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, May 12, 2012

Alice's Chimerism Dropping

Yesterday Dr. McMannus called Tyler and gave him good news and bad news. The red blood cell count (CBC) that was drawn by the home care nurse on Thursday was favorable for Natalie. Her hemoglobin went up to a 10 from an 8. She is no longer threatening another blood transfusion at this point. Tyler and I were relieved, because we thought it was continuing downward. The tests indicating what might be causing the anemia are reported. To the doctors best knowledge her anemia is not related to her switching to Blair's blood type A+, although, possibly a result of viral suppression. She has not vomited for a day and a half...hooray. She is beginning to have more of an appetite again.

Alice's labs were much less favorable. Her Chimerism (engraftment analysis) taken this past Monday in clinic showed her level to be approx. 84%. Much lower. This coming Monday in clinic another test will be taken. Again, Alice is a wild card, she is responding to certain tactics differently than expected. The plan is to tapper her steroid more than the scheduled plan and also begin tapering her cyclosporine (anti-rejection) in hopes that it will help her levels rise. If her chimerism continues to drop, it is possible she could loose the graft. Tyler and I choose not to think that could happen, we hope she is able to manage good levels as it is a delicate balance. If her cyclosporine levels are disrupted too much she becomes more of a candidate of graft vs. host disease. It's a fine line between two troubles.

Tyler and I changed Alice's dressing tonight. She was such a good sport. Before hand I showed her a new prize to help encourage her, and it work wonderfully. She was cooperative and very thankful to have the reward.

As a family we had a fun filled day of activities with punching balloons, balloon rockets, playing the game Hedbanz, and painting with glow in the dark paint.

The following message is from Alice, she really wanted to help me type.

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222222222222222222222222222222222
i3i0-ieeeiowkopwiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiih yug ry yugiugyhgyighyty giy yyy8 8ytgjihuuuuuuuuuuuuuuuuuu98yy;3u999r9i9998i4i9ri u9ue'o[irkoipoi poi;i oi uu0i9030v90889344-48-8489849-222222222220o44=430399999939999999020o2=
opioijtoii

Love, ALICE


yukyyry6re6eyswwtwytwtegffn,4rur4trfrtettgw jjywt3jytt4y4ttttjjjjjjjjjjkuuuuuetrttttter3re2dQDRT4E4GDGBY44FDWER ttttewqqqttttttttteeeeeeeethhhhzssraAe3rrrqarqgtrAr
Posted by at 10:25 PM

2 comments:

  1. Jill HeapsMay 14, 2012 at 8:36 AM

    I am so sad to hear this! Don't stop fighting! Alice has come so far...her journey on earth is FAR from over! PRAYERS!!!

    ReplyDelete
  2. TaraMay 14, 2012 at 8:50 AM

    So glad to hear Natalie's good news. And not so glad to hear about Alice. We continue to pray for you each day. The girls are always asking how they are doing. We are praying that clinic goes well today. Good luck!! WE LOVE YOU!!!

    ReplyDelete

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