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, January 31, 2012

Day 14-- Alice, Day 41--Natalie

Alice was restless last night, and called for me throughout the night. She has vomited a lot today. She continues to spit up blood, she received platelets again today. Her potassium and magnesium levels are low, she will be supplemented. Her blood pressure is high, she will begin talking BP medicine. The anti rejection medicine makes the blood pressure go up.

Good news, yesterday she showed traces of white cells, and today they doubled. This is great news, she should begin to start the healing process by the end of this week. Hopefully, beginning next week she may engraft. I was so glad and content to be with her.

I changed her dressing today, when I finished she looked up and said, "thank you Mom", I just love that little one. She wanted to take her own vitals, so the nurse let her put the thermometer under her arm. She waited for it to beep then tried to read if she knew how. It was so cute. She is so shaky and could hardly hold it still so we could see what it said before it cleared. When she stands to bowl, her little legs clatter together. I know she is very weak, but the medications also make her shake.

Because her platelets are low she busies easily in the strangest places. Also she has little red dots all over her skin called petechiae. Natalie had this as well due to low platelets.

When it was time for me to return home she had both her Grandpa's there with her. She seemed quite happy. She had two Grandpa's according to Alice.

Natalie is still doing well. She had vomited some and felt sick most of the day, but that didn't get in the way of playing. Her appetite is still returning.

After I came home Tyler said to me, "I know why I do the hospital shifts--It's a lot easier than being home." It's true...there are no nurses at home, no cafeteria to order meals from, no cleaning ladies to clean the room and wash the linens. I looked at him and said, "it could have been busier had I left Evie." He smiled and said, "I'm glad you didn't."

I think he did a fine job at home and when he is at the hospital I know all is well there.



  1. We are glad that there is light at the end of the tunnel for you guys. We are also very familiar with the Dad taking the hospital shift. We usually have me stay at the hospital and Jess stays at home. During one of Sarah's previous hospital stays, we swapped for a day and we were both texting each other constantly so we could keep the same routine for the kids. We are praying for you guys.

  2. You and Tyler are both doing awesome. I can't imagine what Nate would do if I left him alone with my three, perfectly healthy kids. And when it's all over, it sounds like the kiddos are going to have a couple of brand-new cousins to meet, so that's good news!