Some days, the thought will run through J.D. Derderian’s mind while at his office: “What am I doing here? I should be on a dock with my son and a fishing pole because how many 72-degree days do we have left together?”
Derderian’s son Clay was diagnosed with a rare pediatric brain cancer called juvenile pilocytic astrocytoma in 2009, when he was 3 years old. A former staff director for the House Energy and Commerce Committee, Derderian had just hired three people to help expand his small consulting firm. His son’s diagnosis wasn’t in the business plan.
When a family member is diagnosed with cancer, the repercussions are widely felt, not only at home but also in the workplace. At the onset of Clay’s disease, Derderian would sometimes go dark for 72 hours. He and his wife, Mary Bannon, were in crisis mode. There were surgeries, days in intensive care, conversations with doctors and family, decisions to be made, more consultations, more procedures, more unknowns. It required time away from the office and attention diverted from work.
“The trajectory of the business changed. The company immediately went into maintenance mode. I consider that a success,” Derderian says. “My teammates could have easily said: ‘This is not what I signed up for. You brought me on with this vision of growth, bonuses and new clients, and I’m spending time just trying to keep the ship afloat.’ But no one bailed.”
Caregivers may struggle to figure out when and what to tell co-workers and employers. Anxiety about their loved one’s diagnosis is coupled with concerns about continuing to do their own job.
About 10,000 children were diagnosed with cancer in the United States this year. Their parents join at least 2.8 million other Americans who are providing care to an adult family member or friend because of a primary diagnosis of cancer, according to a June 2016 report from the National Alliance for Caregiving.
Unpaid cancer caregivers spend an average of 33 hours per week helping their loved ones, so its not surprising that 63 percent of them report having to make a workplace accommodation — coming in late, leaving early, taking time off or cutting back hours.
Employers are noticing the toll cancer can take on an employee. “If you aggregate all the costs of the various types of cancer, it is generally in the top three [health-care-related expenses] for most U.S. employers. At Pitney Bowes, it is number one,” says the company’s director of health-care planning, Mary Bradley.
The Stamford, Conn.-based company, which employs 15,000 people around the world, uses Managing Cancer at Work, an online resource developed at Johns Hopkins University, to assist both employers and employees. For caregivers, there is information about family medical leave and how to prioritize which appointments they should attend.
But the National Alliance for Caregiving reports that a quarter of cancer caregivers who are also in the workforce are, like Derderian, self-employed. They don’t have human resources departments or counselors on call. “The incredible blessing was that I happened to have my own company. It also was the biggest curse. When you’re the business owner, there’s no fallback,” he says.
As Clay went through chemotherapy, a schedule emerged. But the treatments were unsuccessful and Derderian began another effort on behalf of his son.
He scoured the Internet for experimental therapies, talked with other parents online and used his political ties to advocate for the medical progress that might help his son. The family found a clinical trial of an experimental drug, but when they couldn’t get the oncologist leading the study on the phone, Derderian flew to Toronto to catch her in a hotel lobby where an oncology conference was underway. Clay got into the trial but had to leave it when a hemorrhage ruptured his optic nerve.
He then entered a trial of a drug that soon stabilized the disease. Bannon, who developed breast cancer a year and a half after Clay’s diagnosis, regained her strength and command after chemotherapy and radiation. But this was the toughest point for Derderian: “What, no crisis? How do I organize my day? There is such incredible clarity in crisis mode.”
Derderian slowly expanded his company’s portfolio to include lobbying for clients with interests in health care, including a patient group focused on his son’s cell type. In August, he incorporated the Imagine an Answer to Kids Brain Cancer foundation to raise money for research on juvenile pilocytic astrocytoma.
Clay has stabilized, but there are weeks like a recent one that entailed two scans and a clinic visit on three separate days, and there are setbacks, including an episode of dramatic tumor growth. “The course of his disease is long. It’s a torturous decline,” Derderian says.
“But there are also days when it is so valuable to be at work, beyond paying the bills,” he says. “It’s not an escape. I get to recharge my batteries by working on something else.”