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.

Saturday, February 4, 2012

Day 18--Another day closer

I came to Alice's room bright and early today. I couldn't wait to get here. It was like I was a kid again and feeling that excitement of arriving at Disneyland. I haven't been able to be here since Monday/Tuesday. I was so happy to see her.
I sanitized the house and fed the baby, and prepared Natalie's meds before coming...I thought Tyler might appreciate a heads start for his adventurous day at home.
Alice's breathing is improving a little each day. Apparently the nurse practitioner informed me that this past Wednesday they were debating whether or not to send her to the ICU. They gave a type of emergency medicine (racemic epinephrine) through a nebulizer that cleared her airways just enough to keep her out of the ICU. Racemic epinephrine is practically the same thing that is given to someone with a very severe peanut order to open their airways when having a severe reaction.
Alice's white cell count is 300 today...second day in a row, but her ANC is still zero.
Even with her counts slowing coming in--it will yet be a while before her airways improve. The mucocitis is a large part of the problem. However, there are other things going on as well. Some of her respiratory difficulty began before transplant.
Honestly the days can't pass fast enough for me. I am anxious to see her feeling better. It seems as though she will be a week behind Natalie's schedule of engrafting.
Almost all the pictures of Alice she is without clothes. I know she must be cold, due to the chemo and hair loss...although she refuses to wear clothes. I have tried all the tricks in the book to dress her. It would just make me feel better to see her warm and cozy. She never has liked wearing clothes. Who knows, maybe she is in fact hot. I would like to imagine that she is as comfortable as possible considering the circumstances.
At home, Natalie continues to stride forward. She has terrible joint pain and her feet hurt often. This is common after transplant. She is a trooper. The other day I played a made up game called "spy" with the kids. Natalie and Matthew were a team, and Blair and I were a team. The object was to sneak around the house touching three different strategically planned objects and returning to your home base without being seen.
It was quite hilarious as Matthew was so frustrated that Natalie couldn't keep up with him and continued to blow his cover. She was enjoying the game so much she didn't mind that they were caught often.
Natalie asked Tyler if she could always be bald. She doesn't want her hair to grow back. She loves the fact that she doesn't have to wash or brush it. Plus she says she looks better without it. :)

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