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, July 17, 2014

Holding Steady

This past week clinic turned out to be more good news. The doctors have given Alice a green light to come off one more medication. Such a relief to us that she continues to improve. Not to mention having to deal with one less medication makes every bit of difference in the morning and before bed time. In addition, the conversation turned to discussion on when Alice can have her central line removed.  A major factor in this decision is her proving that she can maintain good blood levels.  Yet, this is very exciting to me. I mean, its been over two years now that she has had a hole in her chest, and more years with a PICC line in her arm. I doubt she can remember life without having to consider getting in the bathtub or jumping on the trampoline without caution because of it. Hopefully by the end of summer it will become a reality. When that happens, its hard for me to believe that this chapter in our lives may be coming to a close? Wow. I really can't imagine it now. I'll believe it when I see it. Nevertheless, its good news and we will ride that wave until we can catch another.

Counts:
ANC 1500
Platelets 167
Hemoglobin 9.5


Below is a clip of Alice performing her first magic trick of the disappearing sucker. Still needs a little work, but its cute just the same.

Tyler





Posted by at 3:26 PM

2 comments:

  1. farnsworthfamilyJuly 17, 2014 at 6:31 PM

    I have been thinking about you guys a lot lately. So good to read this post. Thanks for the update. Alice, you are totally magic. Where did all the suckers go? You are amazing parents and your kids are so creative.

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  2. Jill HeapsJuly 18, 2014 at 10:45 AM

    So exciting! I remember we brought Emily's central line home with us after she had it out when she was 2 1/2 (after first transplant) then she kept trying to put it back on her chest when she saw it! baby steps are AWESOME!! I'm glad she is doing better...how are YOU? Love the magic trick!!!

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