What you need to know:
- Childhood cancers, though relatively rare compared to adult cancers, are a stark reminder that no age is immune to the battle against this formidable adversary. With September being childhood cancer awareness month, we shed light on the stories of remarkable young warriors, strides in research and the crucial role of support systems.
Although childhood cancer is rare, Dr Fadil Geriga, a paediatric oncologist, says in Uganda, every year, there is an estimate of 3,000 child cancer cases. However, only 1,000 are diagnosed, leaving the other 2,000 to die in their communities. The survival rate is about 50 percent for the first year after treatment. The commonest cancers among children include leukemia, brain and central nervous system tumours, lymphoma, eye cancer as well as kidney and bone cancers (more common in adolescents).
General signs and symptoms include fever, anaemia, convulsions, deteriorating vision and handwriting, swelling of the affected part and white colour in the centre circle of the eye (pupil) as well as eyes that appear to be looking in different directions. Since the signs and symptoms of childhood cancers mimic those of common illnesses such as malaria, many of them are misdiagnosed.
“Since childhood cancers are not caused by one’s lifestyle, there is no screening programme targeting them. However, once diagnosed early, chemotherapy, radiotherapy and sometimes surgery yields good cure results,” Dr Geriga says.
The unseen battlefront
According to Beatrice Rukundo, a paediatric oncology nurse at the Uganda Cancer Institute (UCI), unlike many adult cancers, childhood cancers are unique in several key ways.
Kally was five years old when she was brought to the children’s cancer ward in 2021. She had lost a lot of weight and was too small for her age. She had abdominal distension, which caused her abdomen to expand. Her family members were stressed because they had gone to several hospitals and the child’s health just continued deteriorating.
At the cancer ward, doctors carried out baseline investigations such as CT scan, Xray, Ultrasound sound scan and blood investigations including liver function, kidney function and complete blood count.
All children are delightful but Kally was an exceptional one. She was jolly and brave according to Rukundo. After being diagnosed with cancer of the Kidneys, she had to undergo chemotherapy, radiotherapy and surgery.
“While on chemotherapy, the first lineof drugs failed, forcing doctors to put her on the second line of treatment. This was a tough moment for the family and us. The mother was very strong although the father was a little bit emotional,” Rukundo says.
“She braved through the side effects related to chemotherapy and radiotherapy treatments such as loss of hair, black nail beds, wounds in the mouth (mucositis) and severe loss of appetite with a smile. She was one child I was so attached to. I saw her through the journey and here we are, still moving. I have seen the arm of the Lord in her journey,” she adds.
Rukundo says although one of Kally’s kidneys was removed, she is now cancer-free.
In the beginning, she was monitored every three months for a year to help the doctors manage any relapse but now she has been placed on an annual follow up programme where doctors carry out occasional scans to monitor her progress.
Bridging gaps in access to care
Dr Nixon Niyonzima, the head of research and training at the UCI, says one of the biggest challenges in cancer care and treatment in Uganda for both children and adults is limited distribution of treatment centres. Many have to travel long distances to get cancer care and in the process, many give up as a result of the costs involved including transport, accommodation and feeding.
At the moment, there are only two private cancer hostels where critically ill children can be housed while receiving treatment. These include Kawempe Home-based Care and Bless a Child Foundation located in Makerere, Kampala. These, however, can only take on a few patients at a time.
The children’s ward has a bed capacity of 30 but on some days, the ward has more than 40 patients. Considering recommendations by the World Health Organisation, there is a lot of congestion.
“The system is overwhelmed but we plan to open up four new regional cancer centres in various parts of the country to help relieve the overwhelmed UCI and be able to accommodate the children as well,” Dr Niyonzima says.
Childhood cancers tend to be more aggressive than adult ones and by the time they are diagnosed, they have already advanced and typically need to start treatment right away.
Since their cancers are more aggressive, Dr Geriga says children with cancer need aggressive treatment, which makes them more susceptible to late effects that can surface months or even years after treatment ends. Such effects can include infertility, progressive organ damage, heart disease, diabetes and secondary cancers, which are life threatening.
“We usually discuss with the parents the possible side effects of the drugs that we use to treat the children. For now, because our survival rate is low, the resources are geared towards survival. After saving the life, we look at the quality of life they are likely to live after they are out of danger,” he says.
For the first two years after cancer treatment, Dr Geriga says, patients are closely monitored to catch any relapses. After this time, the risk of a relapse is low and so, focus shifts to looking out for any long-term effects the child may have suffered.
At the cancer ward for children, doctors and social workers take the children and their caretakers through the expectations of the cancer treatment, depending on the stage of the cancer. Social workers are also responsible for the emotional welfare of the patients and their caretakers. However, Dr Geriga says social workers are overwhelmed, with one social worker caring for more than 30 patients.
Many times, Rukundo says, she gets attached to her patients because they stay too long at the ward.
“One day a child asked if she was going to die. My heart bled knowing that her cancer had advanced but I told her that I would do my best but if I failed, she would be with the angels in heaven She managed a smile but when she finally died, I cried so bitterly,” she recalls.
There is a patient support group for parents and caretakers of children with cancer. In the association, they share experiences and encourage each other to support their children complete treatment. Many parents get discouraged when, for example, a child’s treatment lasts more than two years.
Childhood cancers represent a formidable challenge, but within the hearts of these young warriors lies an unbreakable spirit. Through advancements in research, unwavering support from families and communities, and the collective efforts of medical professionals, we find hope for a brighter future. Together, we stand united in our commitment to eradicate childhood cancers, one breakthrough at a time.