Ntshoowa Grace Abraham was far from her Botswana home when she learned she had osteosarcoma, an unusual form of bone cancer that strikes children and teens.
That frightening diagnosis, made while Abraham was attending a five-week civic leadership program at the University of Nebraska-Lincoln in January 2015, launched an international search for treatment options.
It also led Abraham to become a champion for African children with cancer, urging increased public awareness of the disease through videos and public appearances.
“I thought if I share the little I know about cancer, maybe, just maybe, someone could help save the precious kids who die from cancer every day,” she said in an email interview.
Abraham’s story has helped propel a multinational effort to improve pediatric cancer care in Botswana, Uganda and Malawi. In late February, the 21-year-old was applauded and thanked by her country’s president at a groundbreaking ceremony for a new children’s cancer and hematology center under construction in Gaborone, Botswana’s capital.
The new facility is part of a $100 million pediatric oncology initiative led by Bristol-Myers Squibb Foundation, Texas Children’s Cancer and Hematology Centers and Baylor College of Medicine International Pediatric AIDS Initiative at Texas Children’s Hospital, in partnership with the governments of Botswana, Uganda and Malawi.
“She has become the poster child for children’s cancer and oncological studies in Botswana,” said Tom Farrell, senior international adviser in the Office of the Chancellor at Nebraska.
Officials estimate more than 11,000 new cases of childhood cancer occur in Botswana, Uganda and Malawi each year. Limited access to scarce health care resources mean a cancer diagnosis is a virtual death sentence, with a mortality rate as high as 90 percent.
In remission since completing chemotherapy in early 2016, Abraham is now completing her degree in soil and water conservation engineering at the Botswana University of Agriculture and Natural Resources. She credits officials at Nebraska for facilitating her prompt diagnosis and treatment – and for teaching her leadership skills that allowed her to take on a public role.
“I had such a strong support base (at Nebraska),” she said. “And the activities came in handy, as I was now a leader, a proper leader. I had all the tools I needed.”
Her physician in Botswana said that Abraham’s stay in Nebraska likely saved her leg because her tumor was discovered early. Amputation is a common treatment for osteosarcoma in Botswana because diagnosis often comes too late for any other option. Abraham had learned about limb-saving surgery while she was in Nebraska. The Botswana medical team referred her to an orthopedic surgeon in South Africa who removed the tumor and replaced the missing bone with a prosthetic.
“She really advanced what is possible for patients in Botswana — a limb-sparing surgical technique,” said Alan Anderson, a pediatric oncologist at Texas Children’s and an associate professor of pediatric hematology and oncology at Baylor. “It’s the most common time we lose patients, when they abscond from therapy when we say a limb has to be amputated.”
Then 19, Abraham was among 20 top college students from five African nations who traveled to Lincoln in January 2015 to participate in the Study of the U.S. Institute on Civic Engagement. Known as SUSI, the educational program is sponsored by the U.S. State Department.
During her second week in Lincoln, Abraham experienced severe pain and swelling in her left knee. Linda Major, assistant vice chancellor for student affairs, accompanied the visiting student to the University Health Center, where she was told osteosarcoma was suspected. Major, along with Patrice McMahon, professor of political science, and Damien Pfister, professor of communication studies, were co-organizers of the SUSI program at Nebraska.
At the time of her diagnosis, Abraham had never heard of any other child with cancer in Botswana and she did not anticipate any treatment options in her home country. She moved into Major’s home in Lincoln for a short time, until it was confirmed that she could stay in Husker residence halls without threat to her health. Orthopedic surgeon Sean McGarry and pediatric oncologist Christina Lettieri of the University of Nebraska Medical Center confirmed Abraham’s diagnosis and began developing a treatment plan.
“As they described Grace’s treatment options, it became clear she needed to be with her family, because the treatment of osteosarcoma is intense,” Major said. “We decided we should get her back to Botswana if we could find appropriate care.”
The State Department’s Bureau of Educational and Cultural Affairs located Jeremy Slone in Botswana, an American-trained pediatric oncologist from Texas Children’s and assistant professor of pediatric hematology and oncology at Baylor, who could treat the cancer. With the exception of a trip to Birmingham and Selma, Alabama, to study the American civil rights movement, Abraham completed the remainder of the SUSI program before returning home to begin treatment.
Anderson, who took over Abraham’s treatment after Slone returned to the United States, is one of only five pediatric oncologists across Botswana, Malawi and Uganda. He serves as director of pediatric oncology at Princess Marina Hospital in Gaborone.
Abraham’s messages are simple, but important, Anderson said. By assuring families that cancer is treatable and the illness is not the child’s fault or the result of a curse, she encourages families to reach out for medical help when their child gets sick.
“My time in the hospital got me to realize what kids go through,” Abraham said. “That place got me depressed, but I decided to make the future brighter for other kids.”