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, January 9, 2012

An Extra Middle of The Night Post

Well it's only 2:00 a.m. and it feels like it should be morning already. I have been rubbing Natalie's feet since I put Evie to bed. She just isn't feeling well. She said, "Mom, when you sit by me and rub my feet it makes me feel like I'm not sick anymore." I have attempted to go to sleep many times, but she will call for me to return to her bedside. It reminds me of when I was younger. Things were always better when my mom was by my side; even if it was just to hold my hair back while throwing up.

Natalie had just slipped back to sleep so I laid down for a minute, but of course felt like I should make this post. After all this is my journal and I don't want to forget any details. Someday this will all be behind us and I hope to always remember the ups and downs in detail. Maybe this way I can never forget to help others that may find difficult times, as I will always have this journal to remind me of this time we have received great help.

I asked her before going to bed if she would like to listen to some music to help calm her. She asked for primary songs. I found a lovely CD someone had given us of primary songs in a lullaby version. I went to turn it off and she said, "Mom, just put it on repeat so I can listen to it all night."

We are surrounded by many tender mercies. Thank you everyone for your prayers. They are truly helping. I know Heavenly Father has even addressed the little details. I have never had a baby sleep so well at night like sweet Evie does.

I better run she is calling for me to rub her feet. :)



  1. We love you all so much. I am sorry this is so hard!!! So glad she can find comfort in foot rubs and Primary songs, it gives us parents "something" to do that relieves some pain. Amazingly, as I look back today, and our situation wasn't as intense for so long, but similar in some ways, I am amazed at how the Lord sustained, lifted, and comforted us in the "midnight moments". I know He is doing the same for you all. It is okay to let ourselves feel and cry and take a few moments for ourselves, so I hope you get that too. One day at a time, one minute at a time, He carries us and holds us and loves us in just the right way, just like you do for your sweet girls. Lots of love for you all! Hope its a better day.

  2. This scripture made me think of you and your family.
    3 Nephi 4:1-3
    And it came to pass that i spake unto my brethren saying: Let us go up again unto Jerusalem (Primary Childrens), and let us be faithful in keeping the commandments of the Lord;for behold He is mightier than all the earth, than why not mightier than Laban (SCIDS) and his fifty, (chemo), yea, or even than his tens of thousands (mouth sores, hair loss, feeling terrible, etc.)
    Therefore let us go up; let us be strong like unto Moses; for he truly spake unto the waters of the Red Sea and they divided hither and thither, and our fathers came through out of captivity, on dry ground, and the armies of Pharoah (SCIDS) did follow and were drowned in the waters of the Red Sea.
    Now behold ye know that this is true; and ye also know that an angel hath spoken unto you ; wherefore can ye doubt? Let us go up; The Lord is able to deliver us, even as our fathers, and to destroy Laban (SCIDS), even as the Egyptians.

  3. Lisy,

    Your post made me think of Elder Oaks's talk in April General Conference. He says,

    "As mortal beings we have some basic physical needs. Desires to satisfy these needs compel our choices and determine our actions. Three examples will demonstrate how we sometimes override these desires with other desires that we consider more important.

    First, food. We have a basic need for food, but for a time that desire can be overridden by a stronger desire to fast.

    Second, shelter. As a 12-year-old boy I resisted a desire for shelter because of my greater desire to fulfill a Boy Scout requirement to spend a night in the woods. I was one of several boys who left comfortable tents and found a way to construct a shelter and make a primitive bed from the natural materials we could find.

    Third, sleep. Even this basic desire can be temporarily overridden by an even more important desire."

    I am amazed that your desire to comfort your dear child has overridden your basic desire for sleep. You are truly doing what the Savior would be if he were here. I'm sure His spirit dwells in the sacred halls of that hospital on a regular basis. Thank you for being such an amazing example of a truly selfless parent.

    Love, Mary Jane

  4. We never let any day end without our collective thoughts and prayers resting on Natalie and Alica plus the rest of you. Lisy and Tyler, you are inspirations to so many. You may someday learn the depth of your service when it may seem like others are doing the giving. thank you both.

  5. We are anxious to hear how Natalie is doing. We sure hope she will engraft soon. Natalie, I am a huge fan of foot rubs too! I am glad you like them. They seem to help everything!! I have been thinking of Alice beginning this process and how it will be a lot different with her. We pray she will handle things well. Good luck with everything. We are praying for all of you. - The Shumways :)

  6. Lisy, I wish I had some amazing words of comfort to share with you...but words seem so inadequate to really express the thoughts and feelings I've had for your family over the past weeks and months. Your blog posts give me perspective about what is most important in life, and help me to slow down and appreciate small moments with my children. Lots of love!!