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 27, 2012

Bowling Balls, and Heads That Look Like Them

The night for Alice was long as her number counts dropped to zero. She has acquired a bit of congestion and combined with the sores in her throat she has a constant bleed throughout the night. She will awake when there is too much blood in her stomach, and vomit. Her little breathing muscles are working overtime to assist her chest as it rises and falls rapidly to draw oxygen. It looks so uncomfortable that as I watch; I sync my own breath so that I feel as if I can breath for her. She has a constant morphine drip that does help, we dislike the idea of our child needing morphine. The ugly side is when her body has to wean from taking it, but I am glad it can give her a window to escape through from the pain.

This morning Alice sounded better, but still needed more platelets and blood. She ran a fever last night, so far nothing has come of it. Her steroid has been tapered down again, which leaves her on a low dose. Soon she will be completely off steroids. It has been a long time in waiting. Today is day plus 10 for Alice.

She was in the mood to play a little when her morphine kicked in; she has come to love the plastic bowling set the hospital has to use. (You know, the colored pins and black bowling ball with the not so effective finger holes) Alice insists on using the those quality finger holes before she bowls. Its really cute.

Natalie had an appointment today and was able to drop by for a bit before we took her home. The picture shows how excited she was to be back at the hospital. Alice loved seeing her big sister though, and was able to take a picture with she and I. I am looking forward to spending time with my family until Sunday as Grandpa and Amberly have given us the night off.



  1. Natalie and Alice, you are both SO beautiful!!! We are praying for you both.

  2. I'm glad that you get to go home with the rest of the family for the night. It must be hard to be "on" all the time. You guys are amazing. Alice and Natalie both look beautiful. Anna and Caroline think they're pretty lucky that they don't have to brush their hair every day!

  3. We love you all! Thank you for posting updates. It's so good to know how everyone is doing. Our hearts are always full of love for you.

  4. Praying daily for your sweet family. May our heavenly father comfort you all during this challenging time.