Damon Runyon staff interviewed John Parker, MD, about his daughter Nicole’s cancer journey and the role Damon Runyon scientists played in treating her disease
Nicole Parker’s cancer symptoms began when she was 18 years old during a family ski vacation in Utah, when she complained to her father John, an obstetrician-gynecologist, about excruciating headaches. When the headaches persisted upon returning home to Florida, John took Nicole to a local hospital and had her fully examined. The attending physician ordered a CT scan and MRI.
“One of my ER colleagues told me, ‘I’m really sorry, but your daughter has a brain tumor.’ I knew at that moment that it was going to change our lives completely,” said John. John spent many hours researching Nicole’s condition, which was diagnosed as a rare cancer type called inflammatory myofibroblastic sarcoma. In her case, the cancer contained a specific gene rearrangement in anaplastic lymphoma kinase-1 (ALK-1). “It was around this time that we reached out to and met Damon Runyon alumni, Drs. Christine Lovly and Alice Shaw,” explained John. Drs. Lovly and Shaw had extensive experience understanding ALK-driven cancers, and have become close and trusted advisors to Nicole’s family throughout her cancer treatment.
Fortunately, since 2013, the FDA has approved several new drugs that specifically block the activity of ALK. After a series of treatments with three types of ALK inhibitors and several additional surgeries, Nicole (now 20 years old) is currently stable and plans to return to the University of Florida. “I feel so blessed that Nicole has been able to avail herself of these new treatments. Just a few years ago, her condition would have very quickly been a terminal illness and we would have lost her,” said John.
Her family is eager to share Nicole’s story. “Putting a face on cancer is an important thing to do; it just personalizes the journey,” said John. “She’s really a beautiful, dynamic young lady. We so appreciate the opportunity Damon Runyon has given us to tell her story and help other young people.”
John also hopes Nicole’s story will inspire cancer researchers. “I think it’s good for young researchers to see the successes like her. When you see a young woman who is benefitting so much from all [of the cancer research] that’s been accomplished, and the happiness achieved from the life and hope that she’s been given, that should give everyone involved in research the feeling that they are really doing a very valuable service.”
John is also collaborating with Nicole’s oncologists to prepare an individual case report describing Nicole’s treatment with multiple ALK inhibitors, with the hope that sharing her experience will inform and improve the treatment of future patients.
