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.

Monday, February 25, 2013

Waiting, Wondering, and Wishing

Alice improves a little each day...only a little.  She is using less pain medication and on her feet more.  The drain tube still remains, however, we hope it will be removed soon.  Unfortunately the infection is not clearing up as quickly as it should.  We wondered if maybe she could come home this week...however, she needs to heal more before they will allow her to go home.

Each day we wait, wonder, and hope that her counts might show some changes...even a little would be great.

She received another blood transfusion today.  It has been a hard day for Alice.

This day one year ago was the Share The Love event, and Natalie and Alice Fish day.  Many people sacrificed greatly in our behalf.  Our hearts overflow with gratitude.  Recently, Tyler and I saw a video that Jessica had taken of the event.  It was very humbling for us to see such an event take place.  We were able to see faces of so many that attended, it made us feel so loved.  We could not be fighting this fight without all of you.

Especially thank you for your prayers.

Lisy
Posted by at 11:30 PM

2 comments:

  1. BFebruary 26, 2013 at 7:57 AM

    We are sending lots and lots of prayers your way Alice!!! For you whole family as well.

    ReplyDelete
  2. Bryan and Amanda RussFebruary 26, 2013 at 8:35 AM

    Our prayers continue daily as well. I know you know this, but you are never alone in this walk. May you all continue to feel the love & prayers in the form of His enabling power each day. We'll be fasting for precious Alice this Sunday! I was just re-reading Elder Andersen's talk from last Conf., "Trial of your Faith." It keeps teaching & reminding me.
    We sooo love the Fishes!!!!

    ReplyDelete

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