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, December 1, 2013

Clinic--Tummy Trouble

This past week in clinic (Monday November 25th), Alice's counts were still good.

ANC 3100, Hemoglobin 10.3, Platelets 184

This is the first time in a long while that her platelets have been considered in normal range.  Her Hemoglobin is getting there.  ANC still good, dropped a little but plenty high as it is.

We considered placing another feeding tube, but decided to give her another week of eating and taking her medicine on her own.  Likely next week we will place the tube and try to take her off TPN in the next week or two.

When Alice woke this morning for clinic she was crying...I asked her why and she said, "my doctor is leaving".  Yes it's true Dr. McManus is moving to Tennessee.  We will miss her.  This was Alice's last time to see her.

During The Week--

Thanksgiving Day...Trampoline time.

Tyler made some awesome gluten free banana bread with the kids.

Sunday Dec. 1st

Here is a quick update since this past Monday.  Alice has declined, regarding her diet.  Her appetite is shrinking each day.  It hurts too much to eat.  She vomits more and her tummy is in more pain.  Her steroid medicine has been tapering more and her decreased appetite could be related to less steroid in her body, or it could be her new marrow having more reign under less immune suppression, which might be causing some acute GVHD.  Obviously we hope this isn't the case.  Tomorrow in clinic we will place a NG tube and hope the following week will improve.  If not, I assume they will do a biopsy of her stomach and gut to see if something is happening in regards to GVHD.

She complains of ear pain.  Tomorrow the doctors will take a peek into her ear.

She has energy and is happy.  Still keeping us laughing, she is very entertaining.

More tomorrow....or when I have time to post in the next few days. :)...sorry for the dry and to the point post.  I have thought through every scenario in my head as to her declined appetite, it can be very exhausting.


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