This mornings chemo treatment went well, and we learned a lot. We also agreed to join another study group about childhood cancer. I like to hope that answering as many questions and being as transparent as possible with researchers will help find other children who may be at risk, or ultimately change future testing milestones for children in different risk groups. Because Amira has Down Syndrome (Trisomy 21), she was always at higher risk for having certain cancers, but we also know that based on research (and studies), that children who have her condition may respond better to chemotherapy should they get cancer. Because people before us agreed to participate in studies, there are already recommendations for ages to screen and test for certain things. This is why Amira was screened for Atlantoaxial Instability (screened positive for mild AAI, which is why we already made one of several trips to the Bay Area to UCSF last month) and Leukemia so close together (they were both screened-for at her third birthday in July). As a parent, sometimes it can be difficult to ask providers to perform unnecessary tests, so its really nice to have data-based recommendations for testing children for particular disorders that they may be likely to have. One thing I learned was that when Amira was born, just like every other infant born in a hospital in California, a drop of blood was stored on a card, and her DNA was stored. It can now be located and checked for comparison between then and now to see whether Leukemia was already in motion when she was born (she was born with Thrombocytopenia, but we both had it and it was assumed to have resolved), or whether it developed later in her system due to environmental, dietary or other unknown reason. As a mother who likes to know things and cant stay away from Google, learning the results of the study will be something Im really interested in. I realize we may never know the exact why Amira has Leukemia, but any time we have the opportunity to participate in a study for anything that might make the future easier for someone else, Im all for it. We also learned that I forgot to pack the Cheerios, but she was really cute dressed up and sparkling as Minnie while patiently starving through her chemo.
Posted on: Fri, 12 Sep 2014 21:27:02 +0000
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