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    Old 08-09-2005, 11:25 AM   #1
    NavyMom68
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    Question New ALL Diagnosis

    Hello,

    I am new here and to tell the truth I never expected to be here.

    My five year old daughter was just diagnosed with ALL. We are currently waiting on the results of her spinal tap to see if it has spread or not.

    The doctors have recommended chemo therapy and radiation, but she's so tiny I don't know if she'll be able to handle all of that. She'd have to stay in the hospital too to protect her they say.

    I'm at such a loss right now I don't know what to do. I still haven't told her father, my ex husband. I have no idea how he'll take this.

    I suppose I just want to know what to expect. How dark can this forest get before it gets lighter.

    Any help and advice is appreciated.

    Sarah

     
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    Old 08-10-2005, 06:56 AM   #2
    rachelpass
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    Re: New ALL Diagnosis

    i am sorry to hear this. Hang in there.. the doctors have such great resources at their fingertips now a days. Take Care and i will pray for you..
    God Bless
    Amy

     
    Old 08-10-2005, 06:57 AM   #3
    rachelpass
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    Re: New ALL Diagnosis

    how did they make the diagnosis? what were the symptoms? i ask this because i am starting to suspect leukemia as a differential diagnosis of my crazy symptoms.sickness.. amy

     
    Old 08-10-2005, 12:20 PM   #4
    RachelGrace
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    Re: New ALL Diagnosis

    Quote:
    Originally Posted by rachelpass
    how did they make the diagnosis? what were the symptoms? i ask this because i am starting to suspect leukemia as a differential diagnosis of my crazy symptoms.sickness.. amy
    Usually a diagnosis is made after a CBC comes back with abnormal figures suggestive of leukemia. If a doctor suspects leukemia, they will do a bone marrow biopsy to check for blasts (cancer cells). If they find any, you have leukemia. Further tests can see how much it has spread, and exactly what type you have.

    Some of the generalized symptoms are:

    * Fatigue
    * Malaise (a feeling of body discomfort)
    * Abnormal bleeding (for instance, if you get a cut and it takes a long time to stop bleeding)
    * Excessive bruising (and/or tiny, red pinpoint dots that don't go away with pressure)
    * Weakness
    * Reduced tolerance to exercise
    * Weight loss (and sometimes appetite loss)
    * Bone and/or joint pain
    * Infection and fever (often you get many infections)
    * Abdominal pain and/or fullness
    * Enlarged spleen, lymph nodes, and liver
    * Shortness of breath and/or chest tightness

    You do not need to have all of these. Some people do not have any (Chronic leukemia). If you notice you have quite a few of these, have your doctor do a simple CBC w/DIFF.

    Hope this helps!

    ~Rachel

     
    Old 08-12-2005, 07:57 PM   #5
    NavyMom68
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    Re: New ALL Diagnosis

    I first noticed that Lucy was getting sick a lot more often than usual about six months or so ago. She almost never was ill, hardly ever got ear infections or the other illnesses little ones are prone to.

    My mother-in-law said it was because now she was in school and was in contact with other kids. I thought okay, this might be the case and let it go. Then the nosebleeds started and the bruises showed up. My ex then tried to convince me that it was because she was dancing and because the air was dry and she had allergies. I think I knew it was more, but even her pediatrician did not think we had reason to worry.

    The condition persisted and got worse until she started complaining of hurting. Not anywhere specific, just hurting. Finally, I knew I had to do something so I pushed for a blood test and they found leukemia.

    The put her in the hospital as it had been a while since the symptoms started and they told me today that it did spread to her spinal fluid.

    I have a feeling we are in for a long haul and I only pray that we get through this thing.

    I had two other children a three and half year old son and an 14 month old son.

    Appreciate all prayers and advice.

    Sarah

     
    Old 08-18-2005, 03:00 AM   #6
    ukchick
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    Re: New ALL Diagnosis

    hey, im 15, from england and was diagnosed at the end of march this year. i just want to say there are plenty of hard times ahead but once you start fighting the big "c" it will all become clearer. i just want to share a bit of advice: dont plan anything. this is what i was told in march and trust me its the motto out family live by. when she has good days, try and keep you routine normal and on bad days, remind yourself tomorow is going to be a better day. give my love to you daughter and wish you all the best of luck
    lucia x

     
    Old 08-19-2005, 08:24 PM   #7
    NavyMom68
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    Re: New ALL Diagnosis

    Hello All,

    Thanks to everyone who wrote in with advice and prayers. They are appreciated.

    We have made it through the first week of treatments and as suspected they have been Hell on her. She is hit hard with severe headaches that make her cry out and vomiting beyond anything that I imagined. When she's not vomiting she's dry heaving. She has almost no feeling in her legs and little muscle control in her lowered body. She is also plagued with severe back pain and has swollen gland in her neck and under her arms.

    I keep telling her it will be okay soon and this medicine will make her better. She wants me to fix it, and I don't know how to tell her I can't. Part of me is almost thankful my ex-husband is here now for the duration. Lucy is very attached to him and his arrival has lifted her spirits.

    Please keep us in your prayers and please keep the advice coming.

    Sarah

     
    Old 08-25-2005, 09:04 AM   #8
    dma11663
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    Re: New ALL Diagnosis

    My heart goes out to all of you. I am now 41. My father passed away when I was 5 years old from an acute form of Leukemia. That was a long time ago. Back then they couldn't do all the amazing things they do today to treat these forms of cancer. What they are doing now to treat patients, well, it is simply amazing.

    About 5 years ago, my sister's husband was diagnosed with CLL He is on maintenance treatments now. He went through a number of different things when he was first diagnosed until they found the right course of treatment. He never did go through Chemo/Radiation as his oncologist said she wanted to try different things to help him as he was a young man and was concerned about his "quality of life". He is in remission and I thank God every day, as he is now only 52 but seems healthy.

    I donate $$$ once a month to the Leukemia and Lymhoma society, this is my way of keeping my dad's memory alive and I know in my heart that it is helping with research to try to find a cure.

    In the meantime, I will pray for all of you and please pray for my family too.

    God Bless and keep you all in his arms.

    DA

    Last edited by dma11663; 08-25-2005 at 09:07 AM.

     
    Old 08-25-2005, 07:50 PM   #9
    NavyMom68
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    Re: New ALL Diagnosis

    Once again thanks to all who have written in. It seems the more I pray for her and try to help, the worst she gets. She's in so much pain and crying all the time. My ex or I sleep at the hospital every night, she barely gets more than a hour at a time because of leg tremors or pain. Is there something I should be asking the doctors that I'm not. They want to put her on a spinal cath for medication to her spine where the mets are. That' seems risky and I've hear of bad infections from that and chemo ports. What about PCA? Any help appreciated.

    Sarah

     
    Old 10-13-2005, 03:10 PM   #10
    mimiblue
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    Re: New ALL Diagnosis

    I'm bumping this post up......I'm sure any advice would be appreciated.....

     
    Old 10-16-2005, 02:46 AM   #11
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    Re: New ALL Diagnosis

    I do know that statistics and numbers mean nothing.

    However, according American Cancer Society, the prognosis of ALL is very high in children. More than 80% of the child patients got cured. I do wish your daughter will be inside the 80%.

    My pray for her

     
    Old 10-19-2005, 09:12 PM   #12
    calista307
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    Re: New ALL Diagnosis

    Not sure if I missed where you live.......St. Judes Hospital has a great site for all your questions. My nephew was diagnosed at 5, and all went well. Went into remission within the first 20 days....but there is a 3 year protocol - at least for boys. They say at age 5, and it being ALL - it's sort of the best of the group. The younger, the better the prognosis. All the stuff you're going through now is rough, probably worse for your heart as it aches for your little one. Try to stay up on the newest, latest protocols for the young ones.....they have come such a long way. If they want to do the spinal pump for the pain, do it - easing the pain is the first priority. The units treating these children know what they're doing. They told us if it does not relapse within 7 years, you've got it licked. Best wishes.....and bunches of prayers to you all.

     
    Old 10-26-2005, 10:57 PM   #13
    NavyMom68
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    Unhappy Re: New ALL Diagnosis

    Its been a while since I've been able to get to the board. I've been with my daughter almost constantly and she has improved very little. They've been radiating her back and now her skin is red and dry. The spinal mets have not shrunk and her counts have barely changed. They are trying more and more aggressive therapies for her, but nothing has really helped. Either my ex or myself is always with her, but it is taking a toll on us. I don't know what to do, all i know is I'm losing hope.

    Sarah

     
    Old 10-27-2005, 05:00 AM   #14
    calista307
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    Re: New ALL Diagnosis

    It's not easy, but I hope you are communicating with the Dr's......I guess I should say I hope they are communicating with you. Does the hospital have a social worker with you, and working with her? You really have to be aggressive as to being told what protocol they are using and why....and if it needs to be more aggressive, what are the options. The hospital routine gets real old fast......we took shifts round the clock also to stay - but it is nerve racking. Especially the fact he's the ex......just what you need I'm sure. Any other family or friends in the area? You really need to get a few breaks in, walk outside, get some air. One of my best mornings (after a rough night)was walking down to the lobby/garage area, and I'm sure the attendant was an angel......he had a CD playing "Say a Prayer For Me", a gospel song.....and it was absolutely beautiful. The smallest things seem to stand out - stay positive and hug that little one! Miracles happen every day......sending good energy along!

     
    Old 11-07-2005, 09:50 AM   #15
    tmg
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    Re: New ALL Diagnosis

    Sara,

    I am worried about my son and I don't know if I am over reacting. On Sept 21-23rd he had a fever of 101,sore throat and cough. He didn't have strep just a virus. On Oct 1st and 2nd a low grade fever 100. On Oct 15th fever 102 on the 16th 103 on the 17th 100. On Nov 1st he vomited once and had a fever of 101. He complains occassionally that his right heel hurts and his stomach hurts sonmetimes. He hasn't had any bleeding but he did say yesterday he didn't feel good and that he thought he needed more sleep when he goes to school. He has been going to bed at 8:30 and getting up at 6:30 So he went to bed last night at 8:00. He is 9 years old I am not sure if he is just catching every virus around or if there is something more. going on. when you say your daughter was sick alot was it similar to what my son is going through or different. Thank you so much Tina

     
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