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Each section below represents a post by a listmember of one of the ACOR e-mail lists. Each poster gave me permission to reproduce the post on this web site in hopes that it would help other parents.
"My advice to the parents of kids who've had CR is to keep a sharp eye out for the development of any of the spectrum of effects on Nancy's list and to get a baseline neuropsych test done if you possibly can. Knowing what to look for means you can catch and address problems before they turn into major dramas. I wish we'd had Nancy's list so we knew what was causing my daughter's problems at school last year. It got to the point where she was depressed and hating school and making herself sick with anxiety before we heard about neuropsych testing. No one should have to let it get to that stage.
"The psychologist wrote the following recommendations for my daughter: [NOTE: these recommendations were tailored for one girl's specific needs and other kids might benefit from other ones.]
1. Your daughter's performance on neuropsychological and other testing should be fed back to the parents, the teachers and any rehabilitation professionals involved to enhance their awareness of the child's cognitive abilities and weaknesses, and provide them with suggestions for management of your daughter's weaknesses.
2. In terms of cognitive skills, your daughter may benefit from:
- Gentle redirection back to task if she has difficulties with attention and concentration.
- If possible, she should be positioned to minimise distractions in her environment.
- Encourage her to perform mathematics on paper or using a calculator to avoid loss of information due to her difficulties with working memory.
- She should be encouraged to self-check her work for mistakes to prevent careless errors due to poor attention and concentration.
- She should be encouraged to ask questions in class to clarify information or instructions that she may have missed or lost track of.
- Praise her for asking questions for clarification.
- Avoid punishing her when she is off-task or has missed information.
- She may benefit from frequent repetition of material to ensure that she is able to acquire it (i.e. frequently recite her times tables).
- Present material in context or in smaller chunks where necessary to enhance the likelihood that she will acquire it.
- Presenting information visually in addition to verbally will be of benefit to her (i.e. presenting spelling words visually).
- Praise her effort rather than outcome with her academic work.
- She may benefit from one-on-one attention and encouragement with work that she perceives she is having difficulties with."
"My daughter began kindergarten last fall right after a big chemo pulse so she was bald as an egg. Also, she had an external catheter. Because she had not been in day care during the initial several months of chemo, she was starting school pretty much as an alien -- she knew no one and was acutely aware of how different she looked. Here are some suggestions based on my experience:
1. Be certain to meet at length with the principal, teacher, and school nurse (or whatever medical team they have in your district) well in advance of school. Meet with them individually and also as a group with your daughter before school starts. Let them know your child's special needs and limitations, but also reassure them that she won't break. Make sure they know that you expect her to be treated just like the others to the extent that is possible. If she has trouble with fatigue, discuss arrangements for her to come in late, have rest periods, whatever. It really helps to find out what experience they already have (usually none) and to be sure that they feel comfortable with the reality of your child's situation. You have to make them see that while the disease and its treatment is deadly serious, you'll handle that and you are concerned with keeping things as normal as possible so your daughter can make the most of her time in class. It helps your kid, too. My daughter was not happy about meeting everyone in advance, but when she realized that she knew stuff they didn't know she felt a sense of control. She sort of enjoyed showing them all her tubie and how it worked. She also enjoyed knowing that she was going to be the only kid in class on the first day who already knew the teacher.
2. At the group meeting, bring in an emergency kit for the teacher and nurse and demonstrate how everything works. I included clamps in case of a line break (which we did have, by the way), emergency site cleaning supplies and detailed instructions on how to use them, and a very complete instruction sheet on what to look for/be attuned to and when to call me, the docs, or 911 for assistance. Be certain that they seem comfortable with everything.
3. Write a letter (it's best to bring it to the group meeting for discussion and possible revision) for distribution to the parents of the other kids during the first week of school. In this letter, introduce yourself and your daughter, explain that she has ALL and what that means, reassure them that their kids can't catch it, and beg them to notify you if their child has or is exposed to a communicable disease. Explain that things like chicken pox or conjunctivitis, which are annoyances for their kids, can kill yours if you don't know that they have been exposed. At the same time, stress that your child is just like theirs except for this disease she is fighting. Encourage them to call you if they have questions or want to talk. Be open and friendly. I found that the parents welcomed the letter and they used it and their conversations with me to help sensitize their own kids. As the year wears on, they forget about the need to let you know about exposures so you may need to remind them during the winter break.
4. If your daughter is image conscious, ask about whether she can wear a hat, wig, scarf, whatever. Hats are not allowed in our school, but they made sure my daughter knew she could wear one. Ultimately she decided to go au naturel, but it was good to have the option.
5. Volunteer in the class as much as you can. It gives your daughter confidence and it helps the other kids to see that she is loved and treated normally by her family, thereby helping them to treat her normally.
6. Get a baseline neuropsych evaluation, before school starts if possible. (Beware! They are expensive and you may have to fight to have it paid for by your insurance.) At this stage in treatment, it will probably be normal, but that will be reassuring to you and the teacher. Make sure the teacher knows, though, that the drugs she gets are neurotoxins and can cause learning problems as time goes by. Clue her in to watch for difficulties with attention, coordination, etc. This test will help enormously if your daughter develops problems later. You can use it to get the extra help she needs.
7. Try to find out how your daughter feels about school starting (she may lie to reassure you) and let her know that you think she'll do great and make friends. Encourage her to let you know if she has any problems or fears. (I found the kids to be WONDERFUL! It was the parents who needed education, reassuring, and an occasional boot in the bottom ...)
8. If your daughter has to miss big chunks of school, tell the teacher that it will help if the class sends her something letting her know they miss her. (Nik was at school for 2.5 weeks, then had to miss the next five weeks. Until I called the teacher and made her send something, Nik was quietly miserable and didn't want to go back to school. She understood completely that the kids would all have made friends with each other and she was scared to death that she would be viewed as a freak. When I talked to the teacher, she said that she had wanted to have the kids do something, but didn't want to risk offending or upsetting US! That was a valuable talk and after that time, every time my daughter had to miss school (which she did -- a LOT), the teacher made sure that the kids sent her cards and stuff and welcomed her back.
9. You will probably have to miss some time every week. Be sure they know that in advance and try to work appointments around special school times.
10. Make friends with the secretary and other office personnel. trust me. You'll be glad you did.
11. Take heart. My daughter missed a total of three months of school last year, but she finished at the top of her kindergarten class and had made many friends. She also became WAY more outgoing and confident during the year. That's all that occurs to me now. Good luck!!!!!!!!"
"We are having a problem now with getting the appropriate books brought home from school. The homework list is nailed down, but the corresponding books in the bag is a problem. So, today I went up to the school and asked for a second set to keep at home. A win/win. She doesn't have to worry when she's had a long day about what to stuff in the bag and she doesn't have to carry a 40 lb. book bag. And she doesn't have to stay in the next day from recess to make up homework she couldn't do for lack of a book at home."
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.