Congratulations to Zoe for finishing treatment!! And thanks, Mette, for
posting.


I would be interested in hearing from other parents about treatment information
and side effects of treatment.

Radiation: The radiation decision is difficult because most of our children are
young. With older children with ATRT, it seems to be an important ingredient in
treatment. (I have these literature references if anyone needs them). Most of
the earlier protocols did not include radiation for young children with ATRT.
More recent protocols seem to be trending towards radiation, even in children
less than 1 (like Amanda Vilanola & Mattea Lesorgen). I wonder what other
people think.

Proton radiotherapy: Andrew (focal, Bloomington, IN), Amanda Vilanola (focal,
Jacksonville, FL), and Zoe (focal, Boston, MA) received proton. Jonathan
Shaddix is currently doing proton (focal, Texas), and Gavin Smith, too
(cranial-spinal, Texas). Anyone else receive proton therapy instead of the
typical photon? (I also have info on proton versusu photon if anyone needs
that).

COG 99703: Anyone else on this protocol? or something similar with
Vincristine, Cisplatin, Cyclophosphamide, Carboplatin, Thiotepa, Stem Cell
rescue?

Side Effects of treatment: Yeah, isn't this the fun one. We are just starting
to see some of these with Andrew, and I'll admit, it is disheartening. Like it
hasn't been enough to fight cancer, now we have OT, PT, speech, ENT, pulmonary,
Infectious Disease, Early On, and the list could go on.

Hearing Loss: This seems to be a common one for many of our kids b/c of the
Platin drugs - Cisplatin, Carboplatin. For some, radiation also exacerbates the
hearing loss. How often do you have your kids monitored for hearing damage?
What have you done about it? How has it worked out?


It has been a tough month for our ATRT families, and there are times when it is
difficult to keep going and not get lost in the fear. One of the things that
helps me is my belief that these precious angels and their families have blazed
the trail for us, and we owe it to them to learn from their lives, learn from
their treatment, and learn from their spirit.

I would like to see more postings like Mette's, just a quicky update, that can
get our brains thinking and our hearts connected. Our families are a wonderful
source of knowledge and support. Need to make a decision about something?
G-tube, trach, stem cell, medi-port, PT, OT, where to find cute hats - send an
email. Chances are that someone has been through that and has some good
answers. Having a tough day, week, month, and just need a little extra support
and friendship. Send an email. Chances are we have been through that too.

Dream, Hope, Believe.
Michelle
m/o Andrew
www.carepages.com andrewpadfieldcarepage



To: ATRT@...: metteearlywine@...: Thu, 7 Aug 2008
06:03:21 +0000Subject: [ATRT] Zoe finished treatment




Hello to everyone - I haven't posted yet but I'm really glad thisgroup is going
again - thanks Michelle.Just wanted to share that Zoe finished her last proton
beam radiationtreatment on Monday, marking the end of her planned course of
treatment. Her tumor was in the upper/left/back part of her brain. She had a
neartotal resection + chemo + 28 radiation treatments (she got the COG99703
protocol: 3 rounds of vincristine, cisplatin, cyclophosphamide,etoposide and 3
rounds of carboplatin, thiotepa w/ stem cell rescue).Now we move on to MRIs
every 2-3 months, and start mopping up all themedical debris left over from
treatment: feeding issues (she's stillon TPN and NG feeds, doesn't eat by
mouth), hearing loss issues, andmonitoring for long-term side effects.It is a
nice milestone to achieve, but it is also scary. Especially inlight of all the
losses our group has experienced over the last month.Surviving ATRT long term
still seems to be more about random luck thananything else. I wish, as we all
do, that there was a more definitiveanswer - a "sure, we can cure this" kind of
plan. Though I am glad to move beyond active treatment, my heart is
heavythinking of all our ATRT kiddos out there. To the families of thosewho have
departed: Blessings and wishes for peace, comfort, and thecapacity to keep
putting one foot in front of the other on all thosedays when it feels so
impossible to do so. To the families of thosestill surviving: onward and
forward, as long as we can.Love to you all - Mette
Earlywinewww.caringbridge.org/visit/zoeearlywine





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