Hi Maria,

Thanks for checking in!

It sounds like Olivia was switched from the -platin durgs to cyclophosphamide, a
very common med in most of the ATRT protocols.

I am glad to hear that things are going well for Olivia, and that the hearing
loss, while challenging, sounds like it has been manageable.

Michelle

http://www.gowindowslive.com/summergames?ocid=TXT_TAGHM

[Non-text portions of this message have been removed]

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 > > > > > >
__________________________________________________________> Get more from your
digital life. Find out how.>
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[Non-text portions of this message have been removed]

Special thanks to Shaine's parents for posting this information on their
website (http://www.caringbridge.org/visit/shainelynn)


U of C scientists grow disease in laboratory
Michelle Lang, Calgary Herald
Published: Thursday, August 07, 2008

http://www.cbc.ca/health/story/2008/08/06/atrt-brain-cancer.html?ref=rss

Calgary scientists have discovered how to grow a rare childhood brain cancer
outside of the human body, a finding researchers hope will help identify
potential therapies for the deadly disease.

While the cancer is traditionally difficult to reproduce outside of the body, a
University of Calgary team successfully grew atypical teratoid/rhabdoid tumour
cells -- or AT/RT -- in a petri dish with the help of brain fluid.  Experts said
the research findings, published in the July 24 issue of the Journal of
Neuro-Oncology, are important because they offer scientists the opportunity to
test drugs without putting a patient at risk.  "By growing them outside the
body, (we can) study the biology more easily and see what agents are effective,"
said Dr. Aru Narendran, lead researcher on the study.

AT/RT is a rare cancer, affecting about 15 Canadian infants and children
annually. The disease is aggressive and has a survival rate of only 10 per cent,
according to the Kids Cancer Care Foundation of Alberta, which funded part of
the study. Researchers have previously grown AT/RT in a lab using cells taken
from brain tumours. But Dr. Douglas Strother, director of the Alberta Children's
Hospital cancer program, said this technique often didn't work and the cells
died off easily.  In the Journal of Neuro-Oncology study, the University of
Calgary team reported on a novel method they developed for growing the cells in
a lab using brain and spinal fluid. Researchers said a natural hormone found in
the fluid appears to stimulate the cancer cells to grow.  Strother said the new
model is easier than performing brain surgery to extract cells from the tumour. 
He said the Calgary research also offers a new way of testing drugs to treat a
disease that doesn't currently have a standard therapy.

"The tumour is very aggressive in kids," said Strother, who worked on the study.
"We need a place to study it outside kids and that's why this is really good." 
Narendran and his team have already begun testing potential therapies on cells
grown in the brain fluid. One drug, AEW-541, is showing promise and seems to
stop the growth of cells.  Narendran said the research is still years away from
creating a new treatment for children with the disease.
But Christine Wandzura, founder and chief executive officer of the Kids Cancer
Care Foundation, said the study's findings offer hope for young patients with
AT/RT.  "When it's your child, it's not a rare tumour, it's a real thing," said
Wandzura, whose son died of a brain tumour in 1991.  "At this point, there
hasn't been a lot of success with the drugs they are using."
__
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Get more from your digital life.  Find out how.
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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
>
>
>
>
>
> _________________________________________________________________
> Get more from your digital life.  Find out how.
> http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home2_082008
>
> [Non-text portions of this message have been removed]
>

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
__________________________________________________________Get more from your
digital life. Find out
how.http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home2_082008[Non-t\
ext portions of this message have been removed]






[Non-text portions of this message have been removed]

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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Get more from your digital life.  Find out how.
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[Non-text portions of this message have been removed]

Hello to everyone - I haven't posted yet but I'm really glad this
group is going again - thanks Michelle.

Just wanted to share that Zoe finished her last proton beam radiation
treatment 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 near
total resection + chemo + 28 radiation treatments (she got the COG
99703 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 the
medical debris left over from treatment: feeding issues (she's still
on TPN and NG feeds, doesn't eat by mouth), hearing loss issues, and
monitoring for long-term side effects.

It is a nice milestone to achieve, but it is also scary. Especially in
light of all the losses our group has experienced over the last month.
Surviving ATRT long term still seems to be more about random luck than
anything else. I wish, as we all do, that there was a more definitive
answer - a "sure, we can cure this" kind of plan.

Though I am glad to move beyond active treatment, my heart is heavy
thinking of all our ATRT kiddos out there. To the families of those
who have departed: Blessings and wishes for peace, comfort, and the
capacity to keep putting one foot in front of the other on all those
days when it feels so impossible to do so. To the families of those
still surviving: onward and forward, as long as we can.

Love to you all - Mette Earlywine
www.caringbridge.org/visit/zoeearlywine

It is with great sadness that I share with you the passing of Grayson Ketab on
Tuesday, August 5th.  Grayson had ATRT.

Our hearts are with his parents, Leslie & Cliff, his sister Isabella, and his
twin brother,  Everett.  Grayson's webpage is: 
http://graysonkatab.wordpress.com/

Michelle
_________________________________________________________________
Get more from your digital life.  Find out how.
http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home2_082008

[Non-text portions of this message have been removed]

I think this is a terribly hard conversation that we all must have
and we all must think about.  Mark and I had extremely high hopes
going into Charlie's MRI (17 months post diagnosis).  A spot was
found (3.37mm), however, it seems that this spot is located in the
left eyeball.  Charlie's original tumor was wrapped around his left
optic nerve and extended back into the brain. There is no other
literature where the AT/RT presents itself in the optic nerve, so
Charlie is a pioneer, unfortunately.   At this point, Charlie is
going to have an EUA (exam under anesthesia) to be performed by his
Opthalmologist, Dr. Lyon.  Dr Lyon strongly believes that the spot
could be scar tissue, as it is in the same place where he snipped the
optic nerve away from the eye.  This has given us tremendous hope and
it is what we are praying for.  That said, we have to be prepared if
it is not scar tissue and it is, indeed, a tumor.  Charlie will also
undergo a PET scan once we see the results of the EUA.  During our
discussion with Charlie's Oncologist, Dr. Max, the Gamma Knife
Treatments was brought up.  She had a patient many years ago that had
a relapse and did the Gamma Knife and is glad to say the patient is
still alive and well today.  We are also doing our research to find
other treatments that have worked.  Charlie has had Methotrexate as
part of his Intrathecal chemo cocktail in the spine (at least 10
times).  I also am aware of the Doxorubicin Continuation Therapy.
Hopefully we'll have more information once we know what we're dealing
with on Monday.

Please say a prayer for scar tissue!!!!

Thanks, Michelle and Toby, for starting this very important
discussion.

--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:
>
>
> I'd like to start a discussion about some of the different options
for relapse that other parents might know about.
>
> I think this kind of information is important for all of us to have
just in case.  But this discussion is also very pertinenet for one of
our ATRT families.  MRI & PET scan recently showed that Jake
Dambrauskas has 3 new spots in the same area as the initial tumor.
http://www.caringbridge.org/visit/jakedambrauskas   Jake did ICE
chemo with stem cell rescue and radiation.
>
> We have been emailing individually with Jake's parents, Katie & Al,
but I thought the listserve would be a good way to open up this
discussion to other parents that might have ideas.
> I suggested the following:
>
> 1) methotrexate via ommaya and spinal tap. Joe Slater added
methotrexate after relapse/reoccurrence and his scans have since been
clear. I am not sure how the methotrexate was administered for Joe.
IRS-III protocol has it via ommaya and spinal tap on alternating
cycles. http://www.caringbridge.org/visit/joeslater
>
> 2) Something with doxorubicin. Studies out of Germany are showing
that doxorubicin is effective with ATRT. Abstract below was presented
recently at ISPNO.
>
> We would also contact Mark Kieran at DFCI Boston and Stu Goldman at
Children's Memorial in Chicago and maybe Peter Phillips at CHOP. All
3 are exceptionally kind and knowledgeable about ATRT. We would
probably also contact St. Jude's just for kicks. We like and trust
our doctor a great deal. But with reoccurrence/relapse, we'd pound
the ends of the earth talking to other docs and getting more
opinions.
>
> So, based on your own personal research or conversations with your
oncologist, what would you consider?
>
> Michelle, m/o Andrew
> www.carepages.com  andrewpadfieldcarepage
>
> _________________________________________________________________
> Time for vacation? WIN what you need- enter now!
> http://www.gowindowslive.com/summergiveaway/?ocid=tag_jlyhm
>
> [Non-text portions of this message have been removed]
>

We are also thinking of Charlie Walsh's family.  I just read on his
website that Charlie, too, has had a reoccurrence.
http://www.caringbridge.org/visit/charliewalsh1

Tough week.


--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:
>
>
> This has been a tough week for our ATRT families. Our hearts go
out to the families of Caroline Howard  www.carepages.com
GICKA42107 and Natalie Cunningham (Mom Kelley:  LuvMyBBugs22@...).
Both girls lost their battle this week.
>
> We are thinking of Jake Dambrauskas and his family as they
recently found 3 new spots on a brain MRI
(http://www.caringbridge.org/visit/jakedambrauskas).
>
> We are also thinking of Grayson Ketab and his family as their
recent scans suggested tumor growth.
http://graysonkatab.wordpress.com/.
>
> Michelle
>
>
> From within or from behind, a light shines through us upon things
and makes us aware that we are nothing, but the light is all. ~Ralph
Waldo Emerson
>
>
>
> _________________________________________________________________
> With Windows Live for mobile, your contacts travel with you.
> http://www.windowslive.com/mobile/overview.html?
ocid=TXT_TAGLM_WL_mobile_072008
>
> [Non-text portions of this message have been removed]
>

This has been a tough week for our ATRT families. Our hearts go out to the
families of Caroline Howard  www.carepages.com  GICKA42107 and Natalie
Cunningham (Mom Kelley:  LuvMyBBugs22@...).  Both girls lost their battle
this week.

We are thinking of Jake Dambrauskas and his family as they recently found 3 new
spots on a brain MRI (http://www.caringbridge.org/visit/jakedambrauskas).

We are also thinking of Grayson Ketab and his family as their recent scans
suggested tumor growth.  http://graysonkatab.wordpress.com/.

Michelle


From within or from behind, a light shines through us upon things and makes us
aware that we are nothing, but the light is all. ~Ralph Waldo Emerson



_________________________________________________________________
With Windows Live for mobile, your contacts travel with you.
http://www.windowslive.com/mobile/overview.html?ocid=TXT_TAGLM_WL_mobile_072008

[Non-text portions of this message have been removed]

I'd like to start a discussion about some of the different options for relapse
that other parents might know about.

I think this kind of information is important for all of us to have just in
case.  But this discussion is also very pertinenet for one of our ATRT families.
MRI & PET scan recently showed that Jake Dambrauskas has 3 new spots in the same
area as the initial tumor.   http://www.caringbridge.org/visit/jakedambrauskas  
Jake did ICE chemo with stem cell rescue and radiation.

We have been emailing individually with Jake's parents, Katie & Al, but I
thought the listserve would be a good way to open up this discussion to other
parents that might have ideas.
I suggested the following:

1) methotrexate via ommaya and spinal tap. Joe Slater added methotrexate after
relapse/reoccurrence and his scans have since been clear. I am not sure how the
methotrexate was administered for Joe. IRS-III protocol has it via ommaya and
spinal tap on alternating cycles. http://www.caringbridge.org/visit/joeslater

2) Something with doxorubicin. Studies out of Germany are showing that
doxorubicin is effective with ATRT. Abstract below was presented recently at
ISPNO.

We would also contact Mark Kieran at DFCI Boston and Stu Goldman at Children's
Memorial in Chicago and maybe Peter Phillips at CHOP. All 3 are exceptionally
kind and knowledgeable about ATRT. We would probably also contact St. Jude's
just for kicks. We like and trust our doctor a great deal. But with
reoccurrence/relapse, we'd pound the ends of the earth talking to other docs and
getting more opinions.

So, based on your own personal research or conversations with your oncologist,
what would you consider?

Michelle, m/o Andrew
www.carepages.com  andrewpadfieldcarepage

_________________________________________________________________
Time for vacation? WIN what you need- enter now!
http://www.gowindowslive.com/summergiveaway/?ocid=tag_jlyhm

[Non-text portions of this message have been removed]

Hi it's Owen's Mom, the surgery he is having is called a functional
hemisphrectomy.  They will be taking out the rest of his left frontal
lobe, there's not much left after the tumor anyway, and they will be
disconnecting the left side front the right side by cutting the Corpus
callosotomy.  Owen has been having seizures for a year now and has
been on Depakote, Lamictal, Felbamate, Keppra, and Topamax nothing has
worked for more then a few weeks.  He already has right sided weakness
from where his tumor was.  So the hemisphrectomy won't make a
difference with that.  His seizures are about 10 minutes long and has
two to three of them a day.  His are simple partial seizures.  It is a
major surgery, but we have done two of those already, we are experts
on that.  Everything will improve with having no seizures his speech
will excel, his cognitive abilities will also catch up to where they
should be, he is almost 3 and a half and was diagnosed with AT/RT at
13 months so everything has already moved over to the right side of
his brain.  He walks and talks and does most things a three year old
boy would do, for the most part.
Well I'm happy that Collin is doing great, hope you get his MRI
results soon, I hope this explained things about Owen's surgery, we
were in the car for a long time today and I am exhausted.

Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons
diagnosed at 13 months old 4/06...off treatment since 10/06


--- In ATRT@yahoogroups.com, "Kelley Canada" <kcanada@...> wrote:
>
> Hi Michelle,
>
>
>
> Thanks for getting things going again. I have to admit that somewhat of
> a normal life has crept in to our lives and I have not been keeping up
> with the list serves. Collin is doing great. Diagnosed 1/03 with 2
> surgeries, 1 round of local radiation, and 3 cyberknife treatments. He
> has been off chemo since 1/05 and off Thalidomide since 1/07. We just
> had a 6 month MRI this week and are awaiting the info. Collin is in a
> 3rd grade class, but in a special needs room for his academics.
>
>
>
> Congrats on hearing all the good things from everyone. I would like to
> keep in touch. I would also like to keep hearing about Owen's upcoming
> surgery. Collin's tumor was also in the left frontal lobe. He does have
> minor seizures but they are controlled by Keppra. He has math, language
> and recall issues all pertaining to that side of the brain. I have heard
> that once the connection in the brain is cut that the right side will
> take over. I just wonder if this would help Collin. He is learning but
> it is a slow process. He is 10 but probably acts and functions like a 6
> or 7 year old.
>
>
>
> Great to hear from everyone,
>
> Kelley
>
>
>
> ________________________________
>
> From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
> Michelle
> Sent: Sunday, July 06, 2008 12:54 PM
> To: ATRT@yahoogroups.com
> Subject: [ATRT] Hello & Welcome
>
>
>
> Hello,
>
> My name is Michelle Kees and I am the mother of Andrew Padfield.
> Andrew was diagnosed with ATRT in August 2007 and is in week #36 of
> 51 on the DFCI/IRS-III protocol.
>
> I am a member of the Pediatric Brain Tumor Listserve on Yahoo, and
> have gained tremendous support and knowledge from the other members
> over the past year. In recent months, I have been communicating at
> length with a number of other parents whose children have ATRT.
>
> These conversations often centered on treatment options, scientific
> literature, nutritional homepathic possibilities, new avenues for
> preventing relapse, and in-depth explorations of genetics and
> hsnf5/INI1. I think we have learned alot from one another, but it
> seemed like there was a missing piece - all the other ATRT
> families. I felt like my email conversations have been repetitive,
> but with different families. And I wondered if maybe other families
> were having similar conversations, and perhaps I was missing out on
> some new information that could be important for Andrew's
> treatment.
>
> I contacted Loice, the moderator for the ATRT Listserve on Yahoo,
> and asked her thoughts about getting our Listserve up and going
> again. And here I am. Emailing each of you already on the
> listserve, and emailing other ATRT families that I know and asking
> them to also join this listserve. Given the similarities between
> ATRT and other Rhabdoid tumors, we also welcome Rhabdoid families.
>
> I'd like this listserve to be a source of support and encouragement
> for newly diagnosed families, families in treatment, families who
> have completed treatment, and families whose children have become
> angels. I think we all have something to share. I also hope that
> this listserve will become The Place to come to learn scientifically-
> based information about treatment options. In the coming weeks, I
> will be posting articles and other information in the Files
> section. I encourage each of you to do so too, and to add your
> child's story to the Folder "Our Children" under the Files section.
>
> We have all had unique experiences and have good information to
> share with one another. At our very core, we want the same thing:
> for our child to be cured. Through the re-igniting of the ATRT
> Yahoo group, I hope that we can make a difference for our children
> and for those children yet to be diagnosed.
>
> Michelle
> www.carepages.com andrewpadfieldcarepage
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hi Michelle,



Thanks for getting things going again. I have to admit that somewhat of
a normal life has crept in to our lives and I have not been keeping up
with the list serves. Collin is doing great. Diagnosed 1/03 with 2
surgeries, 1 round of local radiation, and 3 cyberknife treatments. He
has been off chemo since 1/05 and off Thalidomide since 1/07. We just
had a 6 month MRI this week and are awaiting the info. Collin is in a
3rd grade class, but in a special needs room for his academics.



Congrats on hearing all the good things from everyone. I would like to
keep in touch. I would also like to keep hearing about Owen's upcoming
surgery. Collin's tumor was also in the left frontal lobe. He does have
minor seizures but they are controlled by Keppra. He has math, language
and recall issues all pertaining to that side of the brain. I have heard
that once the connection in the brain is cut that the right side will
take over. I just wonder if this would help Collin. He is learning but
it is a slow process. He is 10 but probably acts and functions like a 6
or 7 year old.



Great to hear from everyone,

Kelley



________________________________

From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
Michelle
Sent: Sunday, July 06, 2008 12:54 PM
To: ATRT@yahoogroups.com
Subject: [ATRT] Hello & Welcome



Hello,

My name is Michelle Kees and I am the mother of Andrew Padfield.
Andrew was diagnosed with ATRT in August 2007 and is in week #36 of
51 on the DFCI/IRS-III protocol.

I am a member of the Pediatric Brain Tumor Listserve on Yahoo, and
have gained tremendous support and knowledge from the other members
over the past year. In recent months, I have been communicating at
length with a number of other parents whose children have ATRT.

These conversations often centered on treatment options, scientific
literature, nutritional homepathic possibilities, new avenues for
preventing relapse, and in-depth explorations of genetics and
hsnf5/INI1. I think we have learned alot from one another, but it
seemed like there was a missing piece - all the other ATRT
families. I felt like my email conversations have been repetitive,
but with different families. And I wondered if maybe other families
were having similar conversations, and perhaps I was missing out on
some new information that could be important for Andrew's
treatment.

I contacted Loice, the moderator for the ATRT Listserve on Yahoo,
and asked her thoughts about getting our Listserve up and going
again. And here I am. Emailing each of you already on the
listserve, and emailing other ATRT families that I know and asking
them to also join this listserve. Given the similarities between
ATRT and other Rhabdoid tumors, we also welcome Rhabdoid families.

I'd like this listserve to be a source of support and encouragement
for newly diagnosed families, families in treatment, families who
have completed treatment, and families whose children have become
angels. I think we all have something to share. I also hope that
this listserve will become The Place to come to learn scientifically-
based information about treatment options. In the coming weeks, I
will be posting articles and other information in the Files
section. I encourage each of you to do so too, and to add your
child's story to the Folder "Our Children" under the Files section.

We have all had unique experiences and have good information to
share with one another. At our very core, we want the same thing:
for our child to be cured. Through the re-igniting of the ATRT
Yahoo group, I hope that we can make a difference for our children
and for those children yet to be diagnosed.

Michelle
www.carepages.com andrewpadfieldcarepage





[Non-text portions of this message have been removed]

Thanks for sharing your story with us. It is amazing to hear about your journey
and it feel a bit similar to ours. Many congratulations to you all.
Maria with Olivia, 11
4 years off treatment
http://groups.msn.com/OliviaSamuel/_whatsnew.msnw



To: ATRT@...: netty365@...: Sat, 12 Jul 2008 00:59:01
+0000Subject: [ATRT] Next Month Jared - 5 years out of treatment




HiI see a lot of names I recognize. Seems like without the updates being sent
automatically, a lot of us have lost touch with the other Rhabdoid Kids
families. I liked getting the emails and being kept upto date and seeing more
children completing treatment and surviving. I also tried to contact new
families who recently were told that their child had ATRT and let them know that
Jared is doing well and is out for so long.Actually, next month it will be 5
years that Jared completed the final phase of the protocol and (knocking wood &
crossing fingers). that was the last time he was in the hospital. Since, he has
graduated preschool, has a little brother he loves and improves everyday. The
tumor did do some damage to the brain. He is in special education but has come
so far in the past 2 years. for educational purposes his is considered Traumatic
Brain Injury. It is his memory processing that has the large deficit but we are
looking into a new therapy to help train his brain to compensate and find a new
way for him to remember and process information. We spend so much time dealing
with schooling, therapies, etc. that we really only think about the cancer when
it is time for an MRI. 5 years ago it consumed us and I never thought we would
have life that would resemble anything close to normal. but we do have a good
life now.As always if anyone has any questions, please feel free to email. I see
several names of children here that were diagnosed around the same time as Jared
and see they are still okay also. This also gives me more hope and some relief.
We still live with the fear that it could return.netty






[Non-text portions of this message have been removed]

Hi Netty,

5 years is AWESOME!!!!!!!!!!!!!!

Could you tell us newcomers a bit more about Jared.  I am really
interested to hear more about what treatment protocol he was on
(since it clearly worked!!!!) and also whether your family ever did
the genetic testing for INI deletion.

It is wonderful to have folks like you on this listserve to help
guide us through and share hope.  Thank you.

Michelle, m/o Andrew
www.carepages.com  andrewpadfieldcarepage

--- In ATRT@yahoogroups.com, "netty365" <netty365@...> wrote:
>
> Hi
> I see a lot of names I recognize.  Seems like without the updates
> being sent automatically, a lot of us have lost touch with the
other
> Rhabdoid Kids families.  I liked getting the emails and being kept
> upto date and seeing more children completing treatment and
> surviving.  I also tried to contact new families who recently were
> told that their child had ATRT and let them know that Jared is
doing
> well and is out for so long.
>
> Actually, next month it will be 5 years that Jared completed the
final
> phase of the protocol and (knocking wood & crossing fingers).
that
> was the last time he was in the hospital.  Since, he has graduated
> preschool, has a little brother he loves and improves everyday.
The
> tumor did do some damage to the brain. He is in special education
but
> has come so far in the past 2 years. for educational purposes his
is
> considered Traumatic Brain Injury.  It is his memory processing
that
> has the large deficit but we are looking into a new therapy to
help
> train his brain to compensate and find a new way for him to
remember
> and process information.  We spend so much time dealing with
> schooling, therapies, etc.  that we really only think about the
cancer
> when it is time for an MRI.  5 years ago it consumed us and I
never
> thought we would have life that would resemble anything close to
> normal.  but we do have a good life now.
>
> As always if anyone has any questions, please feel free to email.
I
> see several names of children here that were diagnosed around the
same
> time as Jared and see they are still okay also.  This also gives
me
> more hope and some relief.  We still live with the fear that it
could
> return.
>
> netty
>

Wow 5 years!!!!  That is fantastic.  My son Owen will be two years
off treatment in October.  What a long process but well worth it.
Owen has done pretty good, he has right sided weakness from where his
tumor was located, and he started having seizures a year ago.  We
have tried a lot of medications and no luck.  We had to make a big
decision to have another surgery, a functioning hemisphrectomy. They
will be taking out the rest of his frontal lobe (left side) and
disconnecting the right side from the left side by cutting the
Corpus callosotomy.  This will stop his seizures and he already had
the right sided weakness so it won't change any of that.
I'm so happy to hear about Jared.
Cyndi Lyons
www.caringbridge.org/visit/owenlyons

--- In ATRT@yahoogroups.com, "netty365" <netty365@...> wrote:
>
> Hi
> I see a lot of names I recognize.  Seems like without the updates
> being sent automatically, a lot of us have lost touch with the
other
> Rhabdoid Kids families.  I liked getting the emails and being kept
> upto date and seeing more children completing treatment and
> surviving.  I also tried to contact new families who recently were
> told that their child had ATRT and let them know that Jared is
doing
> well and is out for so long.
>
> Actually, next month it will be 5 years that Jared completed the
final
> phase of the protocol and (knocking wood & crossing fingers).  that
> was the last time he was in the hospital.  Since, he has graduated
> preschool, has a little brother he loves and improves everyday.
The
> tumor did do some damage to the brain. He is in special education
but
> has come so far in the past 2 years. for educational purposes his
is
> considered Traumatic Brain Injury.  It is his memory processing
that
> has the large deficit but we are looking into a new therapy to help
> train his brain to compensate and find a new way for him to
remember
> and process information.  We spend so much time dealing with
> schooling, therapies, etc.  that we really only think about the
cancer
> when it is time for an MRI.  5 years ago it consumed us and I never
> thought we would have life that would resemble anything close to
> normal.  but we do have a good life now.
>
> As always if anyone has any questions, please feel free to email. I
> see several names of children here that were diagnosed around the
same
> time as Jared and see they are still okay also.  This also gives me
> more hope and some relief.  We still live with the fear that it
could
> return.
>
> netty
>

Hi
I see a lot of names I recognize.  Seems like without the updates
being sent automatically, a lot of us have lost touch with the other
Rhabdoid Kids families.  I liked getting the emails and being kept
upto date and seeing more children completing treatment and
surviving.  I also tried to contact new families who recently were
told that their child had ATRT and let them know that Jared is doing
well and is out for so long.

Actually, next month it will be 5 years that Jared completed the final
phase of the protocol and (knocking wood & crossing fingers).  that
was the last time he was in the hospital.  Since, he has graduated
preschool, has a little brother he loves and improves everyday.  The
tumor did do some damage to the brain. He is in special education but
has come so far in the past 2 years. for educational purposes his is
considered Traumatic Brain Injury.  It is his memory processing that
has the large deficit but we are looking into a new therapy to help
train his brain to compensate and find a new way for him to remember
and process information.  We spend so much time dealing with
schooling, therapies, etc.  that we really only think about the cancer
when it is time for an MRI.  5 years ago it consumed us and I never
thought we would have life that would resemble anything close to
normal.  but we do have a good life now.

As always if anyone has any questions, please feel free to email. I
see several names of children here that were diagnosed around the same
time as Jared and see they are still okay also.  This also gives me
more hope and some relief.  We still live with the fear that it could
return.

netty

Hello,

My name is Michelle Kees and I am the mother of Andrew Padfield.
Andrew was diagnosed with ATRT in August 2007 and is in week #36 of
51 on the DFCI/IRS-III protocol.

I am a member of the Pediatric Brain Tumor Listserve on Yahoo, and
have gained tremendous support and knowledge from the other members
over the past year.  In recent months, I have been communicating at
length with a number of other parents whose children have ATRT.

These conversations often centered on treatment options, scientific
literature, nutritional homepathic possibilities, new avenues for
preventing relapse, and in-depth explorations of genetics and
hsnf5/INI1.  I think we have learned alot from one another, but it
seemed like there was a missing piece - all the other ATRT
families.  I felt like my email conversations have been repetitive,
but with different families.  And I wondered if maybe other families
were having similar conversations, and perhaps I was missing out on
some new information that could be important for Andrew's
treatment.

I contacted Loice, the moderator for the ATRT Listserve on Yahoo,
and asked her thoughts about getting our Listserve up and going
again.  And here I am.  Emailing each of you already on the
listserve, and emailing other ATRT families that I know and asking
them to also join this listserve.  Given the similarities between
ATRT and other Rhabdoid tumors, we also welcome Rhabdoid families.

I'd like this listserve to be a source of support and encouragement
for newly diagnosed families, families in treatment, families who
have completed treatment, and families whose children have become
angels.  I think we all have something to share.  I also hope that
this listserve will become The Place to come to learn scientifically-
based information about treatment options.  In the coming weeks, I
will be posting articles and other information in the Files
section.  I encourage each of you to do so too, and to add your
child's story to the Folder "Our Children" under the Files section.

We have all had unique experiences and have good information to
share with one another.  At our very core, we want the same thing:
for our child to be cured.  Through the re-igniting of the ATRT
Yahoo group, I hope that we can make a difference for our children
and for those children yet to be diagnosed.

Michelle
www.carepages.com  andrewpadfieldcarepage

Welcome to the AT/RT group.  I am sorry for your circumstances that bring you
here and I am sorr that I do not know your name.  When you feel ready I would
like to know more about Mitchell.

This group is a small group with just a little activity related specifically to
ATRTs; however, many here also belong to other listserves/yahoogroups.  I happen
to also be a moderator for PedaitricBrainTumors and PBT Angels.  PBT is a high
volume group of almost 700 members dealing with all types of brain tumors at all
stages of this journey.  There are Angel parents on that list.  PBT Angels is
specifically for those parents that have run out of medical options or parents
of Angels.  This might be a group you would find support, comfort and advice.
http://health.groups.yahoo.com/group/PBTAngels/<http://health.groups.yahoo.com/g\
roup/PBTAngels/>

Also you might be interested in Rhadoid Kids.  I looked and did not see your
address on the discussion board so I am unsure if you are aware of this site.
http://rhabdoidkids.com/Kids.htm<http://rhabdoidkids.com/Kids.htm>

BTW-  sent this on and off list so that  you would not miss your introduction as
it seems yahoogroups has had some delay on getting new members on the post
distribution list.  To reply to the list chose reply all or ATRT@yahoogroups.com

Thinking of you,
Loice Swisher
list owner, ATRT


------------------------
Our son Mitchell was diagnosed on March 2nd and passed away on March 19th. He
presented as a very happy beautiful baby. We miss our little guy so much.

[Non-text portions of this message have been removed]

Please welcome Paracat22 from Arkansas

Welcome and I am sorry for your need to be here.  This is a very small
group related to AT/RTs with just alittle activity.  There are others
here whose child has died at a young age.  There are other internet
support group that deal with grieving/lose of a child.  If you would
be interested in that information I am sure we could help with a list
for you.

When you are ready, please tell us about Emmy.

With Hope,
Loice Swisher
list owner AT/RT

My exhusband and my 2 sons ages 11 and 12 just lost their baby sister
to atrt cns/primary spinal at the age of just 17 months. I was blessed
to get to help take care of Emmy.

Chelsea,
   I am so sorry.  I don't know what advice to give but I will be praying that
you have peace with the one you do make.  Remember that what ever decision you
make you are doing the right thing for Caden.
   Love and lots of prayers,
   Karrie Bomar

marleecaden <cye_of_torrent_74@...> wrote:
   I have typed this on microsoft word while waiting for the phoneline
at my aunt's to open up (she has dialup internet), so I apologize
for the copy-pasting.

I'm not sure how to say this…during breakfast this morning, Caden
did fine. Afterwards, she turned an odd shade of purple and her
heartrate began fluctuating wildly. Of course, we called an
ambulance and she was airlifted from our local hospital to the one
we're being treated at (3 ½ hours away).
While doctors and nurses were trying to stablize her, the head of
radiology came in to talk to me. Caden has relapsed. There is a
small spot dead center in her medulla oblongata (a part that is not
being radiated). The adjuvant chemo has failed.
Once her heart rate was a little better, we had a full-body MRI.
There are seven small tumors between C-6 and her coccyx. Five are in
the cord itself, one is in the spinal meninges, and one is in the T-
10 vertebral bone. That makes a total of nine tumors known,
including the remaining primary tumor.
She had an MRI yesterday, and they saw the shadow in her medulla
oblongata, but they did not know what it was, or tell me about it…
they sent it to the head of radiology, who said it's tumor. He says
they are probably ALL bigger than they appear due to the steroids
she's on. He thinks that's why there've been no symptoms until today.
The medulla oblongata tumor is about the size of a half-used pencil
eraser. Four of the spinals are marble-sized, one is a little bit
bigger, and two are flattened half-moon shaped ones cupping her
spinal cord.
They've given us three options: take her home and enjoy what time we
have left, put her in a drug coma until she dies, or try some
extremely aggressive chemo. I know I don't want to put her through
any more treatment, as they are saying it probably will not work and
we won't be able to start it for a few weeks. I am struggling with
the drug coma and just taking her home…she knows something is wrong.
She had no symptoms until today; our last craniospinal MRI was a
little over five weeks ago, and there was nothing on that one. I had
no idea any cancer could grow and spread that fast…
When her heartrate jumps or drops, she gets anxious and fussy and
obviously scared…I don't know how to ease this for her. This is the
only reason I am entertaining the idea of a drug coma, to keep her
fears away and make this easier for her. What do I do? Help me…

A very distraught
, Caden, and Marlee
Dx 7/5/05 ATRT, 5 cycles high-dose chemo, 15 days of rads w/
adjuvant chemo…eight new tumors 1/21/06…no treatment options left.






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[Non-text portions of this message have been removed]

Chelsea,



My heart is breaking for you. I don't want to even imagine the shock of this new
news. I only know to ask GOD to give strength and help in making these awful
decisions. I wish I could say more...I wish I could think of something that
would change things...I will also pray for comfort and peace.



Kelley m/o Collin



-----Original Message-----
From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
marleecaden
Sent: Saturday, January 21, 2006 10:48 AM
To: ATRT@yahoogroups.com
Subject: [ATRT] relapse - ending treatment



I have typed this on microsoft word while waiting for the phoneline
at my aunt's to open up (she has dialup internet), so I apologize
for the copy-pasting.

I'm not sure how to say this...during breakfast this morning, Caden
did fine. Afterwards, she turned an odd shade of purple and her
heartrate began fluctuating wildly. Of course, we called an
ambulance and she was airlifted from our local hospital to the one
we're being treated at (3 ½ hours away).
While doctors and nurses were trying to stablize her, the head of
radiology came in to talk to me. Caden has relapsed. There is a
small spot dead center in her medulla oblongata (a part that is not
being radiated). The adjuvant chemo has failed.
Once her heart rate was a little better, we had a full-body MRI.
There are seven small tumors between C-6 and her coccyx. Five are in
the cord itself, one is in the spinal meninges, and one is in the T-
10 vertebral bone. That makes a total of nine tumors known,
including the remaining primary tumor.
She had an MRI yesterday, and they saw the shadow in her medulla
oblongata, but they did not know what it was, or tell me about it...
they sent it to the head of radiology, who said it's tumor. He says
they are probably ALL bigger than they appear due to the steroids
she's on. He thinks that's why there've been no symptoms until today.
The medulla oblongata tumor is about the size of a half-used pencil
eraser. Four of the spinals are marble-sized, one is a little bit
bigger, and two are flattened half-moon shaped ones cupping her
spinal cord.
They've given us three options: take her home and enjoy what time we
have left, put her in a drug coma until she dies, or try some
extremely aggressive chemo. I know I don't want to put her through
any more treatment, as they are saying it probably will not work and
we won't be able to start it for a few weeks. I am struggling with
the drug coma and just taking her home...she knows something is wrong.
She had no symptoms until today; our last craniospinal MRI was a
little over five weeks ago, and there was nothing on that one. I had
no idea any cancer could grow and spread that fast...
When her heartrate jumps or drops, she gets anxious and fussy and
obviously scared...I don't know how to ease this for her. This is the
only reason I am entertaining the idea of a drug coma, to keep her
fears away and make this easier for her. What do I do? Help me...

A very distraught
Chelsea, Caden, and Marlee
Dx 7/5/05 ATRT, 5 cycles high-dose chemo, 15 days of rads w/
adjuvant chemo...eight new tumors 1/21/06...no treatment options left.







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[Non-text portions of this message have been removed]

I have typed this on microsoft word while waiting for the phoneline
at my aunt's to open up (she has dialup internet), so I apologize
for the copy-pasting.

I'm not sure how to say this…during breakfast this morning, Caden
did fine. Afterwards, she turned an odd shade of purple and her
heartrate began fluctuating wildly. Of course, we called an
ambulance and she was airlifted from our local hospital to the one
we're being treated at (3 ½ hours away).
While doctors and nurses were trying to stablize her, the head of
radiology came in to talk to me. Caden has relapsed. There is a
small spot dead center in her medulla oblongata (a part that is not
being radiated). The adjuvant chemo has failed.
Once her heart rate was a little better, we had a full-body MRI.
There are seven small tumors between C-6 and her coccyx. Five are in
the cord itself, one is in the spinal meninges, and one is in the T-
10 vertebral bone. That makes a total of nine tumors known,
including the remaining primary tumor.
She had an MRI yesterday, and they saw the shadow in her medulla
oblongata, but they did not know what it was, or tell me about it…
they sent it to the head of radiology, who said it's tumor. He says
they are probably ALL bigger than they appear due to the steroids
she's on. He thinks that's why there've been no symptoms until today.
The medulla oblongata tumor is about the size of a half-used pencil
eraser. Four of the spinals are marble-sized, one is a little bit
bigger, and two are flattened half-moon shaped ones cupping her
spinal cord.
They've given us three options: take her home and enjoy what time we
have left, put her in a drug coma until she dies, or try some
extremely aggressive chemo. I know I don't want to put her through
any more treatment, as they are saying it probably will not work and
we won't be able to start it for a few weeks. I am struggling with
the drug coma and just taking her home…she knows something is wrong.
She had no symptoms until today; our last craniospinal MRI was a
little over five weeks ago, and there was nothing on that one. I had
no idea any cancer could grow and spread that fast…
When her heartrate jumps or drops, she gets anxious and fussy and
obviously scared…I don't know how to ease this for her. This is the
only reason I am entertaining the idea of a drug coma, to keep her
fears away and make this easier for her. What do I do? Help me…

A very distraught
Chelsea, Caden, and Marlee
Dx 7/5/05 ATRT, 5 cycles high-dose chemo, 15 days of rads w/
adjuvant chemo…eight new tumors 1/21/06…no treatment options left.

I forgot to include her page www.caringbridge.com/visit/caden

Michelle,

Glad you made it over here to one of these groups. I hope you find them
helpful (I have). How is Kaitlyn today? And, how are you doing?
This list isn't very active; they don't seem to respond to much except
questions, but they are helpful.

Much much love,
Chelsea, Caden, and Marlee

--- In ATRT@yahoogroups.com, "Ask" <tinkrbel24@y...> wrote:
>
> Thank You Loice for inviting me to Join PBT Angels. At this point I
am
> finding that my biggest support is from message boards and different
> online groups. And to actually be able to talk to other parents that
> have gone through the same thing or are going through it. Again thank
> you for welcoming me to both groups.
>
> Michelle
>

Thank You Loice for inviting me to Join PBT Angels. At this point I am
finding that my biggest support is from message boards and different
online groups. And to actually be able to talk to other parents that
have gone through the same thing or are going through it. Again thank
you for welcoming me to both groups.

Michelle

Please welcome Michelle and her daughter Kaitlyn to the list.

Michelle,
I am so sorry for your need to be here.  Obviously I have read your
websites (at least partially).  The pictures are wonderful.  I hope
your trip turns out well.

Now about the difficult things.  I saw that you were talking about
having thoughts of arrangements so that when Kaitlyn is an Angel
things are not so rushed.  I thought another group might be helpful
to you as well- PBT Angels.  That is a group solely for caretakers
of kids that have run out of options with brain/spinal tumors or
have died.  I am a moderator on that group.  It is a pretty good
group where one can share their feelings and ask difficult questions.
http://health.groups.yahoo.com/group/PBTAngels/  There are about 60
members in that group.

My thoughts and prayers are with you.

Loice Swisher
moderator of the AT/RT list

------------------original message-------------------
I have a 8 month old daughter with Rhadoid of the spine. She is
currently home on hospice.
www.caringbridge.org/visit/kaitlynschwartz

Thank you. Loice has told me about your son (just that he had ATRT and is alive
5 years later). Caden is also undergoing intensive chemotherapy. She will need
stem cell rescue after her fourth and fifth cycles, then four weeks after the
end of her fifth cycle is when we are looking at conformal radiation. Proton
beam is not an option for her, although I cannot remember why at this moment. We
have been fortunate enough to avoid any major bleeds (knock on wood!), and we
had an MRI today that showed a very small amount of shrinkage (it's at least
responding! hurray!). I am leaning toward doing radiation, because there don't
seem to be any other options besides just letting her die without a fight...and
I will not do that.

How disabled do you mean by 'quite disabled', if you don't mind me asking? It is
a blessing that he is happy. I don't care if Caden is disabled or anything as
long as she's happy...even if that means she has to leave us to be where she
truly is joyful. But I'm not giving her up without a fight.

thanks for emailing us and offering your help

Chelsea, Marlee, and Caden

Caden is getting a caringbridge site set up for her -
www.caringbridge.com/visit/caden I believe is the URL.


---------------------------------
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[Non-text portions of this message have been removed]

I am sorry to hear about your little girl's battles.  Our son, Sean,  was
diagnosed at 10 months and went through intensive chemo, followed by 3-D
Conformal Radiation.  He was treated in California for chemo, but we went  to
Boston
at MGH for radiation.  He was about 16 months old when he was  radiated.

The best thing I can tell you is that Sean is with us today, in spite of  the
horrible diagnosis...5 years later!  He did suffer from Cerebellar
Mutism/Posterior Fossa Syndrome after his first surgery which we later learned 
was
actually that he suffered a stroke that day...he is quite disabled as a  result.

We got some really good info from St. Judes on their most recent studies
about radiation (which I am sure have been updated many times in the past 5
years)...but it helped us to make our decision to proceed.

I cannot answer for your family if what we face every day now is worth it,
but for my family...it most certainly is...Sean is disabled, but most
importantly, he is happy.

If you would like to talk more, please feel free to email me and we can try
and connect.

One last piece of advice I would say is to remember that there is no false
hope...regardless of the outcome, hope is what gets you out of bed each day to
face the battle...and that is not false.

In hope,

Danielle McCauley
Mom of Sean and Connor
Sean was born 1/11/00 - dx 11/29/00 - clear MRI 5/25/05 - 5 year  anniversary
coming up!
_www.seanmccauley.com_ (http://www.seanmccauley.com)
_www.seanshope.org_ (http://www.seanshope.org)



[Non-text portions of this message have been removed]