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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