ATRT : Messages : 153-183 of 183

Hi atrt@yahoogroups.com,

I set up a Facebook profile where I can post my pictures, videos and events and
I want to add you as a friend so you can see it. First, you need to join
Facebook! Once you join, you can also create your own profile.

Thanks,
Danielle

To sign up for Facebook, follow the link below:
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atrt@yahoogroups.com was invited to join Facebook by Danielle McCauley. If you
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Reply | Forward | Messages in this Topic (1)

#182

From: "loicebill" <middletonswisher@...>
Date: Tue Nov 25, 2008 12:27 am
Subject: Holiday Awareness Tree for Pediatric Brain Tumors

loicebill

Offline

The foundation, Smiles for Sophie Forever, is creating an "awareness
tree" for the holiday season to raise awareness about pediatric
brain tumors.  The tree will be on display in the medical building
in Westlake Ohio.  The idea is to decorate different colored
ornaments with the names of those children afflicted (fighting and
deceased) and their diagnosis.

If you would like your child to be included on this tree, please
email the following info emily@... by
December 4th:

child's name
age
diagnosis
date of diagnosis (and date of death if appropriate)
{Tell them that you came from ATRT because I think Emily would like
to know how people found out about this}

A picture of the of this rainbow/gray ribbon tree will be made
available- not sure if it will be sent by email or on the
Foundation's website.

There is no cost but the foundation is accepting donations.  You can
visit the foundation to donate and every little bit helps.
www.smilesforsophieforever.org

+++++++++++++++++++++++++++
I personally know of Emily- Sophie's mom- through the DIPG
yahoogroup.  Smiles for Sophie Forever- A Foundation Confronting
Pediatric Brain Tumors was inspired and in memory of Sophie
Elizabeth Quayle.  In February of 2007 Sophie Elizabeth Quayle, at
age three, was diagnosed with a diffuse intrinsic pontine glioma.
Sweet Sophie Girl left this earthly world at 11:55 p.m. on October
6, 2007.

Sophie loved all the colors so a rainbow was chosen as a symbol for
this foundation and holds very special meaning.  The family invites
you "to appreciate all the colors in your life and think of Sophie
each time you are blessed with the sight of a rainbow."
http://www.smilesforsophieforever.org/rainbow.asp
Hence the rainbow and of course the gray is the color to represent
brain tumors.

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#181

From: M Kees <mkees73@...>
Date: Sat Oct 25, 2008 3:34 pm
Subject: Phone interview for ATRT families with Dr. Jaclyn Biegel of CHOP - 12/3 @ 7PM ET

mkees73

Offline

Phone interview for ATRT families with Dr. Jaclyn Biegel of CHOP - 12/3 @ 7PM ET



Jeff Shaddix, Jonathan Shaddix's dad, has talked with Dr. Jaclyn Biegel, the
leading expert in genetics of ATRT and she has graciously agreed to do a
telephone conference with ATRT families.  More information can be found on the
Cancer Family Forum webpage
http://www.cancerfamily.org/forum/showthread.php?t=40.

----------

Your Cancer Family will be hosting a phone interview with Dr. Jaclyn Biegel of
Children's Hospital of Philadelphia on December 3 at 7:00PM ET. Dr. Biegel is
the leading expert in the United States (and possibly the world) regarding the
biology and genetics of AT/RT. This will be an open-invitation event, and anyone
with an interest in AT/RT can dial in and participate. I will provide a
toll-free call in number and passcode once they are established. If you are
interested in joining in the interview, please email me, send me a private
message at shadmanj@..., or post up any questions you would like to ask
Dr. Biegel. I will provide her with a list of the questions I have received a
couple weeks in advance so she may have time to research the questions and have
the information you are requesting in front of her to provide the best possible
answer. Even if you do not have a question to ask, and simply want to listen in,
please let me know so I can have an idea of how many phone connections to
request for the interview.Please pass the word to anyone you believe may have an
interest in learning more about Dr. Biegel's research.From Dr. Biegel's CHOP
website:





Research Summary:I am a cancer geneticist with clinical and laboratory research
interests. I am investigating the genetics of pediatric solid tumors,
specifically the changes in brain tumors that play a role in the initiation or
progression of disease. My goal in this effort is to improve the methods for
identifying chromosomal changes in tumor biopsies so they can be used in a
clinical diagnostic and prognostic setting. I am also investigating the region
of chromosome 22 involved in the development of the highly malignant rhabdoid
tumors of the kidney and central nervous system. The identification of INI1, a
tumor suppressor gene for rhabdoid tumors, will facilitate the design of
sensitive diagnostic tests and ultimately improved treatment protocols.My
colleagues and I have recently shown that deletion and mutation of the INI1
gene, which maps to chromosome band 22q11.2, is associated with rhabdoid tumors
of the brain, kidney and soft tissues. The identification of germline mutations
of INI1 in several patients suggests that they have a genetic predisposition to
the development of the rhabdoid tumors. Mutation studies in families of these
children will allow us to determine if the germline mutations are inherited and
if additional family members are at risk for developing rhabdoid tumors.
Additional functional studies of INI1 are ongoing in collaboration with other
scientists.Selected Publications: Biegel JA, Zhou JY, Rorke LB, Stenstrom C,
Wainwright LM, Fogelgren B; Germ-line and acquired mutations of INI1 in atypical
teratoid and rhabdoid tumors. Cancer Res 1999 Jan 1;59(1):74-9 Biegel JA;
Cytogenetics and molecular genetics of childhood brain tumors. Neuro-oncol. 1999
Apr;1(2):139-51. Biegel JA, Fogelgren B, Wainwright LM, Zhou JY, Bevan H, Rorke
LB; Germline INI1 mutation in a patient with a central nervous system atypical
teratoid tumor and a renal rhabdoid tumor. Genes Chromosomes Cancer 2000
May;28(1):31-7






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#180

From: KCJoeNSuz@...
Date: Fri Oct 17, 2008 5:20 pm
Subject: Re: Re: To Mette - ?Aytpical ATRT

suzsudo

Offline

Joey was considered an Atypical ATRT- I thought it was because it was
located in his neck versus the CNS or kidney.  He does has the gene  deletion.

Hopkins could not diagnose his cancer- they sent it out to CHOP, Harvard  and
to Mayo.  CHOP was the facility that diagnosed him.  His first  biopsy was
done on 2/14/07, the second was soon after and he wasn't diagnosed  until
3/14/2007.

Suzanne

In a message dated 10/17/2008 3:25:27 P.M. Eastern Daylight Time,
metteearlywine@... writes:

oh, i think they mean it's atypical because she does NOT have the  gene
deletion, whereas most kiddos with ATRT do have the deletion, in  the
tumor cells or all cells.

they took a while to decide on ATRT  as the diagnosis - and sent
pathology off to "another lab" - i'm assuming  Dr. Biegel, but maybe
not. (i suppose i ought to check in on that!)

prior to their consultation with the other lab, they told us they  had
narrowed the pathology down to either ATRT or choroid  plexus
carcinoma, but were leaning towards ATRT.

--- In _ATRT@..._ (mailto:ATRT@yahoogroups.com) , M Kees  <mkees7
3@...> wrote:
>
>
> Hi Mette,
>
> Can you give more specifics as to what the doctors mean when  they
say "Atypical ATRT?"
>
> Michelle
>
>
>
> To: ATRT@...: metteearlywine@ To: ATRT@...: metteearlywine@<WBR
+0000Subject: [ATRT] Re: Schwannomas and ATRT
>
>
>
>
> Hi All -Zoe Earlywine does NOT have the INI-1  deletion. Her docs
have notedthat she has atypical ATRT. We have not been  tested. No
history ofbrain tumors on either side of our family, that I am  aware
of(definitely no immediate family members -  parents,
grandparents,grandparents,<WBR>sibligr
>
>
>
>
>
>  ____________  ____  ____  ____  ____  ____
>  Want to read Hotmail messages in Outlook? The Wordsmiths show you  how.
>
_http://windowslive.http://windohttp://windowslihttp://windohttp://wihttp://w_

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!20EE04FBC541789!!20EE04FBC!20EE04FB!20EE04FB!20EE04FBC5417
>
> [Non-text portions of this message have been  removed]
>

**************BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD
today!
(http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\
www.indianajones.com/site/index.html)

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

#179

From: "isisreturning2m" <metteearlywine@...>
Date: Fri Oct 17, 2008 7:11 pm
Subject: Re: To Mette - ?Aytpical ATRT

isisreturning2m

Offline

oh, i think they mean it's atypical because she does NOT have the gene
deletion, whereas most kiddos with ATRT do have the deletion, in the
tumor cells or all cells.

they took a while to decide on ATRT as the diagnosis - and sent
pathology off to "another lab" - i'm assuming Dr. Biegel, but maybe
not. (i suppose i ought to check in on that!)

prior to their consultation with the other lab, they told us they had
narrowed the pathology down to either ATRT or choroid plexus
carcinoma, but were leaning towards ATRT.

--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:
>
>
> Hi Mette,
>
> Can you give more specifics as to what the doctors mean when they
say "Atypical ATRT?"
>
> Michelle
>
>
>
> To: ATRT@...: metteearlywine@...: Thu, 16 Oct 2008 20:15:27
+0000Subject: [ATRT] Re: Schwannomas and ATRT
>
>
>
>
> Hi All -Zoe Earlywine does NOT have the INI-1 deletion. Her docs
have notedthat she has atypical ATRT. We have not been tested. No
history ofbrain tumors on either side of our family, that I am aware
of(definitely no immediate family members - parents,
grandparents,siblings, aunts/uncles).
>
>
>
>
>
> _________________________________________________________________
> Want to read Hotmail messages in Outlook? The Wordsmiths show you how.
>
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E04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008
>
> [Non-text portions of this message have been removed]
>

#178

From: "Walsh, Paige P." <pwalsh@...>
Date: Thu Oct 16, 2008 9:24 pm
Subject: RE: Schwannomas and ATRT

lily.walsh

Online Now

Charlie Walsh
INI1 Gene Deletion in tumor and all cells
Neither parents or other three siblings has the deletion
My second cousin died of a brain tumor when she was 2.  Not sure of the exact
diagnosis.

Another issue with Charlie:  When he was 5 months old, he was initially
diagnosed with Rhabdomyosarcoma by various hospitals (San Francisco, St. Louis
and others).  After further review, the FINAL diagnosis was "benign tumor - 
unknown".  He was born with this tumor, which protruded from his left shoulder. 
Just another piece in the puzzle.  We have talked to our doctor about this and
she definitely believes the original tumor was somehow related to his genetic
condition.  Dr. Biegel knows of this.


________________________________

From: ATRT@yahoogroups.com on behalf of KCJoeNSuz@...
Sent: Thu 10/16/2008 7:18 AM
To: ATRT@yahoogroups.com; atrt@yahoogroups.com
Subject: Re: [ATRT] Schwannomas and ATRT



My child Joey had the genetic testing.
He does have the INI 1 deletion.
No one else in our family was tested and will not be tested.


In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,
mkees73@... <mailto:mkees73%40hotmail.com>  writes:

Tara,

Great question, and good area to explore further. There hasn't been alot of
discussion about genetic issues on our ATRT board, and it is an area of
critical importance.

Could EVERYONE answer the following question:

Has your child had the genetic testing?
What were the results?
For those with the INI1 deletion, is it just in your child or also in a
parent?
Any with a family history of schwannomas or neurfibromas?

I will go first.Andrew Padfield
INI 1 deletion in the tumor and in all cells
Neither parent has the deletion
Andrew's great grandfather died from a brain glioma in his 60s.

To: _ATRT@... <mailto:_ATRT%40yahoogroups.ATRT> @ya_
(mailto:ATRT@... <mailto:ATRT%40yahoogroups.comFrom> ) :
_DegoBoo02@... <mailto:_DegoBoo02%40aol.DegoBoo> _
(mailto:DegoBoo02@... <mailto:DegoBoo02%40aol.comDate> ) : Thu, 16 Oct
2008 05:32:08
+0000Subject: [ATRT] Schwannomas and ATRT

Many of you may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT in July 2006. We obtained one of the last openings in THE
PROTOCOL that many people are now basing their own treatment off of. Mattea will
be
2.5 in November and is doing wonderfully. She is 27 months from diagnosis
and 1 year off of treatment. Her most recent scan, on August 25th, was stable.
As far as she is concerned, things couldn't be much better.When we realized
we were pregnant with our second child, we underwent extensive genetic testing
in hopes of ruling out suspicion that our experience with ATRT was the
result of a genetic issue. Unfortunately, we were told that Mattea, and my
husband
Mike both have the INI-1 gene mutation (and in their case, a total
deletion). Further testing revealed that our second child, Mackenzie, does not
have
this mutation. One of the primary issues that Dr. Biegel (Children's Hospital
of Philly) is trying to address is, why do some people with INI-1 suffer from
these vicious cancers while others with the same mutation develop benign
schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a
multi-generation family with the presence of this gene mutation and the
following: ATRT, possible medulloblastoma (diagnosed in the early 1960s),
Schwannoma,
and Neurofibromas.Many of you may or may not know of our our daughter,
Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last
openings in THE PROTOCOL that many people are now basing their own treatment off
of.

__________________________________________________________
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**************BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD
today!
(http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\
www.indianajones.com/site/index.html
<http://pr.atwola.com/promoclk/100000075x1209326865x1200539441/aol?redir=http://\
www.indianajones.com/site/index.html> )

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

#171

From: "babyella418" <babyella06@...>
Date: Thu Oct 16, 2008 3:28 pm
Subject: Re: Schwannomas and ATRT

babyella418

Offline

My daughter Sophiella has INI 1 gene mutation
Neither parents have it
No known related disease in either of families

--- In ATRT@yahoogroups.com, M Kees <mkees73@...> wrote:
>
>
> Tara,
>
> Great question, and good area to explore further.  There hasn't been alot of
discussion
about genetic issues on our ATRT board, and it is an area of critical
importance.
>
> Could EVERYONE answer the following question:
>
> Has your child had the genetic testing?
> What were the results?
> For those with the INI1 deletion, is it just in your child or also in a
parent?
> Any with a family history of schwannomas or neurfibromas?
>
>
> I will go first.Andrew Padfield
> INI 1 deletion in the tumor and in all cells
> Neither parent has the deletion
> Andrew's great grandfather died from a brain glioma in his 60s.
>
>
>
> To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08 +0000Subject: [ATRT]
Schwannomas and ATRT
>
>
>
>
> Many of you may or may not know of our our daughter, Mattea. She was diagnosed
with
ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL that
many
people are now basing their own treatment off of. Mattea will be 2.5 in November
and is
doing wonderfully. She is 27 months from diagnosis and 1 year off of treatment.
Her most
recent scan, on August 25th, was stable. As far as she is concerned, things
couldn't be
much better.When we realized we were pregnant with our second child, we
underwent
extensive genetic testing in hopes of ruling out suspicion that our experience
with ATRT
was the result of a genetic issue. Unfortunately, we were told that Mattea, and
my
husband Mike both have the INI-1 gene mutation (and in their case, a total
deletion).
Further testing revealed that our second child, Mackenzie, does not have this
mutation.
One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is
trying to address
is, why do some people with INI-1 suffer from these vicious cancers while others
with the
same mutation develop benign schwannomas and neurofibromas. So far, it's a
mystery.
Anyway, we are now a multi-generation family with the presence of this gene
mutation
and the following: ATRT, possible medulloblastoma (diagnosed in the early
1960s),
Schwannoma, and Neurofibromas.Has anyone else had an experience similar to this?
I
know it's a long shot, but I'm trying to gather any information I can that could
be
anywhere close to what we're experiencing right now. Thanks,Tara Lesorgen
>
>
>
>
>
> _________________________________________________________________
> Want to read Hotmail messages in Outlook? The Wordsmiths show you how.
> http://windowslive.com/connect/post/wedowindowslive.spaces.live.com-Blog-
cns!20EE04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008
>
> [Non-text portions of this message have been removed]
>

#170

From: Rachel Perez <rhp74@...>
Date: Thu Oct 16, 2008 2:21 pm
Subject: Re: Schwannomas and ATRT

rhp74

Offline

my son Michael had the INI 1 deletion test and his results were negative. he
also had the p53 test and those results were negative as well. michael does have
the ini 1 deletion in the tumor but not anywhere else throughout his body.
michael's grandmother(my mother) was diagnosed with a glioblastome multiforme
grade 4 in august 2008. she is 60 years old



----- Original Message ----
From: "KCJoeNSuz@..." <KCJoeNSuz@...>
To: ATRT@yahoogroups.com; atrt@yahoogroups.com
Sent: Thursday, October 16, 2008 8:18:18 AM
Subject: Re: [ATRT] Schwannomas and ATRT


My child Joey had the genetic testing.
He does have the INI 1 deletion.
No one else in our family was tested and will not be tested.


In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,
mkees73@hotmail. com writes:

Tara,

Great question, and good area to explore further. There hasn't been alot of
discussion about genetic issues on our ATRT board, and it is an area of
critical importance.

Could EVERYONE answer the following question:

Has your child had the genetic testing?
What were the results?
For those with the INI1 deletion, is it just in your child or also in a
parent?
Any with a family history of schwannomas or neurfibromas?

I will go first.Andrew Padfield
INI 1 deletion in the tumor and in all cells
Neither parent has the deletion
Andrew's great grandfather died from a brain glioma in his 60s.

To: _ATRT@yahoogroups. ATRT@ya_ (mailto:ATRT@yahoogroups. comFrom) :
_DegoBoo02@aol. DegoBoo_ (mailto:DegoBoo02@aol. comDate) : Thu, 16 Oct 2008
05:32:08
+0000Subject: [ATRT] Schwannomas and ATRT

Many of you may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT in July 2006. We obtained one of the last openings in THE
PROTOCOL that many people are now basing their own treatment off of. Mattea will
be
2.5 in November and is doing wonderfully. She is 27 months from diagnosis
and 1 year off of treatment. Her most recent scan, on August 25th, was stable.
As far as she is concerned, things couldn't be much better.When we realized
we were pregnant with our second child, we underwent extensive genetic testing
in hopes of ruling out suspicion that our experience with ATRT was the
result of a genetic issue. Unfortunately, we were told that Mattea, and my
husband
Mike both have the INI-1 gene mutation (and in their case, a total
deletion). Further testing revealed that our second child, Mackenzie, does not
have
this mutation. One of the primary issues that Dr. Biegel (Children's Hospital
of Philly) is trying to address is, why do some people with INI-1 suffer from
these vicious cancers while others with the same mutation develop benign
schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a
multi-generation family with the presence of this gene mutation and the
following: ATRT, possible medulloblastoma (diagnosed in the early 1960s),
Schwannoma,
and Neurofibromas. Many of you may or may not know of our our daughter,
Mattea. She was diagnosed with ATRT in July 2006. We obtained one of the last
openings in THE PROTOCOL that many people are now basing their own treatment off
of.

____________ _________ _________ _________ _________ _________ _
Want to read Hotmail messages in Outlook? The Wordsmiths show you how.
_http://windowslive. http://windohttp ://windowslihttp ://windohttp: //wihttp:
//w_

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Blog-cns) !20EE04FBC541789! !20EE04FBC! 20EE04FB! 20EE04FB! 20EE04FBC5417

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

************ **BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD
today!
(http://pr.atwola. com/promoclk/ 100000075x120932 6865x1200539441/ aol?redir=
http://www. indianajones. com/site/ index.html)

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






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

#169

From: ShadMan <shadmanj@...>
Date: Thu Oct 16, 2008 1:18 pm
Subject: Re: Schwannomas and ATRT

jshaddix2

Offline

My son, Jonathan Shaddix, had the genetic testing which showed that
the mutation is present in every cell (Rhabdoid Predisposition).
Neither my wife or I have the mutation, and there is no known history
of tumors on either side of the family.

Jeff Shaddix


> Could EVERYONE answer the following question:
>
> Has your child had the genetic testing?
> What were the results?
> For those with the INI1 deletion, is it just in your child or also in a
> parent?
> Any with a family history of schwannomas or neurfibromas?
>

#168

From: KCJoeNSuz@...
Date: Thu Oct 16, 2008 8:18 am
Subject: Re: Schwannomas and ATRT

suzsudo

Offline

My child Joey had the genetic testing.
He does have the INI 1 deletion.
No one else in our family was tested and will not be tested.


In a message dated 10/16/2008 8:16:44 A.M. Eastern Daylight Time,
mkees73@... writes:





Tara,

Great question, and good area to explore further. There  hasn't been alot of
discussion about genetic issues on our ATRT board, and it  is an area of
critical importance.

Could EVERYONE answer the following  question:

Has your child had the genetic testing?
What were the  results?
For those with the INI1 deletion, is it just in your child or also  in a
parent?
Any with a family history of schwannomas or  neurfibromas?


I will go first.Andrew Padfield
INI 1 deletion in  the tumor and in all cells
Neither parent has the deletion
Andrew's  great grandfather died from a brain glioma in his 60s.

To: _ATRT@...@ya_ (mailto:ATRT@...) :
_DegoBoo02@..._ (mailto:DegoBoo02@...) : Thu, 16  Oct 2008
05:32:08
+0000Subject: [ATRT] Schwannomas and ATRT

Many of you  may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT  in July 2006. We obtained one of the last openings in THE
PROTOCOL that many  people are now basing their own treatment off of. Mattea
will be
2.5 in  November and is doing wonderfully. She is 27 months from diagnosis
and 1 year  off of treatment. Her most recent scan, on August 25th, was stable.
As far as  she is concerned, things couldn't be much better.When we realized
we were  pregnant with our second child, we underwent extensive genetic testing
in  hopes of ruling out suspicion that our experience with ATRT was the
result of  a genetic issue. Unfortunately, we were told that Mattea, and my
husband
Mike  both have the INI-1 gene mutation (and in their case, a total
deletion).  Further testing revealed that our second child, Mackenzie, does not
have
this  mutation. One of the primary issues that Dr. Biegel (Children's Hospital
of  Philly) is trying to address is, why do some people with INI-1 suffer from
these vicious cancers while others with the same mutation develop benign
schwannomas and neurofibromas. So far, it's a mystery. Anyway, we are now a
multi-generation family with the presence of this gene mutation and the
following: ATRT, possible medulloblastoma (diagnosed in the early 1960s), 
Schwannoma,
and Neurofibromas.Many of you  may or may not know of our our daughter,
Mattea. She was diagnosed with ATRT  in July 2006. We obtained one of the last
openings in THE PROTOCOL that many  people are now basing their own treatment
off
of.

__________________________________________________________
Want  to read Hotmail messages in Outlook? The Wordsmiths show you how.
_http://windowslive.http://windohttp://windowslihttp://windohttp://wihttp://w_

(http://windowslive.com/connect/post/wedowindowslive.spaces.live.com-Blog-cns)
!20EE04FBC541789!!20EE04FBC!20EE04FB!20EE04FB!20EE04FBC5417

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




**************BUY Indiana Jones and the Kingdom of the Crystal Skull on DVD
today!
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[Non-text portions of this message have been removed]

#167

From: M Kees <mkees73@...>
Date: Thu Oct 16, 2008 12:16 pm
Subject: RE: Schwannomas and ATRT

mkees73

Offline

Tara,

Great question, and good area to explore further.  There hasn't been alot of
discussion about genetic issues on our ATRT board, and it is an area of critical
importance.

Could EVERYONE answer the following question:

Has your child had the genetic testing?
What were the results?
For those with the INI1 deletion, is it just in your child or also in a parent?
Any with a family history of schwannomas or neurfibromas?


I will go first.Andrew Padfield
INI 1 deletion in the tumor and in all cells
Neither parent has the deletion
Andrew's great grandfather died from a brain glioma in his 60s.



To: ATRT@...: DegoBoo02@...: Thu, 16 Oct 2008 05:32:08
+0000Subject: [ATRT] Schwannomas and ATRT




Many of you may or may not know of our our daughter, Mattea. She was diagnosed
with ATRT in July 2006. We obtained one of the last openings in THE PROTOCOL
that many people are now basing their own treatment off of. Mattea will be 2.5
in November and is doing wonderfully. She is 27 months from diagnosis and 1 year
off of treatment. Her most recent scan, on August 25th, was stable. As far as
she is concerned, things couldn't be much better.When we realized we were
pregnant with our second child, we underwent extensive genetic testing in hopes
of ruling out suspicion that our experience with ATRT was the result of a
genetic issue. Unfortunately, we were told that Mattea, and my husband Mike both
have the INI-1 gene mutation (and in their case, a total deletion). Further
testing revealed that our second child, Mackenzie, does not have this mutation.
One of the primary issues that Dr. Biegel (Children's Hospital of Philly) is
trying to address is, why do some people with INI-1 suffer from these vicious
cancers while others with the same mutation develop benign schwannomas and
neurofibromas. So far, it's a mystery. Anyway, we are now a multi-generation
family with the presence of this gene mutation and the following: ATRT, possible
medulloblastoma (diagnosed in the early 1960s), Schwannoma, and
Neurofibromas.Has anyone else had an experience similar to this? I know it's a
long shot, but I'm trying to gather any information I can that could be anywhere
close to what we're experiencing right now. Thanks,Tara Lesorgen





_________________________________________________________________
Want to read Hotmail messages in Outlook? The Wordsmiths show you how.
http://windowslive.com/connect/post/wedowindowslive.spaces.live.com-Blog-cns!20E\
E04FBC541789!167.entry?ocid=TXT_TAGLM_WL_hotmail_092008

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

#166

From: "taraboo02" <DegoBoo02@...>
Date: Thu Oct 16, 2008 5:32 am
Subject: Schwannomas and ATRT

taraboo02

Offline

Many of you may or may not know of our our daughter, Mattea. She was
diagnosed with ATRT in July 2006. We obtained one of the last openings
in THE PROTOCOL that many people are now basing their own treatment off
of. Mattea will be 2.5 in November and is doing wonderfully. She is 27
months from diagnosis and 1 year off of treatment. Her most recent
scan, on August 25th, was stable. As far as she is concerned, things
couldn't be much better.

When we realized we were pregnant with our second child, we underwent
extensive genetic testing in hopes of ruling out suspicion that our
experience with ATRT was the result of a genetic issue. Unfortunately,
we were told that Mattea, and my husband Mike both have the INI-1 gene
mutation (and in their case, a total deletion). Further testing
revealed that our second child, Mackenzie, does not have this mutation.

One of the primary issues that Dr. Biegel (Children's Hospital of
Philly) is trying to address is, why do some people with INI-1 suffer
from these vicious cancers while others with the same mutation develop
benign schwannomas and neurofibromas. So far, it's a mystery.

Anyway, we are now a multi-generation family with the presence of this
gene mutation and the following: ATRT, possible medulloblastoma
(diagnosed in the early 1960s), Schwannoma, and Neurofibromas.

Has anyone else had an experience similar to this?  I know it's a long
shot, but I'm trying to gather any information I can that could be
anywhere close to what we're experiencing right now.

Thanks,
Tara Lesorgen

#165

From: "superowenrules" <superowenrules@...>
Date: Fri Oct 10, 2008 11:50 am
Subject: Re: Update on Zoe

superowenrules

Offline

Glad to hear you guys got some relief with MRI news.  These spots can
really scare you.  The waiting is just terrible you hope for the best
but prepare for the worst.  Owen had a few spots turn up on his MRI
about a year from diagnosis, it was scar tissue, but like you we had
to wait the three weeks to do another MRI.  Owen's scar tissue has
caused us a lot of problems, but that is due to the kind of radiation
he had IntraBeam. Scar tissue usually doesn't cause any problems.
Owen also just had a MRI, two years off treatment and still cancer
free!!  You guys are doing great!  Have a great weekend.
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons

--- In ATRT@yahoogroups.com, "isisreturning2m" <metteearlywine@...> wrote:
>
> Hi All - we have been on pins and needles watching a new "spot" that
appeared on Zoe's
> MRI on Sep 16th. Possibilities were: radiation-related changes OR
the dreaded tumor
> recurrence.
>
> As we all know all too well, chances were good it was tumor
recurrence. After 3 long
> weeks of waiting for a follow-up MRI, we found out yesterday that
the "previous area of
> enhancement shows diminished prominence." Or, as our doctor put it:
"It looks better." !
>
> We are surprised and very relieved. A smaller spot seems to suggest
radiation changes
> rather than tumor (which, with ATRT, would almost certainly have
grown in 3 weeks time,
> and would almost certainly NOT get smaller).
>
> We know this result isn't a guarantee of anything. It's tricky to
know for sure exactly
> what the spot is. Time will tell. We know that every single day with
her is indeed a
> precious gift. We are still soaking her up into every fibre of our
beings. And, we are glad
> for our "stay of execution", however long it may last (indefinitely,
we hope!).
>
> I know some of you have been on this rollercoaster, too. I try to
ride the highs when they
> come, knowing that the lows will just as surely follow (or maybe
it's vice versa - the
> highs follow the lows).
>
> And, I am praying and thinking daily about those of you who are
currently dealing with
> the dreaded recurrence. I am reading your websites, praying for
healing, praying for
> peace, praying for a lovely and loving transition, if that's the way
things unfold.
>
> My thoughts are also with those of you whose children have already
transitioned beyond
> their physical bodies. I know you miss your babies so much. As
always, I wish that with
> each foot you manage to put in front of the other, the effort of it
gets easier, and that
> slowly joy returns and puts a bounce back in your step.
>
> Hugs and love to all of you out there -
>
> Mette Earlywine
>

Reply | Forward | Messages in this Topic (2)

#163

From: M Kees <mkees73@...>
Date: Fri Oct 10, 2008 11:41 am
Subject: RE: Nicholas Laplante

mkees73

Offline

Oh Chrissy, I am so so sorry.  I read on your page earilier in the week that you
were hoping to bring Nicky home.  I am glad that he was able to make that trip
and that his last moments were surrounded by love and comfort.  You are in our
thoughts always.

Michelle, Andrew's momma



To: ATRT@...: chrissy4u30@...: Fri, 10 Oct 2008
05:21:07 +0000Subject: [ATRT] Nicholas Laplante




IT'S WITH A VERY HEAVY AND BROKEN HEART, THAT I SAY NICKY EARNED HIS ANGEL WINGS
AT 8:15PM OCT 8, 2008.HE WAS ONLY 13 MONTHS OLD. WE BROUGHT NICKY HOME AFTER HE
WAS PUT ON A VENT SUNDAY NIGHT, AND I WAS ABLE TO HOLD HIM AS HE TOOK HIS LAST
BREATH SURROUNDED BY OUR FAMILY. I STILL PRAY FOR ALL THOSE STILL FIGHTING THIS
MONSTEROUS DISEASE, AND ALL THOSE WHO HAVE LEFT US.





_________________________________________________________________
See how Windows Mobile brings your life together�at home, work, or on the go.
http://clk.atdmt.com/MRT/go/msnnkwxp1020093182mrt/direct/01/

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

Reply | Forward | Messages in this Topic (3)

#162

From: Rachel Perez <rhp74@...>
Date: Fri Oct 10, 2008 10:42 am
Subject: Re: Nicholas Laplante

rhp74

Offline

i am so sorry. i will pray for your entire family. nicky is cancer free now and
safe in Jesus' arms.

----- Original Message ----
From: chrissy4u30 <chrissy4u30@...>
To: ATRT@yahoogroups.com
Sent: Friday, October 10, 2008 1:21:07 AM
Subject: [ATRT] Nicholas Laplante

IT'S WITH A VERY HEAVY AND BROKEN HEART, THAT I SAY NICKY EARNED HIS
ANGEL WINGS AT 8:15PM OCT 8, 2008.HE WAS ONLY 13 MONTHS OLD. WE BROUGHT
NICKY HOME AFTER HE WAS PUT ON A VENT SUNDAY NIGHT, AND I WAS ABLE TO
HOLD HIM AS HE TOOK HIS LAST BREATH SURROUNDED BY OUR FAMILY. I STILL
PRAY FOR ALL THOSE STILL FIGHTING THIS MONSTEROUS DISEASE, AND ALL
THOSE WHO HAVE LEFT US.

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

Reply | Forward | Messages in this Topic (3)

#161

From: "chrissy4u30" <chrissy4u30@...>
Date: Fri Oct 10, 2008 5:21 am
Subject: Nicholas Laplante

chrissy4u30

Offline

IT'S WITH A VERY HEAVY AND BROKEN HEART, THAT I SAY NICKY EARNED HIS
ANGEL WINGS AT 8:15PM OCT 8, 2008.HE WAS ONLY 13 MONTHS OLD. WE BROUGHT
NICKY HOME AFTER HE WAS PUT ON A VENT SUNDAY NIGHT, AND I WAS ABLE TO
HOLD HIM AS HE TOOK HIS LAST BREATH SURROUNDED BY OUR FAMILY. I STILL
PRAY FOR ALL THOSE STILL FIGHTING THIS MONSTEROUS DISEASE, AND ALL
THOSE WHO HAVE LEFT US.

Reply | Forward | Messages in this Topic (3)

#160

From: "isisreturning2m" <metteearlywine@...>
Date: Thu Oct 9, 2008 7:52 pm
Subject: Update on Zoe

isisreturning2m

Offline

Hi All - we have been on pins and needles watching a new "spot" that appeared on
Zoe's
MRI on Sep 16th. Possibilities were: radiation-related changes OR the dreaded
tumor
recurrence.

As we all know all too well, chances were good it was tumor recurrence. After 3
long
weeks of waiting for a follow-up MRI, we found out yesterday that the "previous
area of
enhancement shows diminished prominence." Or, as our doctor put it: "It looks
better." !

We are surprised and very relieved. A smaller spot seems to suggest radiation
changes
rather than tumor (which, with ATRT, would almost certainly have grown in 3
weeks time,
and would almost certainly NOT get smaller).

We know this result isn't a guarantee of anything. It's tricky to know for sure
exactly
what the spot is. Time will tell. We know that every single day with her is
indeed a
precious gift. We are still soaking her up into every fibre of our beings. And,
we are glad
for our "stay of execution", however long it may last (indefinitely, we hope!).

I know some of you have been on this rollercoaster, too. I try to ride the highs
when they
come, knowing that the lows will just as surely follow (or maybe it's vice versa
- the
highs follow the lows).

And, I am praying and thinking daily about those of you who are currently
dealing with
the dreaded recurrence. I am reading your websites, praying for healing, praying
for
peace, praying for a lovely and loving transition, if that's the way things
unfold.

My thoughts are also with those of you whose children have already transitioned
beyond
their physical bodies. I know you miss your babies so much. As always, I wish
that with
each foot you manage to put in front of the other, the effort of it gets easier,
and that
slowly joy returns and puts a bounce back in your step.

Hugs and love to all of you out there -

Mette Earlywine

Reply | Forward | Messages in this Topic (2)

#159

From: Chrissy G <chrissy4u30@...>
Date: Sat Oct 4, 2008 1:50 am
Subject: Re: Re: hi

chrissy4u30

Offline

we set up a care page for nicky its� Nicholas07.webs.com

--- On Wed, 10/1/08, superowenrules <superowenrules@...> wrote:

From: superowenrules <superowenrules@...>
Subject: [ATRT] Re: hi
To: ATRT@yahoogroups.com
Date: Wednesday, October 1, 2008, 6:12 PM

Hi, my name is Cyndi, my son Owen was diagnosed with AT/Rt back in
April 2006 when he was 13 months old. He is 2 years off treatment.
Sorry you had to find us but I think we are a pretty knowledgeable
group who were right were you are at one time. If the diagnosis isn't
scary enough, there are the statics, they are just numbers. Not one
doctor knows everything so reach out to as many as you can, it is
better to have 3 or 4 people thinking about what is best for your son
then just one person. There is another website you might want to
check out www.rhabdoidkids. com/v2 It has a lot more AT/RT families,
who will be very helpful and supportive to you. If there is any thing
I can do or if you have any questions don't be afraid to ask. Your
family will be in my thoughts and prayers.
Believe in Hope,
Cyndi (Owen's Mom)
www.caringbridge. org/visit/ owenlyons

--- In ATRT@yahoogroups. com, "chrissy4u30" <chrissy4u30@ ...> wrote:
>
> 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]

#158

From: Chrissy G <chrissy4u30@...>
Date: Sat Oct 4, 2008 1:40 am
Subject: Re: To Chrissy

chrissy4u30

Offline

thank you, a couple of people have said to go to St Judes, but i need to see how
things are going first. thank you for the sites. i hope your nephew is doing
good, these kids are fighters.

--- On Wed, 10/1/08, Faye <fcinman@...> wrote:

From: Faye <fcinman@...>
Subject: [ATRT] To Chrissy
To: ATRT@yahoogroups.com
Date: Wednesday, October 1, 2008, 5:55 PM

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

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

Reply | Forward | Messages in this Topic (2)

#157

From: Chrissy G <chrissy4u30@...>
Date: Sat Oct 4, 2008 1:37 am
Subject: Re: Re: hi

chrissy4u30

Offline

cindi, thank you for your inspiring words they mean alot to me, your son was the
same age as nicky is now, i am glad to hear he is doin ok, they sarted chemo 3
days ago, so we're praying for the best right now

--- On Wed, 10/1/08, superowenrules <superowenrules@...> wrote:

From: superowenrules <superowenrules@...>
Subject: [ATRT] Re: hi
To: ATRT@yahoogroups.com
Date: Wednesday, October 1, 2008, 6:12 PM

Hi, my name is Cyndi, my son Owen was diagnosed with AT/Rt back in
April 2006 when he was 13 months old. He is 2 years off treatment.
Sorry you had to find us but I think we are a pretty knowledgeable
group who were right were you are at one time. If the diagnosis isn't
scary enough, there are the statics, they are just numbers. Not one
doctor knows everything so reach out to as many as you can, it is
better to have 3 or 4 people thinking about what is best for your son
then just one person. There is another website you might want to
check out www.rhabdoidkids. com/v2 It has a lot more AT/RT families,
who will be very helpful and supportive to you. If there is any thing
I can do or if you have any questions don't be afraid to ask. Your
family will be in my thoughts and prayers.
Believe in Hope,
Cyndi (Owen's Mom)
www.caringbridge. org/visit/ owenlyons

--- In ATRT@yahoogroups. com, "chrissy4u30" <chrissy4u30@ ...> wrote:
>
> 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]

#156

From: Chrissy G <chrissy4u30@...>
Date: Sat Oct 4, 2008 1:11 am
Subject: Re: Re: hi

chrissy4u30

Offline

Thank you so much, i am trying to stay hopeful.

--- On Wed, 10/1/08, babyella418 <babyella06@...> wrote:

From: babyella418 <babyella06@...>
Subject: [ATRT] Re: hi
To: ATRT@yahoogroups.com
Date: Wednesday, October 1, 2008, 8:28 PM

Hi Chrissy,

I'm sorry to hear about your son. I agree 100% with other parents about not
paying
attention to the statistics. When my daughter was first diagnosed, out doctors
didn't think
she would live more than a month or two. Two year later, she is still here.
Still in
treatment but here. I'm sure you are overwhelmed and things might be a blur
right now. I
have found this website and also www.cancerfamily. org/forum to be very helpful.
Please
ask all the questions you might have. Take care and be strong.

Katherine

--- In ATRT@yahoogroups. com, "chrissy4u30" <chrissy4u30@ ...> wrote:
>
> 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]

#155

From: "Faye" <fcinman@...>
Date: Thu Oct 2, 2008 1:29 am
Subject: Cole Carpenter was on TV

fcinman

Offline

The TV station in Hattiesburg, MS did a short report on Cole and his
mom, Terry (my sister).  Its amazing how much was edited from all
the film they made!  Terry made a statement that she didn't really
know a lot about AT/RT...then she paused but went on to say it was
because she didn't want to know, for no matter how bad it was, her
God was bigger than the cancer;  but the part after she paused was
edited!   She also expressed thanks to her family, the church,
community, prayer groups and even strangers for their support, love
and prayers, and how they couldn't have made it without God... but
that was edited too!  They did leave in one short part about God so
we're thankful for that!  Terry's main purpose for allowing the
interview was to give God the praise and to thank everyone, and to
not let the devil get any recognition. Here's the video:
http://www.wdam.com/Global/SearchResults.asp?
vendor=wss&qu=pride+of+the+pine+belt

Click on #2 -- Cancer Survivor Story(you'll have to watch a short
commercial first before the video starts)

Faye

Reply | Forward | Messages in this Topic (1)

#154

From: "babyella418" <babyella06@...>
Date: Wed Oct 1, 2008 8:28 pm
Subject: Re: hi

babyella418

Offline

Hi Chrissy,

I'm sorry to hear about your son.  I agree 100% with other parents about not
paying
attention to the statistics.  When my daughter was first diagnosed, out doctors
didn't think
she would live more than a month or two.  Two year later, she is still here. 
Still in
treatment but here.  I'm sure you are overwhelmed and things might be a blur
right now.  I
have found this website and also www.cancerfamily.org/forum to be very helpful. 
Please
ask all the questions you might have.  Take care and be strong.

Katherine

--- In ATRT@yahoogroups.com, "chrissy4u30" <chrissy4u30@...> wrote:
>
> 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
>

#153

From: "superowenrules" <superowenrules@...>
Date: Wed Oct 1, 2008 6:12 pm
Subject: Re: hi

superowenrules

Offline

Hi, my name is Cyndi, my son Owen was diagnosed with AT/Rt back in
April 2006 when he was 13 months old.  He is 2 years off treatment.
Sorry you had to find us but I think we are a pretty knowledgeable
group who were right were you are at one time.  If the diagnosis isn't
scary enough, there are the statics, they are just numbers.  Not one
doctor knows everything so reach out to as many as you can, it is
better to have 3 or 4 people thinking about what is best for your son
then just one person.  There is another website you might want to
check out www.rhabdoidkids.com/v2  It has a lot more AT/RT families,
who will be very helpful and supportive to you.  If there is any thing
I can do or if you have any questions don't be afraid to ask.  Your
family will be in my thoughts and prayers.
Believe in Hope,
Cyndi (Owen's Mom)
www.caringbridge.org/visit/owenlyons

--- In ATRT@yahoogroups.com, "chrissy4u30" <chrissy4u30@...> wrote:
>
> 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
>