Thanks for sharing your story with us. It is amazing to hear about your journey
and it feel a bit similar to ours. Many congratulations to you all.
Maria with Olivia, 11
4 years off treatment
http://groups.msn.com/OliviaSamuel/_whatsnew.msnw



To: ATRT@...: netty365@...: Sat, 12 Jul 2008 00:59:01
+0000Subject: [ATRT] Next Month Jared - 5 years out of treatment




HiI see a lot of names I recognize. Seems like without the updates being sent
automatically, a lot of us have lost touch with the other Rhabdoid Kids
families. I liked getting the emails and being kept upto date and seeing more
children completing treatment and surviving. I also tried to contact new
families who recently were told that their child had ATRT and let them know that
Jared is doing well and is out for so long.Actually, next month it will be 5
years that Jared completed the final phase of the protocol and (knocking wood &
crossing fingers). that was the last time he was in the hospital. Since, he has
graduated preschool, has a little brother he loves and improves everyday. The
tumor did do some damage to the brain. He is in special education but has come
so far in the past 2 years. for educational purposes his is considered Traumatic
Brain Injury. It is his memory processing that has the large deficit but we are
looking into a new therapy to help train his brain to compensate and find a new
way for him to remember and process information. We spend so much time dealing
with schooling, therapies, etc. that we really only think about the cancer when
it is time for an MRI. 5 years ago it consumed us and I never thought we would
have life that would resemble anything close to normal. but we do have a good
life now.As always if anyone has any questions, please feel free to email. I see
several names of children here that were diagnosed around the same time as Jared
and see they are still okay also. This also gives me more hope and some relief.
We still live with the fear that it could return.netty






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