'Your friend has gone': Saying goodbye to Musa
Editor's note: Staff writer Mary Engel and photographer Robert Hood are in Uganda to report on the work of Fred Hutch's Program in Global Oncology and the Uganda Cancer Institute, particularly in the area of infection-related cancers.
KAMPALA, UGANDA -- Mariam Ndagire, a nurse and case manager at the Uganda Cancer Institute, had finished her shift but was still in the office she shares with other nurses when Nawgonda Fazira found her. Fazira was crying.
“Your friend has gone,” she said.
Fazira’s son, 6-year-old Musobya Musa, died Friday evening, just shy of two days after arriving at the UCI. Ndagire was his case manager.
Earlier that day, Fazira, 20, and her aunt, Mukyala Fazira, also 20, had been in the pediatric ward, awaiting the results of a biopsy of Musa’s tumor. His hugely swollen jaw is a common symptom of Burkitt lymphoma, a cancer that is highly curable with chemotherapy. But in sub-Saharan Africa, where Burkitt lymphoma is the leading cause of childhood cancer deaths, distance and lack of money for transportation are all-too-common roadblocks to getting treatment in time and also continuing it long enough to complete the regimen.
Musa, the family’s beloved only grandchild, had first become ill in March; it took months for the two women to scrape together the 50,000 Ugandan shillings — a little under $20 — to travel about 90 miles from their east Uganda village to the country’s only cancer center in Kampala. By then, the once-talkative boy who had loved football and running around with his friends was desperately ill.
On Friday evening around 5:30, the boy’s already troubled breathing grew worse. Nurses gave him oxygen. He died an hour later.
Fazira went to find Ndagire.
Even at a hospital in which 80 percent of first-time patients are in the late stages of their disease, Ndagire has not gotten used to such moments.
“You try to harden yourself, and you think you’re doing OK,” she said on Tuesday. “And then you lose a patient, and you’re shattered.”
Ordinary acts of kindness
That night, Ndagire, 27, had no time to mourn, for another crisis loomed: Fazira needed to bury her son before sundown the following day, according to her Muslim faith. But she and her aunt had used all of their money to get to Kampala, and had none left to return with the boy’s body to their village, Nawansega.
Ndagire immediately called Dr. Innocent Mutyaba, the coordinator of the Burkitt Lymphoma Project, a joint initiative of the UCI and Fred Hutchinson Cancer Research Center. One of the ways the project helps patients adhere to treatment is to provide transportation subsidies so that they can return to Kampala every two weeks over about three months for chemotherapy. Could the project help the women get home? Yes, said Mutyaba.
Families who can afford it hire a car and a coffin to pick up the remains of their loved ones from the hospital. Even with assistance, the women could afford neither. So with Ndagire’s help, they slipped Musa’s small body into a vinyl bag. Cradling it tenderly, Fazira climbed on the back of a boda-boda, or motorcycle taxi, with her aunt on another. A man who was at the hospital with his own child offered to accompany them, Ndagire said, though he did not know them and was from a different region of Uganda.
“They were two young women, traveling alone,” Ndagire said, matter-of-factly explaining what seemed an extraordinary act of kindness.
The boda-bodas delivered the trio to a taxi stand. Taxis are vans that seat 14 and often carry more; they don’t leave until they are full, and this one didn’t leave until about 9 p.m., Ndagire learned later.
They rode the taxi through the night to the largest town near their village, where the two women waited by the side of the road while family and neighbors mobilized to hire boda-bodas to collect them. The man who’d accompanied them returned to Kampala.
Saving the next Musa
According to Mutyaba, Burkitt lymphoma, one of the fastest-growing cancers, can kill in as little as two months if not treated. A delay of just a few weeks can be very serious. So in addition to the transportation subsidies, the Burkitt Lymphoma Project does outreach to regional clinics and dental practitioners — to whom families often turn first — to raise awareness of the disease and the need for early treatment. They’ve also worked to improve and speed up diagnoses.
The project has made great strides since it began in 2012. The one-year survival rate for patients is now 64 percent, up from an estimated 30 to 40 percent before. But cases such as Musa’s underscore the need to do more. Now the project is looking into the possibility of setting up regional, possibly mobile, clinics that could treat Burkitt lymphoma and some other cancer patients nearer their homes, circumventing the roadblock of transportation costs and time.
“If there were cancer hospital wards in different parts of the country, it would make it so much easier for the families,” said Ndagire.
Ndagire’s job as case manager — another project innovation — is to make things easier for patients, even if doing so can make things harder on herself.
“You get involved in a patient’s life, and if you lose them, it’s just so heartbreaking,” she said. “But to do your job well, you have to have a bond with a patient. They have to know that you care.”
Clearly she does. And clearly they know.
On Sunday, Fazira phoned to let Ndagire know that she and her aunt had arrived in their village at 11 a.m. on Saturday. Musa was buried by sundown.
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Funding for the Burkitt Lymphoma Project comes from the National Cancer Institute, the Burkitt’s Lymphoma Fund for Africa, the Martin-Fabert Foundation and individual donors.
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Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.
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