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.

Friday, October 11, 2013

Day -6

I came to be with Alice today...I was so excited to be with her.  I was missing her even ten minutes after they left for the hospital on Wednesday.

Alice and I have been having a great time.  Tyler went home to spend the rest of the fall break with the kids.  When I called home they were watching Harry Potter...and nobody seemed to be complaining.

So far Alice is doing awesome.  She has so much energy.  Her counts are still stable.  On Wednesday she did receive an infusion of IVIG...it was due anyway.  This will help in our efforts of keeping her healthy.  So far, no nausea, however, she is beginning to have diarrhea.

Natalie came with me and visited with Alice, then went home with Tyler.  Soon children will not be able to visit...I was glad Natalie got to come.  Alice was very happy to see her.

Today is day -6...which means that we are counting down to transplant day (day 0).  Then we count up to 100 and so on and so on.  All this is too familiar, but we got it down...and we are going to do our very best.

Lisy




Natalie didn't want to leave Alice's room.  She has been hooked at my hip lately.

A favorite trick.


She loves the spooky halloween mice I brought her.

We had a grande tea party.

Lots of learning with Leap Frog....love it.
Posted by at 11:25 PM

1 comment:

  1. DeniOctober 12, 2013 at 11:11 PM

    I am so happy you posted. You all have been in my thoughts as you go through this procedure yet again. Please let me know if there is every anything you need.

    ReplyDelete

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