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, April 5, 2012

Back to the Hospital; Parent's Perspective Vs. Child's

Parent's Perspective:

Last night around 9pm as I was administering the girls meds, my arm brushed Alice's head and instantly I felt it warm. I did not feel the need to panic, however my step was quick to find the thermometer. I methodically perceived the next moments of decision making to be based off of what Alice's temperature would be. When the thermometer read 101.7F, I immediately told Lisy who immediately called the doctor, who immediately made the order for her to be taken to the hospital. By this time, the feeling of urgency is surging. I rush to start the car and notice my arms are starting to sweat, Lisy rushes to pack the usual overnight supplies. A quick prayer with the family, out the door with Alice, and into the car on our way to the familiar destination. I arrived at the 4th floor with Alice in arms and bags in hands ready for directions to the prepared room. Vitals and blood is taken for testing. I do a fair job of disguising my anxiousness with light conversation and forced laughs.

Child's Perspective:

Mom: "Alice you have a fever we need to take you to the hospital tonight."

Alice: "Yeaaaaaaah, I go home to my room?"

Alice: "Dad, take me to my room, OK Dad?"

Upon Arrival and looking from the outside of the hospital.

Alice: "There's my room Dad, I want Backyardigans."

Dad: "Alice, are you sick?"

Alice: "YES!"

Dad: Alice, do you feel sick?"

Alice: "NOooooooo!"

Moral of the Story:

I wouldn't sweat if I had Alice's perspective........I'll work on it.

She had a confirmed fever and we are currently waiting for blood test results. Most likely a virus is the cause, and her new system is getting a test drive. We will be here; most likely until tomorrow. The doctors will take no chances therefore will require a couple nights. Will post video and pictures soon.



  1. We'll be praying that things look up soon. I'm glad that Alice isn't upset about heading back to the hospital, even though the thought brings tears to my eyes. Best wishes for you all.

  2. Tyler,

    We know that drive all too well. After the first couple of times, the sense of urgency isn't as great and you don't worry so much. Some of the feelings never leave, but it does become somewhat of the routine.

    Love you guys.