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, January 26, 2012

Alice's Hard Day and a Blood Drive

It was a hard day for Alice. Her breathing is noticeably different as her blood counts have fallen, and her little face has become swollen due to her mouth sores. It is a struggle to watch her as she tries to maintain a cheerful appearance. As we brushed her hair, it started to come out by the handful. I thought to myself, "I've seen this before, I can handle this." I am discovering, however that I am requiring more strength than I realized; to handle watching what we have known was coming. As the hair continues to fall so have my hopes that she would be one of the few that escape the mouth sores and hair loss. It is cute though, when she hands me every strand of hair she can to throw away.


She received Platelets again today. They have raised her threshold for a platelet infusion. Because the excess of bleeding from her mouth the doctors decided to error on the side of caution, therefore, she will most likely need platelets everyday.


Natalie was so glad to be home. She did however have a close call when she threw up everything she ate last night. Lisy grabbed a garbage can just in time to catch the goods. We all played a new card game the kids love..."Sleeping Queens" It was fun to play with Natalie, Matthew and Blair together. It had been some time since that has happened.

Tyler

We are so grateful for the blood drive that will be happening this Saturday. I cannot express how grateful we are to all of you.



Posted by at 8:54 PM

3 comments:

  1. UnknownJanuary 25, 2012 at 11:08 PM

    I know you dont know me, but I have a friend that knows your family. I just want you to know we are praying for you and your kids. I have been reading your blog and just wanted to give you a high five! You guys are amazing! You are such a great example to me. Your kids are amazing too! They are adorable and I am so impressed by their positive attitudes and willingness to cooperate. It breaks my heart to see your precious kids have to go through this, but I cant wait for them to experience the joy of a healthy life! Each day you are one step closer to that goal! Good luck to your family!

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  2. Bryan and Amanda RussJanuary 26, 2012 at 9:13 AM

    Breaking my heart to see Alice's struggle, she is such a sweetie!!! Soooo happy about Natalie and hope she continues to do well, its so wonderful that she can be with her brothers again. YEAH, Natalie!!! Always praying for strength for you all to endure this time, one day, one hour at a time.
    We love you!

    D&C 78:17-18 and D&C 84:88 "I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you to bear you up."

    PS - Lisy, you look so dang cute as your walking Natalie out of the hospital, all skinny and beautiful you :) (this is Amanda, btw ;)....awkward otherwise)

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  3. Heber and his "Deli" aka: AdeleJanuary 26, 2012 at 3:00 PM

    Again I have to tell you that I am praying for your family and that your sweet girls are being prayed for in the Columbus, OH temple today.

    I cannot tell you what an inspiration your family is to me. I don't know you personally but I find myself waiting anxiously for updates on your beautiful little ones.

    I am happy to see that Natalie has gone home. I'm saddened to see sweet Alice struggling now. I hope and pray your lives will be happy and healthy soon.

    Thank you for taking the time to share your story. I have been holding my dear little ones a little tighter lately.

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