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.

Friday, November 4, 2011

Email from Lisy

Nov. 4, 2011

Hello again,
Today Natalie and Alice went in for some routine antibody treatments. Natalie did well with the treatment. She struggled with the IV placement. It took four different pokes to finally get it. She was such a trooper. Alice on the other hand had a reaction to the treatment and became quite ill instantly. She will be spending the night to keep a close watch on her and to try again in the morning with a new dose of the drug (treatment). She also had to be poked a few times for labs, etc. We didn't have the luxury of using her PICC line for the labs because they needed it from another source. I had Natalie, Blair, Alice, and Evie with me the entire began to get long. Although, with that said, Evie fussed very little and Blair was extremely patient. This was a blessing for me. Tyler came around 5:00 to stay the night with Alice so I could take the rest of the children home. Yesterday I spoke with Bone Marrow and they did say that they have located a couple of promising matches for Alice. They of course need to do further testing on the found matches, etc. This takes a bit of time. I however, would not be surprised if Natalie and Alice both end up going through the transplant process together. I'm very thankful to the people on the bone marrow registry list. I was so impressed to hear of the millions of people who are on this list. They even have to pay their own fees to be on the list and receive the initial testing. Again, thank you everyone for all your help and prayers.


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