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.

Monday, March 5, 2012

Clinic for Natalie and Alice

Today both Natalie and Alice had a clinic visit. Alice's first time back. When we drove up to the hospital she shouted from the back seat, "Hooray! That's my room". It was so cute. I'm glad that she still likes to see that place. She is so positive.

Natalie and Alice's numbers were the same today, interestingly. Both with an ANC of 800. A little low, hopefully next time it will be higher. Alice's calorie count will decrease in her TPN. She has been eating fairly well.

Tyler held down the fort at home while I took the girls to their appointment. It went well enough, could have been worse. I was only 30 minutes late...we are going to work on that. I spent 15 minutes just looking for my cell phone. Blair had it last and it was under one of the seats in the car. I had made some food for the girls to take, something safe for them to eat, but it wasn't a big hit. I ended up eating three peanut butter and jelly sandwiches. They had some packaged snacks at the hospital. They eat two bites of something and are full.

Alice cried most of the time we were in clinic, I finally figured out why once we got to the parking lot. She needed to throw up and was holding it in. Needless to say the stroller took a bit hit. I'm just glad it happened before we started down the freeway. She soiled her lines, so as soon as I got home I changed the caps to prevent any germs from getting in.

The doctor suggested taking the kids outside while it was warm, and not windy. We bundled them up warm and found a nice trail to explore near the house. The kids rode bikes and big wheels. Blair's big wheel has a flat...ya know the plastic kind of flat. After a while it started to become obnoxious, but it was great because it made him work that much harder and was able to fall asleep easier tonight.

The best part about today was being outside. Tyler and I loved the scenery of the mountains, the fresh air, and most of all the fun chat. The kids went nuts over the jets flying above. It made me realize how simple things can be so exciting. Maybe we need to get out more :) That will all come in time. This week's weather will be good, so we will take advantage. It's a little tricky to find the proper window for safety, but when it happens it's wonderful.

Last night was a little better then the previous, however, after being up with Alice for some time I just couldn't stay up any longer. I told her I would be right back, I went back to bed and said to Tyler, "can you take it from here?" He got up and took it from there. My next memory was me trying to figure out where I was. I had woke moments later half way into bed, I was too tired to actually get myself tucked in. I tried for 5 minutes to orientate myself. I wasn't sure which bed I was in. At some point I had been in the boy's bed and the girl's bed. I finally lowered my foot to the floor to see if I could touch. Our bed is high off the ground so I knew I would be able to tell instantly by how long it took my foot to reach the floor. Once it touched I took a huge sigh of relief that I was in my bed and then snuggled in nicely. It was great. As for Tyler, I'm not sure where he ended up. Maybe he only made it to the doorway.

Someday we are going to laugh at all this. I hope so anyway! :)



  1. Oh how the memories come flooding back when you talk!! I think Emily threw up every time we went to the hospital all over our van! I am so glad you were able to get out...don't stress the counts too much, I did and it made me feel like I was on a constant roller coaster. Just look at the overall progress :) I am so glad you are home. It really will get easier, with time!

  2. Last night Nate helped Charlie say the prayer at dinnertime. Nate said, "Please bless the Fishes." Charlie repeated, with his own interpretation, "Please bless Nemo and Dad." The girls and I laughed so hard that Charlie had a hard time finishing the prayer. We're pretty sure Heavenly Father knows what he meant, though.

  3. I love you Lisy! I love your daily example to me and and my family. We are thinking and praying for you always :)

  4. You are an amazing example of a true family. thank you for sharing your amazing story honestly touches me. I cant imagine my two year old boy being sick and you make me realize how lucky i am thank you!