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.

Tuesday, January 14, 2014

January 14th

When I arrived Sunday, Alice was lying on her bed watching a movie I do not recall seeing before. When she looked at me I saw that she was happy to see me. When she reached for me I felt so good. It had been a couple days since I was last at the hospital. My dad had been with her and reported that she continues to have her moments when Alice is her old self. After my Dad left, Alice asked if I would lay by her. It felt so good to me knowing she wanted to be held. I laid by her side and wrapped my arm over her shoulder. I held her close, but her tubes and wires between us seemed to keep me far away as they would feel my weight and send a signal to the machines that there was an occlusion in the lines. I would continuously need to shift my weight around so as to not set the alarms off on her machines. Sunday night was long. All through the night she vomited or had diarrhea. I changed a dirty diaper every fourty-five minutes and in between cleaned up vomit until seven in the morning. We were both exhausted. She was given nausea medicine throughout the night, but it did little for her. All through the night I felt for her and at the same time I felt for Lisy. She was dealing with sick kids at home. In the morning the doctors were set on wanting to scope Alice's stomach. They consulted with the GI doctors. They decided to eliminate some of the medicine and feeds for Alice first before a scope would be done. By the end of Monday those ailments had slowed down, which gave me some relief as well as Alice. Perhaps her feeds were being administered too fast? If so, its good to know but still tells us she is healing at an incredibly slow rate. The doctors continue to say she is making progress, but refrain from giving a date on when she will come home. I think this stay will be longer than her chemo/transplant stay. Tues: Her ANC count is back down to 300. It is cause for concern, but the low count can be attributed to the anti-viral medicine. She will get another dose of neupogen to kick start her marrow. She did however wake up more pleasant this morning. Her shingles are scabbing over, but still seem to be a ways off from disappearing.
  This is a funny clip of Alice last week.

1 comment:

  1. Alice…we are SO PROUD of you!! We love you and pray for you every day…keep smiling and dreaming about your friends the rollie pollies ;)