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.

Friday, August 3, 2012

Alice Came Home Today

The Doctors told Tyler that Alice was ready to go home.  He was so excited, called me and said, "We're coming home and we will be there by noon.  I quickly called pharmacy and made sure all the medications were ready for him to pick up before they left the hospital.  Alice's medication list is lengthy, but hopefully we can start eliminating them one at a time as she continues to improve.  She also has two added IV infusions in the evening.  It took me a minute to sit down and create a new chart for us to follow with the proper doses, etc.  We are so thankful that Alice responded so well to the steroid treatment in order to control her graft vs. host disease.  The doctors told us that they were pleased with how well she did.  They anticipated it being much more difficult...even weeks longer as it often can be for most patients.

When troublesome news comes along, in general people immediately search for something that may be to their advantage despite the trouble.  In this situation we agreed that at least her new marrow is strong and wants to be active.  We just need to give it more time to play nicely with Alice's own tissue/cells.  Hopefully in the long run it will pay off.

She is happy to be home.  When Tyler pulled up in the driveway I was waiting outside.  I opened the car door and she said, "Hey where is everyone?"  She walked into the house and again as always, said, "I'm home!!  It's me, Alice. I'm home!"   

Since she has been home we have been dancing around her, making little meals here and there and filling the tiniest requests--it's a busy job...but a great one!