We are celebrating my Son's 10th year out of treatment. He was diagnosed in June 1999 with Burkitt's lymphoma when he was 5 years old. He is a sophomore in high school now and physically doing great. I am looking for someone that might have information regarding late term effects with these kids and learning disabilities. I received some great information from the Utah chapter of the Candlelighters, is there anyone else having these problems. Mostly math (algebra), organizational issues, difficulties staying focused, inability to sit very long and following through once instructed. After 11 years of trying to get help for my son (whom by the way, thinks he is stupid, which of course he is not) I have finally found a friend in the high school council office, Heather, you are an angel! She is setting my son up on a 504 plan to get him some much needed assistance. If there is anyone else out there having similar problems, I would love to hear from you.
God Bless
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LATE TERM EFFECT HELP
- By KMele
- Posted October 21, 2009 at 1:21 pm · 5 replies
- In Emotional support for my child
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- By alclmom
- Posted October 26, 2009 at 12:37 pm
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That is fantastic...congrats on the 10 year mark! I was glad to read your post, I have been very concerned about late effects. My daughter is 13 and only 2 1/2 months off treatment, but I am watching very closely....I have talked with many people about it including all her teachers, school psychologist, psychol. at our clinic. I chose to have an academic evaluation done when she was 1st dx to get a baseline, so now I have proof so to speak if she does develop any late effects.
I am glad you have a friend for resources at your school now, but I would HIGHLY recommend requesting for a full evaluation through your school. If you can have a independent one done outside school, that is even better. In my opinion, an IEP would be more ideal vs a 504, but that usually costs a school district more and they are always hesitant to go that route.
I have another daughter who has ADD, she is in her Jr. year, we fought with our district for 9 years to get her appropriate programs to help her with alot of the same issues you mentioned, even with a 504 that turned into an IEP, she is now in a school specifically for kids who learn differently, and WHAT A DIFFERENCE! I was so nervous to switch her in 11th grade, but what she will get out of the next 2 years will help her the rest of her life to succeed for sure.
I realize your son is a Sophomore, but it is never too late. Results from an eval. could potentially help with diagnosing some type of learning difference as a result of his treatment, identify issues to request for accomodations on SAT testing for college, and ultimately have a special ed program set up for him now and for when he goes to college (I am just assuming that, please forgive me if he chooses not, I have a 19 yr. old in that boat right now, and it's ok too)
He is probably very frustrated too.
I am so sorry about this long post, please feel free to email privately if you need more info.
www.curesearch.org has great info on late effects,
www.curetoday.com
I got a book free from Candlelighters called 'Childhood Cancer Survivors-A Practical Guide to your Future" -GREAT resource. you could also go to www.childhoodcancerguides.org for that and other resources.
Does your hospital have a survivorship program?
Good wishes to you and congrats again!
Sue
- By KMele
- Posted October 26, 2009 at 12:53 pm
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Sue, good morning and Thank You!!! I so enjoyed your response. I love being able to communicate with parents going through the same things. However, the majority of the discussions are about ongoing treatments, not too many that have 10 years under their belts (thank goodness). Thanks a million for the advise and resources. I will be going there as soon as I am done here. You are right to question my son's ambition about college. He has NO desire to go. But unfortunately he does not have much faith in his abilities. As his Mom, I know how brilliant he is, I hope as time goes by he can come to understand what an amazing young man he has become. We were not offered the option of testing my son. I think now there are so many more options for these kids then there was 10 years ago. I am grateful for that only wish my son would have had them during his many years of struggling and not knowing why. Thanks again Sue take care, best of luck and God Bless.
Kris
- By monahan1
- Posted October 27, 2009 at 9:59 am
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Hi Kris,
How wonderful to hear your son has hit the 10 year mark! Sue's answer to you was right on the money. The IEP would give the most bang for your buck. You have the right to request an evaluation for one. It is the fall but the year is moving forward. The district will probably insist on evaluating him in the classroom for 3 weeks before announcing a decision. Additionally, if you have an outside neuro-psych evaluation done, they can't ignore the results. Well, they're not supposed to ignore them. But they will still have to do the in-class setting eval. Document, document, document.
One of the newer treatments people are using with post treatment kids is using a metronome. It helps with memory and retrieval issues. (If you search metronome therapy, you'll find links) It was developed for stroke victims and now used with cancer kids. I have friends using it now and are pleased with the results. When I finish dealing with the latest family crisis (my dad just finished induction so I have temporarily moved with my daughter to be w/mom in FL) I will probably start my daughter on it too.
I hate to be repetitive because Sue really did say all the right things. Your son's frustrations and feelings about his abilities are normal for any kid with learning issues. My oldest daughter, who has an auditory processing problem, is in college and on the long term plan. In my mind, it is her lack of self esteem that makes for the biggest problem. She has learned a lot of coping techniques. I tell her that the hare didn't win the race.
Good Luck!
Sherry (Fiona's mom)
- By KMele
- Posted October 27, 2009 at 10:49 am
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Sherry,
good morning and thank you. I am left wondering why no one has suggested I test my son. I feel like I have been left out in the cold (so to speak). You mentioned your daughter and her coping skills, boy did you nail that right on head. Jace has really got good at hiding things and pretending everything is just fine. I will check on the metronome therapy as soon as I am done here this morning. What great hope that brings me and my son. Thank you so much!!!!
Sherry, thank you so much for the great advise and help. Thanks to Sue as well.
Kris
- By KMele
- Posted October 28, 2009 at 2:06 pm
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Just a little footnote to my original post, 11 school years of difficulties for my Son...not actual years. I think back to the time when he was receiving treatments ten years ago and can not believe how fast time has gone by. At the time, every minute seemed like an eternity. Now when I think about it, it was just a flash of time. Proving that time truly does heal all wounds!!!
thanks again for all the support.
Kris
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