knew we wanted to get Maggie home and they made it happen. Maggie got to spend five weeks at home on hospice care before she died.” Their care for Maggie continued as she transitioned to home hospice. “Once we got her home, pain management was a big piece,” McGinnis says. “Carol was on the phone with us every day helping to adjust medications because managing pain in children is completely different than for adults. She drove 70 miles each way to visit with Maggie. They even managed to get us out on a Make-a-Wish® family ski trip a month before Maggie died.” While families say the value of supportive care services is immeasurable, only a fraction of the costs — May estimates 15% — are reimbursable under health insurance. The program relies on funding from hospital administrators who believe in its mission, philanthropies that see the benefit, and communities like Maggie’s, who organize fundraising events. After Maggie’s death in February 2012, the family used money raised from a series of road races and wristband sales to establish the Miracles from Maggie Fund at The Community Foundation of Westmoreland County. To date, $130,500 has been donated, including $100,000 from the CFWC fund, to establish an endowment that now provides a permanent funding source at the hospital for the program that meant so much to Maggie and her family. That endowment helps to fund research into new palliative- and bereavement-care methods to improve quality of life for children facing life- threatening medical conditions. The research is meant to guide other hospitals in establishing their own supportive care initiatives. Under the direction of Dr. Scott Maurer, an oncologist who oversees palliative care, the program publishes its research findings in medical journals and presents at national and international meetings. The researchers’ biggest initiative to date is the Pediatric Patient-Reported Outcomes study, a project involving care teams and families at hospitals and universities in five cities. “To study symptom control and quality of life in children who are undergoing cancer- related therapy, we’ve developed a tool to allow children as young as age 7 to report their own symptoms, including those as complex as depression,” Maurer says. “The goal is to give children a voice by asking them directly instead of going through parents or caregivers.” The team is also studying the intersection of spirituality and medicine and how spiritual distress — a common occurrence in life- threatening medical crises — affects overall quality of life. They also teach pediatric residents and medical students how to communicate with families and listen compassionately when sharing bad news. Cyndi McGinnis and other parents who have benefited from Supportive Care share their experiences with second-year residents. Mackenzie Elder, now 21 and pursuing her bachelor’s degree and soon her master’s in social work at the University of Pittsburgh, speaks at the program’s annual memorial service for families. She also serves as a counselor at the program’s overnight camp for bereaved siblings. The pay-it-forward volunteerism gives comfort to their family, McGinnis says. She remembers the motto that Maggie created to help her through the journey: “ ‘Faith can crush fear.’ She really left a blueprint for how to live. It would just make her heart so happy that we’re able to continue helping other people in her memory.” by Kitty Julian | director of communications Carol May (far left), who has three advanced degrees, including nursing, founded the Supportive Care Program at UPMC Children’s Hospital of Pittsburgh. She manages it with Scott Maurer, MD, who oversees palliative care at the hospital and also sees oncology patients. May and Maurer are pictured here with Maggie Elder’s mother, Cyndi McGinnis, and sister, Mackenzie Elder. To make a gift to the Miracles from Maggie Fund for the Supportive Care Fund, visit miraclesfrommaggie.org or pittsburghfoundation.org/ Miracles-from-Maggie. More information about the Supportive Care Program is available at chp.edu/our-services/supportive-care. S P R I N G 2 0 1 9 1 3