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, January 13, 2012

A long Day

Today started well enough. Natalie slept for most of the day. Her ANC is 900, and in the early morning she received more platelets. She woke around 2pm and complained of the usual symptoms of nausea and aching all over. We do our best to console her, but it seems that we can not fulfill her need for comfort entirely. She is however distracted easily with books, crafts and emails we read to her.

As Lisy and I ping pong, back and forth from room to room we have started to realize how difficult this is going to be; that is doing our best to maintain the comfort of Natalie and Alice. Speaking of Alice, she received her dose of ATG anti-bodies today which made her spike a fever and vomited for the first time. So hard to see her outgoing personality be subdued by the chemo, it will be a long night.

Natalie pulled another prank, this time on me. It wasn't as successful as the others, but still funny. Thank you again for the comments of encouragement, we love reading them to the girls. They also boost us up as parents, thank you very very much.

Even being a long day, still there were some sweet moments and special memories made--with hopes renewed.

Tyler


Posted by at 12:03 AM

4 comments:

  1. UnknownJanuary 13, 2012 at 9:52 AM

    ha ha, that was funny Natalie. Brielle loves playing hide and seek with her Daddy too. Brielle's Dad doesn't like to hide too much because he says he's too big to find good hiding spots. But it's lots of fun anyway. Good to see you. Your Are Beautiful
    Love
    Sue

    ReplyDelete
  2. ShayJanuary 13, 2012 at 10:37 AM

    wow, Tyler sounds just like his Dad!

    Natalie is a great practical joker! It's so great to see her up and about and feeling a bit better.

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  3. ShoeJanuary 13, 2012 at 11:12 PM

    Your family is an inspiration to me! I follow your blog daily and am always amazed at how positive you all are. Thank you for your strength and example as you conquer this challenge as a family. We will continue to pray for you.
    Great job Natalie. You are amazing and I bet your little sister is glad to have you close by and showing her the way.

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  4. CindyJanuary 15, 2012 at 9:13 PM

    Hi Natalie! My sons Gavin and Andrew loved watching the videos of your pranks. Now they run around the house and say "Where's Natalie? Where's Natalie?" Or they try to hide from me and say "I'm hiding just like Natalie." Keep up your great sense of humor!

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