Changing the Odds for Kids with Cancer in Uganda

Jalen Weatherhead, a MassGeneral Hospital for Children pediatric cancer patient, raised funds to help kids with cancer in Uganda.

During a family vacation to London in 2019, Jalen Weatherhead, then, 11, noticed his underarms hurt. Jalen’s symptoms concerned his mother, Carrie Weatherhead, so much that when they returned to their Dorchester, Mass., home the next day she rushed Jalen to his pediatrician. Then, they went straight to MassGeneral Hospital for Children where they learned Jalen’s pain was a symptom of Hodgkin lymphoma.

From the beginning, Jalen and his family felt reassured by the Mass General team’s confidence in the Hodgkin lymphoma diagnosis and selected course of treatment.

“They made it very clear for Jalen. There were no question marks. Then, we took it one treatment at a time,” Carrie recalls.

Jalen remembers chemo days being hard and vomiting for hours. But as his treatment progressed, when he felt sick, he reminded himself that, in a few days, he would feel fine.

Jalen Weatherhead
Jalen Weatherhead

During chemo, Mass General’s music therapist visited him, and they’d jam on guitar to Tom Petty and U2. She taught him the card game solitaire to pass the time.

He watched a lot of movies, but missed out on summer camps that year. He also lost his hair, so for eight months he often wore baseball hats.

Carrie, a social worker, insisted that Jalen meet with a social worker when he went for chemo sessions. She wanted to make sure his mental health was OK, too.

“I feel better now,” Jalen says. “I tried not to think about having cancer when I was sick.”

 

Tackling Disparities in Uganda Kids’ Cancer

Howard Weinstein, MD, chief of the Pediatric Hematology/Oncology Unit at MassGeneral Hospital for Children, was one of the doctors leading Jalen’s recovery. Jalen became close with Dr. Weinstein, who is well known for his ability to connect with kids.

“The likelihood of surviving cancer should not be based on where you live.”

During one of Jalen’s appointments, Dr. Weinstein told him about his work in Uganda at Mbarara Regional Referral Hospital (MRRH). Dr. Weinstein was instrumental in developing a pediatric oncology program at MRRH.

In 2015, when Dr. Weinstein first visited Uganda, he worked with the MRRH team to create a separate clinic for pediatric cancer patients to reduce the risk of infection from other patients.

He is also on a team with Mass General clinicians to review medical data to improve the diagnosis of Ugandan patients and participates in biweekly video conference calls about new cases and needs at MRRH.

Howard Weinstein, MD
Howard Weinstein, MD

The MRRH program aims to improve the pediatric cancer cure rate in Uganda, which is about 20 percent. In comparison, the cure rate for children with cancer is 85 percent in the United States.

“The likelihood of surviving cancer should not be based on where you live,” Dr. Weinstein says.

Jalen learned cancer patients in Uganda had to travel many miles to the hospital and sometimes finding transportation was difficult. He also learned the hospital had no amenities, like meals, for patients.

 

Fundraising for Kids with Cancer in Uganda

Jalen was struck by the inequity in cancer care between the two countries. He thought about how his chemotherapy took four months, instead of six, because his body responded so well.

He thought about his two-mile ride to the hospital from Dorchester, the convenience of the Mass General cafeteria and the things that made his care enjoyable — like playing Tom Petty songs on the guitar with the hospital music therapist.

Jalen was struck by the inequity in cancer care between the U.S. and Uganda.

“It made me sad because patients in Uganda don’t have the same treatment options as I did,” Jalen says.

When Jalen learned how fundraising made it possible for Dr. Weinstein and his colleagues to train doctors and nurses and build the program in Uganda, he wanted to raise money to help them. Jalen told his mother and father, Edward, what he wanted to do and they were fully supportive. As a social worker, Carrie teaches her patients that expressing gratitude can improve their mental well-being and help them move forward from difficult times. Carrie says she was proud of Jalen for his desire to give back.

Dr. Weinstein with his colleagues from Uganda (left to right) Stephen Asiimwe, MD, Gertrude Kiwanuka, MD, and Abraham Omoding, MD.
Dr. Weinsten in Uganda with (left to right) Stephen Asiimwe program director, Mbarara University of Science and Technology (MUST)-Mass General Hospital Global Health Collaborative; Gertrude Kiwanuka, MD, dean faculty of medicine, MUST, and Abraham Omoding, MD, Uganda Cancer Institute.

Jalen and his family registered with Mass General’s BeCause community — a group of friends and supporters who fundraise by organizing and participating in events, social gatherings and online campaigns.

The Weatherheads created an online fundraising page announcing Jalen’s decision to raise money for Mass General’s work in Uganda. They shared the link with their family and friends. The overwhelming response helped the family exceed their goal and raise more than $10,000 to support Dr. Weinstein’s work in Uganda.

Jalen’s fundraising will support a portion of nursing and physician salaries and the purchase of essential chemotherapy drugs. “More and more children with cancer are now being referred to MRRH and are getting good cancer care, thanks to Jalen and other donors,” Dr. Weinstein says.

You can join the Weatherhead family and support cancer care for kids in Uganda.