Hi,
Just wanted to add some info about hearing loss.
Our daughter Olivia, 11, had (has) her tumours on the nerves that control
hearing/balance/facial movement etc, she lost hearing on one side quite early.
It was actually the first “sign” of this horrible disease. It became very clear
that we needed to be as careful as possible when planning the treatment etc. to
– if possible save hear hearing on the other side. We switched from Carboplatin
to cyklofos… something. We tested her hearing quite often during the treatment
period and after. Now, 4 years off treatment, we go approx. every 6 months to
check her hearing on the left side. She is still deaf on the other side.
We got help from the hospital very early and started learning sign language with
private teacher, just in case she would become totally deaf. After a while, as
we saw no changes, we stopped that – had so many other things to take care off.
BUT, later on, the audiologist people came to visit my daughter’s school to
see/show how they could improve the classroom environment (sorry for the
spelling etc), and talk to the kids about the sound level and what to think off
when speaking to her. It helped a lot.
Need to go off the train now…
Maria from Sweden




To: atrt@...: mkees73@...: Thu, 7 Aug 2008 07:32:18
-0500Subject: RE: [ATRT] Zoe finished treatment




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. Michellem/o Andrewwww.carepages.com
andrewpadfieldcarepageTo: ATRT@...:
metteearlywine@...: Thu, 7 Aug 2008 06:03:21 +0000Subject: [ATRT]
Zoe finished treatmentHello 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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