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, January 16, 2014

Scope results

There was good news today with the results of Alice's scope. Yesterday at 2:30 Alice and I headed down to surgery. It was somewhat of a welcome change to get out of her room and into another. The procedure to about an hour. Before heading in Alice said, "Dad I don't want to fall asleep. Knowing that she wouldn't know the difference from the anesthesia she would be given, I replied with, "Alice, you can stay awake." The procedure went well enough and she was back in her room before she came to her senses. The pictures taken by the GI doctor were showing possible signs of GVH in her gut. However we would need to wait until the biopsy results to confirm. In the early afternoon today the results arrived and they were negative for GVH. What a relief. Now we can focus on her CMV levels and how much of the anti-viral medicine she can come off of. If anything today we made a step in the right direction for getting her discharged. I can tell the doctors are relieved now that they can focus on something else in order to get her home. She may still be a little ways out from coming home, but its closer than she was yesterday. Below is after she awoke and wanted some chicken broth.
Posted by at 7:17 PM

2 comments:

  1. KarrieJanuary 20, 2014 at 6:57 AM

    Dear Sweet Alice......"Exercise" duh....I've commented before, but she just melts my heart!! I'm glad to see her up talking and "eating" her broth

    ReplyDelete
  2. Stef plus 3January 23, 2014 at 8:08 PM

    She is so sweet!!! I love when she tells you "put it in your mouth and eat it with your teeth".

    ReplyDelete

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