Hi, and welcome to the group,
My name is Marybeth and I am the parent of a nine year
old diagnosed with Ewings of the pelvis in 2002. You
will find that the people that understand and you can
relate to is what will draw you to this support group.
These are the people that truly understand. I still
deal with family members and friends who think that
now treatment is over we will all be normal again. You
learn to deal with each day as it comes and thank GOD
for each day. I understand that you have a baby. When
my daughter went through her treatment, I also had a
four year old son who was left by the wayside, who
needed me. He still says things to me this day that I
left him for a year to take care of his sister. So I
still deal with that. There is some light at the end
of the tunnell and that is the support group you have
become a part of. Good Luck and if you need to talk,
just email.

Marybeth
--- Lexi Chopp <smallchopp@...> wrote:
> Hi, and welcome to the group.
> I am 12 years old and was diagnosed with Ewings to
> my right rib cage, mets to my lungs, at age 5. A
> good thing to do may be to tell your family,
> friends, etc. that going back to complete normalcy
> is not an option. I have been in remission for 6
> years, and still not EVERYTHING is back to normal.
> Denial is not an option is either. I think everyone
> is like that at first, but you cannot live by what
> you wish was happening at the moment. Reality has
> to sink in at one point or another, and it is easier
> for you if your family, friends, etc. can accept it
> sooner.
>
> Maybe this helps, but maybe not. Just wanted to let
> you know what I think.
>
> Lexi
>
> shadoeface2003 <shadoeface2003@...> wrote:
> I have searched the web for Ewing's support groups,
> bu this is one
> of the only one's I have found. I am 38 and was
> diagnosed 7/3/02
> with Ewings in my foot. I had 12 months of the
> "protocol" chemo and
> 31 radiation treatments. I finished in May of '03,
> by default. The
> chemo was killing me, litterally. My wbc counts were
> dropping too
> low as were my reds. I was having transfusions a
> week after each
> cehmo. I was starting to run high fevers.
>
> After all that the doctor says there is no cancer
> left, but I remain
> skeptical about it. I hear too many stories of
> re-occurances and
> worry that it will happen to me. I was offered an
> amputation or
> raditation. My family talked me into the radiation,
> now I wish I had
> the amputation so I would know the primary tumor was
> gone. I have
> been lucky, no mets. The residual pain from
> radiation has been
> unbearable, but I am stubburn and fight the pain
> back with over
> doing it.
>
> I feel rather alone in this whole fight. My husband
> has been my rock
> and my son is too young to really understand. I have
> been the
> missing mom all year. In his mother's day book to me
> that he made at
> school he wrote my favorite thing to do is lay down.
> Now that I am
> feeling stronger I am trying so hard to make up the
> past year to
> him. The rest of my family, my parents brothers and
> inlaws are all
> living in denial or a fantasy of what has been going
> on. They have
> all run in diffeerent directions and hidden form the
> reality of my
> being "sick". Now that I am done with treatment they
> all treat and
> act as if there was and is nothing wrong with me.
>
> My most recent MRI shows that there is Avascular
> Necrosis and sevre
> damage to my ankle all from radiation. But the
> family thinks that I
> should just "get over being bald" and get on with my
> life. I am
> trying and it seems that it's not enough for them.
>
> anyne else out there having trouble with support
> from family and
> friends????????
>
>
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