Dear Anastasia,
Even though my daugters diagnose is ATRT, I feel just like you, there is no
one that has excatly the same "problems" as she has. But I think that is
very common in a situation like this. Every child is unique and it seems
like every type of cancer or even ATRT is too.

We live in Sweden and I have no idea if we have the same protocol as others.
My daughter was 6 (Aug 2003) when they found 2 tumors, one behind the ear on
each side of her head. Therefore they first thought it was an other disease
(NF2) with benign tumors. She did an operation that took 20 hours to remove
one of the two and she lost a lot of functionalities (sorry for the english
here hope you understand) as a result of the tumor and operation, such as
deafness, facial paralyses etc.

She went through a tough treatment plan and I have a website where you can
find her protocol (in german I think). The most part of the text is in
Swedish but you can probably find several pages to understand, at least the
protocol. You have to be a member to join the site, but you are welcome to
join it. I think you can use your MSN password to log in.

I wish you and your son all the best.
Maria
http://groups.msn.com/OliviaSamuel/



>From: "shoalcreek2001" <anastasia_11@...>
>Reply-To: ATRT@yahoogroups.com
>To: ATRT@yahoogroups.com
>Subject: [ATRT] Protocol
>Date: Tue, 12 Oct 2004 04:18:37 -0000
>
>
>I feel so out of the loop. Although we have decided to not treat
>with Chemo anymore, I still have so many questions. In a post
>someone said, "I think we are all on the same protocol." However, I
>feel like my son's treatment plan was going to be different than the
>other ones I have read about here. Also, is there anyone out there
>with a Rhabdoid tumor being treated that is as young as my son
>Carter? (4 months or less) Are you all receiving treatment at the
>same facility? Are your child's rhabdoid tumors on the brainstem?
>Has anyone been treated successfully without radiation? Do your
>children have any of the same issues as mine- hydrocephalus with vp
>shunt, tracheostomy, g tube. I just feel like I am not connected to
>others with ATRT or the research because of all the other problems
>my son has had. Any input would be appreciated.
>Anastasia
>
>
>

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