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, October 15, 2013

An Early Morning

Our day started very early this morning as I was required to wake Natalie up at 4am in preparation for her EEG. Waking her up was to ensure that by 8am she would be able to more easily fall back to sleep for her test. For me, waking up wasn't so bad as it was getting the rest of the kids ready for the day before we left. So much to get done with a family before you get out the door. On the way up to the hospital I had one hand on the wheel and the other on Natalie to wake her up as she would innocently dose off every five minutes. When we arrived at the hospital we went up to Alice's room so Lisy and could switch places.
I spent the day with Alice as Thiotepa and Melphalan made its way though her tubes and into her chest for the last time. The chemo is really aggressive and requires us to bath Alice three times a day. The baths are necessary as the Thiotepa secretes out of her skin and can leave burns. We are also required to change her bedding the same amount of times. It really is a pain, we can only hope to stay ahead of it so that she doesn't get the rashes and burns. So far from what I can tell the only signs of the Thiotepa treatments I can see are her rosy red cheeks. We played games and solved puzzles today until she felt too sick to do so. I found it interesting that although she felt sick a couple times today it only lasted for a little while until she felt better again and we were having a foot race from one end of the room to the other. She loves to run, when she can. Tomorrow will be a rest day for Alice and I'm really happy for her.

Natalie going down for an EEG nap
Alice starting to feel the effects of her chemo
Posted by at 11:48 AM

2 comments:

  1. RachelOctober 16, 2013 at 11:38 AM

    Thinking of you guys today. I hope the transplant goes well and that Alice feels better soon.

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  2. KelleyOctober 16, 2013 at 10:42 PM

    Just got caught up from last week's posts to this most recent one. I'm relieved to know that the side effects of the new chemo have been manageable. We we have been keeping you all in our prayers & are always standing by ready to help how & where we can. We love you all.

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