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, April 16, 2012

Post Transplant Consultation


weigh in

measure up

vital signs

Hearing test in Audiology

Natalie Day 117 -- Alice Day 90

Today was Natalie's official 100 day consultation post transplant with the doctors. We reviewed a lot of information from last weeks labs and tests, and discussed future expectations. If explained in detail I could be typing for a long time and I'm afraid it would be too bland. In short, she is doing wonderfully as hoped and the Adenovirus is staying at bay. Her lung CT scan came back good. The areas in her lung that had created concern pre-transplant have indeed improved slightly, although appeared faintly a new spot which is of no concern.

Natalie had a follow up hearing test today and she seemed to nearly parallel her pre-transplant testing, with some small changes of more hearing loss. Possibly, and hopefully the additional loss can be attributed to the fluid which is currently in her inner ear due to the virus. We will be meeting with an ENT shortly to discuss intervention such as hearing aids. She has not been able to hear birds chirping for a long time and it breaks my heart to know that she isn't able to hear those lovely sounds. For Easter I got her a bird whistle from the dollar store (the kind you put water in), but it didn't seem to work like the whistles I remember having as a kid...I guess you get what you pay for :).

Natalie's ANC was 3600!! Awesome! She will begin a more rapid taper on her anti rejection medication. Because she had a sibling donor her graft vs. host disease chances are much lower than might Alice's be. We hope for the best as we taper down.

As for Alice she is more of a wild card. Although, she has been doing great. Her numbers were low today. ANC 500. The decision was made to taper her more rapidly from the steroid to allow her body to produce more white cells, under less immune suppression. We will watch her closely as well for graft vs. host disease.

It was a great day in clinic...of course the hardest part was changing Natalie's dressing. We are trying a new kind of tape this week to see if it helps with the agony.

Tyler and I had ordered 2.00 dollar laser pointers for each of the kids so they could play laser tag (the homemade kind)...with rules such as no pointing them in eyes (hmmm???) Well for family night we discovered something even better. We decided to hold our very own laser light show. We turned out all the lights, sat against one wall and pointed our lasers to the other wall and ceiling. We played a variety of fun and wild music turned up really loud and had a blast as we flashed our lasers all around. We made shapes, follow the leader, tried to synchronize it to the music. It was so cool. The kids loved it, and after a while our laser show turned into strobe light dancing. The lasers pointer are also flashlights, the kids couldn't believe how fast they were dancing under strobe lights. Everyone took a turn dancing and showing off their moves. This then turned into shadow shapes, which was fascinating. How true the saying is that necessity is the mother of invention...or as we might alter, boredom is the beginning of adventure. We were having so much fun we almost forgot about the girls meds and infusions.

I plan to make a post of all the fun projects, games, crafts, and activities that we have been doing. We have received some awesome packages from family and friends that have provided some great entertainment and fun.


  1. I am glad to hear the girls are doing good...just get Alice's counts up! Natalie will love having hearing aids It really will make a huge difference. Good luck and happy layering :)

  2. Laser tag sounds fun. And the laser show, too. You guys are fun and creative parents. I'm glad to know that you are doing so well.