--- In EvansSyndrome@yahoogroups.com, "rnm171" <rnm171@...> wrote:
>
> I have been reading the posts lately and I have'nt posted anything
> for a while. Sorry to hear about Hannah, we too had to cancel a Dream
> come true vacation to Hawaii due to our daughter Rachels' illness. We
> eventually went to Disney and the Disney cruise. We still have
> concerns when it comes to booking a vacation. Rachel is now 19 years
> old, she has had very low white blood cells for about 2 years, they
> have become extreamly low that past few months, she is taking Nueogene
> shots every day, she sometimes gets mouth sores and tongue sores and
> fevers. She has been taking these shots for almost 2 years now, she
> has had bone marrow asperations done to see if white blood cells are
> being made and they are but they don't know why her WBC is so low. We
> are concerned that she will get sick and won't be able to fight it
> off. Does any one else have a situation like this or has had some
> other treatments for the low WBC. Rachel has had a liver transplant
> when shewas 9 months old. Thanks, Nancy
>
Hello Nancy,
My son Aaron is also 19,he is going through low globulin count now
even though we were told that monthly dose of ivig should help. Other
counts are holding he is also being monitored for lung nodules we will
be checking on that again after christmas.He he has also had the mouth
soars recently. sitting here writing this and seeing what everyone has
to go through is so hard to understand what the body is doing.I am so
glad that when i can i am able to come here and not feel alone, even
though i wish nobody would have to go through Evans. as my friend Rita
says...P.U.S.H. Pray Until Something Happens..