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.

Friday, October 18, 2013

Day +1

I made it up to the hospital before noon today to find Alice resting beside Lisy. She looked exhausted, and nodded when I asked if she felt sick. She perked up after a few minutes though and showed her old self by laughing and explaining the activities she and Lisy had done prior to my arrival. She is such a good actor that I wondered if she was just muscling through her aches and pains or if she actually felt good. Its seems that she can play for 15-20 minutes until she needs to take a rest because she feels "icky."  Her counts were low enough today to require blood. Still no signs of the mouth sores, yet. I'm happy about that. I can remember both Natalie and Alice on their first "tour of duty" with the mouth sores and their morphine drip....horrible.

They tend to show up a few days after transplant.  After every meal we scrub her mouth out with a mouthwash.

Alice did a Winnie the Poo puzzle today by herself, (50 pieces). I was impressed. In my youth I was never a huge puzzle fan. It was my patience or the lack thereof that prevented me having the motivation to tackle a 1000 piece jigsaw. I was too busy trying do the important things like utilizing the Nintendo to improve my memory skills, i.e. getting thirty lives on Nintendo's "Contra." (Up, Down, Up, Down, Left, Right, Left, Right, A, B, A, B, Start). Ohhhhh...I still got it, and at the same time, I digress.  Even better, Lisy corrected me on the A, B, part.  I had only one set.  Apparently we were both doing important things.

Tyler


 Bundled up after a bath
Washing the Thiotepa off with new rubber duckies




 


3 comments:

  1. Nice post meh, I learnt something from this post and I'm working on making it useful. The blog reminds me of an equally interesting blog on my reading list http://danieluyi.com Dating and Personal Development Blog .
    keep up the good work.

    Regards

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  2. Here in Massachusetts we're thinking of Alice every day!!! Keep fighting!

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  3. Reading from Missouri. I dont comment much but I check for blog posts every day!! I have a son who is Alice's age and another 1 yr old boy at home and i can't imagine going through this with them. I look forward to your posts so that i can keep up with their journey. I pray for healing and comfort for Alice. I've been reading since this first transplants and it breaks my heart that she has to go through this again. May God bless your family with long and healthy lives.

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