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.

Sunday, November 3, 2013

Day 17

ANC 4100, Platelets 41, Hemoglobin 10.3

It just keeps getting better.  It's truly amazing how much she heals in a single day.

I was loving the beautiful fall weather yesterday, and then when we woke this morning it was a blizzard...still beautiful. Alice looked out the window and said, "Is it Christmas?"

Today was nice and quiet.  We played, watched movies, read stories and did manicures and foot rubs.  We love uneventful days at the hospital...it's a good sign.

Lisy

I found this documentary on YouTube and found it so fascinating and heart wrenching at the same time; it is  the real story about the "bubble boy".  It was just published this year in April.  It gave me an even deeper appreciation for what this boy (David) and his family endured. Many people have criticized the Vetter family for allowing their son to spend his entire life in a bubble.  When I watched this I felt like I could relate to the family and felt such empathy for them. The intention of the bubble was short term, however, the plan the doctors prepared for the family fell through, and they were left with no plan...just watch it!  This boy provided the medical world with invaluable information about SCID and even cancer, unfortunately through hard conditions.  I couldn't help but feel immense gratitude for he and his family, I truly believe we have been blessed by his experience.  Here is the link, there are 5 parts, but it is worth watching.
http://www.youtube.com/watch?v=4CFPdUAj41Y

Just Happy

Posted by at 10:09 PM

2 comments:

  1. StrongsNovember 5, 2013 at 2:01 PM

    We are so, so happy about all the good news! We love you guys so much are thinking of and praying for you- more than you will ever know.

    Love,
    The Strongs

    ReplyDelete
  2. EmilyNovember 5, 2013 at 4:28 PM

    We are so happy for you all and especially that Alice is just happy too!

    ReplyDelete

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