

Two years ago, after the planetarium show, we drove on our cabins. I didn't see Jason and the other boys very much the rest of Thursday or Friday until we were ready to leave. I stayed with Jenny and did things with the younger group. I remember just getting a glimpse of Jason through the trees while he was on a challenge course on ropes pretty high in the trees, while Jenny's group was going on a nature hike. I have been told that he excelled on the challenge courses. When they did the orienteering (using a topographical map and a compass to find 4 points) Jason and Justin were in a group with Mr. Ed, and brothers Nathan and Jonathan W. All of them were very fast and the rules said they had to stay in a group. Jason's group made a new record finishing the course in only 25 minutes as they ran through the whole course. The usual time for finishing is 1 1/2 hours. Justin just said that they did it quickly because of Jason--he just ran and encouraged the others to run to keep up with him. Jason always bragged about how quickly they finished the course. It was one thing he was proud of and it was unusual for Jason to brag about anything. So soon after this time he would be incapacitated by his cancer and by chemotherapy treatments and radiation burns to his foot.

This year (this morning-Friday) I went on the orienteering with Jenny's age group. Fourth, fifth and sixth grades must be the earliest that they are allowed to try it. We only found 2 of the targets in 1 1/2 hours. It was all girls, except for one dad who had his phone on and suddenly got reception on his phone and a call from work while standing on the side of a hill, so he couldn't move or he would lose reception. The little girls moved pretty slow anyway. One of the other moms stayed with me and we finished the course on our own, but it made me more amazed at what Jason had done.

Prayingmom
10-01-2005, 03:06 AM
Part 2 - My Week
One of the games all of the older kids play each year is a game called Human Stratego. I had never played until this year when I felt sorry for Joshua's and Justin's team and was a medic for a little while so I could help heal the dead team members. The principal of the school said that 2 years ago Jason single-handedly won this game for his team. He was given a high numbered soldier card. High numbers in the game beat low numbers. Jason ran the entire time and no one could get away from him. He chased people down even up on the steep hill beside the football field where they ran to try to escape him. He brought his team leader many, many cards from the other team. She said that he was amazing and that everyone just marvelled at him as he ran swiftly over the field.

I have only one picture from that time 2 years ago. It is a large group picture, but my boys are sort of together in it, with Josh in front and Jason with Justin on his shoulders behind Josh. I wish I had more pictures of him from that day or any day when he was alive and healthy and so happy, but then again, it might just make me more sad. The memories brought tears to my eyes. I came to the relization that even if I had rolls of pictures from every single day of Jason's life and if I had videotaped every waking moment from the day he was born so that I could just watch and watch films of him and never stop for years---it would never be enough--it could never replace my living and breathing son and the future I had hoped for him--all the things any parents wants for their children--college, career, success, a wife, a long life....you want them to live a life pleasing to God--a good life.

The adults are always kept busy on this trip. We are expected to participate and help in any way we can. There weren't too many chores for any of us, but we were busy, so I didn't have a lot of time to just sit and think and cry. I alternated doing things with Jenny and things with Josh and Justin. I saw Justin and Mitchell as their canoe flipped over and they were dunked in the water and had to swim out. I was so far away that I couldn't see who it was, but I walked over to get pictures and now I have proof. They were the only ones who flipped a canoe--they tried leaning to turn the canoe instead of just paddling. At dark last night the teenagers had something the leaders called "A Prayer Experience" and I participated in that. There were 24 prayers or things to do such as pray for a person in the room, or raise your hand and point to the future and then confess something about God. It is hard to explain, but it was very meaningful and really spoke to me, especially about pointing to the future and the prayer that went with it and something about remember the past. There were prayers that made me cry.

After that we went out for the annual bonfire and smore making time. The principal always gets glow sticks and the kids have fun with those for hours. The weather was beautiful. The sky was full of stars. In the remote area we were in it was very dark and we could even see the Milky Way. A cold front moved through on Wednesday night. It rained during the night and turned much colder by morning, warming to a very comfortable temperature by afternoon. Thursday and Friday were just wonderful.

We drove back this afternoon, after cleaning our cabins, and playing Mega-relay. (I didn't get to do the relay because Jamie and I were in the woods completing the orienteering course.) I came down late to watch them finish it up. Justin and Joshua's team won and got to go to lunch first. After lunch, a group picture was taken and then we headed back with the same people in my car. Driving back, we always take a slightly different route and so I was back to thinking about the last time I had driven this way and Jason being alive and who was in my car back then with Jason and Justin. I know that Emily D. and Jenny M. were with us, but I can't remember which boys came. The same thing with the radio in the car--some of Jason's favorite songs and groups played and I remembered and cried.

From the moment we know that we are expecting a baby our love for that child grows and grows and a mother's (or father's) love never stops...

I am glad I got to go on this trip and I wouldn't have missed it for the world even though it made me very sad as I remembered the last time we were there....... It will be two years before we go back again. I thought it might be nice to have a nice matted and framed nature picture with an In Memory of Jason plate with the dates of his birth and death placed at this specific camp even though it is a restricted area that only reserved groups can visit because it is the last place in my memory that Jason ran happy and free. I'll have to think about it and perhaps contact someone.

I just miss him so much... and I can't stop missing him even though I know he is in a much better place. I want him here with me ... healthy and strong and that is something I can never have. I want the life we had back. Despite Jason's words--"I'll just be in heaven a few years before you," it has been just over a month and that seems so long.

I cling to this promise with all my heart, for what hope have I without it, "Jesus said (to her), 'I am the resurrection and the life. Those who believe in me will live even though they die; and those who live and believe in me will never die.'"

Thank each of you for visiting and for the messages you've left. God bless you all.

Don't forget to pray for little Jason's heart surgery on Oct.18.

happyelf
10-01-2005, 12:03 PM
Prayingmom; I think the plaque is a great idea; a fitting tribute to Jason. I(we) experienced many yrs of fertility treatments, to get our children, and I have always told them, "I waited my whole life for you." A parents, haven't we all?
Take care Pam, it was nice to hear from you. Enjoy the weekend. Gina

katkat
10-01-2005, 05:09 PM
Yesterday I was watching court tv. There was a man charged with neglect because he left his loaded hand gun on the floor of his living room. His son picked it up and accidentally shot and killed one of his best friends. THis is in the state of Florida where they hold these gun owners responsible. I forget the technical name of the neglect charge but the judge gave him 7 years but suspended 3 1/2 years of it. The parents of the killed 12 year old on the other hand got a life sentence without their son. They each got to stand up and say how they felt to the court and to the defendant. It was gut wrenching, tear jerking speeches they both gave. I thought how devastating it would be to lose a child and I thought of you prayingmom. One thing that I think will help you get through this, although you might not feel it now is your strong belief in God and heaven. You know without a doubt that Jason is where God is now. Let me say it again.......Jason is where God is!!! He won't have to endure all lifes hardships any longer. He is already at peace and from the way you talked about Jason, he seems to be a caring and level headed young man. I know that he would want you to get on with your life, knowing full well you will eventually be reunited with him when God calls you home. It could be next week, or it could be 40 years from now. But that day will come and you know it, and count on it. That is the difference that many others who lose their loved ones, without God in their lives they don't fullly understand that, you do.

4given1
10-03-2005, 09:13 PM
Always thinking of you, Prayingmom, and always checking in to see how you're doing. I, too, think the Memorial plaque is a wonderful idea. Jason would be so honored. :)

Keeping you in my prayers,
Lainie

halo1
10-07-2005, 11:14 PM
Dearest Prayingmom, I am so very sorry to hear of your son. I have a son close to your son's age. May your faith in the Lord get you through these sorrowful days.
You and your family are in my prayers.

haleysmum
10-08-2005, 11:47 AM
Dear Prayingmom, I have been following your posts for a very long time now, way back on the other one that got deleted :( I have never known what to say to you . I havent lost a child , but my son is just a little younger than yours, his birthday is 27th January 1986. He hasnt been the easiest child to bring up, in fact VERY difficult, but in saying that I cant imagine what it would feel like if I lost him :( After spending the past couple of hours reading through this thread, I have made myself a promise to not take life for granted and try and get close to my son again. I am so so so sorry for your loss. I dont know what else to say :(





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