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.

Wednesday, October 23, 2013

Day 6--Last Day of Chemo for Alice

Alice received her last dose of Chemo!!! Methotrexate, yucky stuff, it makes her feel so sick.  It feels good to know that all the destroying drugs are done and now her body will be able to heal...with lots of help.  The point of her three doses of Methotrexate post transplant (day 1,3,6) are to provide better chances of accepting the new marrow, as it reduces the possibilities of GVHD.

Alice required red blood cells today, and platelets.  Still having fevers.

This is truly a day to recognize...we celebrated with the pink bucket.  It was hardly a party but considering the circumstances it will have to do.

Actually Alice received a box of the most beautiful princesses dresses ever....the perfect day for such a gift. She has them displayed in her room and is anxious to wear them; she points to them each time a new person walks into the room.  She is so proud of them.  Also included were shoes, beautiful shoes, she has been wearing the shoes under her blanket.  Just having them on even while sleeping must make her feel lovely.

I can't wait to see her little bald head while wearing such glamour and beauty.  There will be pictures to come.

1 comment:

  1. I'd love to send something...where would I send it? I can have my oldest (shes 5) draw her a pic! :-)