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.

Friday, January 18, 2013

Alice Has A Fever--ICS

Last night Alice complained her ear was hurting, she was slightly warm, nothing too troubling.  By 3:30 am she had a temperature of 101.4.  Tyler brought her to the hospital.  The standard initial tests were done, blood drawn and cultures sent off.  They started her on an antibiotic called Cefepime, this will clear up any possible ear infections quickly.  Hopefully Alice will come home Sunday Morning.  She has not had additional fevers, and by Sunday Morning the blood cultures will have had time to grow something if there is something there.

Alice is having a great time here, It has been fun to see everyone; we love the staff at the hospital.

Tyler and I were discussing in clinic on Monday that it will be hard to leave the bone marrow service when the girls are done...Natalie is almost there. Soon Natalie will be seen only once a year, as long as she remains healthy. The bulk of her medical care will then be transferred to immunology, and her other specialties. It is a bitter sweet thing. We have truly appreciated the program and people, and soon we will take a big step forward. It is a wonderful and exciting thing to take this step forward, yet we will miss the great people we have come to love.

Easy hospital stays such as this seem so quick and simple, however, I feel there are more challenges at home with Evie who is still trying to recover from this past illness that went through the house.  She wants me to hold her non-stop.  She has been fairly pleasant despite her discomfort. 

I came to the hospital this evening and traded Tyler places...I already miss little Evie.  Tyler is so good with her, they have become great pals as of late...I know she will be just fine.


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