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, August 15, 2013

Long Day

Monday brought a long day for both Natalie and Alice. Alice's numbers were down so both a platelet and blood transfusion were needed to get her through the week. I was expecting the conversation with the doctors to be one of them emphasizing the need to get Alice in for transplant as soon as possible. It turned out to be thus, however they said a conversation was needed to be had with the California doctors to ensure that everyone was on the same page, and afterward they would have a more concrete date upon when they will bring Alice in for transplant. It took a few hours before they could match Alice's blood, so we did not get out of there until after 5:00 p.m. Natalie's appointment was not as long as Alice's. She had some blood work to do, however, Lisy had to take her back the next morning on Tuesday for the labs because Natalie had already taken her morning meds and Lisy didn't realize that one of the labs was for a trough level. Lisy said she did well when she did her blood draw. Natalie really has been doing better with the process of giving blood, labs are less often and this helps. She may or may not need tubes in her ears. We will know more next week.

 No matter how many times we do it, it's always strange to me when we finish up late at clinic. We arrive in the morning when things are busy and by the time we come out of our room the halls are quiet, lights are off and most everyone has gone home for the day. Its at that time that I often reflect on how many times and how long we've been coming here. When I exit the clinic door I will often look to my right and to the end of the hall. My eyes will typically meet the glow of afternoon sunlight through the conference room windows and couches that are often inhabited by silhouettes resting or talking on the phone. I always assume they are family or friends, catching up on life before they lovingly and dutifully walk back into what I cannot see from my view around the corner; which are two automatic doors leading the way to patient rooms. I then reflect on how many times I have and will be one of those silhouettes in the near future. I also wonder if there have been many before who have watched me catch up on life and walk back in for what is likely to be a long night of doing your best to make your child as comfortable as possible.


She feel asleep like this.

Brennan and Natalie
Sunday we had dinner with the Clark family.  They are the homeowners of the Parade of Homes #16 in Bluffdale.  This room was designed Hawaiian recognition of Natalie's wish.

Brennan gave this awesome Ukulele to Natalie...she loves it. 

A tree in the playroom at PCMC.  A whole bunch of wishes by children.

I especially loved this one.

Making ice cream in the playroom....passing time until Alice's appointment was over.

The ice cream actually tasted good.

Made a trip to the Beehive house for a tour.

We had enough time to do something fun while waiting for Alice and Tyler.  No siblings are allowed in clinic..Natalie and Blair would not have wanted to be there anyway.

Had some lunch at the Lion House Pantry.

Wishful thinking.  She had a wonderful gluten free pork and potato dish.

Next day, Tuesday. Matthew and Jerome came to give Natalie some moral support.

1 comment:

  1. Well im glad to there doing well. Evan D.