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.

Thursday, January 19, 2012

Alice Day 2, Natalie Day 29

Something we said wasn't so funny!

just another bad hospital hair day

all this just to change a diaper and check vitals

feeling good :)

A good day and a not so good day. Good news, Natalie kept her ANC to 1100. She received more platelets today. She ate two pieces of toast, some cheese, and yogurt. She talks about home all the time. This is a sign that she is feeling good. She may be able to go home next week if all goes well.
Once at home, she will still come to the clinic between 2-3 times a week for transfusions, lots of labs and close monitoring. These frequent clinical visits will last for 2-3 months. Then our visits will be a little less often.
Natalie saw a show on the discovery channel about whales. She has been crazy about it. I showed her some youtube videos of Shamu...she loved it.

A friend in another room named Sara made the girls some really cute masks. She glued some gems on their masks...maybe they will be more excited to wear them now. Sara rides around the hallways on her scooter--it's cute.

Alice is doing awesome. She plays and plays all day on her bed with whatever toy is there. She loves her blankets and movies. Tyler's cousin sent a new Backyardagains--Yipee! Her ANC is zero and she is eating less. We think her mouth is getting a bit tender, but no sores yet. Alice is so funny. She is starting to call the nurses by their names because she hears us do that.

Evie had a good day, she has been so sweet. She did decide to cry only when I had to change Natalie's dressing of course....which leads me to the bad news. Tyler had a bad day. :O He hit his wall today. I told him not to worry I would take care of the dressing change and sent him on his way to exercise. He needed a breath of fresh air. Alice was fine, Evie cried a bit, but we got it done and Natalie survived. I did it myself with help from the nurse.

Just as we finished Natalie's cousin Kennidee came to visit. Perfect timing, she needed a reason to smile after that. Once Tyler came back I hit my wall and needed some fresh air. I went outside and stood below Natalie's window. It was so refreshing, and maybe because it had just rained it reminded me of being on vacation for some reason. It was a lovely moment. I imagined I was in Hawaii, then I entered the hospital's revolving door and came back to reality in a hurry. :) However, ready to get back to business.

I thought I would surprise Tyler and make a really soft bed for him. A nurse found me a mattress and I made him the best bed ever. I then gave him a foot rub and told him that everything would be alright. He feel asleep, so I rubbed Alice's tiny her little feet are, then I came to Natalie's room to rub her feet. I thought to myself, I'm such a nice wife. Then I looked over at my bed and saw that Tyler had made my bed for me hours before. It made me smile and suddenly all the hard things about today seemed easier.

Tomorrow we will get to go home and see the boys.



  1. you two are amazing. thanks for being a great example to nathan and me. it's these wonderful, yet simple acts of love that touch my heart. i hope little alice has a good day today, and that natalie has another great day.

  2. You guys are so awesome! Thoes walls are all too familiar!! I am glad you realize that they are walls and that they will will climb over them soon enough :) We are cheering for you.
    Natalie, it is way cool to walk around with decorated masks, Emily did it all the time and when people looked it made them smile! Remember... even though they can't see your smile, they can see your eyes smiling and people LOVE to see your sparkling eyes :) I am so glad you are feeling better, hopefully Alice will be feeling better soon!

    Happy Friday!

  3. Lisy, Tyler you are awesome. I am so glad you are taking such good care of each other, as well as your sweet children. Just remember the most quoted phrase in scripture, "And it came to pass..."Some day this will be a memory, I think there will be more good memories in there than you think.
    The Talbot family

  4. I love how you two are such strong supports for each other. You are an amazing example of Christ like love. We are so glad to see Natalie improving and pray that Alice stays strong thru these difficult times. Love you guys!