Hi
I 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