I live in South Africa and work in a call centre as a coordinator for a healthcare insurance company. I am mum to Neo and also have a daughter Thobeka who is now 17. Neo was a quiet boy – a real mummy’s boy. He would play soccer with his cousins, but he mainly liked painting and drawing and loved school. He had ambitions to go to university to study town and regional planning.
My story started in October 2023 when Neo’s leg became swollen. I thought he’d just fallen and hurt himself, but the local clinic said to take him to hospital where he had X-rays which showed an abnormality. He was then transferred to an orthopaedic specialist for a biopsy. I was told they wanted to talk with me.
It was such a shock. There was no way my child had cancer. Nobody in my family had cancer. I had to go and get some fresh air.
They told me it was osteosarcoma, a kind of cancer that was relatively common in teenage boys. It was now November, with Christmas coming up, but we were in hospital. I had stopped working in December and by January he was having chemotherapy and had lost his hair. He was so isolated and bored in hospital and missed school which he loved so much. I looked into home-schooling for him but it was too expensive. He ended up staying at home for a year.
In February I signed the consent form for him to have more Chemotherapy at an Outpatient clinic but it didn’t work, his tumour hadn’t reduced and he was now limping when he walked. We were referred to Umduduzi hospice where we met Dr Ambler, Tracey, Michelle and the social worker Pamela. This was our first contact with palliative care. Dr Ambler explained that palliative care is there to provide the human touch when a child is ill. They helped explain everything, were a companion for me and helped practically with transport and getting morphine when the Tramadol no longer worked for him.
When the hospital doctors told me he was at stage 4 and that the cancer had spread to his lungs I couldn’t understand all the jargon. I didn’t know anything, I was a parent. Dr Ambler came with me and explained what was going on and what it meant for the future.
They talked about amputation but I was against it as I worried about how he could go to school and stay in touch with friends. I was worried they hadn’t looked at the X-rays of his lungs as his breathing was bad and any movement meant he struggled to breathe. I didn’t think he would survive the operation. Dr Ambler talked it through with me and asked me what I wanted to do. She was like the ‘middle man’ between us and the hospital team. They also suggested that he could have radiation on his leg and lungs. I signed the consent forms for this and for three weeks he was going in for radiation every day. The travel bills were huge and I wasn’t working all the time so I was really grateful that Umduduzi helped with the transport costs.
In Africa, parents don’t talk about this kind of thing with their kids – they believe it’s only for adults. But I knew he’d only find information online which would confuse him. I hadn’t had serious conversations with him before. He had some counselling with the hospice social worker and he went on his own while I sat outside. It was a lot for him to understand the severity of his condition.
I felt so alone. Neo’s dad had passed away when he was three. I had my mum and sister nearby, but had moved out of my mum’s home. My daughter wasn’t coping well. She and Neo were so close, more like twins. I couldn’t pay her the attention she needed.
Neo insisted that he go to school, but some days I would get a call to go and fetch him because he was tired, dizzy and in pain. I was lucky that my employer was flexible and allowed me to take leave. This is not always the case with companies in South Africa.
We were referred to some NGOs that help children with cancer – Reach for a Dream who provide special days and treats for children with cancer and CHOC (Childhood Cancer Foundation of South Africa) which provides rooms for mums to stay in when their child is attending hospital with cancer. We had been staying together in this room but he got sick and the person at CHOC said they didn’t have the medical cover to be able to look after him and that he would have to go into hospital. It was hard because Neo wanted to stay with me. He was scared to be on his own and he was on a ward with babies and young children.
He got sicker while on the ward and the doctors told me the truth. Dr Ambler said she was surprised that they had suggested radiation as there was only a small part of his lungs that were not damaged and they weren’t strong enough. I’d been told it would treat both his legs and lungs which I thought was a good thing, but not that it might burn the only healthy part of his lungs. Nobody had told me this.
I was told to take him home with morphine. I had to go back to work so took him to my mum’s house. On 24th September, it was Heritage Day, he phoned me and said he wanted the airtime and data to watch videos online. I sent him the data to watch the videos and he said thank you. Later on I phoned him but he didn’t answer. My mum said he was sleeping. When I got home he was lying on the bed covers. He could breathe but he couldn’t get words out. His body was collapsing. We knew.
Dr Ambler suggested we phone all my family who wanted to see him and tell them to come if they wanted to see him. We made him comfortable, we gave him all the love. We had conversations with Dr Ambler about letting him go. I couldn’t let him go. He was holding on and it was the worst thing to know he was afraid to let go because he was scared of how I would be without him. But he was in pain and I had to let him rest.
After a week he was too weak to be taken to the toilet and was in diapers which was so hard for him. I’d left him at my mums and a cousin was looking after him as I had to go to work. I contacted the hospice arranging to send him there, since I was no longer able to look after him and needed to get back to work. It was 7th October. I came home from work. His sister was sleeping next to him. He woke up and I changed him, rubbed his body and laid down to sleep next to him. He held me and put my hand on his chest and then he let go of my hand and I knew he was communicating with me. I called in my mum and woke his sister. He took a deep breath and sighed. Then he was gone.
Nothing prepares you for it. I called the mortuary and had to watch them leave with his body in a bag. He was taken too quick. I went back home as I had to make arrangements for his funeral. I called and let the school know. They held a memorial for him that Friday. His sister cried so hard.
His funeral was held in the church and there were so many people there, we’d arranged a bus to bring people and the school also arranged a bus for all the children who wanted to attend. There were parents of children from his school. The social worker from Umduduzi hospice talked about our journey at the funeral. Everyone was crying.
Being a mum to a sick child is so hard. Every day you have to make difficult decisions, but make decisions like a blind person. I had to choose whether or not to go to work, whether or not he should go to school that day, whether or not to have treatment. It wasn’t normal at all.
It’s hard to say who I am now without Neo. I have good days and bad days. I play music, but I can’t stand hearing his favourite songs. It’s hard to see schoolchildren in their uniforms. I cry when I think about the little things we used to laugh about. I would ask ‘what would you do without me’ and he would say ‘absolutely nothing!’. That was a private joke just between the three of us. I never know what to say when people ask me how many children I have. People ask me ‘who’s that?’ if they see a picture of him pop up on my phone and it’s hard to know what to say. People often offer to meet up for coffee, to get out of the house but I haven’t been out with anyone yet and I feel like it’s awkward for them to be around a grieving person because they don’t know what to say. It can be overwhelming. I went to buy something to eat at the shop where we always used to go together, took two bites and couldn’t catch my breath the tears were coming so fast. Who knew just walking into a shop could do that.
His sister has now moved to Johannesburg to live with her auntie, I feel that it was a good decision to be surrounded by new people, a new healthy environment for her and not have to be stuck in the past with everything that happened in our home as a constant reminder of what happened.
It’s nice to talk about Neo and to remember him. I go to his grave often, on the anniversary of the day he died and on his birthday. It will be 2 years since he passed this October.
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