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 20, 2012

Day 3 and Day 30

Natalie's ANC was 800...a little down from yesterday. She is feeling good. Most of her medicines are oral now. She is doing well enough with it. Today she organized her room and sorted through all her things. She loves each and every item. I have been slowly taking little things home here and there, and she has noticed every item that was missing. Natalie is on target for discharge on Monday/Tuesday. That will be 40 days for her total at the hospital.

Alice will be started on IV nutrition tonight, she is eating less and getting thinner. She still drinks bottles and plays without too much trouble. At this point Alice's body has tolerated everything better than Natalie did.

Tyler and I are happy to be with Matthew and Blair. They have been so understanding with all the transition that takes place. They have had some hard times though. We think Matthew has felt a bit lost in the shuffle, as he wasn't able to "give his bones to anyone". We gave him some other very important responsibilites to help keep everyone happy and positive.

Bliar has healed so well. At this point, there is only two distintictive dots on both sides of his hips to show evidence of his heroics.


1 comment:

  1. I have been following along and just wanted to let you know how wonderful your children are. In such tough times the are so many posts of them laughing, smiling and joking it is wonderful to see. Hopefully Natalie will be allowed home next week and Alice will be following before you know it!