Sibo Tuyishimire: Top Student and Cancer Survivor

Posted on Feb 3, 2017

Sibo Tuyishimire: Top Student and Cancer Survivor
Sibo Tuyishimire (left) was one of the first cancer patients Dr. Sara Stulac (right), PIH's deputy chief medical officer, treated in Rwanda. Photo by Zack DeClerck / Partners In Health

Hillside School’s unique attraction is its working farm. The all-boys school in Marlborough, Massachusetts, aims to give students an appreciation for the environment and for hard work. For first-time visitors, a farm surrounded by classrooms can seem incongruous. But for prospective student Sibo Tuyishimire, it’s perfectly natural.

While touring the campus in December, the 15-year-old Rwandan strode confidently toward the farm’s grazing animals.

They all came screaming, explained Renee Di Prima Burns, Sibo’s foster mother. “When I say screaming, I’m not kidding,” she laughed. Honking geese, bleating sheep, ducks, and chickens rushed to their delighted newcomer.

“Sibo walked in there like he owned the place,” she said proudly.

The young man is used to the commotion of a farm, albeit a slightly different one. He grew up in a region of Rwanda that is as remote as they come, with no running water or electricity. He still lives in Rwanda most of the year, but returns to the U.S. during his school vacations in December and stays with Burns and her family in nearby Concord.

His double life is part of a remarkable story that has caught the attention of several U.S. private schools, including Hillside. In the last decade, Sibo has had a prolonged battle with cancer. He arrived in the United States in 2011, riddled with a second relapse of Hodgkin lymphoma. Since then, he not only recovered, but returned home to earn grades that placed him in the top 4 percent of Rwandan students.

“The schools wanted to be a part of his story,” said Burns.

Treating cancer in Rwanda

In 2005, Partners In Health and the Rwandan government began restoring Rwinkwavu Hospital, a dilapidated facility in rural eastern Rwanda. A year later, staff started treating children with cancer simply because there was nowhere else for them to go. Not a single oncologist practiced in the country and there was no national cancer program. Treatment just wasn’t an option for cancer patients unless they could afford private care abroad.

“This was needless suffering and death, and we knew we could do something about it,” said Dr. Sara Stulac, a pediatrician and PIH’s deputy chief medical officer.

She and other PIH staff managed to secure cancer medications from a private hospital in Rwanda. They also reached out to medical institutions in Boston. The Dana-Farber Cancer Institute, among others, supplied more chemotherapy, while Brigham and Women’s Hospital offered to biopsy samples. Stulac trained doctors and nurses in the basics of cancer care, including how to safely administer chemotherapy. With guidance from pediatric oncologists in the U.S., they designed individualized chemotherapy regimens over email. Rwinkwavu Hospital’s pediatric cancer ward was born.

It didn’t look like an oncology department you’d see in a Western hospital—sometimes IV bags dangled from coat hangers—but as Stulac says, they ensured every patient’s course of treatment was safe and effective.

In fact, it was lifesaving. As a couple of children emerged from the hospital cured from their tumors and illnesses, word got around, and a few cases in 2006 turned into a tide of children and their parents from all over Rwanda seeking care the following year. And the next.

When 5-year-old Sibo turned up with his mother in 2007, he was pale, thin, and in pain from a distended belly full of cancer. After a few months, he responded well to treatment and returned home. But later, he was back at Rwinkwavu and put through more rounds of chemotherapy and a trip to Uganda for radiation therapy.

Sibo’s condition worsened, and Stulac and her colleagues knew that his only hope of survival was a stem cell transplant. The procedure was not available in sub-Saharan Africa and prohibitively expensive elsewhere in the world. But Boston Children’s Hospital offered free care, and he was flown to the United States. Stulac emailed everyone she knew in search of a family to host Sibo, and the chain grew until it arrived in Burns’s inbox. Burns invited Sibo to join her, her husband, and their children in Concord. His treatment began immediately.

After another round of chemotherapy, it took about four weeks to do the transplant, explained Dr. Leslie Lehmann, the clinical director of the Pediatric Stem Cell Transplant Center at Dana-Farber Cancer Institute. The procedure went according to plan, but Sibo needed to remain in the U.S. for a year while he recovered. Before he left the hospital, his bed was inundated with visitors—friends and clinicians alike.

“He was incredibly popular,” said Lehmann. “The nurses loved him. He’s just got a great spirit.”

5,000 patients—and counting

Sibo’s case was among many that served as the impetus for developing a formal cancer program in Rwanda. PIH and Rwanda’s Ministry of Health were close to finishing construction of a new hospital in the north of the country. They decided that the hospital would house the country’s long-needed national cancer center. Butaro District Hospital opened in 2011, and its Cancer Center of Excellence opened the following year.

Rural East Africa had seen nothing like it. Besides chemotherapy and surgery, the center had its own pathology lab, social services, counseling, and palliative care. Staff could use specialized imaging equipment to collaborate with pathologists at the Dana-Farber Cancer Institute. Beds were surrounded on three sides by brightly painted walls and large glass windows overlooking Rwanda’s hills.

Cancer services have come a long way since Sibo first arrived on PIH’s doorstep. Teams of doctors and nurses have cared for about 5,000 patients since the center opened. Emergency flights to the U.S. are a thing of the past. There are no coat hangers holding IV bags.

Sibo’s sickness is also fading into history as he focuses on his education. After visiting Hillside and before returning to Rwanda in December, he took the SSAT test for secondary school admissions. He’ll likely hear from schools in March.

In the meantime, he continues at his current school in Rwanda, playing basketball and participating in the debate team. “I tried. I was scared,” he said about the test. “Math—I like it. It’s not very hard for me, but the language part was a bit difficult.”

His cancer formed no bitterness in him; he is a remarkable young man who takes everything in his stride. Whether sharing a single-room house with his mother and brother in Rwanda, or walking the annual tree lighting parade with Burns and his host family in Concord, he slips from one world to another with ease.

It’s not clear yet whether the ducks and chickens at Hillside get to see their friend again, but Burns is confident great things are in store.

“It’s destiny for him,” she said.

Dr. Paul Farmer sharing a friendly moment with one of his staff.

Paul's Promise

As we mourn the passing of our beloved Dr. Paul Farmer, we also honor his life and legacy.

PIH Founders - Jim Kim, Ophelia Dahl, Paul Farmer

Bending the Arc

More than 30 years ago, a movement began that would change global health forever. Bending the Arc is the story of Partners In Health's origins.

Please send donations to: Partners In Health, PO Box 996, Frederick, MD 21705-9942