Hi all!
I am a Mom of a little boy (Zachary age 5) whom was recently diagnosed
with Evans...4 months ago to be exact. Since then our lives have been
literally turned upside down!
We are at the hemotology office two to three times a week; Zack has
issues with all three of his blood lines. It first manifested itself
as neutropenia, then went on to thrombopenia, and most recently
anemia. He is currently on Rappamune, and the doctors are flirting
with the idea of putting him on cyclosporine. As parents we are
completely overwhelmed, and feel totally helpless!
We are currently being treated at the Childrens Hospital of
Philadlephia and couldn't be happier with the doctors there. We are
just curious if this constant battle gets any easier..the docs say it
will but its hard to see the light at the end of the tunnel!
Anyone out there go through the "exploratory" stage? Does it get any
easier to manage? Is it a matter of finding what works for the
individual?

Thanks for letting me vent!
Nicole