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, December 29, 2011

Warm Anti-bodies

Yesterday Natalie had a wonderful visit from my parents. She does love it when they come up to read her stories and sing to her. As of yesterday, she has declined from speaking to often since her sores have become more sensitive and plentiful. Her throat is covered in cankers and although she has been so good to take all of her medicine, it has become incredibly painful for her to do so. She does not eat anymore, and will most likely be on a steady diet of morphine by the end of the day.
Last night around 8pm I noticed that in addition to her throat and roof of her mouth, her tongue had also become an off-white color. I knew the windows of patience to do mouthwashes had officially been closed, and it would take a healthy amount of coaxing to convince her to allow us to dump more peppermint flavored alcohol down her throat. Once she relented and the antiseptic was administered, the look on her face was memorable. With bloated cheeks, and eyes that spoke of courage and laced individual messages to the three of us in the room, she swished from one side to the other fighting the pain in her mouth with everything she could muster.

Her look translated to me as an angry yell for resolution, similar to that of the story Jerry Clower tells of raccoon hunting with "Knock'em out John." If you are not familiar with this story, below is the link, start at 2:37 and listen to the end. Well worth it.


On the doctor's round this morning they came with good news with regards to the effectiveness of Natalie's Chemo. They found she no longer has the "warm anti-bodies" floating around in her body. These warm anti-bodies were the culprits that would attach themselves to her red blood cells and leave a portion of the cell exposed. This process causes them to become singled out for destruction in the spleen as well as other portions of the reticuloendothelial system. (what a great word....re-tic-ulo-endo-the-lial) Thus, her red blood cells would be trapped in the spleen causing it to be enlarged. Natalie has had an enlarged spleen for most of her life due to the warm anti-bodies. To suppress it she has been on a heavy dose of steroids, and now that the chemo has won that battle, she in theory now will not need anymore help from medication to suppress those anti-bodies, simply because they do not exist in her body anymore. This is a great sign that the chemo is doing its job. In addition Natalie was itching her scalp this morning uncontrollably. As the doctor noticed this, he reached over and gave a slight tug on a few hairs; they came out easily. The hair loss has begun, and within 3-5 days it should be gone.

With regards to Alice, she has a tentative date to be admitted in two weeks. Her donor has checked into a hospital today somewhere, and will be going through some final blood tests.

Tyler
Posted by at 9:06 AM

3 comments:

  1. AnnaDecember 29, 2011 at 6:14 PM

    Natalie is such a strong soul. I can't help wondering what a great hero she must have been in the preexistence. I feel privileged to know such an amazing girl.

    ReplyDelete
  2. StrongsDecember 29, 2011 at 8:30 PM

    What a beautiful picture. I think Natalie looks like Grandma Fish. I am so sorry Natalie, for the painful mouth sores; I wish I could take them from you. You are very brave to do what the Doctors tell you, even when it hurts so much. We are all proud of you here.
    We love you- The Strongs

    ReplyDelete
  3. Max - Grand DadDecember 31, 2011 at 6:58 AM

    Dear Natalie,

    I am writing to you from Peru. We are here on a mission in the temple and follow your blog every day. You are our hero. What a brave girl you are. I have put your name and Alice's name and Blair's name on the prayer roll in the temple. Just imagine - people here in Peru are praying for you every time they come to the temple. We know your Mom and Dad. Years ago, when you were just a little girl in Arizona you and Matthew came to swim in our pool. It was so much fun watching you and we have pictures of that day. We hope you will soon be feeling better, Natalie. We love your pictures of the turtles!

    Love, Max and Claudia Simmons

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