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, February 25, 2012

ANC 1900 & Share The Love


Alice's room seemed so lonely while she was in the PICU

Alice's numbers continue to increase. Her ANC was at 1900 this morning. The doctors have taken her off all major IV's and switched her to oral meds. This is a big step in the process to get her home. We have been told the goal is to do so possibly by mid week. Fingers crossed. She is still a little slow and melancholy, but has flashes of her old self. We are becoming more and more encouraged these past 24 hrs. I reflected today on how far she has come within the last 48 hrs. Our emotions have been all over the map, from the low side and to the very highest at the present. We are so grateful to the prayers offered on her behalf.

Lisy and I also wanted to thank everyone involved with the "Share the Love" event. We have gotten bits and pieces of info during the event and assume that it went well. We wish that we could have attended and greeted all of you ourselves. How we desire the ability to express our deep appreciation for the love shown to us. We know that there has been countless hours of labor from so many people. Tonight I would have to restrain from getting emotional each time I received a picture text of the happenings at the event. Someone shot me a text to tell me that Natalie's turtle art was bought, I melted inside. I replied to Natalie that she was officially an artist since someone had purchased a piece of her work. She didn't seem to comprehend it, as she shot back a puzzled look. I was a little emotional and thought I wouldn't get through explaining it without my voice cracking, so I said, "I'll explain it to you later." Thank you to you all for the labor of love on our children's behalf. We love you and wish that when you see us in the future, no matter what part of this event you were involved with, please tell us. For we wish to thank you personally from the warmest places in our hearts.

Tyler & Lisy


Returning from the PICU


Looking for Natalie accross the hall
Posted by at 10:13 PM

2 comments:

  1. Chera ReeseFebruary 26, 2012 at 11:07 AM

    Congratulations fish family! My husband is Jill Simmons brother and we have been following you closely and we know first hand how great you all are. Paul has multiple stories of good tines with Tyler and we know how great your family has always been. We live in Vegas and unfortunately missed the event but we haven't stopped thinking of you especially since the picu moment. We are so excited for your family to be whole at home again. We love you!!!!

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  2. AnnaFebruary 26, 2012 at 1:58 PM

    What wonderful news! I'm delighted to hear that Alice is still improving. We couldn't attend the event last night, so we owe you guys. Let us know if there's anything we can do to help. Ever. We love you all.

    P.S. I'm glad that Natalie is a "real" artist now. She is a very talented girl.

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