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.

Saturday, November 2, 2013

Day 16

ANC today is 2800!  Platelets 49, Hemoglobin 10.1

Her official day of engraftment is November 1.

Neupogen stopped today.  Meropenem (antibiotic) stopped today and her Morphine dose was reduced.  It is always exciting to cut back on meds;  Still much work ahead, and hurdles to overcome, but we will take any good news along the way and celebrate it.
Alice's mucositis continues to improve, she wants to drink more water.  Since she has been drinking more, she has also vomited more.  It will take a very long time for her tummy to heal and be able to tolerate food. Baby steps are the goal...little improvements are big accomplishments.

Grandpa Fish stayed with Alice last night.  She never likes her company to leave, she enjoyed her time with Grandpa.  I was happy to be back on shift.  I can't be away long.  When I arrived she motioned/summoned me to lay beside her, she wrapped her arms around me for a good hour; each time I tried to get up to silence a pump or call the nurse, she would pull me closer.  I had no interest to move. :)

With the Neupogen no longer on board, her ANC will dip over the next few days, but shouldn't drop too much.

Just since I was here last she is talking more and swallowing with less struggle.  Keep up the good work Alice.

Today when I came to the hospital I came another route through the city.  I drove along South Temple and was in awe of the beauty.  The large trees were bright in color, and every time the wind blew it was a blizzard of leaves...the roads were covered completely in leaves.  I almost turned around to drive the path again.


Lisy






Posted by at 11:30 PM

8 comments:

  1. Mila KierNovember 3, 2013 at 7:15 PM

    Little girl you will be fine. and your grandfather will teach you how to fishing.. 6 PackUS Coast Guard License Training Alaska

    ReplyDelete
  2. Kevls143November 5, 2013 at 8:42 AM

    I love you alice.. get well soon.. try to catch a real fish someday . :D Alaska Fishing Tackle 3 Rivers Fly & Tackle MIke Hudson

    ReplyDelete
  3. UnknownNovember 6, 2013 at 3:51 AM

    Keep up the good work Alice. Your a good girl! :DRenton’s River Adventures Deschutes River Fishing

    ReplyDelete
  4. For more info on Orlando Wedding Stay Happy Stay in LoveNovember 28, 2013 at 9:19 AM

    I was very moved by the story of your daughter. I love children and I know that you love yours too, and I hope you can receive the great blessing of healing of your child. This really touched my heart. God bless you.

    ReplyDelete
  5. Long or Short Term Irvine Self StorageNovember 28, 2013 at 11:40 PM

    get well soon little girl ..
    and I hope you can receive the great blessing of healing of your child.

    ReplyDelete
  6. asorApril 27, 2015 at 3:38 AM

    Their condition is so rare that only two cases are reported in the U.S. each year.
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    ReplyDelete
  7. Must see Agent State FarmSeptember 30, 2015 at 3:55 AM

    Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). May God Bless you both .

    ReplyDelete
  8. Must see Commercial ChairsOctober 4, 2015 at 2:13 AM

    It will take a very long time for her tummy to heal and be able to tolerate food. But in Jesus name she /he will be okay .

    ReplyDelete

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