Wow 5 years!!!! That is fantastic. My son Owen will be two years
off treatment in October. What a long process but well worth it.
Owen has done pretty good, he has right sided weakness from where his
tumor was located, and he started having seizures a year ago. We
have tried a lot of medications and no luck. We had to make a big
decision to have another surgery, a functioning hemisphrectomy. They
will be taking out the rest of his frontal lobe (left side) and
disconnecting the right side from the left side by cutting the
Corpus callosotomy. This will stop his seizures and he already had
the right sided weakness so it won't change any of that.
I'm so happy to hear about Jared.
Cyndi Lyons
www.caringbridge.org/visit/owenlyons

--- 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
>