When Jean Heika's daughter Shannon was in college in 2013, she got sick. After extensive testing, they learned she had an aggressive, rare leukemia - blastic plasmacytoid dendritic cell neoplasm (BPDCN).
Jean learned a lot over about being a caregiver over the course of Shannon's journey, including how to interact with doctors. As the primary caregiver, you need to be the patient's chief advocate, even if that means pushing back when necessary. Find a doctor that's not afraid to consult with colleagues, one that will go to bat for you as Dr. Ken Holland at Northside in Atlanta did for us.
Jean packed up and moved back across the country to care for her daughter through transplant, and the awful GVHD that followed. There were times when Shannon really suffered, and the doctors' prognosis wasn't good. There were points when even they didn't think Shannon would make it.
But Shannon fought, and so did Jean. She fought every step of the way to make sure they had the best information and best care. She reminds our listeners to accept help when offered, and gives us a fantastic tip about doors in doctors' offices.
The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.
For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.
This season of Marrow Masters is sponsored by the nbmtLINK, Incyte Corporation and The Leukemia & Lymphoma Society.
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The Leukemia & Lymphoma Society: https://www.lls.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
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