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, December 20, 2013

December 20th

ANC 500
HGB 9.1
HCT 26.1

The past couple days I will admit have been really bland. We seem to have been in a lull that will only change once we see more improvement in Alice. I came up on the 18th and once I entered the room and saw her countenance I could tell she was still a long way off from being herself. Her eyes were long and her frown permanent. Her communication is still to only point and grunt. She will speak, but only when the two initial lines of communication won't do. I was able to get her out of bed and walk over to the couch where some toys were. As she sat and stared out the window, the snow fell on the parking garage. It had stacked up several inches and I decided to change things up. I asked her if she would like to see me go outside, on top of the garage and wave to her. She nodded and I went. I wondered perhaps the idea was more for me than her. In the end it benefited both of us. I was glad to get out of the room for a minute and she was happy to see a change of scenery.
This stay has been a tough one. Mostly because we didn't expect it. Which makes being at the hospital through Christmas that much harder. We are so grateful for what Primary's and others have done for us during this time. Christmas at the hospital really is a great experience. Santa comes and visits and there is all sorts of activities provided to the children. The tough part is having the family split up on Christmas Eve and Christmas day. However, we will make the best of it and feel grateful that we still have our little Alice with us. That of course is most important. Both Lisy and I again  are so grateful for the acts of kindness to us during this time. We would not be able to handle this schedule and the emotional ups and downs without all of you. Really, its true. We could not do this with out you. We love you. Merry Christmas.



  1. That video breaks my heart!! We need Alice back!! I can't wait to see her smiling and laughing again!! This is such a tough time…I have no words but prayers are coming your way!! Love you guys!! Get better sweet Alice!! Merry Christmas ;)

  2. I agree with Jill. Poor baby! Geez I wish you guys the best and I hope things start turning towards the better road soon. Merry Christmas!