neuroblastoma

Becky - posted on 02/16/2009 ( 8 moms have responded )

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My son Aaron has just been transfered to the long term care clinic for kids that have been out of treatment for 5 years or more. Is anyone else there?? have any takes on what the long term clinic is?? Please share your thoughts.

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Beth - posted on 02/11/2010

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Christie,
I am blown away by the strength I can hear through your words.Thank you so much for sharing your story with me, Charlie also started chemo at a time when he would have been transitioning from baby food to solids, and that is where he has remained, so we are working on that now. The only kid I know that will chew the oreo cookie and then spit it out ... go figure. This too shall pass.
Bless you and your daughter, keep me posted !!
Beth

Christie - posted on 02/11/2010

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well, here's a quick update on what we think is going on with my daughter, who celebrates SIX YEARS from her last discharge date this weekend! Woo Hoo!

She was 18 mos at dx, and the only long term effect we are seeing is this weight issue, and general weakness. Here's what her docs think: she was treated at the age when most kids are experimenting with food. Instead, she learned that eating wasn't a pleasant experience (mouth sores, nausea, etc.) and she was a picky eater already. The weakness started in the last year due to her body not getting enough nutrition. We are getting her back on track, through PT, Nutrition and the GI team at the hosp. Hope this helps!

Beth - posted on 02/11/2010

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WOW ! Ladies,
I think I got all caught up in the treatment and process of getting rid of the cancer and I did not even consider the ramifications of the treatment. It is not like you are not going to go into BMT because you are afraid of the affects, ofcourse you are going to push forward and do everything for our babies. Now, that my CHarlie is 21 months old and we have just met with Regional Services, waiting for the approval. We have alot of catching up to do. My sons' stature is so much smaller than my other children. I just chalked that up to being a preemie. I never considered that there could be learning disabilities, I just assumed he would catch up. Am I really being that naive? I will start looking on this site much more often, I am very interested in all of what y'all have to say.
I pray for all of you and all your children.
Beth

Christie - posted on 09/09/2009

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Jennifer- I am very interested in your son's news. My daughter is also 51/2 years out from Neuroblastoma treatment (chemo, radiation, 2 auto bmt's and accutaine) and we have just been told that she is near the "failure to thrive" numbers for weight and height. It's like they suddenly dropped off in the last year- with no other long term effects. I am waiting for her CHIP benefits to start to get her into the long term program at Children's Hosp of Phila., so far we are just trying our best to get her to eat more (which is the biggest obstacle). Does your son eat well, or do you think there is another reason for his growth issues?

Jennifer - posted on 09/09/2009

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My son will see his long term doctor for the first time in 2 weeks at Sloan Kettering in NYC where he was treated. He has been off treatment for 5 1/2 years now. They say he will need growth hormones because of his small stature and weight. He's 8 years old and is the sixe and weight of a 6 year old. What kind of cancer did Aaron have?

Christie - posted on 08/03/2009

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I don't know if anyone will check this thread anymore. My daughter is also 5 years out from Neuroblastoma and is moving into the long term clinic at our hospital. My understanding is that instead of looking for disease, they look for long term side effects, like learning disabilities, etc. Our program also adds more psychology treatment at this point.

In terms of the synthetic antibody treatment, if it's what I think it is, added to the retinoic acid, this is a trial and I've read that there are already good results. I understand it is a little harder than earlier treatments (we had the retinoic acid only) but is well worth it.

Good luck!

Beth - posted on 06/11/2009

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I am so happy to hear that you are out of treatment. My baby Charlie was diagnosed with Neroblastoma at 8 months old, we are now going to stem cell transplant in less than two weeks, he is 13 months old. Yesterday they told us we are now adding a synthetic antibody based therapy to the end of his protocol, adding an additional six months to our treatment. Any advise from women who have gone through this. I would love to hear from everyone.

[deleted account]

Nope, I do not know what that is....  we are at 20 months post-treatment for neuroblastoma... she is now 4 years old.



 



Best of luck with your son!

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