His family and teachers at a Grahamstown private school, where he is a border and a Grade 4 pupil, didn't think too much of the illness, but took him to a local GP anyway. After he was prescribed medication for what the doctor thought was a stomach bug, his condition wouldn't get better. Instead his health deteriorated so much that within a few weeks, he was unable to walk straight due to poor balance and was unable to do simple things such as hold a pen.
Therapists and psychologists had to intervene as his vision was affected too.
Fast forward to this month, Nhlakanipho is now undergoing cancer treatment at Red Cross Children's Hospital after he was diagnosed with a brain tumour.
Speaking from the Choc Childhood Cancer Foundation House in Plumstead, Cape Town, where children with cancer and their families are taken care of – Nhlakanipho’s mother, Ukho Zita recalled how her world suddenly changed when her youngest child was diagnosed with cancer.
“I started thinking what if something worse happens. When someone says cancer you think it's the end of the world. I honestly didn't know much about it. I would hear about so and so's mom or granny, and I always think of breast cancer, but never personally thought kids could get cancer. It was quite a shock for me,” she said.
Nhlakanipho’s condition is receiving attention this month as March is Brain Tumour Awareness Month. Not only is brain tumour one of the commonest childhood cancers, but it is widely believed that its research is a critically underfunded area of cancer research.
While some children may survive only a few months from diagnosis, some brain tumours are curable, using aggressive treatments including surgery, chemotherapy and radiotherapy.
Going through cancer treatment, which includes radiation and chemotherapy, has probably been the most difficult journey for Nhlakanipho so far. Side effects of treatment include hair loss, nausea, vomiting and loss of appetite.
But thanks to the support that he gets at Choc, he doesn't have to walk this journey alone. The foundation, which was established as far back as 1979, is a support group to parents of children with cancer, by parents of children with cancer.
Their aim is to ease the burden on parents facing the same journey by providing access to relevant, accurate information, as well as emotional and practical support. It is the only organisation that provides nationwide physical and psychosocial support to children with cancer and other life-threatening blood disorders.
Zita recalled how apprehensive she and Nhlakanipho were when they arrived in Cape Town early this year, with no relatives or friends in the city.
“When I got here I didn't know where to stay so I booked a Bed and Breakfast as I didn't know how things worked in Cape Town. I didn't know how long we would be staying here as everything depended on Nhlakanipho’s recovery. But thanks to Choc...they've made our experience in this unfamiliar environment so much better. You feel the kindness and support... It's great for a mother,” she said.
Zita said positive stories of other cancer survivors is what kept her and Nhlakanipho going during this difficult and uncertain time.
“You know when your child is sick there is a lot going through your mind. Child's mood changes, your mood changes. It is the support of people beside you that helps. Here you hear lots of positive stories and how to deal with side effects of cancer treatment. If I was at home, I probably would have no one to talk to... no one to make me feel better, or give me hope. You want to hear positive stories when you in a situation that we are in,” she said.
Zelda Jacobs, communications manager for Choc Childhood Cancer Foundation SA, said while many cancers in adults were linked to lifestyle, things were different with children as their cancers were not linked to their lifestyle.
The most prevalent childhood cancer is leukaemia, followed by brain cancer and a variety of other tumours. Sadly the incidence of childhood cancer is growing. According to the World Health Organisation (WHO), the incidence of childhood cancer globally is around 160000 new cases each year. In developed countries like the US, UK and Japan, eight or nine out of 10 kids survive to live productive and meaningful lives.
The survival rate in the UK, for example, has increased from 10 percent 40 years ago to 90 percent today.
In contrast, the survival rate of the most common childhood cancers in South Africa is only 52 percent. Jacobs said while the SA treatment success rate was not as great as in the developed world, it was however, far better than other developing countries “because our children, thankfully, can be referred to paediatric oncology units at state-funded academic hospitals”.
“Unfortunately in many cases the cancer in most of the children referred is already in advanced stages, which significantly reduces the chances of survival,”Jacobs said.
The South African Children's Cancer Study Group (SACCSG) has developed a set of early warning signs for childhood cancer, which has been adopted by the International Society of Paediatric Oncology.
Leaflets detailing these early warning signs are available from Choc as part of the organisation’s Awareness Programme, which includes training health care workers.
To date Choc has trained 18 000 people, which has led to a noticeable increase in referrals.
* To get more information on childhood cancer in SA, you can visit: www.saccsg.co.za/SACTRegistry.