Editor's note: Fred Hutch News Service writer Mary Engel and photographer Robert Hood were in Uganda for the May 21 grand opening of the UCI-Fred Hutch Cancer Centre. To read more of Mary and Robert's stories from Uganda, please click here.
Elizabeth Namuleme didn’t worry at first when her then 4–year-old son, Jordan Balinda, developed a swollen jaw. She rubbed it with ointment, suspecting a toothache. When the swelling continued and the boy grew feverish, she took him to the health clinic in Kiboga, the town nearest her small village in northwest Uganda’s Kyankwanzi District. But after weeks of trying one treatment after another, the doctor advised Namuleme to take her son to a hospital and uttered the words no mother wants to hear: It could be cancer.
Jordan did, it would turn out, have Burkitt lymphoma, an alarmingly fast-growing tumor of the jaw or abdomen that can kill in mere months. It is the leading cause of childhood cancer deaths in sub-Saharan Africa, not because it can’t be treated but because distance and transportation costs mean most children don’t get treatment in time or at all.
That might have been Jordan’s fate but for two intervening factors:
He was able to enroll in a program jointly run by Fred Hutchinson Cancer Research Center and the Uganda Cancer Institute, or UCI, that helps families from poor, rural areas overcome obstacles as basic as a lack of bus fare to get to the country’s sole cancer center in Kampala, the capital.
And he had a mother who was utterly determined to seek this care, even if she could ill afford time away from her small farm and the three other children she supported as a single parent.
Namuleme had one other obstacle to overcome, and it is this that made her resolve – and Jordan’s successful treatment – all the more remarkable. Years before, when she was 19, she was at the market one evening in Kiboga when suddenly she was doused in what felt like liquid fire. Someone – she’s never learned who or why – had thrown acid in her face. Since that day, she’s been blind.
Impeccably dressed in a skirt and linen blouse with a broad, embroidered collar, Namuleme, now 34, talked about Jordan’s treatment last summer on a return visit to the UCI, where the boy was treated in 2013. She was accompanied by her oldest son, 10-year-old Joshua Ahebwa, who serves as her guide, and a now healthy, playful Jordan. Her other two remained at home.
Speaking in Luganda with her case manager, UCI nurse Susan Nabakooza, interpreting, Namuleme told how she first learned about Jordan’s swollen jaw from her neighbors in October 2012, and then she felt it with her hands. She tracked its growth by touch.
When the doctor in Kiboga recommended that Jordan go to a hospital, Namuleme didn’t object, as some caregivers do, either because they know nothing about cancer or despair that it can’t be treated. Instead, she resolved to take him to Mulago National Referral Hospital, Uganda’s largest hospital, where she had spent two years after the acid attack.
The trouble was, it cost 10,000 Ugandan shillings – about $3.30 – each for her and her boys to take a bus the 70 miles to Kampala, plus another 1,000 shillings for transportation within the traffic-snarled city of 1.7 million. That was more than Namuleme made selling tomatoes by the side of the road, where she made transactions by fingering the size of each coin. Plus, it was close to Christmas, and the bus companies hiked fares near the holidays.
“They don’t have cash,” said Dr. Joyce Balagadde Kambugu, the head of pediatric oncology at the UCI, of the majority of the UCI’s rural patients. “They grow everything they need.”
Namuleme called her children’s father, a fellow student at the school for the blind she had attended after her accident but who now lived with his family in another village. Neither he nor his family offered to help, she said.
It was early January before she could afford to take Jordan to Kampala, with Joshua as her guide. Her aging father, with whom she lives, helped pay their fares from his own meager savings. Namuleme spent a week trying to negotiate the big hospital’s bureaucracy and almost lost hope when she learned that she would have to pay for the biopsy of his tumor.
It was around this time that Dr. Abrahams Omoding, a UCI oncologist and researcher with the UCI/Hutchinson Center Cancer Alliance who trained in Seattle, heard about the case and suspected Burkitt lymphoma. He saw to it that Jordan was admitted to the UCI children’s ward and helped speed the biopsy. After the pathology report confirmed the diagnosis, the boy was enrolled in the Burkitt Lymphoma Project, a comprehensive approach to addressing this cancer run by the UCI/Fred Hutch alliance. All their costs were covered.
Chemotherapy commenced immediately.
“She was excited after the first treatment,” said Nabakooza, describing Namuleme’s reaction after the tumor had shrunk noticeably by the very next day.
The dramatic, almost magical response to the first dose of combination chemotherapy can have an unintended consequence: Some families, thinking that the Burkitt lymphoma is cured, go home and don’t return every two weeks for the full six courses.
Not Namuleme. With the project providing full transportation subsidies for her, Jordan and Joshua, she returned on time for each treatment and, when treatment ended, each follow-up visit.
She also made use of the Burkitt Lymphoma Project’s other innovations, including counseling on proper nutrition and paying for medicine if the government’s free drug supply ran short. The project has also worked to raise awareness of cancer – another major obstacle to seeking treatment – by helping doctors such as the one who first saw Jordan in the Kiboga clinic recognize signs of Burkitt lymphoma and refer children to the UCI.
The key innovation that ties all the others together is case management. Nabakooza helped Namuleme understand the treatment regimen, called to remind her of appointments and sometimes picked up Jordan’s medicine. Any cancer patient or caregiver in the world knows how crucial such support can be.
“When they told her that her child had cancer, she was heartbroken and cried,” said Nabakooza, interpreting for Namuleme. “When she came here and found a health worker who cared, it gave her strength.”
Since 2012, the Burkitt Lymphoma Project has doubled survival rates to 64 percent.
Those numbers hopefully will improve still more when the UCI-Fred Hutch Cancer Centre opens on May 21. For the first time, all three of the alliance’s missions – research, training and outpatient care – will be housed in one state-of-the-art facility. With funding from Fred Hutch and the U.S. Agency for International Development, it will be the first comprehensive cancer center jointly built by U.S. and African cancer institutions in sub-Saharan Africa.
Even as they prepare to celebrate the opening of the new facility, alliance members are planning other improvements. High on the list for Balagadde Kambugu is a house for caregivers and young patients who need outpatient therapy but aren’t sick enough to take up precious space in the wards. Caregivers and patients now bring rugs and bedrolls and sleep outside on the veranda or in the courtyard, despite the threat of malaria and pneumonia.
Balagadde Kambugu believes a house, like a Ronald McDonald House in the United States, would improve survival rates.
“It’s not going to be some over-the-top five-star existence, but you want them to have some dignity,” Balagadde Kambugu said. “We need to aim high rather than selling ourselves short from the beginning.”
Elizabeth Namuleme certainly aimed high. And Jordan is alive today because she did.
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.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research 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.