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, May 30, 2013

Great News

Today the doctors came in visibly upbeat and gave the results that have become so foreign to me that my reaction was one of dismay. Alice's numbers are up. Her hemo count is at 13.6, her platelets rose to 33 and her ANC is 2.6 (2600). After reading off the results the doctors said, "you can go home." Usually after hearing the results I've programmed myself to ask, "well how long will it be to match blood and get platelets?" Today was no different except that I caught myself at mid sentence and requested them to repeat their statement. I couldn't believe it, we were out of there. I had to hold back my emotion because I realized we may be in the middle of a turning point. Alice let her emotions fly because she didn't want to leave with out ordering herself lunch and playing with the toys for six hours. I was good with it. We still have to balance her possible GVH as we taper her medication down. If her GVH persists then we are back to where we were regardless of where her numbers are. We know how quickly she can change for the worse; but for now, Alice is doing better and that is what counts as we take it day by day to her recovery.



On a different note, but shifting the positive news into four-wheel drive; I realized the other day that school is close to getting out and summer is here. Many of you will venture outdoors and try your luck with nature. But before you do, there is no better way to be instructed on the safety and "neatness" of nature than a tutorial by Lenny Pepperbottom. "Isn't that neat?"

Tyler


4 comments:

  1. YAHOO! I love all this good news!! It makes my heart SO happy!!! CONGRATULATIONS for now and for every baby step from here on out! Alice, You are up for some GRAND ADVENTURES!!!

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  2. We're so excited for the girls and their progress! And Tyler, I laughed hard thinking of your reactions to Mr. Pepperbottom. I hope your next post will include you as a guest (or, better yet, a fill-in) on his program. You could really help him "shake things up."

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  3. That is such fabulous news!!!!

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  4. Such great news!!! We're so happy for you guys. And jake and I thoroughly enjoyed the neature videos. How could we not know about those!? We watched all the episodes thanks to you. haha

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