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, November 7, 2013

Day 21, A Stroll in the Hallway

ANC 3800, Hemoglobin 8.8, Platelets 50

It was so cute when Alice looked out the window this afternoon (she didn't wake until 3:00 p.m.) to find BOO BOO the bear, he wasn't visible, and her comment was..."I need to look out another window". Luckily the doctors had given her permission to take a walk outside of her room.  So the big event today was a stroll down the hallways on a bike.

She didn't recognize her room when we returned, she hasn't seen the other side of the door for a very long time.

Today when I was giving her a bath, she said with a Ha Ha cackle, "I don't have to wash my hair, cuz I don't have any."  Later I teased her by pretending to brush her hair with a brush.  She laughed and giggled; good things come from being bald...never a snarl to untangle; soon we will be combing the swirl on her back. ;)

Lisy


Boo Boo the Bear, made a special greeting for Alice.  It made her smile.

When we were preparing to leave the room, I grabbed her tennis shoes and clothes, she looked at them and shook her head in disagreement...then pointed to her Cinderella slippers and dress.  Of Course!!  She even had me display them in this manor as she insisted on taking this picture.

Can things get any better?

Mom's make-up...this is a true sign--'Alice is back to business'



Posted by at 11:30 PM

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