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, December 15, 2011

Double Dose

Today was met with as much anticipation as yesterday.  I wondered how Natalie would feel this morning with a full day's worth of chemo.  As I asked her how she felt, to my surprise she acknowledge that she felt no different than yesterday.  It was a relief to me as I had a hard time falling asleep last night as I wondered when the effects of the medicine would take over during the night.  It would be in the afternoon hours that I would learn the reason why she had not felt the effects of the medicine.  From blood tests taken throughout the night the doctors found that Natalie's body is metabolizing the Busulfan far too quickly.  Therefore they must increase her doze by 80%. As increasing the dose is not uncommon, this percentage of increase is large and must be watched closely.  So, it will be another night of blood draws and vitals.  I hope that she will be able to sleep well enough.  Both Lisy and I trust the doctors working for Natalie and have agreed to go forward with their decision.  Will write more tomorrow.



  1. Best of luck today. We'll be thinking of you.

  2. I read of your story on KSL. I am very touch. I am from Pleasant Grove as well, though my child has gone through nothing compared to your, I have been at Primary Children's a few times for procedures. I love that hospital and could not say enough about their staff. I will be thinking of your whole family, during such a hard time. I am an O+ blood type and would love to donate blood if I was able.