My recently finished her radiation treatment for Ewing. We are still
waiting for the results. Is it common to just give radiation therapy
without chemotherapy. Her leg and body still hurts and the last
reatment was 3 weeks ago. Please help both of us with any information
as to the treatment. Oh yes, the cancer is in her thigh.

ChemoAngels Cancer Support Organization is a wonderful resource for
people who are battling cancer! Featured in People magazine last
summer, in the July 19, 2004 issue, ChemoAngels is a volunteer
organization dedicated to adding a ray of sunshine to the lives of
those undergoing treatment for cancer. We believe that people who are
going through the physical, emotional and mental rigors of
chemotherapy, radiation, surgery, or other cancer therapies deserve
some pampering and special treatment!
To request a copy of the article, write to admin@...
Many of our ChemoAngel volunteers are cancer survivors themselves, or
people whose lives have been affected by cancer in some way. If your
application is accepted, you will be "adopted" by a ChemoAngel who,
through cards, cheerful notes, small gifts, etc, sent to you
postally, will support and encourage you for the duration of your
course of treatment, or for as long as necessary.  Give us a try!
http://www.ChemoAngels.com

Hai people. I'm 20 & diagonised with sarcoma on 2002. Evrything goes
great after treatment

Paige, I would try joining the www.acor.org ewings sarcoma group, there are a
ton of ewings surviors, we are personally dealing with relapse right now, but
there are plenty who have been way out of the 5 year survival relapse free. 
That group has many more members and a lot of info.  Mel

paigegwu <paigegwu@...> wrote:
Hey everyone, my name is Paige and I was diagnosed with Ewings
Sarcoma in 2000, I would love to talk to anyone who has been through
treatment and compare notes, everyone that I know that has had
Ewings hasn't made it or has relapsed so any support would be
awesome!





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

Paige,
My son Vinnie was diagnosed with Ewings Sarcoma in 2000. He had 10 months of
Chemo and 3 months of radiation. He is now in remission and is doing very well.
He had a tumor in his spine which was resected upon diagnosis. He had
compression on his spine and suffered short term paralysis...had to learn to
walk again. He was 18 years old upon diagnosis and celebrated his 23rd birthday
on February 2nd. I can only tell you that you should never give up faith.Take
good care of yourself, eat the right foods and keep the right attitude and all
the odds will be in your favor. God Bless.

Sharon

paigegwu <paigegwu@...> wrote:

Hey everyone, my name is Paige and I was diagnosed with Ewings
Sarcoma in 2000, I would love to talk to anyone who has been through
treatment and compare notes, everyone that I know that has had
Ewings hasn't made it or has relapsed so any support would be
awesome!





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

Dear Paige,
My daughter Caitlin was diagnosed in 2002 and is doing
great. She did 48 weeks of chemo and 30 radiation
treatments and had a tumor resection. She is eleven.
Yes, there are long term survivors of Ewings.
Marybeth
--- Lexi Chopp <smallchopp@...> wrote:

> Hi,
> my name is Lexi and i was diagnosed in 1996.  i
> would love to chat sometime.
>
> paigegwu <paigegwu@...> wrote:
>
> Hey everyone, my name is Paige and I was diagnosed
> with Ewings
> Sarcoma in 2000, I would love to talk to anyone who
> has been through
> treatment and compare notes, everyone that I know
> that has had
> Ewings hasn't made it or has relapsed so any support
> would be
> awesome!
>
>
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/ewingssarcoma/
>
>    To unsubscribe from this group, send an email to:
> ewingssarcoma-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
> ---------------------------------
> Do you Yahoo!?
>  Yahoo! Search presents - Jib Jab's 'Second Term'
>
> [Non-text portions of this message have been
> removed]
>
>




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Hi,
my name is Lexi and i was diagnosed in 1996.  i would love to chat sometime.

paigegwu <paigegwu@...> wrote:

Hey everyone, my name is Paige and I was diagnosed with Ewings
Sarcoma in 2000, I would love to talk to anyone who has been through
treatment and compare notes, everyone that I know that has had
Ewings hasn't made it or has relapsed so any support would be
awesome!





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http://groups.yahoo.com/group/ewingssarcoma/

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  Yahoo! Search presents - Jib Jab's 'Second Term'

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

Hey everyone, my name is Paige and I was diagnosed with Ewings
Sarcoma in 2000, I would love to talk to anyone who has been through
treatment and compare notes, everyone that I know that has had
Ewings hasn't made it or has relapsed so any support would be
awesome!

This is a very serious surgery with great detail involved.  If
this is for you or a child, let it be know that it will take atleast
a year to recover.
   I spent the better part of seven, eight months lying on my back in
a brace to support my hip.  Not comfortable at all and very
frustration to have to wear it.  I couldn't put weight on my rt foot
for almost nine mos, until the graft bonded and became stronge
enough.
   Should note that for the first couple of weeks, the pain is
bearable but not pleasent, take the pain pills!
   The sugery takes away muscles around the buttocks, so the strength
is decreased, and because the surgery basically bolts you together
flexablilty is severly limited, cannot run or jump anymore either.
There is more, but that is a start for now.  you have me email need
more let  me know.

i've have actually had this type of surgery to remove a tumor.  need info on it
you can email me back asking any questions you would like.
garrett

bataljkica <no_reply@yahoogroups.com> wrote:

correctly: HEMIPELVECTOMY
Links:
http://www.amputee-online.com/teresam/hemip.html
http://www.hphdhelp.org
http://www.hphdhelp.org/HDHPO.pdf

external HEMIPELVECTOMY:
http://www.sarcoma.org/publications/mcs/ch19.pdf

internal HEMIPELVECTOMY:
http://weborto.net/forum/1033220012/1033623723/hemipelvicectomy.pdf


--- In ewingssarcoma@yahoogroups.com, "Jennifer" <jnjobrien@s...>
wrote:
>
> Has anyone ever heard of a "hemipelvicectomy???" Any info would
> help!!





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

correctly: HEMIPELVECTOMY
Links:
http://www.amputee-online.com/teresam/hemip.html
http://www.hphdhelp.org
http://www.hphdhelp.org/HDHPO.pdf

external HEMIPELVECTOMY:
http://www.sarcoma.org/publications/mcs/ch19.pdf

internal HEMIPELVECTOMY:
http://weborto.net/forum/1033220012/1033623723/hemipelvicectomy.pdf


--- In ewingssarcoma@yahoogroups.com, "Jennifer" <jnjobrien@s...>
wrote:
>
> Has anyone ever heard of a "hemipelvicectomy???" Any info would
> help!!

Has anyone ever heard of a "hemipelvicectomy???" Any info would
help!!

hey all

I thought I would post this because they damn near took away almost all my
bills. I think its worth at least checking out if you have too many bills...

http://grealus.com/adeh1







I posted this on ewingssarcoma, if you dont want to be a member anymore just
email ewingssarcoma-unsubscribe@yahoogroups.com

Re-finance now, even with bad-credit!

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http://grealus.com/azwh1

I posted this on ewingssarcoma, if you dont want to be a member anymore just
email ewingssarcoma-unsubscribe@yahoogroups.com

what do you mean?  You had Ewing's 2 times and have
been in remission for a year?  Please let me know
more, my husband is dealing with this for his second
time we are in the middle of treatment right now.
However, that is great you are out.  Thanks, Melissa
--- Kyle <kylefrick_ks@...> wrote:

>
> Well, i am a little more than one year out from my
> second bout with
> this...and so far so good.I can finally drive again,
> and i had a
> really good summer. I hope everyone else that is
> going through this
> is doing well and you are always in my prayers.
>
>
>
>




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Well, i am a little more than one year out from my second bout with
this...and so far so good.I can finally drive again, and i had a
really good summer. I hope everyone else that is going through this
is doing well and you are always in my prayers.

The etopside, with ifosimide, I have heard has worked,
also, for my husband who has recurrent ewing's he did
the topotecan/cytoxn/vincristine and that worked for a
while.  You may want to look at the esbabies.com site
for stories and join the acor esarcoma group.  There
is a load of information from all the wonderful people
on there.  Many of whom are now in our shoes as well.
Melissa

--- Lexi Chopp <smallchopp@...> wrote:

> Hello,
> I am now 13, but had Ewings when I was 5.  My tumors
> filled my chest wall with mets to my lungs.  I went
> through surgery, radiation, stem cell transplant,
> and a chemo protocol which included Etopside.  It
> had good effects for me as well.  Please let me know
> if I can help you in any way.  My prayers are with
> you and your family.
>
> LC
>
> david Wylie <david43australia@...> wrote:
> Hi all,
>
> My son Tom, has returned with with ewings and had it
> found in his
> eye socket, two in pelvis, and a few in lung. He
> first had it in
> femur and lung and has had 20 months clear. Hes a
> battler and the
> new chemo is working well, eye socket gone. We wait
> three weeks now
> for the response from Etoposide, which so far has
> been good. As you
> can see we are working on the positive, anyway..does
> anywone have
> any info on other treatments that worked well the
> second time
> around. Our oncologist talks about some new
> targetting drugs which
> he is checking on.
>
> Tom is 19 byt he way, anyway, any help from people
> who have got
> through it would be appreciated.
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
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>
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> http://groups.yahoo.com/group/ewingssarcoma/
>
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> ewingssarcoma-unsubscribe@yahoogroups.com
>
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> Yahoo! Terms of Service.
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>
>
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> Win 1 of 4,000 free domain names from Yahoo! Enter
> now.
>
> [Non-text portions of this message have been
> removed]
>
>




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David,
Where does Tom go for his treatments. My wife had ewings and went to
Massachusetts General Hospital in Boston. Her Dr. was David C. Harmon. He was
great but could not stop it from spreading throughout her body.
Dan

david Wylie <david43australia@...> wrote:
Hi all,

My son Tom, has returned with with ewings and had it found in his
eye socket, two in pelvis, and a few in lung. He first had it in
femur and lung and has had 20 months clear. Hes a battler and the
new chemo is working well, eye socket gone. We wait three weeks now
for the response from Etoposide, which so far has been good. As you
can see we are working on the positive, anyway..does anywone have
any info on other treatments that worked well the second time
around. Our oncologist talks about some new targetting drugs which
he is checking on.

Tom is 19 byt he way, anyway, any help from people who have got
through it would be appreciated.


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

Hello,
I am now 13, but had Ewings when I was 5.  My tumors filled my chest wall with
mets to my lungs.  I went through surgery, radiation, stem cell transplant, and
a chemo protocol which included Etopside.  It had good effects for me as well. 
Please let me know if I can help you in any way.  My prayers are with you and
your family.

LC

david Wylie <david43australia@...> wrote:
Hi all,

My son Tom, has returned with with ewings and had it found in his
eye socket, two in pelvis, and a few in lung. He first had it in
femur and lung and has had 20 months clear. Hes a battler and the
new chemo is working well, eye socket gone. We wait three weeks now
for the response from Etoposide, which so far has been good. As you
can see we are working on the positive, anyway..does anywone have
any info on other treatments that worked well the second time
around. Our oncologist talks about some new targetting drugs which
he is checking on.

Tom is 19 byt he way, anyway, any help from people who have got
through it would be appreciated.


Yahoo! Groups SponsorADVERTISEMENT


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

Hi all,

My son Tom, has returned with with ewings and had it found in his
eye socket, two in pelvis, and a few in lung. He first had it in
femur and lung and has had 20 months clear. Hes a battler and the
new chemo is working well, eye socket gone. We wait three weeks now
for the response from Etoposide, which so far has been good. As you
can see we are working on the positive, anyway..does anywone have
any info on other treatments that worked well the second time
around. Our oncologist talks about some new targetting drugs which
he is checking on.

Tom is 19 byt he way, anyway, any help from people who have got
through it would be appreciated.

Garrett,
I tell you both as a minister/counselor and one who has helped a spouse go
through this: tell your wife how you feel. I am not sure if you already have but
you must. Where do  you go for treatment? My wife went to Massachusetts General
Hospital in Boston. Tell your wife that you don't have stregnth left. She will
either accept that and realize what is ahead or she'll freak out like I did and
then she'll be able to accept it later. I knew when my wife could take no more
and accepted that. She was not able fight anymore. That is okay. If your wfe
doesn't know this though she can't help you through it. My wife was 26 when she
passed away and we had a 1 year old son that we had just adopted in August of
last year. Are there other mets besides the lungs? Where was the primary tumor?
Know that you can email me anytime at elliesman2001@.... Your wife can as
well. I may understand things that she is going through that you can not. You
are going through things that she can not
  understand as well. You and your family are in my prayers.
Dan

garrettj32 <garrettj32@...> wrote:
   Its been a long time since i've even log in or even read some of
the messages that people sent. Why, because at times it is dis-
hearting to read them, whether there from actual patients, family
members or friends.  It makes my pain and fear of this disease
worse, so i justed stopped until today.  I don't know why i read
your letter, just did.
   I have been fighting for two years and counting. Have done the
protocal for ewings, chemo, surgery and radiation.  Finished over a
year ago, had 3 mos off then had first c-scan back in july of 03'.
It showed that it had spread to the lungs.  What i didn't want to
happen and feared the most because of the research that i had done
throught had.
   To hear my doc say "your going to die," is, well, i went numb.
and can't put it into words the emotions that ran through me.  The
worst is going home and telling my parents, wife and siblings the
news, and telling them that i will start chemo again.  Then to look
at my little boy who was going on 1yr at the time and know that i
could never give up, never stop until every option was used or until
i took my last breath, that i will fight for him.  I don't want to
miss out on his life, but at the same time i don't want him to form
a memory of his father always being sick and that's all he knows of
me.  At times i say to myself that if i'm to die then i want to go
as quickly as possible so that my son doesn't remember his daddy
this way.  Then i slap myself and know that i will keep fighting
because i'm to stubborn not to.
   I'm 26 going on 80.  my body has taken so much abuse, the chemo,
radiation, surgery and all of the little problems along the way that
it's tired and not much strength left.  I dare not show it to my
family, i keep my chin held high and keep pressing forward, fearing
that if they sense how tired i am, the more stress and anxiety they
will have to deal with.   My mother has been with me every step of
the way.  She too has battled cancer, a survivor of breast cancer
twice.  She knows all to well what i'm going through and others of
the like.
Recently i just had surgery to remove tumors from my rt lung, i'm
recoving from it still, will do it again on the lt lung in upcoming
month. As i say the battle rages on.
   To all of those going through this, whether your patients, family
or friends no matter how tough it gets, or how much you hurt
physically or emotionally,just remember there is always something to
fight for each day.  You just have to remind yourself what they are
from the simplest things to the most important things in life.
   Also, i've come to except that no matter how tough you think you
are, and always want to do things on your own, it's not a bad thing
to ask for help.  We all need it at some point.


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

Have you ever considered a stem cell transplant?  I had Ewing's that spread to
my lungs.  After surgery, chemo, and radiation i had a stem cell.  nobody in my
family was a good enough match, so my own cells were harvested, frozen, then
placed back in my body.  Please let me know if there is anything I can do to
help, or any information I can provide you with.

garrettj32 <garrettj32@...> wrote:  Its been a long time since i've even
log in or even read some of
the messages that people sent. Why, because at times it is dis-
hearting to read them, whether there from actual patients, family
members or friends.  It makes my pain and fear of this disease
worse, so i justed stopped until today.  I don't know why i read
your letter, just did.
   I have been fighting for two years and counting. Have done the
protocal for ewings, chemo, surgery and radiation.  Finished over a
year ago, had 3 mos off then had first c-scan back in july of 03'.
It showed that it had spread to the lungs.  What i didn't want to
happen and feared the most because of the research that i had done
throught had.
   To hear my doc say "your going to die," is, well, i went numb.
and can't put it into words the emotions that ran through me.  The
worst is going home and telling my parents, wife and siblings the
news, and telling them that i will start chemo again.  Then to look
at my little boy who was going on 1yr at the time and know that i
could never give up, never stop until every option was used or until
i took my last breath, that i will fight for him.  I don't want to
miss out on his life, but at the same time i don't want him to form
a memory of his father always being sick and that's all he knows of
me.  At times i say to myself that if i'm to die then i want to go
as quickly as possible so that my son doesn't remember his daddy
this way.  Then i slap myself and know that i will keep fighting
because i'm to stubborn not to.
   I'm 26 going on 80.  my body has taken so much abuse, the chemo,
radiation, surgery and all of the little problems along the way that
it's tired and not much strength left.  I dare not show it to my
family, i keep my chin held high and keep pressing forward, fearing
that if they sense how tired i am, the more stress and anxiety they
will have to deal with.   My mother has been with me every step of
the way.  She too has battled cancer, a survivor of breast cancer
twice.  She knows all to well what i'm going through and others of
the like.
Recently i just had surgery to remove tumors from my rt lung, i'm
recoving from it still, will do it again on the lt lung in upcoming
month. As i say the battle rages on.
   To all of those going through this, whether your patients, family
or friends no matter how tough it gets, or how much you hurt
physically or emotionally,just remember there is always something to
fight for each day.  You just have to remind yourself what they are
from the simplest things to the most important things in life.
   Also, i've come to except that no matter how tough you think you
are, and always want to do things on your own, it's not a bad thing
to ask for help.  We all need it at some point.


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---------------------------------
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    To visit your group on the web, go to:
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    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




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

Its been a long time since i've even log in or even read some of
the messages that people sent. Why, because at times it is dis-
hearting to read them, whether there from actual patients, family
members or friends.  It makes my pain and fear of this disease
worse, so i justed stopped until today.  I don't know why i read
your letter, just did.
   I have been fighting for two years and counting. Have done the
protocal for ewings, chemo, surgery and radiation.  Finished over a
year ago, had 3 mos off then had first c-scan back in july of 03'.
It showed that it had spread to the lungs.  What i didn't want to
happen and feared the most because of the research that i had done
throught had.
   To hear my doc say "your going to die," is, well, i went numb.
and can't put it into words the emotions that ran through me.  The
worst is going home and telling my parents, wife and siblings the
news, and telling them that i will start chemo again.  Then to look
at my little boy who was going on 1yr at the time and know that i
could never give up, never stop until every option was used or until
i took my last breath, that i will fight for him.  I don't want to
miss out on his life, but at the same time i don't want him to form
a memory of his father always being sick and that's all he knows of
me.  At times i say to myself that if i'm to die then i want to go
as quickly as possible so that my son doesn't remember his daddy
this way.  Then i slap myself and know that i will keep fighting
because i'm to stubborn not to.
   I'm 26 going on 80.  my body has taken so much abuse, the chemo,
radiation, surgery and all of the little problems along the way that
it's tired and not much strength left.  I dare not show it to my
family, i keep my chin held high and keep pressing forward, fearing
that if they sense how tired i am, the more stress and anxiety they
will have to deal with.   My mother has been with me every step of
the way.  She too has battled cancer, a survivor of breast cancer
twice.  She knows all to well what i'm going through and others of
the like.
  Recently i just had surgery to remove tumors from my rt lung, i'm
recoving from it still, will do it again on the lt lung in upcoming
month. As i say the battle rages on.
   To all of those going through this, whether your patients, family
or friends no matter how tough it gets, or how much you hurt
physically or emotionally,just remember there is always something to
fight for each day.  You just have to remind yourself what they are
from the simplest things to the most important things in life.
   Also, i've come to except that no matter how tough you think you
are, and always want to do things on your own, it's not a bad thing
to ask for help.  We all need it at some point.

Alex you are remarkable. This disease has made you a better perrson. I am sure
that you were already a wonderful person and that is exactly why God makes good
people suffer too. Because he knows that you will shine the light of love and
hope to others despite the darkness and fear that surround you.
Dan

patricia <patriciasmith@...> wrote:
Hi Alex


Yours is a wonderful story, would you mind letting  us know what was the extent
of the ewings when you went for your first treatment?
as there are still a lot  dying of ewings that may benefit from the exact chemo
you had, and type of radiation.
How soon did you start  radiation after the chemo . Had the ewings spread  from
the primary site?

It is stories  like yours that could give hope to others.

regards
Patricia

   ----- Original Message -----
   From: wakefkitten
   To: ewingssarcoma@yahoogroups.com
   Sent: Friday, July 30, 2004 2:44 AM
   Subject: [Ewings Sarcoma] Hope


   Parents, friends, surviviors, and struglling souls...

   I promise there is hope. My name is Alex, I'm a 19 year old college
   student, and I beat a terminal case of Ewing's sarcoma. I'm going in
   for my one year anniversary 3-month moniter since I finsihed chemo. i
   understand your pain and you anxiety. I know what it's like to cry
   until your thirsy and to dread and fear until you wonder if God
   exists. My parents, family members, and friends went through it all
   with me. But there is always hope. You have to find the deepest,
   darkest, most evil part of yourselg that wants to live and say "screw
   it. I don't feel like dying today." I was diagnsoed 3 weeks after my
   high school graduation. I never went through counseling (although I
   stil lthink my parents could have used it). I never went and asked
   for a church group to pray for me (they did anyways). I just really
   didn't feel like NOT going to college. After my first treatment, I
   crawled on my hands and knees to the bathroom for a week. I'll be
   damned if anyone was going to help me. I'll be honest, I hid a lot fo
   the pain and upset from them. When it got too bad. When I couldn't
   sleep, or I woke up with some sort of violent sickness, I would call
   for them. But I had to do most of it on my own because I wanted to do
   most of it my own way.
   I remember they wanted to amputate my arm. I said no. They wanted to
   remove the bones out and replace them with some metal atrocity. I
   freaked out the nigth before the surguery and said NO. I underwent
   the same rigious chemo and saw a Ewing's Specialist at the Univeristy
   of Flordia. This man was a godsend. He didn't act like a doctor. And
   he didn't treat me like a new piece of research of case study. He was
   charming, intelligent, brought other bright med students in who were
   equally wonderful...And then he saved my life, of that I'm sure.
   He set up a radiation theraphy regime that was to be followed by my
   hospital here in NC twice a day for 6 weeks. I was even stubborn
   enough to not finish my last chemo treatment. Now here I am a year
   later, reading all of you stories and sadness the night before I hope
   my own doesn't start again and I wonder where you hope went? The
   endless nights in the hopistals? The constant medical garble you
   researched for hours?
   Here's the cure for Ewing's Sarcoma:
   All it takes is one good patient and one good docotor. They each must
   believe in themselves and equally in eachother. The patient must
   think of this as nothing more than a bad inconvience for the time
   being. The doctor must be compassionate, honest, and focused. They
   will learn and live together. They will fight together. An
   eventually, they will succeed. I pass this information to all of you,
   and open my heart for anyone who needs it. I'm stying going to be
   praying a little longer tonight about what's to come tomorrow. To
   ease your sufferings will be in my prayers as well. I was supposed to
   die. As proof of my hope (and stubbourness) I live.


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

Hi Alex


Yours is a wonderful story, would you mind letting  us know what was the extent
of the ewings when you went for your first treatment?
as there are still a lot  dying of ewings that may benefit from the exact chemo
you had, and type of radiation.
How soon did you start  radiation after the chemo . Had the ewings spread  from
the primary site?

It is stories  like yours that could give hope to others.

regards
Patricia

   ----- Original Message -----
   From: wakefkitten
   To: ewingssarcoma@yahoogroups.com
   Sent: Friday, July 30, 2004 2:44 AM
   Subject: [Ewings Sarcoma] Hope


   Parents, friends, surviviors, and struglling souls...

   I promise there is hope. My name is Alex, I'm a 19 year old college
   student, and I beat a terminal case of Ewing's sarcoma. I'm going in
   for my one year anniversary 3-month moniter since I finsihed chemo. i
   understand your pain and you anxiety. I know what it's like to cry
   until your thirsy and to dread and fear until you wonder if God
   exists. My parents, family members, and friends went through it all
   with me. But there is always hope. You have to find the deepest,
   darkest, most evil part of yourselg that wants to live and say "screw
   it. I don't feel like dying today." I was diagnsoed 3 weeks after my
   high school graduation. I never went through counseling (although I
   stil lthink my parents could have used it). I never went and asked
   for a church group to pray for me (they did anyways). I just really
   didn't feel like NOT going to college. After my first treatment, I
   crawled on my hands and knees to the bathroom for a week. I'll be
   damned if anyone was going to help me. I'll be honest, I hid a lot fo
   the pain and upset from them. When it got too bad. When I couldn't
   sleep, or I woke up with some sort of violent sickness, I would call
   for them. But I had to do most of it on my own because I wanted to do
   most of it my own way.
   I remember they wanted to amputate my arm. I said no. They wanted to
   remove the bones out and replace them with some metal atrocity. I
   freaked out the nigth before the surguery and said NO. I underwent
   the same rigious chemo and saw a Ewing's Specialist at the Univeristy
   of Flordia. This man was a godsend. He didn't act like a doctor. And
   he didn't treat me like a new piece of research of case study. He was
   charming, intelligent, brought other bright med students in who were
   equally wonderful...And then he saved my life, of that I'm sure.
   He set up a radiation theraphy regime that was to be followed by my
   hospital here in NC twice a day for 6 weeks. I was even stubborn
   enough to not finish my last chemo treatment. Now here I am a year
   later, reading all of you stories and sadness the night before I hope
   my own doesn't start again and I wonder where you hope went? The
   endless nights in the hopistals? The constant medical garble you
   researched for hours?
   Here's the cure for Ewing's Sarcoma:
   All it takes is one good patient and one good docotor. They each must
   believe in themselves and equally in eachother. The patient must
   think of this as nothing more than a bad inconvience for the time
   being. The doctor must be compassionate, honest, and focused. They
   will learn and live together. They will fight together. An
   eventually, they will succeed. I pass this information to all of you,
   and open my heart for anyone who needs it. I'm stying going to be
   praying a little longer tonight about what's to come tomorrow. To
   ease your sufferings will be in my prayers as well. I was supposed to
   die. As proof of my hope (and stubbourness) I live.


         Yahoo! Groups Sponsor
               ADVERTISEMENT





------------------------------------------------------------------------------
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     a.. To visit your group on the web, go to:
     http://groups.yahoo.com/group/ewingssarcoma/

     b.. To unsubscribe from this group, send an email to:
     ewingssarcoma-unsubscribe@yahoogroups.com

     c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




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

you are truly amazing- I find such faith and strength
in you and in your recovery process- your story is
similiar to my sons he was diagnosed 4 months after hs
graduation--bless you and thanks for all of  the hope
and faith you are sharing with the family and friends
of folks with ewings-please pass on the hospital and
dr. name to the group as it is so hard to find
qualified people to deal with this cancer-I searched
very hard for experts in the field. Thanks for sharing
your story- and god bless you and your family
--- wakefkitten <wakefkitten@...> wrote:

> I will totally take the time to talk with any of you
> via chat or
> emails about how to beat this. It's not hard but
> it's not easy. But
> it can be beaten. Luck has nothing to do with it.
>
>




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I will totally take the time to talk with any of you via chat or
emails about how to beat this. It's not hard but it's not easy. But
it can be beaten. Luck has nothing to do with it.

Parents, friends, surviviors, and struglling souls...

I promise there is hope. My name is Alex, I'm a 19 year old college
student, and I beat a terminal case of Ewing's sarcoma. I'm going in
for my one year anniversary 3-month moniter since I finsihed chemo. i
understand your pain and you anxiety. I know what it's like to cry
until your thirsy and to dread and fear until you wonder if God
exists. My parents, family members, and friends went through it all
with me. But there is always hope. You have to find the deepest,
darkest, most evil part of yourselg that wants to live and say "screw
it. I don't feel like dying today." I was diagnsoed 3 weeks after my
high school graduation. I never went through counseling (although I
stil lthink my parents could have used it). I never went and asked
for a church group to pray for me (they did anyways). I just really
didn't feel like NOT going to college. After my first treatment, I
crawled on my hands and knees to the bathroom for a week. I'll be
damned if anyone was going to help me. I'll be honest, I hid a lot fo
the pain and upset from them. When it got too bad. When I couldn't
sleep, or I woke up with some sort of violent sickness, I would call
for them. But I had to do most of it on my own because I wanted to do
most of it my own way.
I remember they wanted to amputate my arm. I said no. They wanted to
remove the bones out and replace them with some metal atrocity. I
freaked out the nigth before the surguery and said NO. I underwent
the same rigious chemo and saw a Ewing's Specialist at the Univeristy
of Flordia. This man was a godsend. He didn't act like a doctor. And
he didn't treat me like a new piece of research of case study. He was
charming, intelligent, brought other bright med students in who were
equally wonderful...And then he saved my life, of that I'm sure.
He set up a radiation theraphy regime that was to be followed by my
hospital here in NC twice a day for 6 weeks. I was even stubborn
enough to not finish my last chemo treatment. Now here I am a year
later, reading all of you stories and sadness the night before I hope
my own doesn't start again and I wonder where you hope went? The
endless nights in the hopistals? The constant medical garble you
researched for hours?
Here's the cure for Ewing's Sarcoma:
All it takes is one good patient and one good docotor. They each must
believe in themselves and equally in eachother. The patient must
think of this as nothing more than a bad inconvience for the time
being. The doctor must be compassionate, honest, and focused. They
will learn and live together. They will fight together. An
eventually, they will succeed. I pass this information to all of you,
and open my heart for anyone who needs it. I'm stying going to be
praying a little longer tonight about what's to come tomorrow. To
ease your sufferings will be in my prayers as well. I was supposed to
die. As proof of my hope (and stubbourness) I live.

My deepest sympathy is with you.  I will be praying
for you and your family.  Melissa

--- roady19607 <mary.dunn2@...> wrote:
> Just wanted to update you all and thank you for your
> kind replies.
> Michael died on wenesday 23rd june 2004 @5.25 a.m.in
> my arms with
> his brother and girlfriend by his side.It was far
> from peacefull.
> The drugs gave him no relief at the end. He was very
> distressed and
> agitated and scared for 3 and 1/2 hours before his
> final breath.It
> was so upsetting for us all as there was nothing we
> could do to give
> him relief. One nurse said that despite the
> medication, he just
> didnt want to go, nice thought, but i believe he was
> not given
> enough and that the end should have been peacefull
> as we were
> promised and not as horrific as it was.But, at last,
> he has no
> pain.Its so sad that death was to be his only escape
> from this. He
> went through hell with this disease.It is such a
> vicious cancer,
> like an alien invading the body that wont give up.
> Michael is to be
> cremated on thursday, and on that day, I will hold
> his hand for the
> last time ever which is so hard to come to terms
> with. I just cant
> imagine that I will never see him again.Never... I
> will allways read
> this site, as I hope one day to read that a cure has
> been found,
> although it would be too late for Michael.I would
> also urge families
> not to give up,It is a hard journey and some people
> do survive this
> thing and go on to have full lives and children too.
>
>




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Dear Teresa,

I have faithfully been reading the emails on your son and praying on my knees. I
haven't written anything because of my fear that I could be in your shoes. I am
the mother of a ten year old girl who was diagnosed with Ewings Stage 4 in 2002.
We have been in remission for a year. We pray for a cure everynight and pray
that nobody else goes through this or is diagnosed with this vicious disease. My
daughter says their our angels and they are the ones who have given her
strength. May God use your son in heaven to be an angel to a child who goes
through this like ours. I am so sorry for your loss and pray for you and your
family during this time.

Marybeth Adkins

teresa alvarez <alvteresa@...> wrote:
my prayers continue for your family and for Michael-i
am saddened that they could not give your son enough
painmedication -my son michael age 19 also passed away
from ewings 2 years ago-i hold on to the hope that he
is at peace and that I will see him again in a better
place. I believe that this web site is so important to
share information- i too pray for a cure---



--- roady19607 <mary.dunn2@...> wrote:
> Just wanted to update you all and thank you for your
> kind replies.
> Michael died on wenesday 23rd june 2004 @5.25 a.m.in
> my arms with
> his brother and girlfriend by his side.It was far
> from peacefull.
> The drugs gave him no relief at the end. He was very
> distressed and
> agitated and scared for 3 and 1/2 hours before his
> final breath.It
> was so upsetting for us all as there was nothing we
> could do to give
> him relief. One nurse said that despite the
> medication, he just
> didnt want to go, nice thought, but i believe he was
> not given
> enough and that the end should have been peacefull
> as we were
> promised and not as horrific as it was.But, at last,
> he has no
> pain.Its so sad that death was to be his only escape
> from this. He
> went through hell with this disease.It is such a
> vicious cancer,
> like an alien invading the body that wont give up.
> Michael is to be
> cremated on thursday, and on that day, I will hold
> his hand for the
> last time ever which is so hard to come to terms
> with. I just cant
> imagine that I will never see him again.Never... I
> will allways read
> this site, as I hope one day to read that a cure has
> been found,
> although it would be too late for Michael.I would
> also urge families
> not to give up,It is a hard journey and some people
> do survive this
> thing and go on to have full lives and children too.
>
>


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