Hello,

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

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

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

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

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

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

Michelle
www.carepages.com  andrewpadfieldcarepage

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

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

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

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

Thinking of you,
Loice Swisher
list owner, ATRT


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

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

Please welcome Paracat22 from Arkansas

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

When you are ready, please tell us about Emmy.

With Hope,
Loice Swisher
list owner AT/RT

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

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

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

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

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






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

Chelsea,



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



Kelley m/o Collin



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



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

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

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







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

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

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

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

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

Michelle,

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

Much much love,
Chelsea, Caden, and Marlee

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

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

Michelle

Please welcome Michelle and her daughter Kaitlyn to the list.

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

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

My thoughts and prayers are with you.

Loice Swisher
moderator of the AT/RT list

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

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

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

thanks for emailing us and offering your help

Chelsea, Marlee, and Caden

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


---------------------------------
Yahoo! for Good
  Click here to donate to the Hurricane Katrina relief effort.

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

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

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

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

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

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

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

In hope,

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



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

Our oncologist is strongly suggesting we do conformal radiation on
Caden. He doesn't believe she has a very good chance without it,
because of her positive CSF-results (although our last test showed
NO CELLS PRESENT!!) and the aggressive type of tumor she has. He
says that although she is young, conformal radiation is safer than
stereotactic and that she may suffer neurological damage, but the
risk is outweighed by the need for the treatment.

Do any of you have kids (young or not) who've been damaged by
radiation, or who've had good results from conformal? Is it really
safer than stereotactic? Would you take the risk?

Caden is 18-months old, and would be two when we started radiation
if we go on this plan. She had a very large (orange-size) cerebellar
ATRT that was pressing on her brainstem. Her CSF was positive for
cancer cells, which I believe made her very high risk when combined
with the chromosomal abnormality present in the tumor (chromosome 22
test results came back this week - it is abnormal in the tumor).
She's on a nasty chemo regimin (etopophos+cisplatin for cycles 1 and
2, and vincristine+etopophos+cytoxan for cycles 3 and 4. Doses are
doubled in cycles 2 and 4 (as compared to what they were in 1 and
3). cycle 5 will be high-dose melphalan+carboplatin followed by stem-
cell rescue. She's also getting triple-intrathecal therapy twice
each cycle (except possibly cycle 5)) but the doctor doesn't think
it's going to be enough to cure her.

Thanks in advance for any help offered

Chelsea, Marlee, and Caden

Hi, everyone tomorrow is the monthly meeting where a lot of city officials
gather, and a lot of youth organizations will also be there, say a little prayer
for me, because this is the hand out I will be passing out.  Rest assured
Rhabdoiod families I will not use your families story without your permission. 
I will either contact you, asking you if I could tell your story, or If you want
your story told, please contact me.  I really feel I have to do this.  In the
last month to young boys were killed 4 blocks to the east of me, and 6 blocks
west of me.  I can not take it any longer.  One boy laid out in the street for
quite awhile before anyone found him, my heart aches so much for his mother!!!! 
As Michael says you can not stir up the community if your not prepared to lead
them.  This is my idea, lets hope it makes a difference.
Love to all I'll let you know how it goes.

Julie
Partners in Friendship
Have your organization or Youth Group partner with the Emily J. Cook
Foundation and develop friendships along the way.

A representative from the Emily Cook Foundation will come visit with your group
with approximately 3 stories of Rhabdoid families.  Each story is tailored to
fit
the average age of the group.  After stories have been discussed, and questions
answered we will do a project for the family.

Project #1- Make homemade cards encouraging the family.

Project # 2- Make a craft for the families, which could include..fake flowers,
since cancer patients can not have real flowers, flower butterfly's for an
angel's family.

Project # 3- The organization may choose to raise items needed for one of our
Rhabdoid Care Paks.

Project # 4- The organization may choose to grant a wish.

This program was developed, because we as a community must take a stand
against the violence in our neighborhood.  Each day I think of the two boys who
were murdered at the corners of my neighborhood.  It is our obligation to our
youth to teach love not hate, however we must provide them that opportunity.
The only opportunity I have is to use Rhabdoid.  I know it changes your life
forever.  I know sick children, and siblings of sick children would love to get
a
stack of cards in the mail.  I want to provide to the youth in my community the
opportunity to show the love they have.
My dream is someday that someone will put the gun down, not for fear of
getting caught but because they care about another human.

For Rhabdoid Stories:
www.rhabdoidkids.com<http://www.rhabdoidkids.com/>
www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>




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

I have updated the website today with some new programs.

www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>

Love,
Julie

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

Good Evening everyone,

I just wanted to let you know I am going to take a break from updating the
websites for awhile.  Thing here are moving so fast I can not keep up, just when
I think I am ready to update the foundations website, something new pops up.  I
have been approached by several companies wanting to do things, they think this
is a foundation ran by a host of people, and when I tell them it is just me,
they tell me I need to get a paid staff, and they will help me, so that is what
I am going to do.  HOWEVER, While I was talking with Sherri (Bradley Mother) on
the phone tonight, she really put it into perspective for me.  We were talking
about funeral arrangements and pain meds, and I just wanted to jump on the next
plane to be there with her and her family.  She had to ask to many times are you
still there.  I was just in awe at how strong she is, and thought to myself how
I must have sounded when Emily was going through her final journey, because I
would also have ask, are you still there...where did you go.  So my most
important job, before I take the staff money or even get a staff is to get to MN
in May.  Have the bands ready to be shared with the families, and have my
auction items ready.  That is what I will be working on.  So if you do not get a
update, it is because I am trying to raise money for bands, and for the Emily
Cook Foundation trip in MN, Now I will have to be all over the city to do it,
and I only have apox. one month to do it in.  Pray for me.  You know any of you
can reach me by calling me at 402 451 3360.  If any of you would like to help
the Foundations address is:4757 North 24th Street, Omaha, Ne 68111  Do NOt
forget about Mekala's Bake sale.  Her and friends are making bracelets to sale,
it is this friday 300-630 and sat 900 to 1130.
Love to all,
Julie

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

Sorry I mixed the foundations address and my address correct address is
Emily Cook Foundation
4757 North 24th Street
Omaha, NE 68111
402 932 2977
402 451 3360 Home
----- Original Message -----
From: Julie Cook<mailto:just4juls@...>
To: Amy Churchill<mailto:Amy.L.Churchill@...> ; Amy
F<mailto:Afoust@...> ; Arlene
Almarez<mailto:arlene.almarez@...> ; ATRT<mailto:ATRT@yahoogroups.com>
; AZ & Nay<mailto:azthomas1@...> ; Ben's Daddy<mailto:tom@...> ;
bernadette<mailto:bernadette@...> ; brenda
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Lisa Cook<mailto:Lisa75_2@...> ; Lisa KG<mailto:lgochenour@...> ;
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Sent: Thursday, March 31, 2005 4:19 PM
Subject: [ATRT] events


Just a reminder come out onto Ames street Saturday, April 2nd  at 10 am, from
30th Street to 42nd street for the human prayer chain.

Also do not forget about the Bake Sale on Friday 8th and Sat. 9th at 4542 North
36th Ave. For Noah and Bradley.

We will be collecting money for our trip expenses, We are going to Winthrop, MN
on May 13 thru 15th.  We will be representing The Emily Cook Foundation at Dawn
Andersons fundraiser for Noah and Bradley.  We also want to collect enough money
to pay expense of any Rhabdoid families who want to be at the fundraiser.  We
are also going to have video conferences, and ECF would like to help with
expenses.
A 501c3 number is  available  upon request, and on your donation, please note
"MN Trip Expenses."
Emily Cook Foundation
4757 North 36th Ave
Omaha, NE  68111
402 932 2977 Foundation
402 457 3360 Home
Thanks to ALL
Have a good weekend
Love,
Julie

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



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

Just a reminder come out onto Ames street Saturday, April 2nd  at 10 am, from
30th Street to 42nd street for the human prayer chain.

Also do not forget about the Bake Sale on Friday 8th and Sat. 9th at 4542 North
36th Ave. For Noah and Bradley.

We will be collecting money for our trip expenses, We are going to Winthrop, MN
on May 13 thru 15th.  We will be representing The Emily Cook Foundation at Dawn
Andersons fundraiser for Noah and Bradley.  We also want to collect enough money
to pay expense of any Rhabdoid families who want to be at the fundraiser.  We
are also going to have video conferences, and ECF would like to help with
expenses.
A 501c3 number is  available  upon request, and on your donation, please note
"MN Trip Expenses."
Emily Cook Foundation
4757 North 36th Ave
Omaha, NE  68111
402 932 2977 Foundation
402 457 3360 Home
Thanks to ALL
Have a good weekend
Love,
Julie

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

Photo E-mail   Play
slideshow<http://photos.msn.com/Viewing/Album.aspx?PST=8nK2AN1B!1JkYezkeWQp2eLkT\
FybgKsbRYbSRyeJfthwxas2vqr44t7WfI*cwoNMqc4vPql*biqXafObvNxvZw%24%24> | Download
images
<http://photos.msn.com/viewing/Photos.aspx?pi_Type=SlideshowTask&Task=Download&s\
tppData=&pi_ImagesOnly=1&Folder=nBuRgwTGIGiVKWz!tWcvyXfIDimbgJj0oKRqw765zIE%24&U\
ser=r1TFiPhDLuektpPqT6RcciArSTXZb6kJ&pi_NoLogin=1>
      
<http://photos.msn.com/Viewing/Album.aspx?PST=8nK2AN1B!1JkYezkeWQp2eLkTFybgKsbRY\
bSRyeJfthwxas2vqr44t7WfI*cwoNMqc4vPql*biqXafObvNxvZw%24%24>


This MSN Photo E-mail slideshow will be available for 30 days.
To share high quality pictures with your friends and family using MSN Photo
E-mail, join MSN<http://g.msn.com/0PHenus1/29>.

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

Hi,
Bradley made the news.  Bradley has been on hospice since December.  Sherri left
with him to go Washington DC today, she had enough gas to get there How she was
getting home she did not know yet at the time of our conversation.  I am
collecting Walmart cards for Bradley and Noah.  Please get them to me or send
them to the address listed on their  websites.  Sherri is ready for what ever
the Doctor may tell her.  We all need to be praying for her, and her family. 
Sherri let me know that with walmart cards she can get whatever she needs, even
gas.  I know I have not been sending out many updates, and have not updated
website as much, that is because we have started using the phones, and are
really working on getting some financial backing since the 501c3 number is ready
to go and accept all donations.
http://www.cbs59.com/story.cfm?func=viewstory&storyid=1745<http://wwwcbs59.com/s\
tory.cfm?func=viewstory&storyid=1745>
Love,
Julie

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remember to say a prayer for us today if you can not be at any of the public
prayer places.

God Bless You All.

Love,
The Cooks

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Awareness Dinner have beed found, and are up on the foundation's site.

Got you Lisa P.  You should never hide that beautiful face!!!!!!!!!!!!!!

Love,
Julie
www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>


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

Pass this information on Please
www.caringbridge.org/ne/emilycook<http://www.caringbridge.org/ne/emilycook>
www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>
March 11, 2005 8am
Memorial Park (across from UNO)
Unite our prayers around the World.

Every City and Every Country will unite in prayer on March 11, 2005 at 8am.
Everyone will be praying for Rhabdoid Families, We will be praying for Peace,
Hope, Love, Healing, strength, and a cure.
Special prayers will go out for the Tuzzo family, this is the first anniversary
of Anthony's passing.



After balloon release all are welcome to join us for refreshments and a bible
study at
Afresh Anointing Church
4757 North 24th St
Pastor, Vanessa Ward




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

Added to new pages to web site, Awareness Dinner Pictures, and Hope and Healing,
3 more pages to go

Love,
Julie
www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>

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

Good Morning Everyone,

I am getting ready to do some major updating on the foundations
web site tomorrow. As I was looking at the Rhabdoid slide show,  I looked at the
faces of these children just a few, many more could be added to it.  There are
times I get discouraged
wondering if I will ever make a difference in finding a cure for this disease. 
Then I am remembered of something Holli, Erin's Mom wrote in her Journal, God
will ultimately decide.  She is right.  I am going to do the best that I can and
leave the rest to God.

Some of the decisions I have been facing is how am I going to take the
foundation to the next level, I am know  that I am going to keep promoting and
raising money for the Hopes and Heroes fund. Before and After June.  I have some
opportunities to have the web site create revenue for the Emily Cook Foundation,
but I think I will use this and have the money to go to Hopes and Heroes, that
way we are raising money all year. Not just with Big Events.
Also some people have expressed to me I should get a colored band for Emily Cook
Foundation,
I may choose to do that, but I will also do one for Hopes and Heroes.  Right now
in
the real near future I will be working on building a true support system for
families.  I feel I have been lacking in this.  I have decided to add a website
for siblings.  This website will be password protected, and it will be done
before the week
is out. I am also going to add a prayer, healing page.  I will be adding an
awareness page
this will be a page dedicated to how we are making the world know about
Rhabdoid.
I will be less involved in the Community Enrichment Arm.  I will do Education
Night, and help with the Medical Library, and pediatric hospice, but I will
leave
the rest to Michael and his team.
I have had a lot of people and business who have expressed they want to help
families right now,
make a difference right now.  This we can do, we can help families with bills,
encouragement, prayers,
and I know one person who since we are scattered all over the world wants to
bring us together, so
we can all meet, This is the type of stuff that I want to focus on.

I need people to help me brainstorm ideas we can create money every month so we
can provide material support to families, shipping needed items while they are
in hospital stays to them, purchasing gift cards, maybe we could do a function
and have people bring items and gift cards, kind of like when people ask for
canned goods.

One thing I was reminded tonight as I watched the children's faces in that show,
It is not just
physically healing, but spiritual healing as well.  I must never forget about
the spiritual reasons why
I do what I do.

Thank You for listening, and all of you who fished.
Love,
Julie

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

March 11, 2005 8am
Memorial Park (across from UNO)
Unite our prayers around the World.

Every City and Every Country will unite in prayer on March 11, 2005 at 8am.
Everyone will be praying for Rhabdoid Families, We will be praying for Peace,
Hope, Love, Healing, strength, and a cure.
Special prayers will go out for the Tuzzo family, this is the first anniversary
of Anthony's passing.



After balloon release all are welcome to join us for refreshments and a bible
study at
Afresh Anointing Church
4757 North 24th St
Pastor, Vanessa Ward

Those of you who are not in Omaha, and have not planned anything for this day in
your city or country please do.  Please pass this Email to everyone in your
address book, and make sure you take a whole vacation day so you can join us at
the Church.

As always,
Love,
Julie
www.caringbridge.org/ne/emilycook<http://www.caringbridge.org/ne/emilycook>
www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>

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

On March 11 at 8:00am we are gathering in the largest park in Omaha to pray for
Rhabdoid Families, and to celebrate Anthony Tuzzo's Life.  Renee(Dexter's Aunt)
Karrie Bomar, and Sharles and Anthony's family would like to do the same in
their city.  I am annoucing this at the Awareness Dinner, although my reporter
friends know of this and will cover it I am sure.  I need your help in getting
the word out to other families, after I get home from the church tonight I will
be posting it on the Rhabdoid discussion board.  I am also going to contact
people I know in Chicago.  I will be taking prayer request of families also,
since I will be inviting some prayer worriers to this function.  We will be
releasing balloons also.  Any suggestions we can work together on this please
feel free to contact me.

Love,
Julie

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

Sorry forgot the link

www.emilycookfoundation.bravehost.com<http://www.emilycookfoundation.bravehost.c\
om/>

click on Rhadoid slide show

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

Hi everyone new slideshow is up.  I could not use some of the photos of
families, because they would not work so my solution to that is I will print the
pictures and display them around the dinner area.  This slide show is slower and
I guess imight like it better, tell me what you think?  Also this slideshow will
stay on the website and if you want your childs picture on it, please email it
to me I hope to add new ones every week.  Next week I will be adding more pages
to the site, an about us, prayer page, Family of the month or week, something to
that effect and an awareness page how we are getting the word out.  Lots to do

Bye for now,

Love,
Julie

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

Julie,
I wanted to let you know about a new website called PBT Angels (pediatric brain
tumor angels).  This is a site just for parents whose children with brain tumors
are in hospice or have died.  The site is
http://health.groups.yahoo.com/group/PBTAngels/<http://health.groups.yahoo.com/g\
roup/PBTAngels/>.  You can join from the website or send a post to
PBTAngels-subscribe@yahoogroups.com<mailto:PBTAngels-subscribe@yahoogroups.com>

This was an asked for group from Pediatric Brain Tumors.  Some felt like they
could not really vent their emotions for fear of affecting new one adversely. 
Others just didn't want to hear about Wish Trips and birthdays and such.  Right
now it is a small group but we just opened it up the beginning of this month.  I
was talking to a mom whose 18 month old died of a GBM last year.  They have also
started a foundation in their girl's name.  I thought perhaps it might be a
place for you to share all you do too.

Please feel free to pass this address along to anyone who might benefit.  The
main moderator of the group is Elizabeth Bennett.  Her son had a medullo dx
before he was one.  They went to St. Jude.  He recurred and died in Nov 2003. 
Elizabeth is an amazing woman.  You can see Bennett's Butterfly Fund at -
http://www.bennettsbluebutterfly.org/index.htm<http://www.bennettsbluebutterfly.\
org/index.htm>  You might wish to check out the Butterfly Blessing pages and the
Butterfly Angel Pages.

I think I did try to send an invitation off list to Heather and to Anastasia. 
If this seems like it would be a good place for you too please feel free to
join.  I am not sure if you got them as it was not from this list and may have
fallen into junk mail.

Prayers to Ben and to Noah.

With Hope,
Loice



   ----- Original Message -----


   I am asking for you to pray for Ben, he is having so much pain, and giving him
the amount of meds they have to give him is toxic for his body.  This breaks my
heart.  The bowens are asking that we pray for complete wisdom when dealing with
the pain, and meds.  They have not slept in days.

   Please pray for Noah.  They have not updated the web site, buy by reading the
guestbook we know they did not get good news from the MRI and are planning to go
home soon.  It is a hard thing to walk out of the hospital for the last time. 
Please pray for strength and peace for their family.

   Thank you all for praying

   Love, Julie

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





   Yahoo! Groups Links









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