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.

Saturday, December 17, 2011

Effects of chemo are setting in

Natalie has been so brave today. She hasn't felt well, and spent most of the evening vomiting; however, has remained happy enough. She has complained that her whole body hurts. She has found distraction in her iPad, thank heaven for the iPad. She developed a fairly high fever in the early evening. We think it is from the drug ATG, which is a rabbit antibody. This is the most aggressive of the preparatory regimen. They will watch her closely. She had a small issue with a medication was a little too much and caused her to be too sleepy and less able to keep her oxygen level up.

Natalie was able to Skype home to Matthew. She was so happy to see him, and said with a homesick voice "Matthew I just want to be able to hug you", so the two of them exchanged blowing kisses over was cute.

I just looked at the clock and it's 1:00 a.m.--well past my bedtime. Days and nights here begin to blend, and surprisingly the time has gone by so quickly today. Tyler is home with Blair, Alice and Evie, it will be interesting to see who will have a more restful night. This is my first night away from my baby! I think I am going to have a harder time than her.

More tomorrow--


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