Hi Netty,

5 years is AWESOME!!!!!!!!!!!!!!

Could you tell us newcomers a bit more about Jared. I am really
interested to hear more about what treatment protocol he was on
(since it clearly worked!!!!) and also whether your family ever did
the genetic testing for INI deletion.

It is wonderful to have folks like you on this listserve to help
guide us through and share hope. Thank you.

Michelle, m/o Andrew
www.carepages.com andrewpadfieldcarepage

--- In ATRT@yahoogroups.com, "netty365" <netty365@...> wrote:
>
> 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
>