In Uganda, two women struggle to get cancer care for a much-loved child

In Uganda, two women struggle to get cancer care for a much-loved child
Musobya Musa and family
Possible Burkitt lymphoma patient Musobya Musa, 6, waits with his mother, Nawgonda Fazira, and her aunt, Mukyala Fazira, for test results at the Uganda Cancer Institute in Kampala, Uganda, on July 18, 2014. Robert Hood / Fred Hutch

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 - Uganda Cancer Institute/Hutchinson Center Cancer Alliance

KAMPALA, UGANDA — Musobya Musa almost didn’t make it to the Uganda Cancer Institute, despite how hard his mother and her aunt tried to get help for him.

The women had spent the month of March shuttling the 6-year-old boy to a local clinic near their home in a village in eastern Uganda. Musa was running fevers, and they assumed, logically enough, that he had malaria.

In April, he had an aching tooth extracted. That’s when the swelling started. And that’s when the clinic doctors told Nawgonda Fazira that her son might have cancer and she should take him to Kampala, Uganda’s capital and largest city, for treatment.

Fazira and her aunt, Mukyala Fazira, had 40,000 Ugandan shillings, or about $15, between them. It was not enough to get to Kampala, about 90 miles away. And besides, if they spent the money to get a ride in a taxi or a boda-boda — the crammed mini-buses or darting motorbikes that serve as transportation for most Ugandans — how would they pay for food?

Nawgonda Fazira, 20, just finished high school and lives with her mother and stepfather, both subsistence farmers, and eight younger siblings and cousins. No one knows where Musa’s father, who has another family and has never supported the boy, now lives.

Mukyala Fazira, also 20, lives there too. Although she could be a sister rather than an aunt, she calls her niece “my daughter,” and lovingly treats her like one.

The two women, who both go by the name Fazira, described their efforts to find help for Musa, speaking softly in Luganda as their UCI case manager translated.

When Musa’s jaw continued to swell, the two Faziras took him to a small regional hospital. Doctors there repeated the recommendation to go to Kampala. A second hospital referred them to a larger regional hospital in a closer city, but there, the doctors again said: Kampala.

Finally a doctor at a private clinic told them he could treat Musa for 50,000 shillings, or just under $20. Musa’s jaw was so swollen by then that it was pushing out teeth and leaving the once-talkative boy whimpering in pain. The women managed to scrounge together another 10,000 shillings.

Instead of accepting it, however, the doctor insisted they use it to take Musa to Kampala.

They arrived on Wednesday and by Friday were in the pediatric ward at the Uganda Cancer Institute, awaiting the results of a biopsy of Musa’s tumor.

“The good Lord helped us get here despite all the obstacles,” said Mukyala Fazira. “We are hopeful the child will get better.”

Musobya Musa awaiting diagnosis in Kampala
Musobya Musa receives morphine from his mother while they wait for test results in the pediatric ward of the Uganda Cancer Institute on Friday. Robert Hood / Fred Hutch

Burkitt lymphoma, the most common childhood cancer in sub-Saharan Africa, is an alarmingly fast-growing tumor that can double in size in 24 hours. It appears in the abdomen or the jaw, and dental problems are a common first sign as the tumor presses against the teeth and gums. But tests must confirm the diagnosis before treatment can begin.

It is treatable with chemotherapy every two weeks for 12 weeks. But distance and lack of money to get to the UCI are all too common road blocks to getting treatment early enough — and also to continuing it long enough to complete the regimen.

If Musa is diagnosed with Burkitt, he will be admitted to the Burkitt Lymphoma Project, a joint initiative of the UCI and Fred Hutchinson Cancer Research Center. The Ugandan government provides free treatment for cancer, but patients sometimes have to pay out of pocket during periods of drug shortages; admission to the project ensures that these costs will be covered and care won’t be disrupted. The project also provides a daily meal for the patients and — especially important in cases such as this — helps subsidize transportation costs so patients and their caregivers can return to Kampala every two weeks for chemotherapy.

But until they receive a diagnosis next week, the two Faziras won’t know whether Musa will qualify for this assistance.

As the two women told their story, often speaking in unison, their faces seemed tired and resigned. Only when asked what Musa is like when he’s not feeling so ill did they grow animated.

The first and so-far only grandchild in the family is doted on at home, where he loves football and running around with his friends, they said, as their case manager interpreted. He is so talkative that even now, when he can hardly speak, they hear him trying to talk.

For the only time, the mother and aunt disagreed — with laugher — on whether Musa is naughty. “Yes,” said the aunt. “No,” said the mother, though she conceded that he can be a bit stubborn.

Then their faces grew still again.

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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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