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.

Thursday, February 2, 2012

Day 16

Alice was able to sleep most of the day. Her breathing has not gotten worse, however it has not improved either. She woke up around 3pm with a little energy and guessed it; the Backyardigans. For an hour she and I conversed, and watched those animals sing and dance. She loves it, and that's all that matters.

Ed Yeates from KSL came to the hospital this past week to do a follow up story on the girls. He is really a wonderful person as it seemed to us that he has taken a great interest in the girls. I have been told but not confirmed that it will air tomorrow night at 5 and 10pm. Natalie was cute as they followed her around the hospital when she came back for a scheduled appointment. She did a good job as we knew she had no desire to be back at the hospital again. We were very proud of her. The camera crew then came over to Alice's room to take a few shots. It went well enough, we'll see how it turns out.

Alice and I skyped Lisy and the kids today. Its always fun to watch her initial reaction when she sees the kids or Lisy. She gets a sensory overload similar to when a child first walks into Disneyland. It is sad however, after a couple minutes have passed her demeanor calms down and she simply stares at the screen. Her look was discernible, she misses her mommy. It was a sobering moment. Below is a video of her not wanting to give up the Rubiks Cube

I am personally hoping that this weekend Alice will start to show signs of improvement. Last night there was a close call with her broviac line. A blood clot had blocked her line and for a couple hours it was looking like they might need to place an IV and possibly replace the line. My mind quickly recalled Natalie's ordeal with her replacement. I wasn't ready for another, but prepared myself for a long night. Thankfully, after much attention and work the nurses were able to unblock the line and dissolve the clot. There was a palatable tense feeling in the room for a while; but it was not to be, and all was well.


  1. While reading your update tonight about your beautiful Alice. I found myself thinking about a beautiful song "angel standing by" by Jewel.
    All through the night
    Ill be standing over you
    And through bad dreams
    I'll be right there baby holding your hand
    Telling you everything is gonna be alright
    And when you cry ill be there baby
    Telling you youre never nothing less than
    So dont you worry im your angel standing by

    Such a beautiful song for your beautiful girls. Love and prayers your way

  2. I wish I could hug Alice from here in Missouri. I think about her all the time, as I have a two year old and can't imagine being in your position. I see such a strong woman in her future!!

  3. Wow! I'm not sure that I could solve a Rubik's cube. Alice must be the smartest two-year-old I know! Keep up the good work. You are a great family and you've made it so far!