Eddie's Nintendo

'Little Edward' was a big child. I mean he was really huge; he had men's size 12 feet when he passed on at the age of eleven! When he was four years old I would wear his Ninja Turtle sneakers for a laugh. He thought it was hilarious, seeing his adult sister stomping around in a pair of kiddies' shoes!.The reason we still think of him as 'little Edward', is partly a little family joke and partly because, for all his massive size, Eddie had the softest heart. He tried rugby at school, but he stopped very quickly. It was too violent, and he could get hurt. He didn't like anybody being hurt; it really upset him.

How tall he was at the end, I don't know, but I remember he towered over me before he lost the ability to walk. When he became ill, his size became a real difficulty, mostly because no-one except my mother had ever had to deal with an eleven year old child the size of an adult. She was the only one who could move him from the bed to the wheelchair or bathe him without causing him an agony of pain in his leg.

Tygerberg Hospital being what it was, there was no way he was going to be able to explain this to the orderlies who had to move him from his bed to a stretcher so he could have an X-ray done. The language barrier was too huge, the problem too complicated to explain in a few words.

I knew none of this, as I could only spare a couple of days a week to be with him, whether he was at home or at the hospital. Mum and I visited with him for a little while, and then the nurse came in and told him he was going for an x-ray.

He didn't cry, or even protest, although he could sometimes be very vocal about what he wanted. He had been playing Mario Brothers on his Nintendo, and he passed it to me. He'd let me borrow his pride and joy a couple of times and I was quite into the game by now.

'Play on with my game, please?' he said to me, 'I have 6 lives, so you should be able to play for a long time. Don't lose my lives though, ok?'

'Ok,' I said, surprised. This wasn't normal. Usually he wouldn't let me near his game.

'Now go into the waiting room and don't stop playing, ok?'

'Ok,' I said, and obeyed, wondering what he could be up to.

I saw the two orderlies walk past pushing a stretcher between them, but I played on, as ordered. A couple of minutes later Eddie started to scream at the top of his lungs. I cannot describe to you what it felt like to have to sit there, with my bum glued to the chair, and not cry because I had to keep playing, listening to the sounds of raw agony coming from this child I wanted to protect with all my soul. I cannot, for a moment, imagine what it was like for my mother, his mother, standing next to him helpless in that room while the orderlies dragged his huge frame onto the stretcher.

My shoulders were heaving, and I was gulping in air, trying not to start screaming myself. I wanted to run in there and stop them but I couldn't, I had promised to keep playing. I knew at that moment that his giving me the game had been entirely conscious and calculated.

He was protecting me from his pain.

How is that possible? How did he know to do that? How could it be that he was thinking about me in that moment? I just don't know, I have no answers... 

Maybe a small part of Eddie's purpose was so that I could write his story, so that you could understand a small part of the reality that is childhood cancer. It's ugly, and it's tragic, but there are beautiful bits too; like the bright red little cherry tomatoes that grow on a rubbish dump. And, it's a story that has to be told. Children like Eddie, like Xuane, like Reef, and like little Estiaan who passed over recently, they all need a voice so that the world can understand that they are real children, with real families. Their suffering is real, and so are their triumphs.

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