Supportive, Expert Care For a Rare Bone Cancer
September 20, 2020
Darby Harris, an active mother of two, was adrift after her father – the anchor of their family - died of cancer. At her father’s memorial service late last June, the Hudson woman was harboring a secret: She was scheduled to start her own cancer treatment the next morning.
This is the story of how cancer can strike when you least expect it, for even a former marathoner and lifelong runner who was logging several miles a day right up until diagnosis. About how you can find allies in your fight when you most need it, ones worth driving a little farther for than a closer hospital down the street. And how a community of caregivers can surround you with compassion even in the era of COVID-19, when actual hugs are not possible.
Losing an Anchor
In the spring of 2019, when her father was facing the late stages of soft tissue sarcoma, Darby began experiencing back pain. Muscle knots, she assumed, and figured she needed to stretch more before running. Her father died on Mother’s Day after a two-year battle that tore at the heart of her close-knit family. Her husband, Todd, sent Darby for a massage to ease her stress.
“It was an enormous loss for our family and a very stressful time, so I assumed that my pain was simply due to the tension and stress I was feeling,” Darby recalls. “He was the anchor of our family.”
The massage therapist could not palpate the immovable, quarter-sized bump on her back and urged her to see a clinician immediately. The diagnosis stunned Darby, already reeling from the loss of her father: Ewing sarcoma, an extremely rare bone cancer. Sarcomas represent only 1 percent of adult cancers, and Ewing sarcoma is typically diagnosed in children rather than adults.
The morning after her father’s memorial service, she checked in to University Hospitals Seidman Cancer Center. The warm and welcoming team on the fourth floor began a regimen of six chemotherapy treatments of three weeks each, which went on for months before surgery that autumn to remove the 6 millimeter tumor on her rib, near her spine. Her husband brought flowers to each treatment, and they thrived in the cancer center’s light-infused rooms.
Ankit Mangla, MD, shared with Darby his own story of his mother’s survival from cancer. He explained that chemotherapy would take place over nine to10 months. He knew it would be emotionally draining, but he assured them he’d be there with them through it all, facilitating treatment to ensure other organs were not damaged in the process.
“UH was phenomenal in moving very quickly,” says Darby, who had sought opinions at both major cancer centers in Cleveland and found it worth driving a little farther for the compassionate care of UH Seidman Cancer Center. “We had an excellent experience with Dr. Mangla. His demeanor, intelligence, humbleness and caring were the reasons we chose UH.”
Dr. Mangla collaborated with other sarcoma specialists and calmly and knowledgeably explained the options and next steps to Darby and her husband. The drugs used in treatment of Ewing sarcoma can be taxing on major organs such as the heart, kidney and bladder. As a protective agent, the patient receives an infusion of mesna, which to that point had only been given after admitting the patient to the cancer center. Dr. Mangla worked with Cynthia Vojtek at UH Minoff Health Center to secure a home infusion of mesna to ease Darby’s recovery – the first of its kind at UH.
“The pump was a big game-changer in the way we are treating sarcoma at University Hospitals,” says Dr. Mangla, who learned of this option from a specialist in Texas. He praises the home care pharmacy, Seidman nurses and advanced practitioners from the Berger inpatient team for providing the support that complemented Darby’s care. He also credits Louis Argote Green, MD, at UH Geauga Medical Center for an expert job removing the entire tumor and Robin Elliot, MD and Shahrazad Saab, MD, the pathologists who confirmed that the chemotherapy had eradicated the tumor completely, which is the best-case scenario.
Darby received an outpouring of family and community support, who helped her cope with the challenges of facing cancer while raising a family. She also benefited from the supportive care of The Gathering Place, which helped her and her husband use the correct language to explain cancer to their children, ages 8 and 11. She told them they were getting help to get rid of the fast-growing cells that were making her sick.
“We felt it was very important that I show confidence and positivity, to be strong for them but also to be honest. There would be days Mom was very tired, there’s no way to hide this. But children are very resilient. I will need to see an oncologist for the rest of my life, but I feel so fortunate that my cancer was caught in late Stage 1, and that I had a great team the entire time at UH,” Darby says.
Care During the Pandemic
During Darby’s nine rounds of post-surgery chemotherapy, the COVID-19 pandemic hit. She was worried her treatment would be interrupted, but the outpatient staff at UH Minoff Health Center provided extra care and comfort since no visitors were allowed. Darby pressed on, maintaining quarantine at home and not developing any complications.
“COVID has changed the way we practice,” Dr. Mangla says. “It has brought in unexpected barriers to patient care. I treat my patients with the same care I would treat my own family. As an oncologist, it is psychologically very stressful to live with the fact that my next patient needing chemotherapy could contract the disease and have to delay chemotherapy. Fortunately, this has not happened with any of my patients.
“COVID is undoubtedly very dangerous, but so is cancer," Dr. Mangla says. "In Darby’s case, her response to treatment has been excellent. We could not miss out on consolidating those gains. Hence, we bit the bullet and kept pressing on.”
Onward and Upward
Darby has started to jog a few miles again, allowing herself time-outs for exercise to clear her mind from all that has been swirling around her over the past 18 months. She’s grateful to the entire team who removed barriers and smoothed the way along her road to recovery.
“We were and still are so appreciative of all that Dr. Mangla did for me and our whole family, making a difficult road that much more bearable,” Darby says. “I wish I could have hugged him at the end of my treatments but COVID-19 prevented that. He is an incredible oncologist and we were so fortunate that I was in his care. I will hug him next year!
“Onward and upward, that’s where we’re going.”