Stories about children battling cancer are sometimes untellable especially when the cancer has one paralyzed to the extent that intravenous (IV) tubes are a paramount lifeline.
Such is the story of four-year-old Caleb Kisakye from Pallisa district, who is fighting for his life after being diagnosed with leukemia (a cancer of blood-forming tissue, which hinders the body’s ability to fight infection) in January this year.
Shortly before celebrating his fourth birthday, an otherwise physically-active Kisakye started experiencing sharp body pains and feet swelling. Initially, his mother thought it was acute malaria and decided to take him to Mbale hospital for treatment.
“At Mbale, we were told he had kidney disease and they referred us to Mulago for further treatment. The following day, we were aboard a bus to Mulago where we received the most shocking news of our life,” said Kisakye’s mother.
After several tests, it was identified that his blood patterns were consistent with those of leukemia in its aanced stages. Days later, the swelling worsened and pain spread to all parts of his body.
Today, from the time Kisakye wakes until he sleeps, a 24-hour oxygen support is a must and the infant now feeds and excretes through tubes. Faced with inevitability that her second-born son might succumb to the ailment, Kisakye’s mother has stopped working and assumed a full-time position as her son’s caretaker.
“I have to ensure that whenever he winces in pain, I call a doctor or nurse on duty to check him and also ensure that he feeds and sleeps well,” she said, forlornly.
Sr Rucy Mulyagonja, the in-charge children’s ward, Uganda Cancer Institute (UCI), says Kisakye’s cancer started as acute myeloid leukemia, a type of blood cancer characterized by overproduction of immature white blood cells. Currently, it has spread throughout his body affecting his heart, muscles, brain and liver.
“Initially, it was his belly which was swollen and this is because leukemia causes liver enlargement. But now it has caused his whole body to swell. In some children, it even causes seizures,” said Mulyagonja during an interview with The Observer.
Leukemia is the third most prominent cancer in children in Uganda after Burkitt’s lymphoma, a childhood cancer caused by the Epstein-Barr virus, a potentially fatal and disfiguring virus that often develops in the jaw or abdomen, and Wilms tumour, a type of kidney cancer.
Dr Joyce Balagadde Kambugu, a paediatric oncologist at UCI, says causes of childhood cancers are largely unknown although five per cent may be tied to genetic abnormalities ionizing radiation exposures and a few conditions such as Down’s syndrome.
To detect that a child has been afflicted with cancer, she aises that people be on the outlook for symptoms and signs such as lumps in the abdomen, pelvis, head, neck, limbs, testes and glands white spot in the eye or bulging eyeball and regression in speech
“Others include unexplained prolonged fever for over two weeks, aching bones, joints and back, headache for more than a week, enlarging head and deterioration in walk,” Balagadde cautions.
ON THE RISE
Across Uganda, pediatric cancers are on the increase with 1,500 children being diagnosed annually, according to Dr Jackson Orem, UCI’s director. Moreover, cancer cases increased a great margin from 15,000 in 2010 to 33,000 in 2011 with childhood cancers accounting for five per cent.
Uganda’s pattern of increase in childhood cancers seems to reflect the global milieu. According to 2013 estimates by the World Health Organisation (WHO), cancer claims the lives of about 100,000 children before the age of 15 every year worldwide and 94 per cent of these deaths occur in low-income countries whose proportion continues to rise.
While survival rates of many pediatric cancers can be improved with early diagnosis, for too many children in Uganda, cancer will shorten their lives too soon because of late presentation.
“A lack of awareness about cancer means that majority of children often present with late-stage cancer and findings from our satellite centers show that only four per cent of children who are referred to UCI actually report for treatment,” said Dr Balagadde.
Currently, the survival rate of children afflicted with cancer across sub-Saharan Africa is between 20 and 30 per cent, meaning that majority of affected children die. This is in contrast with the 80-90 per cent survival rate in developed countries.
However, there are several bright spots in childhood cancer management according to Balagadde, who says these cancers are curable once detected early and that children respond faster to treatment compared to adults.
She is also optimistic that with the designation of a childhood cancer ward on level four at the new UCI premises in Mulago, treatment and care will be greatly enhanced. The results are already manifesting.
Mulyagonja says deaths have tremendously decreased from about five per day to one or none a week since the ward’s operationalization in January 2015.
“The old ward was congested and mixed adults and children which made infections thrive. However, there is enough bed space for the children here. We only need more equipment to become fully functional,” said Mulyagonja.
Currently, UCI, which is the only centre providing free cancer treatment in East Africa, is in the process of being upgraded into a regional centre of excellence providing quality care and treatment, research and training.
Source : The Observer