Hi, I'm new to this board, but not to others such as personality disorders and diabetes boards.
My 10 y/o nephew, my husband's sister's son, was recently, 9/28, diagnosed with Testicular Cancer with Metastasis to 70% of his liver, most of his lymph nodes in the abdomen and lower back area, and parts of his lungs. He grew too fast, too much. He is 5'8" tall and weighs about 150 lbs. Two days after the diagnosis his left testicle was removed, it was about the size of my fist.
He has no 'father' to speak of, even though the man lives about three blocks away. So he had no one to ask if it was normal for his testicle to be different from the other, to be so heavy and painful. He complained about lower back pain, and we suspected a kidney infection. The doctor ordered blood and urine tests, and then CT and MRI scans. After the surgery, the tumor was found to be a germ cell tumor. This type of cancer is more common in men ages 20-40 than in little boys. If only he would have had someone he felt comfortable talking to, we may have caught this cancer before it spread.
My nephew, Jon, underwent six days of chemo and two weeks of hospitalization. We will return to the hospital for more chemo twice next week, then the following week go back into the hospital for another 6 day round of chemo. This cycle of chemo and going home will last until Christmas. There is a 70% chance that most of the tumor can be stopped in this cycle. If not, then we are looking at a liver transplant and radiation. Poor kid.
He's taking it well so far. Up until now, he has had NO major or even minor health problems except the growing thing. He developed pubic hair when he was 6 years old! He's the only boy in the 4th grade who has to shave!
He's not having too many side effects from the chemo yet, some nose bleeds and a little upset stomach. I give him a daily infusion through his central PICC line of medication and flush his ports daily.
My main problem is that his mother as the educational and emotional level of a 5th grader. She has two other children, girls, age 14 and 18. The 18 y/o recently married while we were in the hospital with Jon. The 14 y/o stayed with my husband, who has no children of his own, and her teenage angst and talkative nature drove him to the edge of insanity. My own children are 18 and 20 and have moved out of our home. My daughter is a freshman in college in a nearby city, and my son is a construction worker in the same city as my daughter.
I have been made legal guardian for my nephew and my 14 y/o niece. It's like having kids all over again, with some major exceptions. These kids have been spoiled rotten. Their mother receives SSI for "fears" and social phobias. She can barely leave her home. She cannot go to the store by herself or even call utility companies on her own. My husband and I do most of this for her. She had to be on a large dose of Xanax the two weeks we were at the hospital. I had to explain to her several times a day, for several days, that her son has cancer. She expects him to behave normally now that's he's home, but then again she is extremely overprotective and basically a doormat waiting to be used by her own children.
I have to remind her to take his temperature several times a day, to have everyone wash their hands, and for most people to wear masks around him. He is very vulnerable to infection right now. His kidneys are in danger of failure. He is not eating properly. Other family members are showering him with gifts like it's Christmas. The younger daughter, the middle child, is demanding attention by acting out fantasies of being in love with a 40 year old man. The man is not discourging her attention. I find this unacceptable.
I am "on-call" 24/7. I live next door to my sister-in-law, and it seems I am the only one capable of reading a thermometer, taking blood pressure, etc. I had to remind her NOT to give Jon over-the-counter medications for his coughing. If the doctor had wanted to give him something for coughing, then he would have prescribed it. The doctor wants Jon to cough up the phlegm in his lungs so as not to develop pneumonia or bronchitis. I have placed no smoking signs on the front door of their home.
I am extremely frustrated that my advice is not being followed. She allows him to eat whatever candy he wants, but doesn't offer him nutritious foods. He has eaten three cartons of cottage cheese and cheap fish sticks for the past two days. Now she's giving him cough drops. She refuses to read the material on childhood cancer and testicular cancer. She says that's my job. To read it and interpret for her. I gave her a book on childhood cancer called Chemo, Craziness and Comfort, geared for the 7-12 y/o and she hasn't been able to get through it.
We have the boy homebound from school, and although his teachers are being extremely senstitive and cooperative, Jon has done NO homework. I'm talking connect the dots, reading short stories, a few math worksheets (math is/was his favorite subject).
I realize how difficult it is to be a single parent. I was a single parent of my children for over 12 years. I only met and married my husband within the last two years. MY SIL is fortunate to have another sister to help her, but this other sister is disabled and cannot do much.
I'm disabled myself by personality disorders and diabetes. My husband is disabled from a back injury and nerve damage. I am fortunate enough to be educated and outgoing enough to ask the medical personnel all the questions that need to be asked.
I'm really frustrated and tired right now. I'm in this for the long haul, no matter how long it takes and what sacrifices I have to make. I love my nephew and I want him back outside playing basketball in my driveway as soon as possible. I'm afraid that he will become so spoiled and helpless by the time we finish the chemo cycles that no one will have any authority over him. He's already using "I have cancer, give me what I want". He thinks he can talk to anyone, anyway he wants. He yelled at me to get out of his room and leave him alone, when I was giving him his medication. I'm not used to children speaking to me like that. I understand he's afraid, confused, and angry. He should be, but his mother should not allow him to curse and yell at the adults that trying to help him.
Thanks for allowing me to vent. If any of you know of any agencies that can help defray the costs of transportation (around 60 miles round trip) and food for me and his mother while at the hospital, please let me know. My husband and I have the only vehicle for us, them, and the other sister and her family. We are basically the family taxi. I am diabetic and cannot always eat in the hospital lunchroom, it's too expensive. I have been taking a small cooler with me to the appointments, but it will not last the next six day hospital stay. My husband has to have the car, because he has the 14 year old and she has a tendance to run off and not let anyone know where she's going.
Recovering Borderline - 20 years +
I can't imagine a 10 year old having testicular cancer! I was 21 when I was diagnosed! The good thing is testicular cancer is one of the most treatable type of cancer! So please keep in my the cure rate is still very high even if it has spread.
Hi Nakita. Please feel free to vent here any time you ened to. You have so much on you plate right now, you need an outlet. My heart aches for this little guy, and how scared he must have felt when in pain. Thankfully he has you and your husband.
Contact the local chapter of the American Cancer Society. They can help arrange transporation to and from appts, and I think they can arrange it cost-free. Are you near a large city or a small town? They do such a good job of matching All different kinds of programs/assistance to all the needs of cancer patients; that's what they are there for. Being the guardian of this child and his sister, you are entitled to assistance in their care, be it for drs appts, meds or transporation or other things. Use them!!!
As I read your post I kept hearing the bells of an angel getting her wings. You are an angel and this family is VERY lucky to have you. You are the only glue holding them together right now, and even tho they don't show it in the nicest way, they know it. That's why they turn to you, when they are in need of anything, from reading info to them to adminisitering medicine.
Through all of this, take care of yourself. Your husband and children need you too. I'll see if my friend (a nurse) knows of any thing else you could check in to.
I appreciate the opportunity to vent and the understanding you have given me. Yes, testicular cancer is pretty rare for boys, especially at 10 years old. He grew too fast. He's 5'8" and weighs 160 lbs..
I'll be sure to contact the American Cancer Society in my area. I live in a small town in WV, and we travel to Morgantown, where WV University hospital is. We live too close to stay at the Ronald McDonald House, but too far to make the drive every day, although we CAN go to the RD house to get meals and do laundry etc... on a daily basis.
We go in the morning for a check up. Blood work and all that...
Talk to you soon
Recovering Borderline - 20 years +
We've gone through 2 cycles of chemo now. Jon is doing great...considering. He's lost 3/4 of his hair, but wants it to fall out, not be cut or shaved. He's been in a great mood, eating and playing like a normal 10 y/o boy. He's lost a considerable amount of weight, from 150 lbs, up to 170 (fluid), down to 116. This week at clinic, for checkup and chemo, he was 121. He's eating now, so that will help.
I've contacted several organizations for help. Our local WV Dept of Human Services does reimburse for travel expenses, but they are so far behind, I may not see that reimbursement until next year sometime. In the meantime, I still need cash to pay for gas. We also had a flat tire, and it's impossible to find a 14 inch, 185 tire for a 95 ford tempo in my small town in WV.
My sister-in-law isn't having any financial problems with this diagnosis. In fact, she's applied for SSI for Jon and should have no trouble getting it. She will be getting another $579/mo. I, on the other hand, have lost my unemployment check, since I'm not actively seeking employment. My husband cannot work due to disabilities, that are not qualified under SS. So we have NO income. I still have rent, utilities, food, etc... I do get some foodstamps, and heat assistance, but not enough to pay the bills. My 401 K, that I cashed in, will run out soon. I can't possibly work. I have to be 'on-call' for my SIL and nephew 24/7. I have shut-off notices for water, electric and phone, cable and internet. I am getting desparate.
One of the organizations is giving me a $500 grant, but they don't know when it will be mailed. That will cover one months worth of expenses.
I do not live near a big city. Any suggestions?
Recovering Borderline - 20 years +