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.

Wednesday, April 9, 2014

Doing good....whoa, wait a minute

 A quick post. Alice did well today at clinic, even after the nasal swab. Her counts were doing well. ANC at 7.5, music to our ears. This week we will take her completely off of her bone marrow medicine and see if she can maintain on her own. I could tell the doctors were excited too. Alice was complaining of an ear ache so we had them check to see if there was any infection. They were a little red so they prescribed an anti-biotic and we were out the door. Awesome clinic day.....

Lisy called 5 minutes ago. The hospital called about the nasal swab results. Alice has RSV and couple other cold viruses detected. She needs to be treated and that means back to the hospital for five days. They are preparing a room right now.

Could all of you excuse me for a moment while I remove my big boy pants and say, "But, I don't want to go BACK to the hospital."  Good grief!  When we check Alice in we'll be able to post more information.


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