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.

Sunday, November 18, 2012

Hard Morning for Alice--Spending a Night at PCMC

Last night before bed Alice said her tummy was hurting.  We brought her the pink bucket and out went dinner.  She was fine the rest of the night; however, this morning she vomited at least 8 times and couldn't keep any food in her tummy nor her medicine.  We informed the doctors and they felt it would be wise to watch her over night.

She has been nauseous intermittently for the fast few weeks.  We wonder if she may be experiencing borderline symptoms of rejection.  Her steroid has tapered to a low dose and we have begun the cyclosporine taper.  The possibility of Graft vs. Host Disease is again an option, and as always a virus is an option too.  Alice does not have a fever...this is a good thing.

She is happy and doesn't seem under the weather, however, we'd rather error on the side of caution and see that she is checked for possible problems.

Typically nausea from the chemo has long's hard to pin point things with Natalie and Alice because of their complexity.  Is it diet?  Is it rejection?  Is it an illness?  Hopefully in Alice's case it's simple and fixable.

Still no news on Alice's biopsy.


Poor Alice.  This went on and on.  My camera was in my pocket, when I saw how sweet it was that Evie was helping Alice, I had to capture it.  I then had to wash Evie's hands.  Alice and I must have played ponies and blocks for three hours as we sat on the chux pads and held the pink bucket.  When Tyler and the boys returned from church...Alice said, "I'm all better."  I am amazed at the control Alice has...when she feels the vomit coming, she will hold it in until we snag the closest pink bucket.