New Hope Children’s Hostel offers care for cancer patients

KAMPALA, UGANDA – Urine streams down his leg, but no one is startled. It’s a common side effect of his condition.

Today, five-year-old Kamulisi Onyakol is quiet. His mother Nakasa Lakeeri attributes this to her son’s hunger. Lunch, one of three meals provided by the hostel, is just around the corner.

Onyakol and Lakeeri have been living at New Hope Children’s Hostel (NHCH) since February. NHCH is a home for ill children and their caregivers. Most of the children have cancer and many also have human immunodeficiency virus (HIV).

Onyakol has spinal cancer that has weakened his lower body and he cannot walk. He is completely dependent on Lakeeri, who carries him around the hostel.

Although he doesn’t have the ability to play with other children in the hostel, Onyakol is happiest when he’s being pushed on the multi-colored swing set in the hostel’s yard.

Onyakol and his mother are both grateful to call the hostel their temporary home because it is much closer to the hospital where Onyakol receives treatment than is their home village. Still, the hostel doesn’t provide him with a clear path to recovery.

Lakeeri cannot afford the  medication necessary for his complete recovery.

In 2003, George W. Bush introduced the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Today, this plan provides about 11.5 million HIV-positive people with free antiretroviral treatment (ARVs). These free drugs are not a cure, but they make it possible for people to live without contracting AIDS.

Before PEPFAR, only 50,000 out of the more than 25 million people living with HIV in sub-Saharan Africa were on treatment.

Although ARVs are free, medications for other illnesses such as cancer are not.

Dr. Emma Mugisa, Baylor College of Medicine at Mulago Hospital, said there are constant struggles for cancer patients in Uganda.

“Cancer drugs are extremely expensive and my assumption is that perhaps that’s the reason the country’s unable to afford some of these cancer medications,” he said.

Free ARVs have undoubtedly helped Ugandans in the fight against AIDS, but Dr. Samuel Guma with Kawempe Home Care—a clinic that treats patients with HIV, cancer and tuberculosis—said lack of cancer funding has the opposite effect.

Because of the direct relationship between cancer and HIV, many cancers are considered AIDS-defining, meaning the cancer was actually caused by the HIV. Guma said without more access to cancer treatment, the death rate of people with AIDS-defining cancers will continue to increase.

Back in Olimeela, the village they lived in before coming to the hostel, Lakeeri has seven more children. The oldest is 22. She misses her home and children, but doesn’t have the money to go back.

“Life here is less compared to home,” she said.

When Onyakol does talk, he does so quietly in response to his mother’s financial concerns. She tells him it’s not his concern.

For the past two years Lakeeri has been a single mother raising her family. Her late husband died after lighting himself on fire in their home. All of her children were there to see him burn. Lakeeri attributes his actions to a mental breakdown.

Before Onyakol’s diagnosis, most of Lakeeri’s children went to school. They have all since dropped out. Because their mother takes care of Onyakol full time and therefore cannot work, her children work to help pay for their youngest brother’s medication.

But it is still not enough.

Tomorrow, Onyakol and his mother will take a mini bus from the hostel to Mulago hospital. Onyakol will receive the minimal care the hospital is able to give him. He will attend play therapy. He will not receive medication.