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.

Monday, February 13, 2012

A Happy Day--Day 27

Alice was happy today. She played and played with some new toys that were made just for her...miniature. Today Alice's room transformed into Valentines Day fun. Tyler said she really likes it. It's perfect for her and she needed a little something to brighten her spirits--thanks Judy and Alisha!



Still no ANC. The doctors are sending for some tests that may give us a better picture of what is happening inside her little body. It's possible that her old cells are being stubborn and fighting the new cells that are being produced. If this is the case her medications will be altered again, and hopefully none of this will require any more chemo or similar drugs.

Tyler and I are very anxious to hear the results from these tests and hope that her delay in engrafting is something we can resolve.

Physical therapy came and helped her for a moment. She sat on this cute yellow animal thing. It required strength from her legs to keep it in balance. I was very impressed with how well she did.




Natalie had an appointment in the clinic today. She is doing awesome. She has a bit of a cough, which could be asthma related. All Natalie's cell lines have continued to improve...it's amazing. She was excited to see Alice and watch a cartoon on her TV.



Tyler and I gave Alice a bath the other day and she loved it. She had her own little tea party in the water...she tried to drink her bath water but we caught it just in time. I quickly found some bottled water and cleaned her tea cup so she could drink. Later she begged to get back in, so we had a second bath shortly after.





4 comments:

  1. Glad to know you had a happy day! You are such a strong little girl. Hang in there sweet girl! I pray daily for you to have the strength you need to get you through each day. As well as your family. So nice to hear that Natalie is doing well. It is comforting to know that our heaveny father is with you and watching over you. Big valentines hugs and kisses! Xoxo

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  2. You are an amazing little girl.

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  3. I have seen those cute horses before, they are called Rody Horses. Alice makes a very cute cowgirl!

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  4. Those are great decorations. I bet all of you are looking forward to saying goodbye to that room sometime soon. I'm glad that Alice and Natalie have each other to rely on.

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