Hi Michelle,



Thanks for getting things going again. I have to admit that somewhat of
a normal life has crept in to our lives and I have not been keeping up
with the list serves. Collin is doing great. Diagnosed 1/03 with 2
surgeries, 1 round of local radiation, and 3 cyberknife treatments. He
has been off chemo since 1/05 and off Thalidomide since 1/07. We just
had a 6 month MRI this week and are awaiting the info. Collin is in a
3rd grade class, but in a special needs room for his academics.



Congrats on hearing all the good things from everyone. I would like to
keep in touch. I would also like to keep hearing about Owen's upcoming
surgery. Collin's tumor was also in the left frontal lobe. He does have
minor seizures but they are controlled by Keppra. He has math, language
and recall issues all pertaining to that side of the brain. I have heard
that once the connection in the brain is cut that the right side will
take over. I just wonder if this would help Collin. He is learning but
it is a slow process. He is 10 but probably acts and functions like a 6
or 7 year old.



Great to hear from everyone,

Kelley



________________________________

From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
Michelle
Sent: Sunday, July 06, 2008 12:54 PM
To: ATRT@yahoogroups.com
Subject: [ATRT] Hello & Welcome



Hello,

My name is Michelle Kees and I am the mother of Andrew Padfield.
Andrew was diagnosed with ATRT in August 2007 and is in week #36 of
51 on the DFCI/IRS-III protocol.

I am a member of the Pediatric Brain Tumor Listserve on Yahoo, and
have gained tremendous support and knowledge from the other members
over the past year. In recent months, I have been communicating at
length with a number of other parents whose children have ATRT.

These conversations often centered on treatment options, scientific
literature, nutritional homepathic possibilities, new avenues for
preventing relapse, and in-depth explorations of genetics and
hsnf5/INI1. I think we have learned alot from one another, but it
seemed like there was a missing piece - all the other ATRT
families. I felt like my email conversations have been repetitive,
but with different families. And I wondered if maybe other families
were having similar conversations, and perhaps I was missing out on
some new information that could be important for Andrew's
treatment.

I contacted Loice, the moderator for the ATRT Listserve on Yahoo,
and asked her thoughts about getting our Listserve up and going
again. And here I am. Emailing each of you already on the
listserve, and emailing other ATRT families that I know and asking
them to also join this listserve. Given the similarities between
ATRT and other Rhabdoid tumors, we also welcome Rhabdoid families.

I'd like this listserve to be a source of support and encouragement
for newly diagnosed families, families in treatment, families who
have completed treatment, and families whose children have become
angels. I think we all have something to share. I also hope that
this listserve will become The Place to come to learn scientifically-
based information about treatment options. In the coming weeks, I
will be posting articles and other information in the Files
section. I encourage each of you to do so too, and to add your
child's story to the Folder "Our Children" under the Files section.

We have all had unique experiences and have good information to
share with one another. At our very core, we want the same thing:
for our child to be cured. Through the re-igniting of the ATRT
Yahoo group, I hope that we can make a difference for our children
and for those children yet to be diagnosed.

Michelle
www.carepages.com andrewpadfieldcarepage





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