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, January 5, 2012

Day 15--and feeling a bit better

Natalie's mouth looks better today. Her body has begun to produce a trace of white cells (level at .2), most likely monos which are precursors for ANC (Absolute Neutrophil Count) recovery. Engraftment is official when her ANC is 500 or above for two days in a row. Good news....engraftment is just around the bend.

She received more platelets today and will need red blood cells tomorrow. She had a small fever today, possibly due to a combustion of new cell production.

Thursday is dressing change day for her Broviac line. This is most definitely Natalie's least favorite thing. Unfortunately they had to change it twice today, she had been itching a bit under the tape and her finger got caught and pulled the tape up just enough that hey had to replace it.

She drank from a nutrition shake...she swallowed, that was big. She also ate a fruit snack. The sooner she eats the better. We are so happy!

I have to admit, the other day I was home and called Natalie's room to check on her. No one answered, so I tried Tyler's cell-no answer. I called the nurses desk--no answer. I waited for a while and tried again--no answer. Of course, I begin to get worried and start thinking of all things that could be happening. Finally, I get through and she is happy and talking...she was just busy I guess. What a relief!! I can't imagine what it might be like to live each day without that constant worry.

Tomorrow Alice and Evie will be having some labs done. Alice's will be slick because of her PICC line. Poor Evie, she is so chunky that it makes it difficult to find a vein.



  1. We are all praying for you guys! I hope Natalie engrafts SOON! Alice will be good!! The Lord is watching out for the Fish's!! LOVE YOU!

  2. It must be so amazing to get GOOD news! We love you guys.

  3. Hooray for the good news! You are doing a great job Natalie! My kids and I all have turtles on our brains ever since your adorable turtle pictures went up on the blog. There has even been talk about getting one for a pet. We’ll see. Here is another fun little poem about a turtle we thought you might like. We love you Natalie! Keep getting better!
    -The Strongs

    "I am Home," Said the Turtle
    -John Ciardi

    "I am home," said the turtle, as it pulled in its head
    And its feet, and its tail. "I am home, and in bed.

    "No matter what inches and inches I roam,
    When the long day is done, I am always at home.

    "I may go whole feet . . . even yards . . . in a day,
    But I never get lost, for I'm never away

    "From my snug little house and my snug little bed.
    Try being a turtle! - That's using your head!

    "You can go on forever, no matter how far,
    And whatever you need is wherever you are!"

    ("Is there one thing I miss when I'm snuggled in tight?
    Yes: there's no room for someone to kiss me good night.")

  4. Way to go Natalie! We love hearing good news! Tyler- is there any way you could email me the scanned file of the turtles that Natalie drew? I have a little idea I want to implement. My email address