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, January 28, 2012

Alice Day 11

Thank you again Everyone for another amazing blood drive. I get the chills just thinking about all the good that will come from the blood drives.

I love that I can call the hospital any time of the day or night and talk to the nurse caring for Alice. I can get all the information I want and need to know when I am not able to be there. I have called on a few occasions in the middle of the night because I couldn't sleep, usually I feel better and am able to sleep after checking in. Today Alice stayed awake for most of the day--hopefully she will have a good night. She received more platelets, and as of two days ago requires a nasal cannula to help keep her oxygen levels up. She moves around the bed so much that the blow by doesn't help much--plus it's so loud.

Last week she started having some respiratory issues so we began using a nebulizer. It has seemed to help. Beginning today she will receive less albuteral (nebulizer). I feel like her lungs will not receive complete relief until her own attacking antibodies have died off.

Alice is so funny, she is miserable but willing to do everything she is asked to; the mouth washes are so painful, but she opens her mouth for the nurses without hesitation. She even tells them thank you when they finish. This alone is a huge blessing for us. This whole experience would be more difficult if she weren't so helpful.

She has been retaining a lot of fluid, you can see in her pictures that she looks a bit puffy. She is now on some medicine that will help her body rid of the excess fluid.

As for home, things are moving along. Even though it is Saturday, we had the children do some school work. I must have made it sound really fun, because they were on my case all morning to do school. Finally, I managed to accomplish a bit of school. Recess was decided by Matthew. We pretended to be Rocky Balboa and the Russian while listening to "Eye of the Tiger". I told them not to punch very hard...Blair got me pretty good though. Thanks to Tyler, he has been teaching the boys how to box. I really don't like the idea.

I finally decided to unload the car from when Natalie came home...(a week later) oh well! We have been playing so much, there was no time to do much else. I wasn't too anxious to be productive anyway. Usually after hospital stays we just crash and accomplish little.

It reminds of the when Evie was due to be born, both Natalie and Alice were in the hospital. Natalie in the ICU and Alice in ICS. During hospital stays we are all mostly running on adrenaline. Going into the third week of hospital life and being 8 1/2 months pregnant was a challenge for both Tyler and I. Tyler trying to keep his business running, and me trying to NOT have a baby at a children's hospital was quite an act. Finally, on a Monday morning I went home to find some rest in my own bed. Not realizing just how exhausted I was, Natalie asked the nurse to call me, and all I remember was her saying, "Mom, when are you coming, I'm all alone." I wanted to cry, because I felt so helpless. I think I told her I would be there right away. Next thing I knew, Tyler was home from work and I could hardly move. Needless to say, Evie was born that very night. Once my body was able to rest she came. I hadn't been at the hospital for an hour before she was born.

Looking back at that experience, I've discovered some great blessings. One being that Natalie grew a lot. She seemed to have matured quite a bit during that stay. She became less afraid of the hospital. I think it was helpful for her to realize that she can do it. Just like anything, when presented with a challenge...we arise to the occasion.


Here are a few pictures Grandpa took of Alice.

On Monday, Natalie has another appointment. I had a little talk with her about being kind to the nurses and doctors even if she does not want to be there. They are our friends and have helped us so much. She agreed to be happier. We'll see come Monday. ;)


  1. What a little trooper! Good job cutie! So impressed by your strength and will. Thanks for taking the time to update on their progress. I think and pray for you all every day.

  2. My heart hurts for sweet Alice! As for Natalie... don't worry about a thing. The nurses are used to the kids not acting very kind. I promise, it is the medicine. It is so hard as a mom not to be embarrassed though! I remember wanting Emily to be the perfect angel saying thank you and being so wonderful to everyone. This wasn't the case and I had to realize that she was really struggling. We had a lot of talks about being nice to others...One day she was feeling more like herself and she kept saying "Mom, I am being so nice!" over and over like it even surprised her! Natalie will be back to her old self in no time!
    Prayers coming from the Heaps family! Have a great day!

  3. I have been reading your blog since I came across it right after Natalie entered the hospital. We live in Arizona, and I don't know your family, but I have grown to love them. Your children are adorable and all of them are such troopers! We have 5 children of our own, 2 of which (Bryce age 5 and Annalise age 2) have a rare genetic condition that has changed our lives in so many ways. It is amazing to have these little celestial beings in our home. I know you know what I am talking about. Feel free to check out their blog if you would like to (and if you ever get a minute!:) Anyway, I just want you to know that your girls and your whole family are in our prayers. Thank you for sharing their strength and courage with all of us here in the "blogging world" I hope that things go well with the rest of the treatments and healing for Natalie and Alice, and that somehow you will be able to get the rest that you need. Hugs and prayers from Arizona, Tammy

  4. Alice is such a brave girl! What an incredible person she is. I can't wait to see her grow up. Although, as a parent, the last thing I want to see is my kids growing up. I like them small! It sounds like you guys are doing amazing (even though I don't think I'd want to be punched out by Blair, either.) We love you all!