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.

Wednesday, December 11, 2013

Here through Christmas, but good news.

December 11

 Great news for Alice. The tests came back negative for GVH and CMV in her organs. Such a relief, we can now focus on her shingles virus and CMV in her blood. She will receive a steady dose of anti-viral medicine. The trade off will be that it will cause her counts to go down. It will still be a difficult recovery but a more possible recovery none the less. We will be here for at least a couple weeks, which puts us here through Christmas. That part is a bummer for sure, but it still feels better to know that the situation could have been worse. Her rash has been progressing and her counts dropping, but that is to be expected for now. She will probably need blood tomorrow. In terms of her recovery it has been necessary to take a step back in order to move forward again.

 Tyler


Posted by at 12:50 PM

3 comments:

  1. AnnaDecember 12, 2013 at 5:27 PM

    What a relief! So glad it's not worse...but still praying that she can heal and feel better soon.

    ReplyDelete
  2. AnonymousDecember 12, 2013 at 7:12 PM

    I'm so glad that there's no GVHD and no CMV in the organs. I hope they can get on top of the Shingles and blood CMV really quickly! And I hope Alice starts feeling better. What a sweet beautiful girl.

    ReplyDelete
  3. Chera ReeseDecember 13, 2013 at 11:21 AM

    We hope she keeps GVH away for good!!! Poor girl hope she gets relief from the shingles too.

    ReplyDelete

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