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@...: superowenrules@...: 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 treatmentinformation 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 literaturereferences 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
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 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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