Elliot and Aimee Cox, volunteers for the Pancreatic Cancer Action Network Charlotte Affiliate, honor their mother, Kay Cox, with a luminary at Sunday’s Purple Light National Vigil for Hope. Kelly Cox died from pancreatic cancer in Oct. 2010. (Courtesy of Terry Young)
by Morgan Smith
Elliot and Aimee Cox had no idea nearly three years ago they’d ever become advocates for pancreatic cancer victims. The idea wasn’t even on their radar.
But Sunday, Nov. 20, the two found themselves in Charlotte’s Freedom Park, holding up purple glow sticks and remembering Kay Cox and the thousands of others who lost their lives to the disease.
Doctors first diagnosed Kay Cox, Elliot’s mother, with diabetes in January 2009. She had a hard time adjusting to the demands of her condition.
“It’s funny because, at the time, she thought it was the worst thing in the world,” Elliot Cox recalled.
But Kay Cox, then a teacher at South Mecklenburg High School, was back in the hospital six months later, this time for digestive issues. After a number of tests and scans, doctors discovered a large mass on her pancreas.
Nothing could have prepared the family for what came next, Elliot Cox said, when doctors came back with news that the tumor was cancerous and Kay Cox’s prospects were not good. The diabetes diagnosis had been a symptom of the pancreatic cancer.
“We were hoping for the best, and that certainly wasn’t the news we really wanted,” Elliot Cox said.
From that point on, everything changed for the family. Kay Cox was forced to retire from teaching accounting and business at South Meck, where she’d been for 15 years. Instead, she spent her days undergoing treatments and an eventual pancreaticoduodenectomy, a surgery known as the whipple procedure, which doctors can perform on patients getting an early cancer diagnosis.
But complications arose even as doctors were performing the surgery. They realized the tumor was wrapped around a vein, which halted the procedure.
“They did that, really with no success,” Elliot Cox remembered. “After that, there was six weeks of recovery, then straight into chemo and radiation treatments.”
Kay Cox had good days and bad, but her family had an equally hard time watching their mom deteriorate.
“It’s a particularly cruel way to watch a loved one, literally just wither away…that’s kind of what happens,” her son said.
Kay Cox died in October 2010 at the age of 61, only 15 months after her diagnosis, though that’s double the time most pancreatic cancer patients get, according to Elliot and Aimee Cox, who now volunteer for the Pancreatic Action Network Charlotte affiliate.
The Pancreatic Cancer Action Network is a volunteer organization that promotes research for the disease, advocacy for a cure and patient support, said Aimee Cox, who serves as media coordinator for the organization’s Charlotte affiliate and one of the chapter’s five “core volunteers.”
The Charlotte affiliate organized about four years ago but in recent years has “taken some great strides as volunteers for progress in the fight against pancreatic cancer,” Aimee Cox said.
The Charlotte affiliate held the PurpleLight National Vigil for Hope at Freedom Park on Sunday, Nov. 20, while 54 other affiliates held similar vigils across the country, the network’s first national vigil. There, people held up purple glow sticks in honor of their loved ones who have fought the disease.
“Our whole idea is for the city of Charlotte and Freedom Park to glow purple, in memory or honor” of someone affected by the disease, Aimee Cox said.
Pancreatic cancer is the fourth leading cause of cancer death in the United States, following lung, colon and breast cancer. Yet the National Cancer Institute spends only 2 percent of its annual budget on pancreatic cancer research, the Coxes said. Only 6 percent of pancreatic cancer patients will survive more than five years after diagnosis, the lowest survival rate of all cancers tracked by both the American Cancer Society and the National Cancer Institute.
“It’s true right now that it’s kind of a death sentence, and I think a lot of people look at it that way,” Elliot Cox said. “Obviously, that is one of the things we are trying to change about it. Maybe it doesn’t have to be.”
With the recent death of Apple co-founder Steve Jobs to pancreatic cancer – and the first national PurpleLight Vigil, the Coxes’ believe the organization is gaining more momentum.
“We’ve got some traction now,” Aimee Cox said, “and research shows there is an upward trend in cases of pancreatic cancer. And while it primarily happens in older demographics, it is occurring across the board now.”
So the network is trying to act quickly. In North Carolina, U.S. Sen. Kay Hagan has agreed to co-sponsor the Pancreatic Cancer Research and Education Act, which asks the National Cancer Institute to spend more for research on any cancer that has less than a 50 percent, five-year survival rate, particularly pancreatic cancer. U.S. Sen. Richard Burr has not committed.
Since research shows the disease is hereditary, most of the volunteers have a lot at stake.
“Not only was Elliot’s mom diagnosed with cancer, but he also has a 10 percent more chance of being diagnosed because it has hereditary implications,” Aimee Cox said. “And our kids – we don’t have kids yet, but we will – and we just really want to improve the chances.”
