I agree with the statement made about not agreeing with the
diagnosis!  I sent you an email to your yahoo account, but to confirm
the point, please don't take one doctor/hospital's report.  We put
lots of faith into our medical teams, but they don't always know every
answer.  Regardless of how good you think they are.   We are very
grateful for their wisdom, and naturally, we think St. Jude is the
best since my nephew is being treated there for AT/RT.  He is one
patient that has survived when they didn't think he would make it past
the first surgery to remove the tumor!  So my advice is to ALWAYS have
hope and faith, and to get other consultations in order to make the
best decision for treatment.  I, too, am sorry you had to learn of
this group, but stand firm and know there is HOPE!

www.caringbridge.org/visit/colecarpenter
Cole's Aunt Faye

Chrissy,
I am sorry that you are now a member of our elite group.  I just  wanted to
pass on this quick bit of advice- don't listen to the prognosis- there  are so
many kids out there that have beat the odds.  I also think that this  type of
cancer is so "new" that things are changing every day.

My son Joey was diagnosed with AT/RT in March of 2007.  He was 7 years  old
at the time (this cancer is typically found in children under 2  years).  His
cancer was found in his neck- it was a tumor that extended  from his left side,
around the caratid artery and between his vertebrae (this  cancer is
typically found in CNS or Kidney).  We did not have surgery to  remove it, but
did
chemo, radiation and a stem cell transplant.

Joey is a year out from transplant.  He is back in school full time,  he
plays soccer and takes Hip Hop classes.  To see him you would never know  that
he
had cancer.

If I believed in the prognosis I would probably be mourning his loss but
instead I celebrate!

Take care and feel free to talk any time.

Suzanne Sudo
_www.carepages.com_ (http://www.carepages.com)    Josephsudo


In a message dated 9/30/2008 7:48:33 P.M. Eastern Daylight Time,
chrissy4u30@... writes:




sorry, i think half of my message got lost. how is your son? did they  remove
all of his tumor? which chemo did you decide on?

--- On Tue,  9/30/08, Toby Padfield <_tpadfield@..._
(mailto:tpadfield@...) >  wrote:

From: Toby Padfield <_tpadfield@..._ (mailto:tpadfield@...) >
Subject:  RE: [ATRT] hi
To: _ATRT@..._ (mailto:ATRT@yahoogroups.com)
Date:  Tuesday, September 30, 2008, 12:25 PM

Chrissy,

I am sorry to  hear about Nicky's diagnosis. Can you provide some additional
information  on the chemotherapy treatment that has been proposed? How much
of the tumor  was removed during the craniotomy? Where is Nicky being
treated?  Unfortunately you have many decisions to make regarding the type
of  treatment that you want for Nicky, and not much time. If you haven't
done  so, you may want to create a website at CarePages (www.carepages.  com
<_http://www.carepage_ (http://www.carepage/)  s.com/> ) or  CaringBridge
(www.caringbridge. com
<_http://www.caringbr_ (http://www.caringbr/)  idge.com/> ). Good luck  with
everything.

Best wishes,

Toby Padfield

Father of  Andrew (2yo dx Sep 2007)

_http://www.carepage_ (http://www.carepage/)  s.com/ (AndrewPadfieldCare
Page)

_____

From: ATRT@yahoogroups. com  [mailto:ATRT@From: ATRT@yahoogroups. com
chrissy4u30
Sent:  Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups. com
Subject:  [ATRT] hi

Hi, i'm not really sure how these support groups work, but  was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago  with
AT/RT, and after surgery we thought it was just the one primary  tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy

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

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







**************Looking for simple solutions to your real-life financial
challenges?  Check out WalletPop for the latest news and information, tips and
calculators.      (http://www.walletpop.com/?NCID=emlcntuswall00000001)


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

Hi Chrissy -
My name is Paige Walsh, and my son, Charlie was diagnosed in March '07
with an ATRT.  We has just shy of his 3rd birthday.  We are 20 months
post diagnosis and Charlie is doing well, again, all things
considered.  In fact, he just recently completed the IRSIII protocol,
including 6 weeks of Intensity Modulated Radiation.  Charlie's tumor
was 100% resected during the craniotomy.  The tumor presented itself in
a rather unusual place - intertwined  with the left optic nerve (that
carries the vision to the left eyeball).  Charlie certainly had his
rough times at the beginning of treatment, but please hang in there.  I
know your head is spinning right now with all the options out there.
I'm so sorry to hear about your son, Nicky.

Andrew is doing quite well, all things considered.  He is a little over 1
year from diagnosis, and the tumor responded very well to the treatment.
The last 2 or 3 MRIs have shown the same thing-only a very tiny remnant in
the original tumor bed, that is possibly just a calcification.  We used the
IRSIII protocol that DFCI created with proton radiotherapy instead of
x-radiation (IMRT, etc.).  The resection during Andrew's craniotomy was only
~ 75%, so it is possible to have residual disease (clinical term) and still
achieve good response.  Good luck with everything and please feel free to
ask any questions.



Best regards,


Toby Padfield





   _____

From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
Chrissy G
Sent: Tuesday, September 30, 2008 7:46 PM
To: ATRT@yahoogroups.com
Subject: RE: [ATRT] hi



sorry, i think half of my message got lost. how is your son? did they remove
all of his tumor? which chemo did you decide on?

--- On Tue, 9/30/08, Toby Padfield <tpadfield@twmi.
<mailto:tpadfield%40twmi.rr.com> rr.com> wrote:

From: Toby Padfield <tpadfield@twmi. <mailto:tpadfield%40twmi.rr.com>
rr.com>
Subject: RE: [ATRT] hi
To: ATRT@yahoogroups. <mailto:ATRT%40yahoogroups.com> com
Date: Tuesday, September 30, 2008, 12:25 PM

Chrissy,

I am sorry to hear about Nicky's diagnosis. Can you provide some additional
information on the chemotherapy treatment that has been proposed? How much
of the tumor was removed during the craniotomy? Where is Nicky being
treated? Unfortunately you have many decisions to make regarding the type
of treatment that you want for Nicky, and not much time. If you haven't
done so, you may want to create a website at CarePages (www.carepages. com
<http://www.carepage s.com/> ) or CaringBridge (www.caringbridge. com
<http://www.caringbr idge.com/> ). Good luck with everything.

Best wishes,

Toby Padfield

Father of Andrew (2yo dx Sep 2007)

http://www.carepage s.com/ (AndrewPadfieldCare Page)

_____

From: ATRT@yahoogroups. com [mailto:ATRT@yahoogroups. com] On Behalf Of
chrissy4u30
Sent: Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups. com
Subject: [ATRT] hi

Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy

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

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





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

sorry, i think half of my message got lost. how is your son? did they remove all
of his tumor? which chemo did you decide on?

--- On Tue, 9/30/08, Toby Padfield <tpadfield@...> wrote:

From: Toby Padfield <tpadfield@...>
Subject: RE: [ATRT] hi
To: ATRT@yahoogroups.com
Date: Tuesday, September 30, 2008, 12:25 PM






Chrissy,

I am sorry to hear about Nicky's diagnosis. Can you provide some additional
information on the chemotherapy treatment that has been proposed? How much
of the tumor was removed during the craniotomy? Where is Nicky being
treated? Unfortunately you have many decisions to make regarding the type
of treatment that you want for Nicky, and not much time. If you haven't
done so, you may want to create a website at CarePages (www.carepages. com
<http://www.carepage s.com/> ) or CaringBridge (www.caringbridge. com
<http://www.caringbr idge.com/> ). Good luck with everything.

Best wishes,

Toby Padfield

Father of Andrew (2yo dx Sep 2007)

http://www.carepage s.com/ (AndrewPadfieldCare Page)

_____

From: ATRT@yahoogroups. com [mailto:ATRT@yahoogroups. com] On Behalf Of
chrissy4u30
Sent: Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups. com
Subject: [ATRT] hi

Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy

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


















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

hi, his oncologist wanted to do the oral, intrathecal, and iv. DFCI IRB protocol
#02-294
his craniotomy was on 9-2-08, and they removed 80%. we'r being treated at boston
childerns hospital. their prognosis isn't good, we're going to try the chemo, if
it does not work, we'll think about other options.  We did make a carepage.
From: Toby Padfield <tpadfield@...>

--- On Tue, 9/30/08, Toby Padfield <tpadfield@...> wrote:

Subject: RE: [ATRT] hi
To: ATRT@yahoogroups.com
Date: Tuesday, September 30, 2008, 12:25 PM






Chrissy,

I am sorry to hear about Nicky's diagnosis. Can you provide some additional
information on the chemotherapy treatment that has been proposed? How much
of the tumor was removed during the craniotomy? Where is Nicky being
treated? Unfortunately you have many decisions to make regarding the type
of treatment that you want for Nicky, and not much time. If you haven't
done so, you may want to create a website at CarePages (www.carepages. com
<http://www.carepage s.com/> ) or CaringBridge (www.caringbridge. com
<http://www.caringbr idge.com/> ). Good luck with everything.

Best wishes,

Toby Padfield

Father of Andrew (2yo dx Sep 2007)

http://www.carepage s.com/ (AndrewPadfieldCare Page)

_____

From: ATRT@yahoogroups. com [mailto:ATRT@yahoogroups. com] On Behalf Of
chrissy4u30
Sent: Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups. com
Subject: [ATRT] hi

Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy

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


















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

Chrissy,



I am sorry to hear about Nicky's diagnosis.  Can you provide some additional
information on the chemotherapy treatment that has been proposed?  How much
of the tumor was removed during the craniotomy?  Where is Nicky being
treated?  Unfortunately you have many decisions to make regarding the type
of treatment that you want for Nicky, and not much time.  If you haven't
done so, you may want to create a website at CarePages (www.carepages.com
<http://www.carepages.com/> ) or CaringBridge (www.caringbridge.com
<http://www.caringbridge.com/> ).  Good luck with everything.





Best wishes,



Toby Padfield

Father of Andrew (2yo dx Sep 2007)

http://www.carepages.com/ (AndrewPadfieldCarePage)





   _____

From: ATRT@yahoogroups.com [mailto:ATRT@yahoogroups.com] On Behalf Of
chrissy4u30
Sent: Monday, September 29, 2008 8:55 PM
To: ATRT@yahoogroups.com
Subject: [ATRT] hi



Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1, If anyone
has advice I'll be glad to take it.

Chrissy





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

Hi, i'm not really sure how these support groups work, but was given
the site by our nurse. My son Nicky was diagnosed 4 weeks ago with
AT/RT, and after surgery we thought it was just the one primary tumor,
but five new tumors were found on his spine today. We are
starting chemo on oct 1,  If anyone
has advice I'll be glad to take it.


                                             Chrissy

Welcome new member, suzsudo <KCJoeNSuz@...>  who joined saying their son
that was diagnosed with AT/RT in March of 2007.

Does your son have a carepage?  Where are you being treated?  Is there anything
specific that we can help you with right now?

Michelle
m/o Andrew, diagnosed with ATRT at 17 months old in 8/07
www.carepages.com  andrewpadfieldcarepage
_________________________________________________________________
Want to do more with Windows Live? Learn “10 hidden secrets” from Jamie.
http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!550F68\
1DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

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

Amifostine protects against cisplatin-induced ototoxicity in children with
average-risk medulloblastoma Fouladi M, Chintagumpala M, Ashley D, Kellie S,
Gururangan S, Hassall T, Gronewold L, Stewart CF, Wallace D, Broniscer A, Hale
GA, Kasow KA, Merchant TE, Morris B, Krasin M, Kun LE, Boyett JM, Gajjar A. J
Clin Oncol. 2008 Aug 1;26(22):3749-55


Corresponding author: Maryam Fouladi, MD, Department of Oncology, St Jude
Children's Research Hospital, 332 North Lauderdale, Memphis, TN 38105-2794;
e-mail: maryam.fouladi@...



ABSTRACT
Purpose: To determine the role of amifostine as a protectant against
cisplatin-induced ototoxicity in patients with average-risk (AR) medulloblastoma
treated with craniospinal radiotherapy and four cycles of cisplatin-based,
dose-intense chemotherapy and stem-cell rescue.
Patients and Methods: The primary objective was to determine whether, in
patients with AR medulloblastoma (n = 62), amifostine would decrease the need
for hearing aids (defined as  grade 3 ototoxicity in one ear) compared with a
control group (n = 35), 1 year from initiating treatment. Ninety-seven patients
received craniospinal irradiation (23.4 Gy) followed by 55.8 Gy to the primary
tumor bed using three-dimensional conformal technique, and four cycles of
high-dose cyclophosphamide (4,000 mg/m2/cycle), cisplatin (75 mg/m2/cycle), and
vincristine (two 1.5 mg/m2 doses/cycle) and stem-cell rescue. When used,
amifostine (600 mg/m2/dose) was administered as a bolus immediately before and 3
hours into the cisplatin infusion.
Results: The median age of the 97 patients was 8.7 years (range, 3.2 to 20.2
years). The study and control groups were similar in age and sex distribution.
Amifostine was well-tolerated. One year after treatment initiation, 13 patients
(37.1%) in the control group versus nine (14.5%; one-sided 2 test P = .005) of
the amifostine-treated patients had at least grade 3 ototoxicity, requiring
hearing aid in at least one ear.
Conclusion: Amifostine administered before and during the cisplatin infusion can
significantly reduce the risk of severe ototoxicity in patients with AR
medulloblastoma receiving dose-intense chemotherapy.
Supported in part by National Cancer Institute Grant No. P30 CA21765, the
Pediatric Brain Tumor Foundation, the Noyes Brain Tumor Foundation, Musicians
Against Childhood Cancer, the Ryan McGhee Foundation, and the American Lebanese
Syrian Associated Charities.

_________________________________________________________________
See what people are saying about Windows Live.  Check out featured posts.
http://www.windowslive.com/connect?ocid=TXT_TAGLM_WL_connect2_082008

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

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 > > > > > >
__________________________________________________________> 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]>
>
>
>
>
>
> _________________________________________________________________
> 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]
>

Just wanted to say congrats to Zoe and her family for completing treatment. Also
to Owen,  i have followed his story and he is such a brave little man, and Cyndi
is always such a great contributer to the list and Rhabdoid Kids.  I do not post
much, but always read.  My son is Ben Sherlock who was dx with AT/RT is Jul 04. 
His tumor was located in the front right lobe and was fully resected.  He was 3
1/2 at dx and recieved the IRS III protocol with intrathecial chemo, and then a
tandem stem cell transplant.  He has been off treatment since Apr 05, and was
having an MRI every 3 months until this past January when it went to every 6
months.  We just had one last Monday and all is well.  As far as lasting side
effects goes, we have been very lucky.  He does have some hearing loss, which
does seem to go up and down, which they said it would not do.  Some learning
issues, many around reading, but not far off the norm.  He has only been
admitted
  twice since discharge, and both times for a viral infection and they were being
cautious.  He is a happy healthy and extremely energetic 7 yr old.  He is away
at camp right now for 2 weeks, watersking and rockclimbing and keeping his
counsellors busy I am sure.  Ben did not receive any radiation, by our choice
and his doctors.  At the time in 2004, rads were not showing any better
prognosis then stem cell transplant, and the risk for long term side effects
fora 3 1/2 yr old were much greater.  I do beleive unfortunalty it is very
random with little medical explanation as to why some kids respond where others
do not. It has been a rough month in the AT/RT world and just wanted to bring
some hope that there are longer term survivors.  Any questions are welcome, and
my thoughts and prayers are with all your children.
 
Regards
Jennifer Sherlock
mom to Ben 7 (dx Jul 04 AT/RT) and Carly 10



--- On Fri, 8/8/08, M Kees <mkees73@...> wrote:

From: M Kees <mkees73@...>
Subject: RE: [ATRT] Re: Zoe finished treatment
To: atrt@yahoogroups.com
Received: Friday, August 8, 2008, 3:04 PM







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@yahoogroups. comFrom: superowenrules@ yahoo.comDate: 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 treatmentinformatio n 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 literaturereference s 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 andrewpadfieldcarep age> > > > To: ATRT@...: metteearlywine@
...: Thu, 7 Aug 2008 06:03:21+0000Subjec t: [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.> http://www.windowsl
ive.com/default. html?ocid= TXT_TAGLM_ WL_Home2_ 082008> > [Non-text portions of
this message have been removed]>

____________ _________ _________ _________ _________ _________ _
Get more from your digital life. Find out how.
http://www.windowsl ive.com/default. html?ocid= TXT_TAGLM_ WL_Home2_ 082008

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















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

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.>
http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home2_082008> >
[Non-text portions of this message have been removed]>





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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]

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

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





_________________________________________________________________
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]

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