When the doctor calls you and says, "I need to speak to you as soon as possible," you know the news can't be good. I was diagnosed with a rare and aggressive form of leukemia, bastic plasmacytoid dendritic cell neoplasm (BPDCN). Most doctors have never even heard of it.
I wouldn’t be here today if it wasn’t for my wife’s friend who suggested calling The Leukemia & Lymphoma Society (LLS). An LLS Information Specialist listened attentively with compassion to our troubles and requests and put me in contact with one of their nurses who served as my personal case manager. She quickly researched the disease and found groundbreaking treatments, even if it meant spending hours on the phone to review all my options.
LLS was able to connect me with the right doctors and hospitals, where I was struggling to even find doctors with any knowledge of this disease. They made it possible for me to receive treatment with a leading researcher, Dr. Andrew Lane at Dana Farber Institute who is currently working to establish a BPDCN clinic.