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.

Monday, December 9, 2013


Sunday, December 8th

ANC 800
Hemoglobin 8.8
Platelets 173

Today was one of the hardest days for Alice, so far this stay.  About the time I came into her room at 4:00 p.m. to switch Tyler places, she did not look good.  I watched her for a moment and she didn't seem to respond normally.  Also her oxygen levels were dropping.  It was disturbing and the nurses were worried. They called the NP who was on for the day to peek at her and examine her.

I quickly sat beside her on the bed, rubbed her back, aroused her some, talked with her....within moments she seemed less distant and her oxygen level bumped back up.  She clung to me for a long time and insisted that I lay in her bed with her all night.  She improved each hour.  I obviously didn't sleep much, but I wasn't worried about sleeping.  I was just incredibly relieved to be with her and adhering to her every request.

She was placed on a very small Morphine drip this morning because of the pain; due to her despondency in the afternoon we felt it best to remove the continuous Morphine drip.  She seems to be feeling more normal already.  Her pain management will be given as needed now.

Alice continues to complain of pain and nausea.  Tomorrow we hope to fit her into the surgery schedule for a gut biopsy.

In the evening Alice sat on my lap and watched the church's Christmas Devotional.  I wondered if she would even enjoy it.  She was so content to watch and listen to the music and speakers.  It was comforting and peaceful to both of us.  

Monday, December 9th

ANC 700
Hemoglobin 8.8
Platelets 175

Today Alice seems slightly better.  She interacts with me more.  Of course you can imagine how comforting this is for me, although, she continues to vomit often, I feel there is a bit of improvement.  The operating room was able to get her in much sooner.  I was happy.  She did well with the biopsy.  I just waited outside the room.  It was fast and soon we were back upstairs to our ICS room.  The doctor said her stomach and esophagus looked very irritated in certain areas.  The irritated areas were biopsied.  We should hear the results of the biopsy within a day or two from pathology.  

It's possible that her pain and stomach sensitivities are from tender and over active nerves.  This can happen to kids who have been given a lot of medicines and chemo-therapies.  It's possible that she is allergic to something she is on, it's possible that it will be GVHD, and it's possible that we are seeing Campath rearing it's ugly head.  Campath can have delayed effects around day 50.  Campath was part of her aggressive preparatory regimen for this second transplant.  She was given Campath back in September.  I sure hope we aren't going to see mouth sores all over again...and really hope it's not GVHD.

Anyway we had a pretty good day today.  She didn't say but three words all day, she was more awake and willing to paint with me.  We read many many books, including some Christmas stories.  She will motion to me and pat her bed...letting me know that I need to lay beside her and read.  We decorated her room with many little purple stars the primary children made for her; on each star is written get well wishes...we read them all.

Just as I was tucking her in and saying good night, she said her third word for the day..."lullabies".

Sleep Well Alice!


On our way to surgery


  1. This breaks my heart. I hope they can figure out what's going on in her stomach, and like you said, I hope it's not GVHD. Feel better sweet Alice!

  2. ALICE, You are SO brave!! We are praying for you and hope you feel better VERY SOON!! We love you!!!