Family of former cancer patient continues to raise funds at Porter Robinson’s Second Sky Music Festival to help families of pediatric cancer patients at UNC Project-Malawi
Hanging out at Porter Robinson’s Second Sky Bay Area electronic music festival and taking selfies with some of the more than 40,000 fans in attendance is not the usual scene for Kate Westmoreland, MD.
Typically the pediatric oncologist can be found treating young patients in a public government hospital in Lilongwe, Malawi, part of UNC Project-Malawi, one of only two hospitals in the entire country that provides cancer care to children. Burkitt lymphoma, the most common cancer in children in Malawi, is the research focus for Westmoreland, who is a leading expert in the disease.
Six years ago, Westmoreland met Porter Robinson, a Grammy-nominated musician and founder of the Second Sky Music Festival, as she was treating Porter’s younger brother, Mark, for Burkitt lymphoma at the UNC Basnight Cancer Hospital. The whole Robinson family—four brothers and their parents—got to know “Dr. Kate” over the course of Mark’s cancer treatment, which was successful and cured him, as it does in 90% of cases in the United States. The prospects are not as bright in Malawi, however, where Burkitt lymphoma is the most common form of cancer and where the survival rate has been as low as 29% when Westmoreland first arrived in Malawi in 2015.
“We forever will be grateful for the excellent care that Mark received at UNC and especially for the chance for our lives to converge with Kate’s,” said Nancy Robinson, Mark and Porter’s mother. “Mark’s treatment was inpatient so we spent many nights at the hospital. We had a lot of face time with Kate at all hours of the day and night. When she was caring for Mark, she began sharing stories about the children with Burkitt lymphoma in Malawi and their families. We asked a lot of questions to learn more about their lives. Our whole family was struck by Kate’s life’s work and the opportunity to be a part of improved outcomes for the children and their families in Malawi.”
The family learned about Westmoreland’s work in Malawi and clearly grew to care about “Dr. Kate”, who shares a birthday with Mark. “They are an amazing family with big hearts,” Westmoreland said of the Robinsons.
Learning about the disparities in care and outcomes for Burkitt Lymphoma in Malawi, Porter and his family created the Robinson Malawi Fund (RMF) in 2019 to support Westmoreland’s work and provide funds for direct patient care for children with Burkitt lymphoma in Malawi. That first year, Second Sky Music Festival raised more than $154,700 to contribute to the fund. Westmoreland and the entire Robinson Family attended the festival, talking with fans and collecting donations at the Robinson Malawi Fund booth.
Robinson had to cancel Second Sky in 2020 due to the COVID pandemic but was able to put on his second festival in September 2021 in Oakland, California, which was a huge success. Westmoreland and the Robinson family again collected donations from fans at the festival – GoldenVoice, the festival organizer, donated $1 per ticket sold – and Porter matched the donations for an additional total contribution of $186,000 to the Robinson Malawi Fund. Since 2019, the Robinson Malawi Fund has raised more than $340,000.
“I was there again working at the booth,” Westmoreland said of the 2021 event. “It’s a huge event, with approximately 40,000 attendees. Porter’s fans are the nicest, most sincere people. Many of them recognized me from the video Porter and I released before the festival.” Porter’s parents, Nick and Nancy Robinson, took photos with excited fans and directed them to go see Mark’s doctor and make a donation.
Donations fund chemotherapy, new goal of family housing
Westmoreland’s research focuses on pediatric Burkitt lymphoma in Malawi. She leads the pediatric and adolescent oncology program for the Malawi Cancer Consortium at UNC Project-Malawi. According to Westmoreland, African youth have a higher prevalence of Burkitt lymphoma because many of them are exposed to malaria numerous times in childhood, and repeated malaria infections along with a few other factors can cause this type of lymphoma to develop. UNC Project-Malawi participated in early testing of a new malaria vaccine, which was recently recommended by the World Health Organization for broader use. “With the new malaria vaccine, we may see better control of these infections, and subsequently hopefully a reduction in Burkitt lymphoma as well,” Westmoreland said.
Since Westmoreland first arrived in Malawi in 2015, the Burkitt lymphoma cure rate is improving steadily, rising from 29% to now reaching 50% through her work and that of close collaborators, including the Malawi Ministry of Health/Kamuzu Central Hospital and Texas Children’s Hospital’s Global HOPE program.
Westmoreland’s goal is to offer the same treatment to her Burkitt lymphoma patients in Malawi that she would in the U.S., allowing these patients the same chance for cure. Intensive chemotherapy is challenging for young, often malnourished patients, so providing the supportive medical care they need in a resource-limited setting is critical.
The focus of Westmoreland’s research, which is funded by National Institutes of Health grants, is working to solve this challenge by finding the safest balance of chemotherapy to treat her young patients’ lymphoma without leaving their fragile bodies too vulnerable. She used much of the 2019 Robinson Malawi Fund to buy a two-year supply of chemotherapy drugs along with supportive care medicine needed to treat symptoms and complications that arise from intensive chemotherapy.
Over the past year, Porter and the Robinson family along with Westmoreland have set their sights on raising funds to build a ‘Shelter’ guest house adjacent to the pediatric oncology ward where families can stay throughout their child’s treatment. With just two hospitals to treat pediatric cancer patients in all of Malawi, some of Westmoreland’s patients have to walk long distances just to get to crowded mini buses and then travel long days to receive treatment.
“Family members often can’t be away from their crops for long, and most of our families are subsistence farmers,” Westmoreland said. “The average income for Malawians is $2 a day. So people are living on very little. Here at the hospital, we currently have one big open ward.” Parents do not want to leave their child’s side, but there is no place for the parents to sleep.
“I can remember how deeply moved I was sitting in Mark’s hospital room when Kate mentioned that parents sleep under their child’s bed in the hospital in Malawi,” Nancy Robinson said. “I know firsthand how important it is for a child with cancer to have the support of their family during their treatment and how important it is for the family to collaborate with the medical team in their child’s care.”
They envision a ‘Shelter’ guest house building with a more home-like environment, including a community space for parents to meet, a kitchen where they can prepare their meals, a garden, a play area, a teen music room, and a classroom. We will also teach parents crafts that they can sell for income while staying at the hospital, which has been successful at other similar family housing in the region. Malawi’s Ministry of Health has donated land beside the hospital for the building. ‘Shelter’ is also the title of one of Porter Robinson’s most popular songs.
“With everyone in our family being able to support Mark through his intense treatment, it would mean a great deal to our family to know that the Robinson Malawi Fund could improve the experience of other families whose children are going through Burkitt Lymphoma treatment,” Nancy said.
The Robinsons hope to visit Malawi in the near future.
Second Sky 2022
We are excited to announce Second Sky Festival 2022, which will be again held in Oakland, California, on October 29. Westmoreland and the Robinson family will again be at the festival raising money for the Robinson Malawi Fund. This year, our efforts will continue to focus on raising money for continued patient care costs and establishing the ‘Shelter’ guest house for patients and their families.