Chrissy,
I am sorry that you are now a member of our elite group. I just wanted to
pass on this quick bit of advice- don't listen to the prognosis- there are so
many kids out there that have beat the odds. I also think that this type of
cancer is so "new" that things are changing every day.

My son Joey was diagnosed with AT/RT in March of 2007. He was 7 years old
at the time (this cancer is typically found in children under 2 years). His
cancer was found in his neck- it was a tumor that extended from his left side,
around the caratid artery and between his vertebrae (this cancer is
typically found in CNS or Kidney). We did not have surgery to remove it, but
did
chemo, radiation and a stem cell transplant.

Joey is a year out from transplant. He is back in school full time, he
plays soccer and takes Hip Hop classes. To see him you would never know that
he
had cancer.

If I believed in the prognosis I would probably be mourning his loss but
instead I celebrate!

Take care and feel free to talk any time.

Suzanne Sudo
_www.carepages.com_ (http://www.carepages.com) Josephsudo


In a message dated 9/30/2008 7:48:33 P.M. Eastern Daylight Time,
chrissy4u30@... writes:




sorry, i think half of my message got lost. how is your son? did they remove
all of his tumor? which chemo did you decide on?

--- On Tue, 9/30/08, Toby Padfield <_tpadfield@..._
(mailto:tpadfield@...) > wrote:

From: Toby Padfield <_tpadfield@..._ (mailto:tpadfield@...) >
Subject: RE: [ATRT] hi
To: _ATRT@..._ (mailto:ATRT@yahoogroups.com)
Date: Tuesday, September 30, 2008, 12:25 PM

Chrissy,

I am sorry to hear about Nicky's diagnosis. Can you provide some additional
information on the chemotherapy treatment that has been proposed? How much
of the tumor was removed during the craniotomy? Where is Nicky being
treated? Unfortunately you have many decisions to make regarding the type
of treatment that you want for Nicky, and not much time. If you haven't
done so, you may want to create a website at CarePages (www.carepages. com
<_http://www.carepage_ (http://www.carepage/) s.com/> ) or CaringBridge
(www.caringbridge. com
<_http://www.caringbr_ (http://www.caringbr/) idge.com/> ). Good luck with
everything.

Best wishes,

Toby Padfield

Father of Andrew (2yo dx Sep 2007)

_http://www.carepage_ (http://www.carepage/) s.com/ (AndrewPadfieldCare
Page)

_____

From: ATRT@yahoogroups. com [mailto:ATRT@From: ATRT@yahoogroups. com
chrissy4u30
Sent: Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups. com
Subject: [ATRT] hi

Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy

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