My name is Garrett, i'm 25, and i found out that i had ewings in
May of '02.  I came across this support group the other day when i
was doing some reseach on ewings.  I thought that it would be nice to
talk with other people who have had ewings or have it now.  Mostly
because i get treated by a peds oncologist and there isn't really
anyone my age that has ewings.
    So i've been going through chemo since june,3, i have tolerated it
very well and have had no real side effects from it, besides the
usual hair lose.  Well my tumor was located in my right pelvic area.
I had surgery in september to remove it an also my pelvic bone, that
was replaced with an allegraft.  Since the surgery its been an up and
down.  The surgery took a lot out of me, i lost 20 plus pounds and
had some kidney problems.  But, at this time i'm feeling good, and
have resumed my chemo schedule, and i believe that i will have to
start radiation after a couple more treatments.
   I guess that's all, i look forward to hearing from others.

--- In ewingssarcoma@y..., "airbrush1987" <gabe19902000@y...> wrote:
> hi, im 15 and i have es i have a tumor in my hip and 11 in my
lungs.
> im on chemo now and im looking for other teens that have this.
> thanks.                           Gabe>>

hi Gabe--i'm not a teenager, but i did have ES in my hip area.  it
started in my left illiac crest to be exact.  if you'd like to talk
more or have any questions, feel free to email me here or directly at
chrisbonham@...

chris

hi, im 15 and i have es i have a tumor in my hip and 11 in my lungs.
im on chemo now and im looking for other teens that have this.
thanks.                           Gabe

Hi,
Janet here…(Gary's sister)
Jenifer & I visited Gary this last weekend and he is slowly improving.
He has small movement in his right side, but the left eye doesn't open.
The right side of his face is a little droopy but has no problem
showing emotions…joy, laughter, smiles!!  His attitude is terrific and
he has learned his lesson on PATIENCE!  Friday evening, he wanted to
mess with the TV, figuring out all the dials and buttons.  At one
point, he had the volume up so loud, I'm sure they could hear it down
the street!  I pasted a velcro button on the nurse call button so that
he could "feel" it instead of having to search for it.  After calling
the nurse about 10 times, they told him to lay off!!  Saturday, I
watched a DVD movie (Support Your Local Gunfighter) with him on my
laptop.  He would like me to leave it there for him!  He insisted on
getting out of bed on Sunday and sat in a chair for a couple of hours.
We washed his hair, shaved him and gave him a manicure.  They
transferred him to a wheelchair and he let us know that he wanted to go
outside!  So, outside we went, on the patio where he soaked up the sun
and nodded off for about an hour!  We always hate to leave him and
drive back to Albuquerque.  He always does something "exceptional"
while we're there like a small child pushing his limits.  I bought him
a couple of t-shirts and boxers to sew velcro (easy access for the
stomach tube) on the sleeves/legs so that he can get out of the
hospital gown on the weekends. He talked to Mom on the phone and said
clearly, "Hi, Muzzy.  How are you?"  We almost fell over because most
of his speech is slurred!  This was crystal clear!

His insurance has run out for Rehab stay, so we're in the process of
searching for a suitable place.  Hopefully, the VA Hospital here in
Albuquerque will have a bed for him and will accept his needs.
Yahoo...I'd get to see him everyday instead of just every other
weekend!  We'll keep you updated on this.  Thanks, again, for your
continued prayers and support.  He truly appreciates each one of you
and is ANXIOUS to get back to his old daily routine.  He's headed in
the right direction.  It's just a slow process.

Hi, All,
Just wanted to update you on Gary's progress.  I visited him this last
weekend and was pleased to see him improving, slowly.  He was admitted
to a Rehab hospital in El Paso on the first floor, however, the routine
was a little too intense (3 hrs of therapy per day)for him so he was
moved to the lower level of SCCI Hospital. SSCI provides 3 to 5 hours
of therapy per week.  He had a kidney infection and fought that off,
has a urinary infection we're working on, a nose tube he's pulled out
about 6 times!! and, yesterday, had a stomach tube inserted so that he
can have the nose tube pulled permanently.  He's moving his toes, knee
and ankle on the right side!!!! Praise God!!!  He can even twitch the
side of his face, but the left eye doesn't open by itself, yet.  We
slid his vanity tray with lunch in front of him and he held the fork
and forked in a huge mouthful of potatoes and gravy, but held it in his
mouth and didn't swallow.  We finally figured out that it tastes
horrible and he wasn't going to swallow it!!  So he spit that out and
used a spoon and with someone holding onto the yogurt container, he ate
almost a whole carton of yogurt!  He even brushed his hair by himself.
He's still weak, not talking clearly and sleeps alot, but is more aware
of what's going on around him.  Hopefully, soon, they'll be able to
move him back upstairs to the intense rehab area.

Mom flew down from Kansas to Albuquerque and I drove her to El Paso.
I'd taken some digital pictures of Gary and a short movie so that she
could prepare herself.  She was pleasantly surprised to see how good he
looked and how he trys to communicate.  He knows what he's saying, but
we don't make it all out!  I'm sure that, too, will come in time.  He
is definately learning a lesson on patience.

I hung a huge plastic bumble bee at the end of his bed while he was
asleep and taped a note to it that said "Float like a butterfly, fight
like a bee!"  He smiled when he woke up and noticed it! He has many
cards and letters and flowers from all his friends.  He continues to
enjoy the emails.  We're saving each one in a notebook for him to read
when he's able.

I know Gary appreciates all the support you continue you provide for
each other and for him.  Keep on keeping on!  Thanks, again!!

Gary's Sister, Janet (JD970@...)

Mostly the same yesterday, a little "cloudy".  I guess that kind of
weather is to be expected after what he's been thru!  He has a huge
case of hiccups!!  So, pray to ease the diaphram spasms!  Should be
transferring to a Rehab Hospital tomorrow.  Thanks!

Well, it worked!  You know, if you pull that feeding tube out enough
times, they finally quit putting it back in!!!  Yep, he did it,
again!  But the Speech Therapist came in & agreed that since he's
been eating CUPS of ice BY HIMSELF...WITH HIS LEFT HAND, he doesn't
need a feeding tube!  So, he ate mashed potatoes and gravy and
applesauce for lunch.  They sat him up on the side of the bed and he
was pretty wobbly (the right side is still paralyzed)but he was happy
to try.  He also took away the marker my daughter was using to show
him HELLO (he said Hello and spelled...h, e, double l, o)and tried to
write stuff himself. He was a little frustrated because he left hand
doesn't work like your right one if you're right-handed.  But it's
coming!  And, yes, those big fuzzy red eyebrows are just jumping up
and down with excitement.  Keep the emails coming.  He loves the
updates.  He's reading a little now, so cards could be mailed to the
home: 8701 WH Burges, El Paso, TX  79925.  Not that I'm complaining,
but I'm back in Albuquerque now for a week or so and it'll be hard to
catch up when I go back.  Thanks for the prayers.  More later.
Janet, Gary's sister

Gary's made great progress, thanks to all your prayers!!! He is still
paralyzed on the right side, but that's his only handicap!!!
Yesterday, when we entered the room, he opened his right eye and
smiled.  He speaks, but not clearly, however, we understand some
words,like JELLO!!  (Wouldn't that make a great commercial?  What's
the first thing you want after you wake up from a stoke?...JELLO!!)
We call mom in Kansas everyday & let him hear her and he
replies "better".  His sense of humor is keen, spends most of the day
trying to get the mitten off his left hand. Yes, he wears a mitten
because he's pulled his nose(feeding tube) out twice!  So, he's
figured out how to stick the mitten under his behind on his left side
and sit on it to pull it off or...stick it in his teeth and pull it
off... or put it between his legs and clamp down on it and pull it
off!  I'm telling you, the other day when I got home from the
hospital, I thought I'd been running a daycare center!!  I was
pooped!!  But that's good!  That means he's fighting!

His best friend from Austin drove up yesterday, just to visit Gary for
the day.  He wasn't too responsive in the morning, however, that
afternoon, I think he heard us saying that Ramon was going home the
next day and he rallyed!!  He jerked his head up and pulled his
shoulders off the bed and we guessed he wanted to sit up.  Right!  We
ran the bed up and he sat up straight, opened his right eye and looked
over at his friend and grinned!!  We are teared up!  So, we left the
room so they could have some quiet time!.

I believe that your prayers and support are the strength that Gary
relies on. We read the email everyday to him and some makes him smile,
some make him raise his big red fuzzy eyebrows and some make him frown
a little (I think his frowns are the verge of tears).  Each one of you
make a difference in his life and each other's lives.  When I first
sat down and hacked into his computer, he had a mere 275 emails from
last Monday.  The support you provide for one another is truly
amazing.  Wouldn't it be amazing to read the "Great Plan" book
upstairs.  We are so far apart but yet so closely connected.
Intertwining strenghs and weaknesses into soul connections.

Our family is doing well.  Gary's wife, Ann (wife), Dawn (daughter),
Jeff(son),and grand kids are holding up well. We're all doing good!

Thanks!  Keep your inspiring emails coming! He greatly appreciates
them!  We will keep you updated!

Greatfully,  Janet Duarte, Gary's sister, Albuquerque, NM
JD970@...

=====
Gary Suboter     El Paso, Texas
"TAKE MY HAND"
http://www.cureourchildren.org/takemyhand.htm
"PROJECT JOY & HOPE for TEXAS" http://www.joyandhope.org/
"CURE OUR CHILDREN"  http://www.cureourchildren.org

Veronica,
If you want more of an active esarcoma email group go to
http://listserv.acor.org/archives/e-sarcoma.html there is a lot of
people on that list that will be able to help with questions.  Also
go to www.cureourchildren.org a very informative website on ewings.
I hope that helps.
Kayce

Hi Chris,
My daughter aged 11 has a Ewings Sarcoma in her left iliac bone.she
has been on chemo for the past 6 months and was due to have
radiotherapy as her condition was deemed inoperable. Well the good
news is that the chemo worked so well that she is now going to have
surgery. I was so excited at first, but after meeting with the
surgeon and hearing about her possible lack of mobility, limp etc I
am now scared as to the repercussions of the surgery, long term. Can
yoy let me know how you are doing post-op? Did you have your iliac
crest removed?
Thanks
Veronica







-- In ewingssarcoma@y..., chrisbonham wrote:
> Hi everyone--i'm just figuring this yahoo club
> out. Wanted to leave a new message string, but i think
> you just reply to the last message.<br><br>Thanks to
> Kayce for starting this club. I've been looking for one
> for a while. I live in Los Angeles now, but was in
> Santa Barbara when this all started.<br><br>I am 3 1/2
> years out of surgery. I had ewings sarcoma in my left
> illiac crest. Radiation prior to surgery. Chemo before
> and after surgery. Physical rehab after surgery.
> Luckily it did not spread and hasn't come
> back.<br><br>Dr. Eckardt at UCLA is the best. He made the official
> diagnosis and performed the surgery. He sent me over the
> Cedars Sinai for my chemo.<br><br>If anybody has any
> questions, i'd be glad to answer. Overall, i'm doing great.
> <br><br>chris

Hi,

I am a youth director of a Catholic Youth Group in
Naples Florida.  I just had one of our kids diognoised
with this form of cancer.  I am looking for any
information that I can use to explain this to the
other kids ages 12-18.

Thanks for your help. and God Bless

You can wirte to me at krinskyproperty@...

__________________________________________________
Do You Yahoo!?
Yahoo! Health - your guide to health and wellness
http://health.yahoo.com

I hope everyone has a Happy New Year!!!

Hey everyone. I am new to this club but recognize
some of the peolple from the e-sarcoma list that I am
on.<br><br>A little about my story. I don't have cancer but my
cousin Amy does. She is 20 and has osteogenic sarcoma
which, to our understanding is similar to ewings, in her
right femur. She was diagnosed on July 25, 2001 and is
scheduled for resection surgery November 21, 2001.
<br><br>Good luck to all of you.<br>Angela

Chis,<br>Hey if you wanna join an email list for
ewings sarcoma. Go to www.acor.org Then sign up for the
ewings sarcoma list. There is a lot of people with
ewings on the email list. It is really active sometimes
I got over 20 new emails a day from it. A lot of
people on this yahoo club are on it. I hope everything
is going well! Take care!<br>Kayce

Hey Charlie,<br>I bet Bill can't wait till he has
his hair back. I was so excited when I got my
eyelashes and eybrows back. My hair is coming in slow for
me I want it to grow back in a hurry! School is
going good. I have having some trouble with memory
problems. Chemo brain lol. I am not sure on a major yet. I
am thinking about majoring in special education. I
am glad Bill is done with treatment. Tell him
congrats! <br>Kayce

Hi Kayce. Thanks for the kind words for Bill. He
had to have a transfusion on Monday but is very happy
that that was probably the last one he'll ever have to
have. He's anxiously awaiting the return of hair! Bill
plans to start college in January. Your pics are cute.
Thanks for posting them. How's school going for you?
Have you selected a major yet?<br>Charlie

Hi welcome to all the new members! Charlie I am
glad Bill's chemo is almost done! Tell him congrats!!
I have started college a few weeks ago. So I have
been real busy with that. I am going to post a picture
on here with Autumn and I from camp. I hope everyone
is doing good. Take care!

Hi everyone--i'm just figuring this yahoo club
out. Wanted to leave a new message string, but i think
you just reply to the last message.<br><br>Thanks to
Kayce for starting this club. I've been looking for one
for a while. I live in Los Angeles now, but was in
Santa Barbara when this all started.<br><br>I am 3 1/2
years out of surgery. I had ewings sarcoma in my left
illiac crest. Radiation prior to surgery. Chemo before
and after surgery. Physical rehab after surgery.
Luckily it did not spread and hasn't come
back.<br><br>Dr. Eckardt at UCLA is the best. He made the official
diagnosis and performed the surgery. He sent me over the
Cedars Sinai for my chemo.<br><br>If anybody has any
questions, i'd be glad to answer. Overall, i'm doing great.
<br><br>chris

hi Rachel--i was diagnosed with ewings sarcoma
back in 1997. after chemo (which i started at
Cedars-Sinai) radiation, and surgery, i'm doing great. so much
better than i feared. <br><br>you're probably well into
chemo right now and may not check emails (i didn't when
i was on chemo--gave me a headache to look at a
computer screen). But I hope you are doing well and if you
or your family have any questions I would be happy
to help.<br><br>chris

Kayce,<br>Glad you had a good time at the spa.<br>Charlie (Bill's Dad)

Hi!<br><br>Glad to hear your son is doing so
well! We are all trusting I will come through as well.
:) I begin chemo Friday now (they moved it back) and
I'll be in the hospital a couple days. My mom is
loading me up on vitamins and nutrients to try to help me
during chemo. The good news is the tests they have been
doing have showed that mine has not yet
spread.<br>Again glad to hear about your son doing so well.
:)<br>Rachel

Hi Rachel,<br>I am sorry to hear about your
diagnosis.<br>My son Bill is 18 and was dx'd with ES in his
proximal right femur (no metastases). He starts his 9th of
11 rounds of chemo on Tuesday. He has tolerated his
treatments very well and I hope you will too.<br>He finished
30 rounds of radiation in late June and an MRI done
a couple weeks ago shows that the tumor is
completely gone!<br>We expect that the affected area of
Bill's femur will be surgically removed and a partial
hip replacement done after all his chemo is
completed.<br>We'll be thinking about you and praying for you and we
wish you the best.<br>(For loads of information about
Ewing's, you can check out Barry Sugarman's great web
site: www.cureourchildren.org His son, Alon, has
recovered from this disease.)

Kayce,<br>Hope you're having a great time at camp with Autumn.<br>Charlie

I don't know what kind of chemo I will be on. But
I am beginning it on Wednesday. I'm pretty creeped.
It's going to be busy til then. Monday I have more
tests. Tuesday they put in the IV line and that evening
I have a haircut and will lose my long blonde hair.
:( And then Wednesday is the chemo start. I am going
to Cedars-Sinai. They have been real nice and I
trust my doctor but it's still scary. I never expected,
at 20, to be told I have cancer! It doesn't run in
the family like this at all.<br><br>And thanks
Kayce!<br><br>Rachel

Rachel,<br>Hi I am sorry you got diagnosed. It is
all really scary and overwelming at first. Do you
know what chemo you are starting? What hospital do you
go to? If you ever need anybody to talk to or
whatever I am here to listen. Good luck with the rest of
your tests and chemo.<br>-Kayce

Hello!<br><br>I am 20 and was just diagnosed with
Ewings Sarcoma. Mine is outside the bone. I had surgery
July 13th to remove the mass from my right hip area
and I begin chemo next week. I am quite nervous about
it, as you can imagine, and trying to enjoy feeling
good this last week while I can. Then it's more tests
this weekend too. :P<br><br>Well, I look forward to
getting to meet you. This sure has been a shock in my
life.<br><br>Rachel

Hey Charlie nice pics of Bill.  I hope all is going well with Bill. Take care
*Kayce*

Hi. I just added a few pics. Hope all of you are doing well.<br>Charlie (Dad of
Bill, dx'd Jan, '01--tolerating treatment very well--getting 8th round of chemo
now--MRI this week--surgery soon

hi<br><br>any alternative treatments for a tumor wrapped around the aorta
area<br><br>thank you<br><br>genesis@...

What do you guys think for a chat once a week?  Where we can all talk?  What
time and day sounds good for every1?  Thanks Kayce