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.

Tuesday, April 24, 2012

Feeling Better

Natalie is feeling much better already. We are so glad she is here, had we not come in it could have been very bad. The bacteria she developed is something that most people just have on their skin and isn't washed off in the shower or bath. The doctors suggested that the bacteria just found it's way into her body, possibly from her central line. They also said it is more amazing that she has not had this sooner, than it is that she has it at all. This hospital stay feels like a walk in the park, no biggie. A couple days is just a little wrinkle in our way. We learned today that Alice's chimerism test came back and now shows 95% donor cells. She is getting closer to the goal of 100% donor. Both Natalie and Alice's neutrophil antibodies no longer appear in their blood. This is also great news. Another test will be taken regarding Natalie's Tcell's. The past test showed more host Tcells than they anticipated, however, they feel it wasn't accurate. More results next week. Tomorrow is day 99 for Alice. Some how the past four weeks have passed in a hurry. Much still ahead, but so much already accomplished and behind us. Natalie and I had some fun together today. We talked about her past stay during transplant, reminised on some fun memories, we would stay up super late watching cool videos on Youtube and read story books. Sometimes it would be 2:00 a.m. and we had more to do. It was a little tricky trying to adjust to an earlier bedtime when she first came home. Tyler will be staying with her tonight. Here is Alice in clinic taking her medicine, watching a movie and playing with a doll house.

1 comment:

  1. Man, Lisy...I am so sorry, whenever I think I have had a rough day as a mom, I sit down and read your blog and wonder "How you do it?" What awesome parents you and Tyler are. I just want you to know you are constantly in our thoughts and prayers.