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.

Thursday, March 13, 2014

A quick post

This will be a quick post. It has been a few wonderful but cautious days. Wonderful because Lisy and I were able to spend a few days together. Cautious because, we received a call from the doctors telling us they had found a virus in Alice's body they had not thought to search for in the previous months. The virus goes by the name Adenovirus. The treatment will be fairly aggressive as Alice will be required be in clinic three times a week for at least three weeks. She will be in clinic tomorrow, all day. Lisy will be able to gather more information with regards to side effects and in addition write a post more specific to what is ailing Alice.

Tonight however, Alice was feeling pretty good and was in the mood to talk a little about the medicines she likes and doesn't like. So, while at dinner our tradition is for each of us to take a moment and talk about the most interesting parts of our day Alice chose to speak on her oral medicine.

A Much Needed Get-A-Way
....many thanks to Amberly and Tyler's parents for taking care of things at home.  We were so worried about leaving, but it turns out that the kids needed a break from us as much as we did them.  The children were much better when we came home than when we left.  Our favorite part about our get-a-way was just driving in the car and having no real agenda.  Full length conversations that were uninterrupted...Wonderful!

Historic Cove Fort

Newport Beach

Just a quick stroll and visit...a little cold.

He has always wanted to go to a banana stand.
p.s.  The doctors called us with the news regarding Alice's adenovirus about two hours into our trip.  We sat on the side of the highway for a very long time trying to decided what to do...turn around or continue.  We prayed about it and discussed everything.  We felt good to continue, so off we went.  It was a much needed time away.  If anything the few nights away we slept better than we have in months and truly needed the rest.


  1. I LOVE this!! Especially Evi in the background :) REAL LIFE isn't it! We love you guys!!

  2. She has the cutest, sweetest, little voice!