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, March 3, 2013

Learning to Draw a Smile

Alice is feeling great.  She is back to playing all day and happy.  She might be able to come home tomorrow (Monday).  She and I had a great day enjoying one another.  We even took a long late nap together.  Now I am paying for it on the other end.  It's nearly 2:00 a.m. and we are wide awake playing all sorts of games and puzzles.  

I decided to start preparing our things in the event that we are able to go home tomorrow...if not, at least the room will be a little more organized.  

When the doctors came by this morning we discussed a short term plan for Alice.  
Here it is:  We plan to give Alice's body approx. two months to improve enough to help us feel comfortable about not proceeding with a second transplant.  She will be given every chance she can to do this.  We will watch her closely for Graft vs. Host Disease and illness.  She will require infusions of all sorts in the meantime.  If Alice's body does not do well with this plan then we will have a sit down discussion with all her care givers and decide the next step, which would most likely entail a second transplant of another donor.  

Clinically she does fabulous.  It's strange to look at her and see the true reality of her troubles.  She acts and seems perfectly healthy most of the time.  Dr. Boyer did say that because she continues to do well clinically she provides more optimism for the best outcome possible.

Alice has also shown precursors of white cells...this is a great sign!

I had the chance to slip away today and catch the sacrament meeting here at the hospital.  It was nice to be there; 30 minutes and in your pajamas...can't beat that. ;)  

Today she said she wants to go home to her family and named each person one by one to the nurse.  Later as we were giggling and playing games, she said, never mind I just want to stay here.  One on one with Mom or Dad everyday and a nurse waiting on you with every request...can it be any better; this must be why it's hard to keep up with her at home; where is the nurse and the one on one undivided attention?  Still I prefer to be home together.  

I just can't get enough of Alice...she is too fun to be around.  We have been working hard today learning to draw a smiley face.  She wanted to curve her line upward so badly and after much work she got it!  She said, "Now my people can be happy."

The truth is Tyler and I have no idea what to expect in the future...we have no idea how rocky or smooth our road will be.  We have no idea what next week will bring, but we do know that none of it matters, as long as we know how to smile and say thanks to our Heavenly Father for every moment we are given in this mortal life...There will be a day when even our trials will be cherished as our greatest and fondest moments for eternity.  I suppose I am speaking for my children as well, when I say none of it matters…if we could only change one thing it would be to suffer for our children that they may not have too. 

Life is good, especially when there is only one direction to look—upward.


Some Late Night Fun

A Person

"The Happiest Person Ever!"

Giving her toys a bath.

I think they had at least three baths today...including Alice. :)


  1. Lifting your whole family up.
    Love your faith shining through. I am thankful He has our lives in Gus hands.

  2. There is so much heart, faith, and wisdom in your words. I feel privileged to know you. I love you, Sweet Lisy. Our prayers are with you and your family as you continue to teach us how to survive our trials.