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.

Tuesday, January 3, 2012

Day 13

I read several emails out loud to Natalie today. She loves to listen to someone read to her, especially when the material is directed to her personally. I am so grateful for the remarks of encouragement for her, I know they play a healthy part in her attitude and recovery. Thank you for the emails.

Today was met with Natalie playing checkers and reading books between sessions of throat pain. Her blood levels required another platelet transfusion to reduce the bleeding. I noticed today that although the pain has not receded, it seems as though her threshold for it has increased. When she did her mouthwash, she screamed, but continued without stopping. So proud of her. Tomorrow is day plus 14; a day we have been looking forward to. Between day 14 and 20 are the days Natalie's body will possibly take hold of her new marrow from Blair.

We were notified by the doctors today, Alice will be admitted this coming Monday. Her donor is ready and has been scheduled. Alice had many labs today, a chest x-ray and nasal swabs. We are hoping Alice will get a room next door to Natalie. There will be one more day of blood draws, and come Monday she will embark on a journey her older sister knows all too well.
Tyler
Posted by at 10:54 PM

2 comments:

  1. Maland FamilyJanuary 4, 2012 at 12:21 AM

    Yeah, lots of love & prayers for both girls at this time. I'm so excited for Alice to get started. One step closer to healthy. Love you all:)

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  2. AnnaJanuary 4, 2012 at 1:27 PM

    Yay for Alice! Natalie, you are amazing. I'm so proud of you for doing your mouthwash even though it hurts. You are my hero. Even better than Superman. Or She-Ra.

    ReplyDelete

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