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, May 8, 2012

Clinic...Day 138 Natalie, Day 111 Alice

Today was Alice's official 100 day consult with the doctor (Dr. McMannus).  Alice's labs were better.  Her ANC was 800.  Her chimerisim  dropped to 94% from about 96%.  This is something that will be watched closely.  Another chimerisim  test will be taken next week.  Alice's other labs indicated that her new marrow is responding favorably.  Because of the incredible amount of mal-functioning antibodies that possessed her body prior to chemo and transplant, her recovery is slow in the coming, but thankfully heading in the right direction.  It just takes a lot of time for her old antibodies that were created before chemo to die off.  Patience is the process, I suppose.

Natalie's ANC was good.  However, her red cells are down a little.  Her hemoglobin was 8.  Anything less she will be transfused.  Possibilities for a drop in her red cell count include; minimal viral suppression, her body just trying to catch up after going through so much, and/or her body changing over to a new blood type.  She is trying to type A+, where she was O+ before transplant.  This process takes several months and sometimes doesn't actually ever switch.  Regardless, she will always receive O blood when infused.  We are going to watch her closely the next few days.  If she becomes more pale or tired we will take her in for more blood.  Being anemic has made her body more cold.  She snuggles up to me all day to get warm.  I have been warming the rice bags Laura Burton made the girls to keep her warm as well.  Her friend Lizzie Simmons made her a little turtle rice bag that has been perfect to warm her infusions as they go into her arm.  We are so spoiled to have such awesome friends and family who have covered all our needs...even the smallest details.

It's been a long day but a good one!


Alice loves to toss a coin into the water fountains...she asks to throw something in every time we pass by...I finally decided to video it so I we would remember it.

1 comment:

  1. Praying for strength and patience for you all!