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, January 16, 2012

Day -1 for Alice and Day 26 for Natalie

Platelets again for Natalie, her ANC is 800, and she had a really really good day. She had a lot of fun today. She did more pranks, but I'm too tired to upload the video--so it will be for another post. Honestly for the first time since we have been here Natalie has been more like herself. Not only is she talking up a storm and eating her food voluntarily, she is truly happy. She is talking about going home, which means she must be feeling better. I suspect if she continues at this rate, she may be able to go home as early as a week from now.

On several occasions the doctors have stated that they are very happy with both Natalie and Alice's response to this whole process. Once again, we tribute this to the many prayers being offered.

Alice finished her last pre-transplant chemo therapy today. She has done well and looks fabulous. She is still playing well enough. She received her first blood transfusion today. It bothered her a little, but was well enough. Tomorrow is transplant (day zero), a big day for her as we celebrate her "new life" birthday.

I have kept a prayer in my heart all day for Alice's donor. She donated today, and the marrow will be on a flight for Utah so Alice can receive it tomorrow . We are very thankful for her.

I think Tyler had the hardest day today. He's feeling a little cabin fever, so he went for a run outside to get some fresh air. He and I have been taking turns finding a bit of time to exercise. Sometimes just going outside for some fresh air is very therapeutic.

Evie had another wonderful field trip to my Uncle Dale and Aunt Michelle's house. My Aunt and Uncle have been able to take her for the daytime and then bring her back to me in the evening. She always comes back happier; Tyler and I feel so thankful for the extra help.

Tomorrow we will post lots of fun photos and videos. Stay tuned. :)

Love to all,

Lisy
Posted by at 11:04 PM

2 comments:

  1. Jill HeapsJanuary 17, 2012 at 12:13 PM

    I am so glad they are doing well! Exercise IS so important!!! Go up above The Huntsman Cancer building...you can catch the pipeline trail which is really nice!! We are praying for a very successful day for Alice today!!

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  2. The Nelson'sJanuary 17, 2012 at 1:14 PM

    So happy things are going well and that you guys are taking time for yourselves. You guys continue to amaze me! Especially Natalie and Alice, what troopers. Here's to a great day for all of you on Alice's "new life" birthday!
    Call if you need anything!

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