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.

Tuesday, February 14, 2012

Back to 100

Alice's ANC showed a count of 100 this morning and white blood cell count of 900. This is very good, we hope she will gain some momentum tomorrow. She slept until 2:30pm today, I left before she had woken up. My dad took over today so as to give me the afternoon off. Thank you everyone for the birthday wishes. Grandpa had tried to convince our children that I turned 50 today, but Matthew wasn't falling for it.

Natalie is doing well, she still has her aches and pains, but she is walking around the house on her tippy toes and wearing a smile.She continues to remind me that she does not want her hair to grow back. She's is so content on being home, we love it.

Grandpa said Alice played for a couple hours but was worn out soon after and fell asleep. The results from the tests that were taken yesterday should arrive in a couple days. We are anxious to see what the results will be as they are testing for a couple different viruses, one of them being for Epstein Barr. Its been a long day, will have a better post tomorrow.



  1. Hi Lisy and Tyler..I had a great time with Alice yesterday and I will miss taking care of her for the next few days! I was able to unhook her from all of her tubes and let her look out the window and play with Grandpa Fish. It was great. Also we checked her Epstein Bar and it came back negative! Hooray!

    See you soon..I will be praying for neutrophils while I am gone!

    Love.. Nurse Emily

  2. Hooray for the good news from Nurse Emily! We are still praying for you guys with all our hearts! Now we can start praying for neutrophils ( whatever they are). Thanks for the tip Nurse Emily. Natalie, I can't blame you a bit for not wanting your hair to grow back. You are gorgeous and it seems like it would be so much simpler to not have to worry about bad hair days. But...keep in mind, you are Natalie Fish, and you will always be beautiful no matter what your hair does! Hugs to everyone...Sis. Strong

  3. I have never even met your girls but I LOVE them!! Emily the nurse is so wonderful! She was my Emily's favorite along with Laura whom I have also seen in your pictures! You guys are in good hands. We are praying that you will find answers soon and that Alice will be back to her old spunky self!

  4. Phew! I'm finally caught up on the blog. I'm sorry that it's been so long. I'm so glad that Alice may be improving and that Natalie is doing well at home. I hope we can help with something soon. In the meantime, you're all in our prayers. Best of luck!