Six percent is not a statistic you want to hear from a doctor discussing your parent’s chances of survival, and Mark and Patti Weber have heard it not once, but twice.
This married couple of 23 years has each lost a loved one to pancreatic cancer and now they are determined to do something to increase awareness, fund medical research, and most importantly, raise the survival rate out of the single digits.
Mark, 48, and Patti, 47, both grew up in small towns in northern Wisconsin. They met through mutual friends and began dating while in college at the University of Wisconsin-Stevens Point.
Mark proposed during a picnic, using a message he’d inserted in a fortune cookie to pop the question, and the couple married in Patti’s hometown in the summer of 1990.
About eight years later, with a young daughter and a son on the way, they sought warmer weather and followed friends to the Charlotte area, eventually settling in the Providence Arbours neighborhood, where they currently live.
It was a nice day in September 2004 when Patti’s cell phone rang while she was walking on the greenway. Her father hadn’t been feeling well, had been losing weight, and had been seeing doctors to figure out why. He had just been diagnosed with pancreatic cancer. His doctors recommended chemotherapy and radiation, but through research Patti discovered that pancreatic tumors do not respond well to either.
“There’s only a 6 percent survival rate within the first five years, and most die within the first year. I knew that if we did what everyone else did, (my dad) wasn’t going to survive,” said Patti.
The family found a clinical trial at Stanford University testing a localized radiation technology called CyberKnife on pancreatic cancer patients. With his doctors’ support, he enrolled in the study, and preliminary results were positive.
Patti said by March 2005 the tumor had decreased in size, but the cancer had also begun to spread. It metastasized to his liver and his intestines were no longer functioning properly. After Memorial Day weekend, Patti took her children out of school and went back to Wisconsin to help care for her father.
“(My dad) knew he was biding his time,” Patti said. “When he decided to do the clinical trial, he wasn’t doing it for himself.” Jim Benson passed away a month later at age 76, only nine months after his diagnosis.
When the Weber family returned to Charlotte, Patti and Mark wanted to do something to support others in the pancreatic cancer community, but they couldn’t find a local organization to get involved with. They became more aware of their diet and exercise routines, but as time passed, they viewed Patti’s father’s illness as somewhat of a fluke.
Patti settled into a teaching position at Providence Spring Elementary, and Mark co-founded the Darton Group, an accounting and finance consulting firm.
In early 2012, another phone call changed their course. Mark’s mom was experiencing pain on her left side and told Mark a scan had revealed a shadow on either the kidneys or pancreas. Before the specialists weighed in, Mark and Patti felt sure it would be pancreatic cancer. The official diagnosis came in March.
“The way my mom handled the disease and the way Patti’s dad handled the disease were completely different,” said Mark. “It’s an individual choice, because there’s no cure. Mom put her focus on maintaining the best quality of life she could with the time she had remaining.”
Although Mark’s mother had been a registered nurse her entire working life, she did not have experience with pancreatic cancer. He and Patti had seen the route the disease would take, and were worried about the lack of support and resources that Mark’s parents had available in their small town in the mountains of northern Idaho.
“Mom went on living her life as if the death wasn’t going to happen, even though she knew the end was inevitable,” said Mark. The family visited his parents in May and again in July, and the change in her condition was shocking.
Mark returned immediately, working from his parents’ home while helping his father, managing hospice workers and supporting his mother emotionally as her health steadily declined. Shirley Merth Weber died at age 70 on Aug. 22, 2012, just five months after her diagnosis.
This time, the family returned to Charlotte resolved to actively seek a solution.
“In the eight years between Dad’s and Shirley’s diagnoses, there wasn’t any change in the available treatment options,” said Patti. “And there’s no screening process for it. Even though there is a hereditary link, there’s no way to tell if you have it until you have symptoms.”
The Weber family and many of their relatives participated in Charlotte’s first PurpleStride 5k fundraising event just a few weeks after Mark’s mother died.
This year their involvement has increased: Mark is a media co-chair, Patti is helping organize the children’s events, and daughter Alex, 15, and son Matthew, 13, are both recruiting participants and donors for PurpleStride 2013 on Sept. 7. Funds raised go to the Pancreatic Cancer Action Network, a national organization dedicated to doubling the pancreatic cancer survival rate by 2020.
“The death rates are so high in pancreatic cancer that there aren’t a lot of survivors to rally around the research,” added Mark. “We have to tell their stories for them.”