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 30, 2012

Day 13 for Alice

The picture above is Alice not willing to part with Grandmother's iPad, she is asleep, but when Grandpa tried to slip it away she protested.

Busy day, Natalie had a clinic appointment. Her labs were awesome. She has managed to maintain good counts. Some of her medications were adjusted a little. She isn't scheduled to come back for a week. That was great news for her. She was a bit happier about coming to the hospital today. She really enjoyed seeing Alice.
Little Alice had another hard day. She received blood today, which seemed to bother her a little more than normal. With each transfusion brings different responses--it's interesting.
The waiting phase for her body to engraft and produce it's own cells is challenging. She is miserable.
After taking Natalie to the clinic, we came to Alice's room again. She patted the bed next to her for me to sit. I knew I wasn't going home, nor did I want to. I had previously arranged for my Aunt who lives near by to keep Evie for the night so I could spend some time with Alice. I guided Tyler by way of Skype as he did all Natalie's meds and infusions at home, he has done it many times before and already knew what to do, he is awesome.
Every time I tried to leave the room to run laundry or use the restroom Alice would cry and ask me to come back and sit next to her on the bed. I decided to do nothing but sit with her, the nurses washed the laundry. She even pulled her feet from out of the blanket and pointed at them for me to rub them. She has grown to love foot rubs as well. She is quite swollen still, as she has retained a lot of fluid. She is taking a larger dose of medicine to help push the excess fluid through. Her breathing is still loud, but her oxygen levels are doing alright and her lungs sound good.
She is seven days from when Natalie engrafted. We hope she will be able to engraft as quickly as Natalie did. Between now and then she may experience engraftment syndrome, which can cause fevers. All we can do is count down the days...each day that goes by is one day closer to feeling better. The days are long sometimes. I'm certain even longer for Alice.
She did have a moment today in which she felt alright. During that window. The Sundwalls came to visit. Good timing! They sang to her and it was lovely and beautiful. Michelle sang our favorite song "Edelweiss". I know she enjoyed their visit because she wanted to be silly, that was a nice change of pace for the day.
Shortly afterward she crashed and needed her barf bucket again. I will have memories of Natalie and Alice hovering over these pink buckets for the rest of my life.
I have been wanting to get pictures of all the nurses so the girls might remember them. The nurses here are awesome. We really appreciate them. Natalie is sitting next to Emily, she has been our nurse many times, she is wonderful--as well as all our nurses.



  1. I have never met you or your family. I just have to tell you how blessed your children are to have such loving parents. I cant begin to imagine whats its been like for your family. As a mother of three beautiful children. I want to say thank you for your example of sacrifice and love you show for your children. The power of prayer is truely amazing. I keep your beautiful family in my prayers daily. Sweet little Alice is a trooper. Here is to a full and quick recovery for your sweet girls. God bless

  2. I'm just a stranger brought to your blog via Dan Pearce's blog. However, I am very moved and touched by your story - your whole family, especially Natalie and Alice, are very strong and beautiful. The girls (and parents!) are so lucky to have such a supportive family who care for them and love them as you do. I'm praying for you and hope everything goes well.

    Also, I am wondering if anyone has nominated Alice and Natalie for the Make a Wish program (or similar). These girls are truly deserving of having their biggest wishes made true, even if it doesn't happen until they are out of quarantine. If nobody has applied, please consider it. A few cousins of mine had medical conditions as children and had wishes granted by similar organisations - they do a wonderful job and make a truly magical moment for the whole family.

  3. It must be so hard for you guys to have your kids spread out in different places. You have to want to be with all of them at the same time. I'm praying that day will come soon and that Alice will engraft as quickly as our Natalie. Best wishes!