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, October 31, 2013

Halloween, Day 14

ANC is 400 today.  It is likely that she will be at least 500 tomorrow (day 14), which means tomorrow is engraftment (November 1st)!!  If she maintains a level of 500 or more on Saturday (day 15), then Friday (day 14) is official engraftment.  Did any of that make sense? :)

It has been so sweet to listen to Alice begin to talk a bit more.  I love the conversations we have together...especially when she is procrastinating her mouth care and oral medicines, she will think of anything to escape it.  Two nights ago we had a struggle getting her to do her medicine.  Myself and two nurses working together to complete the task...eventually she said to all of us, "calm down, calm down,"  when in fact she was the one needing to calm down.  It was so funny.

It was fun to see many of the hospital staff in costume.  Alice enjoyed watching.  She wasn't feeling the energy to join the excitement, but happy to display her costume on the bed to look at.

This is a hard picture to see, but this is what she looks like each morning when she wakes, before we wash her.  This picture actually looks better than some others.  The thought of her sores healing is more than comforting.  

Mimi (Red), Alice, Irish (Dorothy)

Dorothy and Todo

Trish and Nancy

Big Chief and Little Chief

Ninja (Blair) and Purple Man (Matthew)

Witch Grace

1 comment:

  1. LOVE these pictures! I can't wait for Alice to wake up without such a sore mouth!!! Congrats on the great counts. We are praying for you!!