Just wanted to say congrats to Zoe and her family for completing treatment. Also
to Owen,  i have followed his story and he is such a brave little man, and Cyndi
is always such a great contributer to the list and Rhabdoid Kids.  I do not post
much, but always read.  My son is Ben Sherlock who was dx with AT/RT is Jul 04. 
His tumor was located in the front right lobe and was fully resected.  He was 3
1/2 at dx and recieved the IRS III protocol with intrathecial chemo, and then a
tandem stem cell transplant.  He has been off treatment since Apr 05, and was
having an MRI every 3 months until this past January when it went to every 6
months.  We just had one last Monday and all is well.  As far as lasting side
effects goes, we have been very lucky.  He does have some hearing loss, which
does seem to go up and down, which they said it would not do.  Some learning
issues, many around reading, but not far off the norm.  He has only been
admitted
twice since discharge, and both times for a viral infection and they were being
cautious.  He is a happy healthy and extremely energetic 7 yr old.  He is away
at camp right now for 2 weeks, watersking and rockclimbing and keeping his
counsellors busy I am sure.  Ben did not receive any radiation, by our choice
and his doctors.  At the time in 2004, rads were not showing any better
prognosis then stem cell transplant, and the risk for long term side effects
fora 3 1/2 yr old were much greater.  I do beleive unfortunalty it is very
random with little medical explanation as to why some kids respond where others
do not. It has been a rough month in the AT/RT world and just wanted to bring
some hope that there are longer term survivors.  Any questions are welcome, and
my thoughts and prayers are with all your children.
 
Regards
Jennifer Sherlock
mom to Ben 7 (dx Jul 04 AT/RT) and Carly 10



--- On Fri, 8/8/08, M Kees <mkees73@...> wrote:

From: M Kees <mkees73@...>
Subject: RE: [ATRT] Re: Zoe finished treatment
To: atrt@yahoogroups.com
Received: Friday, August 8, 2008, 3:04 PM







Thanks Cyndi, for sharing more about Owen and his journey. I know these days are
a bit hectic for you while in the hospital with Owen as he recovers from the
hemisphrectomy. I hadn't heard the neurosurgeon' s comments about the brain
tissue being so badly damaged, and that meds would never have been able to
control the seizures. It sounds like the hemisphrectomy was the best way to go.
Good to know!!

From what you wrote, it sounds like Owen was on the same chemo protocol as Zoe
is on now, COG99703.

I am not very familiar with Intra Beam. I think it is super high dose radiation,
zapped at the area, somewhat like gamma knife perhaps? Do you know more? Have
others had Intra Beam?

Michelle



To: ATRT@yahoogroups. comFrom: superowenrules@ yahoo.comDate: Thu, 7 Aug 2008
17:54:39 +0000Subject: [ATRT] Re: Zoe finished treatment

Owen is almost 2 years off treatment, as far as side effects fromchemo, none.
His hearing is great. He has right sided weakness fromwhere ht tumor was
located, that was his only symptom that somethingwas wrong. I can't think of
what protocol Owen was on, I know it hadvincristine, episode, cisplatin,
carboplatin, and Thiotepa. Not sureabout the spelling but you guys would know
what I was taking about. He did get the stem cell rescue. Owen get's PT/OT/ and
speech therapy, he is a big drooler so we justtried Botox to the salivatory
gland. WOW that works great!!!We did the Intra Beam offered at Childern's
Memorial, I truly believethis is what made the difference in Owen. It has also
caused him ALOT of problems, he started having seizures a year ago with no
luckcontrolling them a functioning hemisphrectomy was the only way to getrid of
them. Surgery went great but when the neurosurgeon came inafter surgery, he said
he has never seen this kind of damage to
thetissue before, so there would have been no way to control them
withmedication. So the Intra Beam worked great killing all the cancercells, but
caused us a lot of trouble with the seizures and now thissurgery. I am thankful
that it worked so well, maybe a little towell. We are hoping to be out f the
hospital this weekend or earlynext week.Cyndi LyonsMama to Owen the great!!!www.
caringbridge. org/visit/ owenlyons- -- In ATRT@yahoogroups. com, M Kees
<mkees73@... > wrote:>> > Congratulations to Zoe for finishing treatment!! And
thanks, Mette,for posting.> > > I would be interested in hearing from other
parents about treatmentinformatio n and side effects of treatment.> > Radiation:
The radiation decision is difficult because most of ourchildren are young. With
older children with ATRT, it seems to be animportant ingredient in treatment. (I
have these literaturereference s if anyone needs them). Most of the earlier
protocols didnot include radiation for
young children with ATRT. More recentprotocols seem to be trending towards
radiation, even in children lessthan 1 (like Amanda Vilanola & Mattea Lesorgen).
I wonder what otherpeople think.> > Proton radiotherapy: Andrew (focal,
Bloomington, IN), AmandaVilanola (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 elsereceive
proton therapy instead of the typical photon? (I also haveinfo on proton versusu
photon if anyone needs that).> > COG 99703: Anyone else on this protocol? or
something similar withVincristine, Cisplatin, Cyclophosphamide, Carboplatin,
Thiotepa, StemCell rescue? > > Side Effects of treatment: Yeah, isn't this the
fun one. We arejust starting to see some of these with Andrew, and I'll admit,
it isdisheartening. Like it hasn't been enough to fight cancer, now wehave OT,
PT, speech, ENT, pulmonary, Infectious
Disease, Early On, andthe list could go on.> > Hearing Loss: This seems to be a
common one for many of our kidsb/c of the Platin drugs - Cisplatin, Carboplatin.
For some, radiationalso exacerbates the hearing loss. How often do you have your
kidsmonitored for hearing damage? What have you done about it? How hasit worked
out?> > > It has been a tough month for our ATRT families, and there are
timeswhen it is difficult to keep going and not get lost in the fear. Oneof the
things that helps me is my belief that these precious angelsand their families
have blazed the trail for us, and we owe it to themto learn from their lives,
learn from their treatment, and learn fromtheir spirit. > > I would like to see
more postings like Mette's, just a quickyupdate, that can get our brains
thinking and our hearts connected. Our families are a wonderful source of
knowledge and support. Need tomake a decision about something? G-tube, trach,
stem cell, medi-port,PT, OT,
where to find cute hats - send an email. Chances are thatsomeone has been
through that and has some good answers. Having atough day, week, month, and just
need a little extra support andfriendship. Send an email. Chances are we have
been through that too.> > Dream, Hope, Believe. > Michelle> m/o Andrew>
www.carepages. com andrewpadfieldcarep age> > > > To: ATRT@...: metteearlywine@
...: Thu, 7 Aug 2008 06:03:21+0000Subjec t: [ATRT] Zoe finished treatment> > > >
> Hello to everyone - I haven't posted yet but I'm really gladthisgroup is going
again - thanks Michelle.Just wanted to share thatZoe finished her last proton
beam radiationtreatment on Monday,marking the end of her planned course of
treatment. Her tumor was inthe upper/left/back part of her brain. She had a
neartotal resection +chemo + 28 radiation treatments (she got the COG99703
protocol: 3rounds of vincristine, cisplatin, cyclophosphamide, etoposide and
3rounds of carboplatin, thiotepa w/
stem cell rescue).Now we move on toMRIs every 2-3 months, and start mopping up
all themedical debris leftover from treatment: feeding issues (she's stillon TPN
and NG feeds,doesn' t eat by mouth), hearing loss issues, andmonitoring
forlong-term side effects.It is a nice milestone to achieve, but it isalso
scary. Especially inlight of all the losses our group hasexperienced over the
last month.Surviving ATRT long term still seemsto 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, myheart is heavythinking of all our ATRT kiddos out there. To
thefamilies of thosewho have departed: Blessings and wishes for peace,comfort,
and thecapacity to keep putting one foot in front of theother on all thosedays
when it feels so impossible to do so. To thefamilies of thosestill surviving:
onward and forward, as long as
wecan.Love to you all - MetteEarlywinewww. caringbridge. org/visit/
zoeearlywine > > > > > > ____________ _________ _________ _________ _________
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