Turning Nightmares into Dreams for Kids with Cancer

Yesterday, I was presenting at a disability awareness training session for senior local government officials. As I always start my talk by giving a bit of background about my medical history - the fact that I’ve had bilateral retinoblastoma - I thought I’d take along some copies of my book, ‘Beyond the Red Door’. I’ve learned to be better prepared for these events: at the last one, some of the participants wanted to buy my book and I had none with me.

At the end of the two hours, when everyone was drifting out of the room, a lady approached me. Her friends had a three-year-old girl with bilateral retinoblastoma. She wondered if it would help the parents to read my story.

We talked about it, the fact that treatment has changed so much over the past forty years since I was diagnosed with the eye cancer, but came up with one vital bit of information that all parents can learn from me. And that is this.

Life does not end after retinoblastoma, even if all sight has been lost.

This lady wanted her friends to know how much I’d made of my life, that blindness wasnt’ getting in the way of what I really wanted to do.

It made me reflect on how difficult it is for parents to watch their children go through treatment, endure the many hospital admissions, the needles, the surgery, the medicines, the eye drops. And how much harder it must be for them if the battle with the cancer is lost, and their child loses both eyes.

Yet, for the child, being blind is not that bad. In fact, kids adapt so wonderfully to change.

The epitome of this is Tyler’s story After a fifteen-month battle with retinoblastoma, Tyler lost both his eyes to the cancer. And sadly, for Tyler, the treatment left him with a hearing impairment.

But Tyler isn’t sad. Convoy for Kids an organisation in Australia that makes kids’ wishes come true, sent Tyler, his Mum, Dad and older sister, to America for a fun-filled holiday. And as you’ll see from the story, Tyler made the most of it.

Tyler’s favourite colour is blue. When he was having his prosthetic eyes made, he asked for them to be blue, a change from his previous eye colour of brown. When they were fitted, he asked for a mirror so that he could see how handsome he was.

It’s stories like these that must help parents when they are feeling at their lowest.

Let’s hope.’

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