The medical records of Roben Ginngarn, an eight-year-old boy who is recovering from Burkitt’s lymphoma, a form of cancer common among children in Africa, do not include an address. Not a conventional one, at least.
Instead, a drawing and some detailed instructions, including driving several kilometres on dirt roads, wading a foot-deep river, and finally asking the chief of a village for directions, show the way to his home at Kajala village.
For Kondwani Banda, a clinical officer in the paediatric oncology ward at Queen Elizabeth Hospital in Blantyre, the commercial capital of Malawi, the complicated directions are nothing unusual.
Every week he visits children in remote areas of the impoverished African country, often on motorbike, to follow up on their treatment. It is not unusual to “drive for several hours only to find that the boy or girl has died”, he says ahead of the visit to the village of Kajala, about 75km from the hospital.
Today, however, his check-up shows Roben remains in remission. “He is fine. He is doing very well,” Mr Banda tells Roben’s mother.
The clinical officer performs a critical task: making sure that all children treated in the paediatric oncology ward at Queen Elizabeth Hospital receive check-ups one month, six months and a year after their chemotherapy.
Too often they miss their consultations because their families cannot afford the cost of travelling hundreds of kilometres to the hospital. And, as the children’s health improves, their families see less need to go to hospital, in some cases missing early signs that the disease is making a nasty comeback.
“Most people will put themselves through extraordinary inconvenience to come to the hospital,” Elizabeth Molyneux, head of the paediatric oncology ward at Queen Elizabeth Hospital, explains in her office.
“But at the end of the day, we are talking about poverty and making decisions such as coming to the hospital with one child or staying home and buying food for five others instead,” she adds.
As part of efforts to ensure children do not miss their post-treatment visits because their families are too poor to bring them back to Blantyre, the paediatric oncology department decided that Mr Banda would make regular visits to the villages.
Ms Molyneux says that Mr Banda has become her “right hand man”. His work and that of the oncology ward in Blantyre is made possible by the support of World Child Cancer, which is the partner in this year’s Financial Times Seasonal Appeal and works with children with cancer in developing countries where survival rates are much lower than in the West.
For Jenifer Nelson, Roben’s mother, the outreach service provided by Mr Banda is extremely welcome. Two return minibus tickets to Blantyre for her and her son would cost at least K3,000 ($7.20) – a small fortune in a country where more than 60 per cent of the population earn less than the $1.25 a day that the World Bank considers as the global poverty line.
With five other children to take care of, Ms Nelson says she can only afford to go to the hospital with Roben if she works for other families in Kajala village on their small farm plots or if she sells some of their family animals.
And, without donor funding, it is not clear Mr Banda could do his work.
It helps to pay for Mr Banda’s motorcycle and for expensive petrol. A litre of unleaded petrol in Blantyre costs about K712 ($1.70), more than in the US and almost as much as in the UK.
The motorbike, which he uses when the dirt roads and trails are too rough or small for a car, is however in urgent need of a mechanic.
During the wet season, which usually runs from mid November until early April, the trails become impassable. “During the wet season we cannot wade the rivers; it becomes very difficult,” Mr Banda says.
“Sometimes it is extremely difficult to find the children,” he says. “You have to ask many people. Sometimes, if you have a phone number, we use the phone to locate them. But if they do not have a phone, we ask. We ask the local chiefs.”
As well as tracking the children’s recovery, the post-treatment visits also serve another function. They allow Ms Molyneux and her team to fine-tune new treatments.
If the hospital loses track of its patients, it would be impossible to know if a new treatment is curing more children whose families are too poor to bring them back to hospital or, instead, whether the children are dying unnoticed.
Mr Banda is the only answer to those questions, travelling thousands of kilometres every year to reach children fighting cancer in the most remote corners of Malawi.