Andrew is doing quite well, all things considered. He is a little over 1
year from diagnosis, and the tumor responded very well to the treatment.
The last 2 or 3 MRIs have shown the same thing-only a very tiny remnant in
the original tumor bed, that is possibly just a calcification. We used the
IRSIII protocol that DFCI created with proton radiotherapy instead of
x-radiation (IMRT, etc.). The resection during Andrew's craniotomy was only
~ 75%, so it is possible to have residual disease (clinical term) and still
achieve good response. Good luck with everything and please feel free to
ask any questions.



Best regards,


Toby Padfield





_____

From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
Chrissy G
Sent: Tuesday, September 30, 2008 7:46 PM
To: ATRT@yahoogroups.com
Subject: RE: [ATRT] hi



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@twmi.
<mailto:tpadfield%40twmi.rr.com> rr.com> wrote:

From: Toby Padfield <tpadfield@twmi. <mailto:tpadfield%40twmi.rr.com>
rr.com>
Subject: RE: [ATRT] hi
To: ATRT@yahoogroups. <mailto:ATRT%40yahoogroups.com> 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 s.com/> ) or CaringBridge (www.caringbridge. com
<http://www.caringbr idge.com/> ). Good luck with everything.

Best wishes,

Toby Padfield

Father of Andrew (2yo dx Sep 2007)

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

_____

From: ATRT@yahoogroups. com [mailto:ATRT@yahoogroups. com] On Behalf Of
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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