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.

Sunday, February 12, 2012

One Step Backward

Today Alice's ANC number dropped back to zero. It was a little disheartening to say the least, but we have hopes that it will return tomorrow. The doctors will be drawing for special blood tests to see what the hold up is on engraftment.

When she had some energy today she enjoyed skyping with the family. Last night Matthew asked to shave his head. I was up for it so we did, now he looks like Natalie. When Alice was skyping with him, she continued to mistake him for Natalie. It was pretty funny. He spent the morning trying to talk Blair into doing the same thing. Blair wasn't too keen on his proposal.

The video below is a little hard to watch. In the past Lisy and I have written about the occasional, but necessary dressing change both Natalie and Alice go through. I thought of describing tonight's experience, but instead made the decision to capture it and show how difficult it can be sometimes. Thankfully, this was more of a mild experience this evening. I am so impressed with Alice's willingness to do those things which repeatedly cause her pain. She cries, but continues to lie still until the procedure is finished.


That purple balloon has been a source of comfort many times, as well as a good distraction. It must remain somewhere by her bed at all times, she will notice if it's moved.


  1. She is such a sweet little angel! Valentines day will be good for her.

  2. I can't believe how GOOD she is. So brave. She cries, but your right, Tyler, she just lets them do their thing even though she hates it. Amazing.

  3. She has such strength and determination in such a difficult time. Alice is my hero! We could all learn a lesson or twelve from such a courageous little lady as she is. Blessings to you all.

  4. Alice's personality is such a blessing! I can just imagine what my own two-year-old girl's reaction to all this would be and it wouldn't be anything like this!

  5. Oh, poor brave little Alice! I cried for her, too. What a hard thing for all of you to get through. Especially when you have to do it over and over.

  6. Oh, I cried for her. Sweet baby girl, I wanted to get her a treat for being so good!