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, March 24, 2012

Improvment comes over time

As of yesterday (Friday) we have been home together for three weeks. When I think back to the beginning of Natalie's Bone Marrow journey about 5 months ago, it seems so far away. I can't believe we have come this far. Often I will try to measure the girls' progress each day, however, on a daily basis sometimes I wonder if they are in fact actually progressing. I decided to compare today with the first week Alice came home. Huge improvements just in the past three weeks. It's amazing the changes that have happened in the last several weeks. It's almost hard for me to remember the miserable times we endured, because there is very little evidence of pain when I see both Natalie and Alice thriving today.

Last night I had the opportunity to speak at a dinner held at the hospital. It was sweet to be there. I will always have a huge place in my heart for Primary Children's Hospital. Of course we have had very trying times there, but for some reason when I walk those halls I feel this amazing overall sense of peace and gratitude. I think I can say from experience that angels walk there. If I were an angel you would find me at a children's hospital too.

During my speech I mentioned that Tyler and I have been through some very hard trials with our girls. I also mentioned that having two girls undergo bone marrow transplant within 4 weeks of each other has not been the hardest thing we have done. What I mean is, the support, and prayers that have been poured upon our family have carried us. Sometimes I wondered if my feet were actually touching the ground. I know that strength comes in numbers. We are so thankful for the prayers being offered...the power of prayer in my mind is ever so tangible. It's easy to look upward when you have so many cheering you on. I know that the girls feel the same way.

Natalie wrote a note for her friend Sara whom she had met during transplant. Sara is on her third round of Chemo battling leukemia; I was to deliver the note to her room. I have been so touched by the strength and courage Sara has shown to Natalie. Sara rides her scooter around the unit waving to other patients through their windows...again, another memory that will be with me forever. Right now Sara may not be feeling well enough to ride her scooter, but I know she will soon.

As I was leaving the hospital that evening I felt strange to be there alone without one of our girls, but I had a moment to look at the building from another perspective and wonder what might be occurring in each patient's room. I also watched the life flight helicopter carrying a little body, land on the roof. I paused before driving away and offered a little prayer in my heart for that little person, and the many other little people behind each patient window. I know prayer is real and powerful, I sensed in my heart that my prayer was embraced.

Often I feel like a tiny little speck on this giant planet, but when I imagine looking at the earth from a point in space I can see things enlarged and they become more clearer. I understand that what matters most is not the destination, but the journey. Because the destination can only be determined by the journey.

Thank you to all our loving family and friends, and the many people we have not met. :)



  1. Lisy, you and Tyler are amazing! I am inspired every time I read your blog. Thank you for giving me a different perspective of things. I am so grateful your girls are doing so well. We continue to pray for your little family. We love the pictures and videos you post. The kids ask to watch them over and over. Have a great week!! We can't wait to be able to see you!!

  2. My name is Emily. I met the girls' aunt at a home expo this weekend. My little girl also had a bone marrow transplant due to a genetic disorder. She was 9 months old when she had the first one and a year later she had a second one. She is doing so wonderful right now. She is three. Yesterday she dug in the dirt, played with lots of other kids, and rolled in the grass with a dog. While most of the past three years is almost a blur now, I can say that it does get better.

    As we spoke with your girls' aunt, my daughter listened in. When she heard your girls' were at Primary Children's, she said, "Oh, Clinic! Brenda and Hillary, they are my best friends!" The nurses and doctors up there almost become a second family, and it's wierd now that we have been transfered away from the bone marrow team to oncology.

    I'm glad you've kept a blog. We did the same, and like I said, at this point it's almost hard to remember everything that happened. I think being that stressed and sleep-deprived affects your memory. It's hard now to look at those pictures but the record is invaluable. Should my daughter, by any miracle, be able to have biologic children, I think being able to look back at what a transplant means from a parent's perspective will help her as she makes decisions about genetic testing, etc.

    God bless you and your little girls. My little girl prays for the children at "clinic." And I too know that angels walk those halls.

  3. Watched this video and shared and can barely type as my eyes are full of tears. I had no idea this illness still existed. What brave little girls and your family is awesome! Your son is an angel for sure. I am going to include all of you in my prayers. Although I have problems, they seem so unimportant now and I do hope after others watch this we all count our blessings! Wow...I am speechless! xoxo