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, January 9, 2014

Quick Post

ANC: 3.4
Hemo 8.2

Monday morning came and I was preparing the kids for school. It was hard getting them motivated to go back after the holidays. Matthew was crying about not liking school because it was boring, and Blair was playing the "I have a tummy ache" card. I wasn't going to fall for that one. So, I said "Blair, when you vomit at school give me a call and we will come and get you." I still had to get the baby ready for the day drop the kids off and be up at the hospital before 10 A.M. so Lisy would have enough time to get back and pick up Natalie at eleven.

 Lisy and I had quick chat at the hospital door and away she went. She was exhausted. Both of us are spent.  I'm glad to say that Alice was happy to see me although she is still feeling sub par. Her shingles are heeling up, however she continues to vomit and her diarrhea is in  my mind getting worse. She itches all over and has scratched up her head so much we needed to bandage up her crown or she wouldn't allow the sores to heal. The doctors are still positive that she is making progress, but will still not give us a date on when Alice can come home. This stay could very well be longer than her transplant stay. It has been such a long time since she has been home let alone eaten anything not through a tube. Nevertheless she has windows of her old self and it is a good time when she's giggling at anything that strikes her as amusing.

Lisy called me later Monday afternoon to inform me the school called and said Blair was sick. Apparently he vomited in the lunch room. Which from what I understand caused a small chain reaction. Kids dry heaving everywhere, oh the humanity! So, to Blair, "I'm sorry man." I thought you were playing me. I should know better.  To the elementary school my sincerest apologies.



  1. Ha ha ha this was too funny! Im so happy Alice is slowly getting better, you are constantly on my mind and i miss you all so much!!

  2. Oh goodness, I've been there! Sorry today has been so hectic and I hope life settles down for your family really soon!