The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Saturday, September 28, 2013

Last Day of Campath

Alice did awesome today...I was so worried that the bigger dose of Campath would be too hard for her and cause a terrible rash.  She was happy and well the whole time.  The infusion lasted 10 hours.  If she does well tonight we might be able to go home late tomorrow night or Monday morning.  We had a couple vistiors today, and that was nice, Amber came and then Michal and Roslyn stopped by. 

We Skyped home...it was great. 

Alice did receive platelets today.  This was a bit surprising to us as we didn't expect her platelets to drop so quickly.

Her recent counts are as follows:
9/25--Platelets 124, ANC 400
9/26--Platelets 92, ANC 1000
9/27--Platelets 26, ANC 800
9/28--Platelets 12, ANC 800 (platelet infusion required)


Michael, Alice and Roslyn
 
Lisy
Posted by at 10:17 PM

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