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, February 9, 2012

Day 23

I woke this morning early in anticipation for when the doctors would make their rounds and find out if Alice's ANC would have improved. Before they came, I sat by her side and watched her. I could tell her lips were a little more swollen and she felt warm. I am weary of fevers as they can be a sign of infection, however they can be a sign of engraftment too. When the doctors came she was still asleep. Their report was that yet again her white cell count was up to 800 but still no ANC count. They explained to me that this is not out of the ordinary, however if she does not show signs of engraftment within the next few days, the plan would be to tweak her medication dosage. They informed me that on occasion the med dosage amount can suppress the engraftment process. They were confident in their delivery but I could tell it was also given with a bit of caution. I believe it was because when a patient is taken off too quickly from the high dosage of medications, their reaction to it will vary. I'm trying not to think about that until it needs to day at a time.

Lisy is there now, Alice needs her mother. As fathers, we can do many things, but there really isn't a substitute for the healing power of a mother's love.



  1. This picture brought tears to my eyes instantly ... Doing exactly what moms do best! How great you must feel holding this beautiful little girl, god bless you all!

  2. Oh, I hope Alice gets feeling better soon. Anna wasn't feeling well the other day, so I rubbed her feet for her. She loved it. I never would have thought of doing it if it weren't for your example, Lisy.