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, May 15, 2013

Alice's Biopsy Results

On Monday, while in clinic we received news regarding Alice's bone marrow biopsy, which was done last week.  We learned that her cellular density has increased from 5% to 15%.  This is great news.  What does this mean? It means that we wait again a little longer to decided what's next.  Tyler and I are learning even more about patience.  I suppose one can never learn enough patience in a lifetime.

We are happy to wait two more months and see if she improves again.  Avoiding a second transplant is our better option, if the stars align.  Because her cellular density has improved, this possibly indicates that her marrow is regenerating a little more and hopefully producing more, and giving us more reason to wait.  The true test will come with time, as we measure how often she requires infusions of red cells and platelets.  Normally the doctors wouldn't let one wait this long in her condition, however, she is doing very well clinically.

Alice did not receive any infusions this week in clinic.

Counts: ANC--2000, Platelets--15, Hemoglobin--8.8

Alice will have neupogen every other day this week, rather than every day.  This will give us a better idea as to how her counts are doing naturally.

She will likely require infusions next week.  It seems as though she is going longer between infusions....even being a day or two, this is improvement. :)

I asked the doctors if Tyler and I are seemingly indecisive with future decisions with Alice and he reassured me that it isn't just us....they (the team of doctors) are equally indecisive.  Therefore, at least we are all on the same page.  I feel like a broken record, but again Time is our Tool!

I was upstairs with Evie reading to her as she couldn't sleep.  I heard some sounds coming from the stairs, I looked over and saw Alice coming my way.  She said, "Mom, you wouldn't believe what happened to me!!"  (with her hands on her hips)
I wasn't sure what to think, for a moment I felt nervous that maybe she hurt herself, or something happened to her line.
I said, "What!"
She said, "Dad put me to bed!"
I felt a sigh of relief and a giggle, but then reminded Alice that it was 10:30 p.m. and Dad has every right to put her to bed.  She persuasively disagreed and somehow ended up joining our story time.
Tyler has since gone to bed, rightfully so--and now I'm stuck with two sleepless girls.  I'm considering taking some hypnosis classes that specialize in putting little girls to sleep....and staying asleep!


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