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.

Wednesday, October 16, 2013

Day of Donation, Day -1

Alice's donor donated his marrow today.  I found myself thinking of this person often today...and praying for this person.  Tyler and I felt continued gratitude throughout the day.  Again we look forward to the day when we can make contact and personally thank him.

Alice spent the day with Aunt Amberly.   They had a wonderful time. 

Alice is getting more tired, still playful, just slowing down.  Her appetite is decreasing.  No complaints of mouth pain or skin rashes yet.

Today was a busy day for Tyler and I.  We had the day together and had much to accomplish.  We met with Natalie's teacher and principal to discuss her educational needs.

We were able to get enough done for one day, and the rest will have to wait.

Tomorrow is the big day---Alice is very excited for her bone marrow transplant. 

I will post pictures and provide more details tomorrow.

Lisy
Posted by at 11:30 PM

1 comment:

  1. Katie In NJOctober 17, 2013 at 1:53 AM

    Very special thoughts will be with Alice all day. Go Alice! You can do this, you wonderful little sweetie!

    Katie

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