The Intra Beam is kind of like a gamma knife, it is a one time high
dose of radiation right to the tumor bed site. It is a wand. There
have been no other AT/RT kids who have had it but I was just contacted
by a Mom whose three and a half year old daughter had it done 2 years
to the exact date that Owen had his. caringbridge site
DonnaQuirkeHornik
Children's Memorial Chicago IntraBeam link

http://www.childrensmemorial.org/depts/neurocenter/braintumor/intrabeam.aspx

Have to go they are switching our rooms at our luxurious suite at
Children's Hospital in Milwaukee

Cyndi Lyons
www.caringbridge.org/visit/owenlyons
Owen diagnosed at 13 months old on 4/17/06

--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:
>
>
> 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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