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.

Wednesday, February 8, 2012

Happy or Sad?

Alice's white counts were 700 today...ANC zero.

Tyler called me tonight and said that Alice really wants to see me. I was just serving the children dinner, so I quickly finished helping them, and rushed to the computer to Skype with her.

Upon calling her she seemed so down. She began to get emotional, I know she is homesick. I can't imagine what might be going through her mind. She must be wondering where her Mom is and why isn't she with me.

After seeing her, I told Tyler..."that's it--I'm going up there and I'm not coming home until she is with me." I know I will feel much better tomorrow when I can be there.

I didn't realize Tyler was filming us on Skype. It breaks my heart to see how emotional she is. She wanted to be happy but was so frustrated that she wasn't with us. We all tried to cheer her up--Matthew has a giant stuffed cat fish and he was pretending that it was eating my head, she laughed then cried. Actually, now that I think about it...I would cry too if a giant cat fish was eating my mom. (a two year old's perspective...should have thought that one through first)

I'm glad we are keeping a record/journal of all this. It's hard to record the sad things but I know it will make us all stronger in years to come. We are kind of journal crazy people. Well I guess I should speak for Tyler, he hasn't missed a day in his personal journal for several years--and I'm sure that he recorded the day he solved the Rubik's cube.



  1. Prayers Prayers PRAYERS!...Alice is a VERY special little girl!

  2. Hang in there beautiful girl! You will be home soon! It breaks my heart to see you upset. You have been through so much. Keeping you in my prayers. Your a tuff little cookie! Lots of love!

  3. Oh, my heart breaks for sweet little Alice. She must be so confused and frustrated. I hope she can feel all of our love from afar. We're praying for that number to go up soon.

  4. Oh sweet Alice, I cried too. I know how much your Mommy wants to be with you!! Soon, sweetie. Love you oodles and oodles.

  5. Hi Fish family- our prayers and thoughts are with you and those sweet girls. I love watching the videos of this experience. We are glad to see that things are progressing!
    Love- Phil & Chelsy Burnah(Hale, as in daughter of Rosa BANG Hale)and Family

  6. Sweet, little Angel. You'll be home soon. Happy Valentine's Day, Precious Alice!