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.

Sunday, January 15, 2012

Long Night

It was a long night as Both Alice and Natalie were feeling sick. Alice has been keen on skyping with Natalie across the way. It is comical to watch them converse; Natalie humors each call, but I can tell she looses interest in the conversation after the tenth "Hi Natalie."




Alice has an off day today for her chemo, which will be nice as she should have a good day because of it. I continue to have dreams that the Backyardigans are my neighbors and they constantly tell me I have no imagination. Don't believe a word they say, I have a great imagination.




More platelets today for Natalie, and her numbers rocketed to 1500 this morning. That is good news; bad news is she still feels horrible. Last night she cried and yelled in pain do due to the stomach craps. I held her as she shivered until the pain subsided and she fell asleep. It wasn't until the early hours of the morning Lisy and I were able have all three children sleeping, and we were finally able to negotiate some sleep of our own.

Tyler


2 comments:

  1. Oh man... I don't know who to feel worst for...Alice, who threw up on her beautiful new princess dress; or Tyler, for being told by a talking/singing animal, (I imagine it was Uniqua), that he has no imagination. Don't let it get to you Tyler, we believe in you.
    I truly am amazed that you and Lizy have not only been able to keep your wits about you, but you've somehow managed to keep your sense of humor as well. The videos are both adorable; they help us feel closer to you all and yet cause us to miss each one of you even more. You are an amazing family and we love and miss you! We will keep the prayers coming -The Strongs

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  2. Alice, you look so beautiful and so miserable at the same time in your princess dress. We love you guys and think of you many times a day. We're rooting for all of you!

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