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.
PALLISA DISTRICT, UGANDA – We’d been bouncing along for at least an hour on a rutted dirt path that sees far more foot than car traffic when we finally found what we’d been looking for: two small handmade brick buildings and a cluster of thatched-roof huts on a dirt clearing in the middle of sorghum fields and banana groves. We’d reached the homestead of Richard Kedi, a traditional healer, and his two wives and six children.
But also there to greet us was a host of other people – at least 125, by our count, many of them children – crowded into the compound. We would only find out later why they had come.
Photographer Robert Hood and I had driven about 130 miles from Kampala, Uganda’s bustling, traffic-jammed capital, to visit Kedi and his daughter, 6-year-old Naula Kamondi, whom we’d met last July at the Uganda Cancer Institute, or UCI. We’d come for two reasons: to see how Naula was doing after completing treatment and to see for ourselves how hard it was for patients like her to get to Kampala for care.
Fred Hutchinson Cancer Research Center began a research partnership with the Kampala-based UCI a decade ago. Since then, the collaboration has grown to include training, educational outreach and clinical care. On Thursday, the UCI-Hutchinson Center Cancer Alliance will open a new, state-of-the art building that will for the first time bring all of these programs under one roof.
When Robert and I were in Kampala last summer to report on the alliance’s work, Naula had just begun chemotherapy for Burkitt lymphoma, a fast-growing tumor in the jaw or abdomen that can kill in mere months. It is the leading cause of childhood cancer deaths in equatorial Africa, not because it can’t be treated but because most children don’t get treatment in time or at all. Obstacles include lack of awareness of cancer and its treatment coupled with distance and transportation costs in a country largely populated by subsistence farmers.
A UCI-Hutch initiative called the Burkitt Lymphoma Project aims to change that dismal outcome through a holistic approach that includes, among other innovations, raising awareness of the cancer and its treatment, providing transportation subsidies and assigning case managers to help families navigate care.
Accompanying Robert and me on our road trip Saturday were two of those case workers, UCI pediatric nurses extraordinaire Mariam Ndagire and Susan Nabakooza, both of whom we’d met last summer. The project does not include funding for home visits, so this was a first for Mariam and Susan as well.
The 130-mile trip from Kampala took us 4 ½ hours in a four-wheel-drive sports utility vehicle with a deft driver. To get to the UCI in Kampala, Naula and her family had to first walk along the dirt path for 1 ½ hours to reach the nearest small village with a boda-boda, or motorcycle taxi, stand. From there, it was an hour or more on more rut than road to the main highway to catch a taxi van crammed with 14 passengers, a driver and a conductor.
Bone-jarred and sweaty – we could only imagine how the end of such a journey would feel for them, particularly a sick child – Mariam, Susan, Robert and I tumbled out of the car, greeted by a beaming Kedi. He waved the four of us and our driver into a shady mud hut with a packed dirt floor that just held six yellow plastic chairs. He motioned for us to sit and then sat himself. Children and adults pressed in from openings on three sides.
As if conjured from magic, Naula appeared in the hut, clearly dressed up for our visit in a white, satin-like dress with black dots and flowers. When we saw her last July, she’d had the first of six chemotherapy treatments, and her face was still puffy with tumors on each side. Now her dominant feature was her big, solemn eyes. As is the custom here, she knelt, ducked her head, and touched our hands.
At our request, Naula’s mother, Rachel Nalukiku, also beautifully dressed in a pink and black traditional Gomesi, appeared too, and sat on the ground at one of the doorways, nursing her youngest child. With Mariam and Susan translating from Lugwere, which is spoken by the tribe to which Kedi and his family belong, to Luganda, the language of Kampala and central Uganda, then into English, the parents talked about what’s happened since we saw Naula last.
From July until November, Naula stayed with Kedi’s mother in the town of Jinja, which is closer to Kampala and on a good, paved road. That made it easier for grandmother and granddaughter to return to the UCI in Kampala every two weeks for six rounds of chemotherapy. The two did so faithfully, assisted by a transportation subsidy from the UCI-Hutch project.
When Naula returned home in November after her treatment ended, “she was so excited, just running around, playing with everyone,” said Kedi, with Mariam translating. “That was how she expressed her excitement.”
The soft-spoken Nalukiku added, “The experience did not change her. She’s still a very happy child. She still plays a lot.”
The playful child was shy and quiet with us. When Susan asked if she recognized Robert and me, Naula whispered that she remembered us from when she was in the hospital getting treatment.
Naula’s mother had believed she would never see her second-born child again.
“When the child was sick and the father took her to the grandmother, she felt in her heart that the child would die,” said Mariam, translating for Nalukiku. “She thought they were wasting their time. She was overjoyed when the child returned.”
“They slaughtered three chickens to celebrate,” said Susan. “All the neighbors came.”
It’s not unusual that everyone believed the child would die. Even among Ugandans who have heard of cancer, a diagnosis is often seen as a death sentence. Such a belief can become self-fulfilling if it causes patients to delay or forgo treatment. And sometimes families rely on traditional healers such as Kedi, which can further delay care.
However, when Naula’s jaw first started swelling last June, Kedi took her to a hospital rather than trying to treat her himself, even though his neighbors advised against it. The treatment’s success has changed their minds.
“Now people are more open to Western medicine,” said Mariam, translating for Kedi. “But now the problem is that they are so poor they can’t afford to go to the hospital.”
Which brings us to why 125 people were awaiting our visit when we’d expected to see just Kedi and his family.
“Most of the people you see came because they heard that Richard was going to be visited by the people who cured Naula,” said Mariam. “Most of the people we’re seeing came here because they have some illness,” whether cancer or another ailment.
A hundred pairs of eyes watched us expectantly.
Robert and I were utterly dismayed. In our effort to tell Naula’s story and to better show how difficult it is for people in her situation to even get to a hospital, we had inadvertently created false expectations.
Susan and Mariam ably stepped in to defuse expectations. We had not come to hold a clinic but to see how Naula was doing, Susan told the crowd. We had heard their desperation for more accessible medical care across the board, and would tell their story. In the meantime, we worked for an organization that helped children with Burkitt lymphoma and would continue to help more children like Naula.
Kedi asked if we could stay while his wives prepared a meal. With another almost five-hour drive back to Kampala before of us, we begged off. Instead, he pressed upon us two chickens, which seemed a far more valuable gift than the food staples we’d brought the family or the school supplies, crayons and finger puppets we’d brought for Naula and her siblings. But there was no denying his generosity, and into the back of the car they went, clucking and crowing as we bumped our way back to Kampala, where they would be dinner for Susan’s and Mariam’s families.
I was curious about what Mariam and Susan took away from the visit.
“It helps you feel more for your patient,” said Mariam, who is already one of the kindest and most empathetic people I know. “It makes me understand what parents have to go through just to get to the cancer institute.”
“I saw how desperate people are,” said the equally kind Susan. “It helps me not blame the parents if they didn’t come in early.”
Both said that they would like for the Burkitt Lymphoma Project to provide even more support for the families. They would, for example, like a house for patients and their families to stay during treatment, much like Ronald McDonald houses in the U.S. That is one of the project's goals as well.
“The child is sick and going through chemo,” said Mariam. “And they have to do this journey over these rough roads every two weeks. That’s why we need a family house.”
As for Naula, she now returns to the UCI for follow-up appointments every three months. Soon she will transition to every six months.
“She got all of her treatment in time,” said Mariam. “We are hopeful she is cured.”
Chances are greater than 90 percent that the cancer won’t return, she added.
Before we left the homestead, I asked Naula’s parents about their dreams for her. Her father’s response surprised me, especially because of his profession as a traditional healer.
“They would like their child to study and become a doctor,” said Mariam, translating for Kedi, “so that the help you’ve offered Naula doesn’t stop at the treatment level.”
Robert Hood, senior multimedia editor at Fred Hutchinson Cancer Research Center, is a longtime photojournalist who grew up in newspapers and most recently worked at NBC News Digital and msnbc.com, directing multimedia operations. Reach him at firstname.lastname@example.org.
Funding for the Burkitt Lymphoma Project comes from the National Cancer Institute, the Burkitt Lymphoma Fund for Africa, the Martin-Fabert Foundation and individual donors.
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.