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, September 26, 2013


Today Alice did well enough. There wasn't much slowing her down as we did puzzles, painted and danced to some of her favorite tunes from a synthesizer that reminded me of those manufactured in the 80's. I searched for the pre-loaded tunes hoping to find that all-time classic theme from the movie Beverly Hills Cop. Surprisingly, it wasn't on there and I lost interest in playing the synthesizer. Alice however let the bossa nova tunes roll and danced to it for an hour or so.
The Chemo did cause a rash today and Alice complained of being itchy until the steroid cream was able to help her out. Other than that there really wasn't anything that was out of the ordinary except that the doctors were surprised of how much energy Alice had throughout the day. I recall in her first "tour of duty" the chemo not taking effect for about a week. I'm assuming it will be the same way this time too. 
It was really surreal walking into ICS yesterday. Many familiar faces were welcoming to us and it felt good in a strange way to be back. I understood what the routine would be and I felt comfortable. That is, I felt comfortable up until I heard the first three sequenced beep from the machine telling us an infusion was done. It was all coming back to me could I have forgotten?

This is a time lapse of a few hours out of the day. 


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