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.

Thursday, December 1, 2011

Email From Lisy

December 1, 2011

We made it through the week…it was truly long and exhausting. Somewhere along the way we added Alice onto the schedule, which made this week even busier. She will finish with her remaining tests next week. Alice’s donor is anxious to speed up the process. I don’t blame her; maybe she is hoping to donate before Christmas. We are so thankful for this sweet person who is giving life to Alice. We look forward to the day when we can communicate and possibly meet this person.

Among the many tests that were done this week, Natalie’s x-ray was somewhat concerning. There is an area in her lung which has posed a problem many times in the past that will require a CT scan. The question is if this area in her lung is a fungus, requiring treatment, or scar tissue from so many past lung infections. We cannot proceed until the doctors are clear on what it is. If there is a fungus and we proceed with the chemo therapy, she will not have any ability to fight the fungus and could be over taken by this fungus. Hopefully the CT scan on Monday will provide sufficient information, if not; they will need to take a biopsy of this portion of her lung. In the meantime we are continuing with the pre testing for Alice. There is a chance that Alice may begin the process first. Truly each day our situation changes and will continue to do so. We are so glad that the doctors are taking every precaution necessary. As far as getting things organized and ready at home…it’s coming along, thanks to all the help. We have learned a lot about what to expect after transplant regarding the girl’s diet and prevention of bacteria and illness. Here’s the condensed version. No raw foods at all (everything cooked), no deli foods, no meals brought in from outside, no fast food, no restaurant food, no food that is difficult to was because of texture, no leftovers, no reheating food, when we open a bag of anything, they can have the first serving and no more, dishwasher sanitize cycle only and the hand washed dishes have to air dry. Well this is just some of the things…the list is actually quite lengthy. It will be an adjustment changing silly little habits that we don’t even realize we have. When we first told Natalie a bit more detail about what to expect during this hospital stay she wasn’t happy, especially when we told her about losing her hair. She immediately burst into tears, and was upset. She said, “I don’t want to be bald” and then hid behind the door for some time. We continued to talk to her, it was a lengthy discussion; however, she began to feel better, then a few moments later said, “but I don’t want them to pull it out…it will hurt.” We told her it would fall out by itself, and maybe we could even save a braid of her hair before it falls out. A few days following this, Grandpa Fish was taking the boys to get their hair cut and she said, “I don’t need my hair cut”, then she began to giggle like she was so clever and funny. She seems to be more accepting of this fact. The other day her Primary teacher Sister Seamons knitted her a darling brown hat with long braids attached to it. You have to see how cute it is to know how I felt when each of the kids put it on and danced around laughing, including the boys.....another sweet moment of comic relief for Natalie. My eyes began to swell when I watched how sweet this was. We are so thankful to many wonderful people for all the big and little things that have made this journey that much easier. Thank You, Thank You to all!!!! More updates next week. Hope its okay with you all that I am adding more details and description to my posts/updates as this is also my journal.

Lisy and Tyler

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