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.

Saturday, December 31, 2011

Happy New Year!--Day 10

Tomorrow is a new year, and we are wishing for a healthy 2012 and beyond!
Natalie and I celebrated by me giving her a two hour pedicure and foot rub. She loved every minute of it. I ate some left over chex mix from Christmas. She asked me to brush her hair while we watched the ball drop in New York City. By the time I was done brushing her hair the bed was covered. She has several bald spots, and by tomorrow much of her hair will be gone. I have always loved her hair, it's so beautiful and naturally styled itself. I keep thinking about what it will be like when it comes back in...I'm sure it will be just as pretty.
She did better today, the pain was managed with a higher dose of morphine. Despite the higher dose it still hurts to swallow and cough. We encourage her to cough so that it can help keep her lungs clear; although, she still chooses not to.

Dr. Pulsipher came by today and said that everything was following schedule. He did say that she had a considerably bad case of mouth sores, most likely from the significantly increased dose of Chemo (Busulfan) that she required. My concern at this point is the stability of her liver as time passes. The Busulfan and TPN (iv-nutrition) are very hard on the liver. The medication they administer to keep the liver clean and healthy can only be taken orally, which is so hard for her, and once its taken she often vomits. I wish there were an IV version.

Again, thanks for your words of encouragement. I read the email notes to her and the blog comments. When I finished she said, "Is there more?"

Below are some random pictures. Natalie with her brothers before coming to the hospital, and her and Alice together on their bed. The other picture is Natalie and Blair just before Natalie received Blair's marrow.



  1. I have never met your family, having only come upon your story online. However, I check your blog several times a day for updates. I find your family inspiring. Your positive outlook amazes me. I have 3 children of my own and I can only imagine how hard this must be you watch your children suffer like this. I can also imagine the pride you must feel at their bravery, courage and love for each . Despite your struggles I can see that your family is truly blessed. I pray for the health and safety of your family. Good bless you all.

  2. Natalie,
    I am your Daddy's cousin, Jill. I just wanted to say hi and let you know that I think you are very brave and super tough! I know 2012 is going to be an amazing year for you!

  3. I wanted to say hi, I am just a follower of your blog that my friend passed on after seeing your story on the news. I hope 2012 is much better and healthier for your girls. Natalie and Alice you girls are amazing, we think and pray about you and your family each day. I can't imagine what you are going thru, and I just hope you get feeling better soon so you guys are all home as a family together under one roof. We all love and think of you and your family daily. Be strong we love you!

  4. Hi Natalie: This is Parker's grampa. We live in Peru. We love hearing about how you are doing. We say our prayers every morning and night and include special prayers for you. We ask Heavenly Father to help you deal with the pain you have while you're getting better. I know He will help you even though it seems like it takes a long long time. He helps us mostly through the good people around us, like your Mom and Dad and others. We love the turtle pictures you made and put on the blog. They are very good. When we come home from serving in Peru we will be sure to see you. We love you Natalie. Max and Claudia Simmons

  5. Natalie,
    This is Sister Hale (Ashlyn's Mom). I saw the pictures of your uncles and cousins with their hair cuts. They all look so cute but they are all boys. If you want to have a girl join you I will cut my hair off too. Let me know and if you want me too have your mom email me and I will cut off my hair and send you a picture. We all love you and are praying for you.
    Love, Sister Hale