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, February 23, 2012

Back in ICS...feels like home!

We have reached the end of the day and things have calmed down. What a whirlwind it has been. I can't remember if it should be day or night, sometimes this happens in the PICU. Alice's room in the PICU was between two rooms where Natalie was when she had Swine Flu and another time with Legionaries Disease. Being there naturally brought back some hard memories.

The EEG reported normal. The neurology team was pleased with the results, yet perplexed as to what happened. Between the PICU doctors, Bone Marrow doctors, and the Neurologists still remains a mystery as to what the initial cause was that led to Alice's seizures. The medications that are suspicious have been removed from her list. Her sugar levels are partially they have been watching them closely throughout the entire transplant process. Her glucose levels are stable now. She is not diabetic, nor does that mean she will be. It was just a random response to many factors at the time.

When Alice was being brought back to her original room she was aware of where she was. Upon arriving to her room she recognized Natalie's old room. She continued to say, "want Natalie's room" pointing in the direction across the hall. She repeated this six dozen times at least.

Alice's mental status is returning more each hour. This evening she was able to hold her head up by herself. She drank apple juice, and kept some of it down. Her eyes are still wondering but is able to focus enough to recognize and identify things. It's very comforting to see hourly progress.

We are thankful for the nurse Tabitha who handled the situation so well when Alice was coded. Tabitha was so responsive and acted quickly.

Alice received more blood today.

We are blessed to have so many people praying and fasting for her. She has made major improvements and we are certain that prayers are being answered.

When I came home from the hospital this evening, my house was clean, my laundry was done, my children were well cared for and a yummy dinner was delivered by my sweet neighbor. WOW! Thank you, Thank you!

Someone once said that two things can happen during hard times--they can make you or brake you. Because of so many others it would be impossible to allow the later to happen.

Before putting the children to bed I gathered them around me and explained that Alice is getting better. We sat and talked about Alice, about all the funny things she does. Each shared something they love about her. Within moments we were giggling and laughing. Oh, how we miss her at home.

I told them to remember all the blessings we have received in the past few days and during family prayer Matthew said, "Heavenly Father thanks for taking good care of Alice and thanks for everybody who fasts and prays for Alice." I know he really meant it. He told me about a movie he saw on The Friend website today. He said, "it made my tears come". I watched it and loved it. I feel like we are that little boy receiving such a beautiful red coat from all who know and even don't know us through your prayers.

Here is the address to this sweet story Matthew was telling me.

Natalie also reminded me of a story she watched in Primary one Sunday of two boys who helped a man in need. It's called "Silver Dollars in the Boots". It's easy to find through google or youtube.

Thank you!


The EEG testing was a little tricky because she was so restless, it required two people to hold her still, while placing the leads.

This head bandage looks worse than it is. It's just to hold the leads in place during the testing. The test takes an hour or two so they make sure it's secure.


  1. Progress is so wonderful...miracles are happening every. single. day! I am so glad she is getting better!

  2. So so so glad Alice is doing better!! Your children are so precious- thanks for sharing all the cute little stories and things they say. We love your family so much!

  3. I'm so very glad that Alice is still improving. And I'm glad that you have such wonderful neighbors! You guys have been through so much with both your girls. I have a friend who had breast cancer, then had a tumor in her head. She feels like her trials brought her family closer together and closer to the Savior. She says that it was worth every pain she went through, because it strengthened her kids' testimonies. You are such a strong family. I know you're going to make it through this and be all the better for it.

  4. Oh I just cried my whole way through this! The title made my heart leap! My heart was so heavy for you guys all day yesterday! You were in every thought and prayed for constantly! I am so grateful that the Lord heard our prayers!

    Your post made me think of something that happened with our Dawson. 3 days into his life they came to my hospital room and told me he wasn't going to make it. They told me that there was too much going on, and there was something growing in his bowels that would kill him eventually. They had been watching it on ultrasound and it continued to grow. They said they would come and get me when it was time and they would take him off the machines and I could hold him until he goes. We immediately prayed more fervently than we ever had. We pleaded for him to remain with us and for the strength to accept the Lords will. We called everyone we knew and they spread the word. There was a lot of fasting that day. We waited through the day and he remained stable enough to keep going. By the morning they told us that they would no longer need to do the ultrasounds. Whatever they had found had vanished without explanation! He immediately started doing better.

    But there is an explanation! Miracles still happen! They may not be able to explain exactly what took place to cause Alice's reaction, but we all know what took place to reverse it! What a blessing!

    Good job cute little Alice! We will continue to pray like crazy that her numbers will improve! That cute little stinker needs to go home! :)

    Thanks so much for posting this today! My faith is strengthened. I am sure others feel the same way!

  5. We are all so relieved! Lisy and Tyler, you are ever in our prayers and your kids as well.
    Alice, you are amazing! We love you and hope you keep getting better, Bunchkin.

  6. I'm so grateful to hear that she is doing better. You are such a tough cookie, little Alice!

  7. Lisy, I'm so glad things have improved over the past 48 hrs! I check your blog everyday. Abbey and Bennett always want to see pictures of Alice...and they pray for "Jesus to help her get better".

  8. We could not have had better news than this today! You will continue to be in our prayers, but hopefully we won't have to check the blog every hour :)

  9. My goodness you have been through a scare the last couple days! We are grateful to hear Alice is improving so quickly. I was grateful to read that Tyler and his dad gave her a blessing. The priesthood is an amazing gift! We will continue to pray for your girls and your family. You guys are such an amazing example to us all!

  10. Oh YAY!!! I've been thinking and praying for you guys for days. I'm so glad Alice is doing better. We'll keep praying that it continues and she gets her engraftment SOON!

  11. Lisy I just wanted you to know I have been thinking about you and praying for your hole family. You are so strong I do not know how you are doing it. Hope things continue to get better so you can have your hole family together again. Monica Jense