Renee,

Yes, we've been there and done that. First, I would suggest you ask one
simple question of the doctor before you begin treatment. Ask him/her what the
chromosome translocation numbers are. Most cancers have breaks/translocations
in the chromosomes that make them particularly difficult to kill and different
from the other cells in your body. Ewings Sarcoma is not just one type of
cancer, it is a family of cancers. One of the methods they use to see which
specific type of Ewing's tumor you have is to do a chromosome study to see where
the translocation are. If it is simple Ewing's Sarcoma, the translocation
numbers will be 11 and 22. This information will help determine the best
chemotherapy protocol to use.

Second, there are some interesting studies being done with Ewing's patients
that I would encourage you to read. The most important one is called "Time
Compression treatment..." What this means is that some ES patients are being
given the first doses of chemo therapy at two week intervals and not the three
week intervals of the original Memorial Sloan-kettering protocol. The
advantage to the two week interval is two fold, first it relieves pain and kills
a lot
of tumor quickly, and second it reduces (this is the theory of it) the
chances that the tumor will mutate or become chemo resistant. From what I am
hearing from doctors and patients I would try and get on a clinical study that
would
give my child the Time compression..... two week chemotherapies.

This is a very deadly disease. I am sorry you have to face this kind of
monster in your life and the life of your child. It is not fair. It is cruel
and
will demand a lot of you, your family, and your child. BUT, you can do it.
You are at war with this disease and you want to bring your best self to the
fight. So, you will have to take care of yourself as well as your child.
Don't take your own health for granted.

OK, I've said alot here. Let me give you two websites that will be a great
help to you.
First, Barry Sugarman's wonderful informational site at
www.cureourchildren.org and the second one is ours
www.brianmordenfoundation.org.

You are not alone in this fight, Renee. Good luck and let me know if I can
do anything else for you. I'm here to help.
Fred (father of Brian, dxJan'01 ddFeb'03)