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.

Monday, February 20, 2012

Day 34

Last night was tough for Alice. She didn't sleep well due to vomiting, and she was showing rashes on her arms, cheeks and bottom. We had to change her diaper a dozen times because of the severe diarrhea. She is so uncomfortable at times that I wonder how in the world she hasn't broken down mentally. I do my best to keep her comfortable, sometimes I think I fail. This morning's news wasn't as good as we had hoped. Her white cells jumped to 1400, but her ANC dropped back to 0.

The doctors are becoming more concerned and have increased her steroid dose in hopes to suppress the lingering anti-bodies until the new marrow takes over. If this does not work within the next few days, the doctors would like to reintroduce a drug called Rutuximab. Alice has had experience with this drug before, but she did not have any success with it. Moreover, Lisy and I have reservations from using it again. The doctors are saying that this time would be different due to her having different marrow. We are still apprehensive of its use on her. I'm not sure that we have much choice.

Good news--the past couple days Alice has done well on room air, while awake. She requires oxygen (nasal cannula) still at night and periodically throughout the day.

Alice played for a good portion of the day. She bowled, and had a good time with some building blocks. She also got a package of Backyardigans, which she loves to play with. She keeps them in her bed and will not let me put them away. She requests more often now that I sit beside her in bed to play instead of sitting in the rocking chair beside her. When she beckons me with her little hand and then pats the vacant spot beside her, I can't deny the request.


Tomorrow will be a better day. Tyler

Posted by at 5:58 PM

4 comments:

  1. KristalymFebruary 20, 2012 at 10:37 PM

    Dear sweet Alice,
    I sit on pins and needles everyday awaiting for your updates. My heart breakes for all you have been and are going through. At times I find my self questioning why your having to endure all this. But only our heavenly father knows, and I know through faith and prayers you will have the strenght to fight and get better. Hang in there sweet girl! Before you know it you will be home with your loving family. My prayers are with you each and everyday. lots of love, big hugs and kisses! Hang in there mom and dad sending prayers your way too!

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  2. JessicaFebruary 21, 2012 at 7:18 PM

    Dear Fish Family
    I have been following your blog faithfully for months. I have a two year old and a one year old who I feel are sick all the time in & out of drs. I read your blog to remind myself that someone else out there has it worse than us. Your family is such an inspiration & I pray for you often! My heart aches at the trials and cards you have been dealt and that Alice is having a much harder time recovering. I pray that time will heal her & that your continuing faith will continue to bless you. You guys are great parents! Alice & Natalie- you guys are troopers! Much love and prayers.

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  3. katieFebruary 21, 2012 at 11:46 PM

    We are praying for your sweet girls and family. I just want to hug all of you right now thinking of what you guys have been through. Lisy and Tyler-you are AMAZING parents and your 5 precious kids are dang lucky to have you. Sending loves your way.Love-The Budges

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  4. AnnaFebruary 22, 2012 at 8:20 AM

    Poor little Alice. I'm so sorry that her numbers are back down. Thank you so much for keeping us updated, even though I'm sure you are exhausted from everything that's going on.

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