Owen is almost 2 years off treatment, as far as side effects from
chemo, none. His hearing is great. He has right sided weakness from
where ht tumor was located, that was his only symptom that something
was wrong. I can't think of what protocol Owen was on, I know it had
vincristine, episode, cisplatin, carboplatin, and Thiotepa. Not sure
about 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 just
tried Botox to the salivatory gland. WOW that works great!!!
We did the Intra Beam offered at Childern's Memorial, I truly believe
this is what made the difference in Owen. It has also caused him A
LOT of problems, he started having seizures a year ago with no luck
controlling them a functioning hemisphrectomy was the only way to get
rid of them. Surgery went great but when the neurosurgeon came in
after surgery, he said he has never seen this kind of damage to the
tissue before, so there would have been no way to control them with
medication. So the Intra Beam worked great killing all the cancer
cells, but caused us a lot of trouble with the seizures and now this
surgery. I am thankful that it worked so well, maybe a little to
well. We are hoping to be out f the hospital this weekend or early
next week.
Cyndi Lyons
Mama 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 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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