When peace of mind is medicine
Kampala, Uganda | FLAVIA NASSAKA | Brain Walusimbi is an entertainer with a heart for cancer children. He visits them at the Uganda Cancer Institute in Kampala, brings a bouncing castle, does face paintings on them, and plays music.
Walusimbi’s involvement started in 2007. He had been hired to entertain guests during a staff party that was also attended by patients. He says his team made face paintings on the children and brought in bouncing castles. But he realized amidst the merry making and fun was misery as some children could not leave the verandas to participate. Some had smooth shaven heads, open wounds, and big swellings. They did not have food or where to sleep. The wards were full, he learnt.
He thought these children; mostly below 15 years of age, needed a shelter. So, in 2010, he set up ‘Bless a Child Foundation’, a child cancer patients hostel in Makerere Kikoni; a residential neighbourhood nearMulago Hospital.He now houses 30 patients and 30 care givers at any given time. They are mainly referred to him through word of mouth.
He keeps innovating. He, for example, strives to give the patients food more than thrice a day. And when he read about clown doctors – who go to hospitals in the West not to treat but to add some entertainment, he thought he could try it out here.
“I got swings, bouncing castles, I got music,” he says and headed to cancer patients. He says he saw that entertainment improves the quality of life of the child patients and their caregivers.
“Even the parents became more relaxed,” he says, “You know most of them don’t have relatives in the city or a source of income.”
He says because they report to the Cancer Institute late, when their cancers are in advanced stage; many have to be in-patients; which means spending more.
We spoke on Feb.15, when the world was marking International Childhood Care Day (ICCD). The main goal of this global health event is to help create awareness about childhood cancer, reduce mortality, and eliminate all cancer-related pain and suffering of children fighting the disease. Started in in 2002, the day aims to achieve at least 60% survival for all children diagnosed with cancer around the world by 2030.
While the international theme for the celebrations was ‘No More Pain’ and ‘No More Loss’ for children, survivors and their families’, In Uganda it was marked under the theme, ‘Better Access to Care’ as the country still grapples with a challenge of ensuring that those that are diagnosed with the various cancers survive. Survival rate is still low, at 30%, and yet the number of those reporting with cancer is on an increase.
Dr. Joyce Balagadde Kambugu a childhood cancers expert who heads the Pediatric Oncology department at the Institute told The Independent, that last year they recorded 582 cases, up from 512 in 2017 and 476 cases in 2016.
She said although the numbers are high, the good news is that more numbers of children are also surviving from the likes of leukemia and Bukirtts lymphoma which are the commonest. This can be seen from individual cases handled as latest statistics on exact numbers of survivors are unavailable.
Also, according to the Executive Director, Dr. Jackson Orem, realising that 95% of childhood cancers are curable through chemotherapy, they have put emphasis on providing stocks of at least 85%.
“While we can’t say let’s prevent especially with children where causes are mostly unknown. We said let patients report early, we can save them and those that we can’t help we said lets ensure that they don’t die in pain,” says Balagadde who has been the only pediatric oncologist until recently. There are now two pediatric oncologists.