Looking forward to a bright future
Posted on 19 September 2016
Until it struck her baby boy, Mpilo, cancer was a completely foreign concept to actress, TV presenter and entrepreneur Phumeza Mdabe.
When he was born three years ago, Phumeza Mdabe’s little boy, Mpilo, had black irises. Phumeza and her husband, musician Mnqobi ‘Shota’ Mdabe, noticed his startlingly dark eyes but they weren’t overly concerned as her pregnancy and the birth had been normal.
‘We assumed his eye colour was going to change. We even thought it was perhaps a DNA thing as my father is white,’ says Phumeza. ‘We also noticed that when we took a picture the flash would make his eyes appear white on the photos instead of red, but we didn’t think it was a big deal.’
Despite developing normally otherwise, Mpilo became squint and showed signs of poor vision around his first birthday, so Phumeza and Shota decided to take him to an optometrist.
At first there was no reason for alarm. ‘The optometrist told us the bridge of his nose hadn’t developed fully and when it grew it would rectify the position of his eyes and we should come back in three months,’ says Phumeza.
But something didn’t sit right with her because it became apparent that Mpilo’s vision was not improving – in fact, it was deteriorating. He was feeling his way around the house instead of moving freely. At their follow-up appointment the optometrist diagnosed a possible cataract and sent them to a specialist.
They had no idea their lives were about to change dramatically.
Watch Phumeza Mdabe share her son Mpilo’s story
‘Your son has eye cancer’
Mpilo was diagnosed with a rare form of eye cancer called bilateral retinoblastoma. Phumeza recalls, ‘The doctor was very straightforward with us and we appreciated that. It was really the only way to tell us because at that point we didn’t know if it had spread to the brain or anywhere else. It was such a shock. It felt as if a hole had opened in the ground and we were being pulled into it – it was horrible.
‘At the time, we didn’t even know what cancer was. We knew of it, of course, but we didn’t know how it worked… for example, that it was a tumour. We thought cancer was something in the blood. We had so much to learn. We feared he would be taken from us in a short space of time.’
The next day Mpilo went for an MRI scan and the results showed that the tumour in each eye hadn’t spread. But his right eye needed to be removed as that tumour was large and near the optic nerve, which goes straight to the brain.
‘The doctor was going to try to save the left eye but there was no guarantee,’ says Phumeza. Surgery was scheduled and the first of six rounds of chemo began immediately.
‘We were very surprised to learn that children can be treated with chemotherapy,’ says Phumeza. ‘The oncologist explained everything to us. Even if they did save the left eye Mpilo would still have to go to a special-needs school because his focal vision was gone – the tumour was right in the middle of his eye so he had only peripheral vision. But we realised that was at least better than nothing at the time.’
Little tough guy throughout his entire cancer journey Mpilo has constantly amazed his parents. Phumeza remembers, ‘During chemo he didn’t lose his hair but he vomited a lot, then five minutes later he’d be playing – he’s that sort of kid. He doesn’t want to be in bed, he wants to get out there. He has an indomitable spirit!’
After the first round of chemo, Mpilo had surgery to remove his right eye. ‘That was daunting because we thought, What are we going to see when the bandages come off? It was also scary for his siblings in our blended family – I have a daughter and my husband has two sons. But we didn’t hide anything from them. We explained that we had to do this because we wanted to save him. Of course it affected them but Shota and I supported each other to make sure we were always there for all of our kids. We found the right balance and we were in it together.
‘We were warned that the days immediately after the operation would be tough on us. The surgery was painful as they had to cut the muscle inside the eye so Mpilo would be heavily sedated. And yet he was up the next day, playing as if nothing was wrong,’ Phumeza smiles. ‘He would cry because of the pain, we’d give him his medication, then he was fine again and off he went.’
Phumeza initially panicked at the thought of having to deal with a prosthetic eye, especially when doctors cautioned her that Mpilo was likely to take it out and play with it, but she coped better than she’d imagined. She says you develop a sense of humour about these things and that’s a great coping mechanism.
‘You freak out the first time but you get used to it and we’ve now taught him not to play with his eyes!’ she laughs.
The tumour in the left eye didn’t respond to chemo so the family travelled to Cape Town from Johannesburg for specialised radiation treatment. This would turn out to be some of the most challenging times they had to face.
Phumeza remembers, ‘They had to create a gold cap that went into his eye for the radiation. He was in isolation for a week. Out of the whole experience I think radiation was the toughest of the lot. I didn’t think babies or toddlers could get depressed, but I think Mpilo did for a while because he wasn’t talking or playing. He would just sit quietly and put his head on my chest. I literally cried for a week because I thought, What do I do as a mom? How do I help my child and make this better? It was so tough.’
When doctors revealed that the tumour hadn’t responded to treatment, Phumeza knew there were more difficult times ahead. They continued with laser treatment for a few months but still the results were not positive.
‘In the end, the doctor gave us a week to make a decision on whether to remove the second eye because the tumour was growing quickly and if it got to the brain there would be nothing they could do.’ It was an agonising choice but it felt like the decision had already been made for them. Her husband took a night to mull it over, but they both knew the answer. ‘We just wanted to save his life,’ Phumeza says.
Remarkable recovery And so the left eye was removed. This time Mpilo’s recovery was just as startling as the first time, even though he was now completely blind. ‘He was so strong! He was walking around the house within a day,’ says Phumeza. ‘It was like he was already used to it. We realised he’d probably lost his vision a long time ago. He knew his way around the house. You’d think he was going to bump into something but then he’d turn just in time to avoid it. Amazing!’
In October 2015 Mpilo was declared cancer free. Phumeza says, ‘When you’re faced with something like this you think you can’t do it. But then you take it one step at a time and when it’s over you wonder how you got through. But you do. I think Mpilo is the one who gave us strength because through it all he has been so strong.’
Working mom When Mpilo was diagnosed, Phumeza took a year off to look after him. Once he was cleared she went back to work. She is starring in the e.tv drama Heist, she’s completed filming season two of the SABC1 sitcom Ithuba Lokugcina, she has an events company that does wedding planning, she is studying towards a media degree and manages Shota’s record label. ‘I’m making up for lost time!’
She is also an ambassador for the Childhood Cancer Foundation of South Africa (CHOC) and very passionate about her work with them. ‘As a person with a public profile I think it’s my responsibility to share my experience, especially because we didn’t lose Mpilo, which is something to celebrate every day. I want to raise awareness and clear up some of the misconceptions. I feel this happened for a reason, even if it’s to save just one other child’s life.’
‘Mpilo loves playing ball with all his heart,’ says Phumeza. ‘He’ll take the ball and throw it, then someone has to go and fetch it and bring it back to him. This has taught us all a lot of patience and to be more loving because we have to remember this little person is a bit different from the rest of us.
‘We suspect he’s going to be a musician like his dad because he sings on key and loves going into the studio with Shota and pressing the piano keys. He also beatboxes and does other things that three-year-olds generally aren’t able to do. He’s perfect now – it’s just that he can’t see. He’s naughty and mischievous, just like any other toddler. He’ll hear someone get up from their chair, then he’ll run and sit there. It’s like his personal little game,’ laughs Phumeza.
Mpilo starts at a special playschool in the new year and Phumeza and Shota are considering sending him to Prinshof School for the Visually Impaired in Pretoria.
• Childhood Cancer Month is marked around the world in September every year to spread awareness of this heart-rending disease.