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 6, 2013

Alice Round 2 Rituxan



It was my turn to take Alice up for her Rituxan treatment this past Wednesday. When I woke her up, the first words out of her mouth were, " I get to go to the hospital today...yeaaaaaa." She is always compliant to get her clothes on and prepare for the trip when she knows the destination will be a room where her request to play with toys will be granted. After arrival and settling into her room she was pre-medicated with some Benadryl and I had supposed she would start to dose off, but it never happened. She had anticipated the Benadryl's affects and mentally fought through the drowsiness. I laughed to myself as I watch the vigorous play slow down to a vacant stare, and then five minutes later her eyes blink and she becomes herself again. She beat the system today. The Rituxan treatment went well. Her numbers have not changed much, but we do not expect them to shift until her treatments are finished. When it was time to go, she cried.

The doctor called a couple days after Alice's visit on Wednesday and informed us that she had a negative CMV (cold virus) test.  Great news, we can reduce her infusion of Gangcyclovir to once a day.

Natalie's asthma has been kicking up lately due to the air quality outside. She will cough all night, and in the morning her stomach muscles as well as her throat are spent from the "all night" workout. After studying the weather forecast it didn't look like the inversion would be swept away for another few days so I had the idea to get her up and out of the bad air. I decided to take her, Matthew and their Uncle Josh sledding in the mountains. It was great for Natalie as we rose out of the bad air, her coughing slowed down. For one mile we sledded back to the car on a single tracked path underneath the snow covered pines and wound around logs and rocks that would bounce us faster down the mountain. Our feet were the brakes and when used the momentum would cause the snow to spray in our face. It was so cold it gave us a brain freeze, but the excitement of sliding down the mountain quickly makes you forget. The smile on Natalie's face, I think read as though she had forgotten for a moment what she has gone through this past year.

Tyler



A short clip of Sledding down the mountain. Uncle Josh on Camera duty.

Posted by at 8:51 PM

2 comments:

  1. TamaraJanuary 7, 2013 at 7:55 PM

    That looks like so much fun!! Where is that place?

    ReplyDelete
  2. Stef plus 3January 9, 2013 at 11:13 PM

    I love reading the updates on the girls. Sledding looks like it was fun!

    ReplyDelete

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