Wow, Thank you everyone for your reply's...it is comforting to know
there are people out there that understand, and have been through it
all. We will definately take the advise and cherish the moments
of "normalcy", and keep our humour when its not!

You all had so much information! Isn't it amazing that we can throw
around medical terms like we are doctors :)

Thank you everyone again!

Nicole
--- In EvansSyndrome@yahoogroups.com, "nicolegofman"
<nicolegofman@...> wrote:
>
> 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
>