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, November 9, 2013

Day 23, Happy Birthday Natalie

ANC 4700, Hemoglobin 8.8, Platelets 67

I asked the doctors this morning why Alice's numbers fluctuated so much yesterday.  They said most of the kids on the floor had off numbers.  They think something wasn't right with the lab.  Today's numbers seem more realistic to Alice's trend...and we like them better too.  Either way the numbers yesterday weren't a huge concern anyway.

Another great day for Alice.  Her morphine pump was removed.  She can still have oral pain meds if she needs them.  Levaqin was cut and Cephalexin was started.  Levaqin is a strong antibiotic so I was happy for the switch.

Alice's current challenge right now is her ongoing nausea and tummy pain.  Her tummy needs to heal much more still.  She struggles to keep down water.  Nothing is passing through the gut.  Her tummy needs to start waking up and very slowly she will start eating more--baby steps.  The doctor started her on small dose Reglan to stimulate her brain to start up the stomach functions.  It has given her more of an appetite, but her tummy is disinterested.

If this process continues or worsens, she will have a NG tube (feeding tube) in order to help the process along.  There is always the possibility that she may be experiencing early sings of upper gut GVHD.  We REALLY hope this isn't the case.  Likely it isn't the case because she has not been experiencing GVHD diarrhea that would/should accompany it.

The doctors have reminded us that she received a very aggressive Chemo regimen and we should expect her stomach to act this way naturally.  Nonetheless, they will keep an eye on it.

Natalie had a wonderful birthday.  She seemed so happy and content with the day.  She was anxious for her party to start...really the party consisted of us here at home, Grandmother, Aunt Amber, Grace, Jessie and her friend Shane.  It was simple, which I was thankful for.  I didn't have the energy to plan a big event.  She laughed and laughed, we played the games she wanted to play.  This was probably the best part.  We played Simon Says and Mustard Ketchup, in which was her own origination.


Natalie starting laughing about nothing...the kind of laugh that feeds itself.

Alice was on facetime during the fun, however, she became too homesick so we had to say good-bye.  She was so cute when Natalie opened her gift and card.  Alice began telling Natalie what the card read, after several minutes of trying to express herself the main message of the card was...I miss you Natalie.
Alice's gift...The Orange Bouncy Ball

Birthday Pie

Everybody but Grandmother, she's got the camera.

Happy to be together.
Alice had visit from Merlin and Pat.

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