Sample Chapter

Chapter One: Waiting and Watching

In some ways it’s probably a lucky thing that I was born with cancer. If the tumours had started to grow later in my life - say at age three or four, or even eight or nine - I would have been aware of the many things that happened to me, as well as being witness to the effects on my parents. I would have watched the blackness creep stealthily into my world as the tumours multiplied in my right eye, robbing it of all vision. I would have sensed the shock and great sadness of my parents when the diagnosis was made. I would have stood by helplessly as my mother grew thinnner and thinner and my father more distracted and worried. Maybe I would have shared their fear of death. As it was, the only thing I might have been aware of as a thirteen month old baby was the frustration of bumping into invisible objects on my right while crawling around on the floor.

I was born with a rare form of cancer called retinoblastoma. It is a hereditary condition, caused by the mutation of the retinoblastoma gene. Such a mutation triggers the growth of cancer cells on one or both retinas of the eyes. Being an adopted child, it was impossible for the doctors to say why it had happened, but they decided it was just a freak of nature, a spontaneous mutation. The disease had infiltrated both my eyes. My right eye was riddled with tumours and beyond saving, and my left had four tumours. To confirm the diagnosis that the lesions were indeed malignant, and therefore life-threatening, my right eye had to be removed and a biopsy performed. Although this eye was totally blind, the impact of losing it was not lessened for my parents. I would receive my first of a series of artificial eyes once the socket had healed, but would have to wear a patch in the meantime.
But there was no time for waiting, no time for coming to terms with it. If the tumours were malignant rather than benign, it was only a short distance for them to invade my optic nerve and my brain.

They were.

Because the cancer was so advanced, the doctors held little hope for my survival. A decision had to be made quickly about how to treat the tumours in my remaining eye. The simplest solution would be to remove it as well. But such a traumatic procedure was felt to be pointless and cruel if the cancer had spread and the predicted outcome was right. And there was just a slim chance, a small speck of hope, that the cancer might be beaten. With that hope as a focus, an intensive course of radiotherapy was proposed so that not only my life, but also maybe some of my vision, might be saved. Even then my chances of survival would only be about one in four.

Finding out that I had retinoblastoma naturally was a great shock to my parents. But for my mother, an unnerving sense of deja vu was aroused. Before I was born, a story on the television news had caught her attention. The story had been about a child with this rare cancer, retinoblastoma. It had touched her so deeply, triggering such a strong desire to know more, that she had taken several trips to the library to do some research. NO other story about children’s medical conditions had ever caused her to respond this way.