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.

Sunday, February 26, 2012

Day Plus 40

Thank you again to all who were a part of last night's event. We have heard from so many about how wonderful and amazing it was. Words cannot express our gratitude. What a special day it was for us. THANK YOU!!

Tyler and I were trading places last night so we brought the other children in to visit with Alice for a moment. She laughed more in that short time than she has in a very long time. It was so cute to see her so happy to be with her brothers and sisters. She was sad to see them leave, but it was okay because Mom was staying.

Honestly, I am amazed at how many times Alice has smiled at me in the past two days. It's there, it's in her eyes...she is happy and I think she is feeling like things are beginning to wrap up. I feel like I can't hug her enough. I love being in her presence, it is a very peaceful and lovely feeling.

I know as time passes and our journey through this time comes to a close we will miss many things about it. Everything we use and look at have memories of someone or something that helped us through. For example, I will never be able to drink a Kerns nectar drink again without thinking of my sweet Aunt and Uncle who have faithfully kept our little food supply here at the hospital stocked. We will never forget the help and love that we have received. I know we have a long road still, but at least it will be filled with constant reminders of many who have shared their love with us.

Tyler and I felt like our buckets were empty when we started this journey last September, but they are overflowing now with strength and courage. Truly, it's hard to express how we feel through words.

Alice is doing good, more of her medications have been switched to oral. Her little stomach is trying to adjust. Sometimes it's too much, but she will get there. She has developed a skin rash, which is common and could be related to the cyclosporine she is receiving. There is a possibility it is a sign of graft vs. host disease. This would be the acute form and shouldn't be much of an issue. Hopefully if it is GVHD it will be temporary and should resolve. The fact that she received unrelated marrow, GVHD is a possibility.

Her blood pressure has been slightly elevated, so they increased her blood pressure medicine. This is also normal...just needs to be closely watched. And her ANC was 1700 today. Staying high!!! We are so happy!


  1. What great news! I'm glad that you both feel buoyed up by love and support. Those of us back home are strengthened by your courage and the courage of Natalie and Alice. I'm so happy that Alice got to see her siblings. I hope she comes home to them really soon!

  2. So glad to hear there was good news over the weekend with her ANC!

  3. I just found your blog. Your family is adorable! I don't want to sound like I have any idea what your family is going through, because I don't. As I read a little bit about your children and that their immune systems are not functioning normally, I have to ask if you have tried them on a good probiotic? Not that it will fix their problem but it will help introduce the much needed good bacteria into their guts. It might help their tummy's feel a little better in the mist of their treatments. The problem with our guts is that we don't have enough good bacteria to fight the bad. Yogurt is great (plain, no flavors or additives), milk kefir, any fermented foods... I know that is no fix, but it won't hurt. My heart and prayers are for your family. I look forward to continue reading your blog. God Bless You!


  4. Lisy and Tyler-
    I just wanted to let you guys know how awesome it was Saturday night! It truly was an amazing evening! I started to cry right when I walked in the room and saw everything that had been done and remained emotional throughout the night. I too would love to thank the people who put it all together. It was so well organized! The food was amazing, the music and program were perfect, and there were so many wonderful things to buy in every price range allowing all to participate no matter what their financial situation was. The highlight for me was when Natalie’s painting sold. That was so exciting! The whole thing was just so... right. You really could feel the love everyone had for all of you. It was so thick in that room, you could have cut it with a knife. When we got home I searched the printed program that we received for a list of names of those who put this all together. They are clearly amazingly talented people...who are they? I read the beautiful thank you pages from you guys (more tears), I saw the list of businesses who donated items (so cool of them)...but where was the traditional list crediting the people behind it all- the volunteers who had put in so much time, and talent? I was humbled to see that clearly, they didn’t want the attention or glory; they were doing this purely out of love. I have been so touched by this event. So whoever you are... thank you! Not just for what you did for the Fishes, but for what you did for the rest of us. You have allowed us to be a small part of a beautiful experience that we will never forget.
    Love- The Strongs