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.

Wednesday, October 19, 2011

Email from Lisy to Family and Friends on Oct. 19, 2011

October 19, 2011

Hi Family,
Hope everyone is well and happy. As some of you may know we met with the bone marrow transplant team and did some more tests on the entire family. Just to keep everyone posted here is the nut shell update. Natalie and Alice have a condition called "Leaky SCID" (severe combined immune deficiency). The literature says that 1 in 40,000 people are carriers of this gene, and a child can only be affected by this gene mutation if both parents carry the gene; which is a 25% chance that a child from two carrier parents will be affected. There are only two cases in the entire U.S. that are reported each year. Basically we have filled the statistics for the year. The treatment is a bone marrow transplant. We discussed only Alice with the bone marrow team. At this point we are considering transplanting Alice. We are not discussing Natalie at this moment in time. However, they do have the same gene sequence mutations. The transplant process will be such. They will first look for a Donor within her siblings. We know already Matthew isn't a match, so we are left with Blair and Evie. If Blair is a match we will begin the process soon, if Evie is a match then we will wait until she is a bit bigger...approx. 6 mos. Old, which would bring us into Feb/March when we begin. If neither of the two is a match then they will look at the bone marrow registry for a match. This process takes a bit of time depending on how difficult Alice will be to match. If there isn't a match on the registry list, then they will begin to look for a match from cord blood. Many of you have asked about being potential Donor's. The doctor said that the likely hood of a family member being a match is rarer than a stranger from the list. So he said to encourage those who want to donate to donate blood, because throughout the process they will need plenty of blood transfusions. Alice will go through many tests before the process starts, for example....liver, heart, lungs, kidneys, brain, even dental tests and exams will be done to ensure a safe baseline. Then she will be admitted to the hospital and go through eight solid days of chemo therapy, losing her hair, etc. Once her entire body has been stripped of its marrow and blood, they will then give her the new marrow. It will take about 3 to 4 weeks for her to adjust and begin to produce new cells. She will be in the hospital for approx. two months during this process if all goes smoothly. Once her blood counts come up she will be able to go home under strict regulations. She will be fragile and need to return for frequent testing for at least the first 100 days post transplant. Past that point she will be less fragile but will still require close watching. If she develops Graft vs. Host disease then the entire process is slowed down and complicated. At severe levels of Graft vs. Host she will need another transplant or even worse it could be fatal. A sign of Graft vs. Host disease usually occurs within a few weeks post transplant, if it occurs. Graft vs. Host means that her body is rejecting the new marrow and does not want to accept it as her own. A perfect sibling match will reduce the chances of Graft vs. Host disease. The success rate is 90%.....fatality rate is 1 in 10. Long term side effects of transplant are infertility and possible chronic Graft vs. Host disease. When Tyler and I came home we were extremely overwhelmed and exhausted. Mom, thank you for coming with today and helping us.

Okay, so this wasn't the "nut shell" version I guess....but after a three hour consultation it truly is condensed. If you are interested in knowing more or have questions, just call Tyler or I. We have a lot to think about and consider. As we obtain more information throughout the process we hope to make the right decision. We should know in two weeks if we have a sibling match. Thank you everyone for all your support. We love you!

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