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.’

Sam Valavanis, from Patterson Lakes in Victoria, is undergoing surgery today to remove his remaining eye after a long battle with retinoblastoma.

I feel a connection with Sam and his family because it was his Mum, Lisa, who contacted me to help them with their fund-raising event in April this year. Lisa had read my book and wanted a copy donated for either raffling or auctioning to raise money for the ‘Beyond Sight’ group.

Lisa told me about the long and emotionally-draining battle they had all had over the past four years to try and save Sam’s sight. Sam has had numerous treatments. In Australia, Melbourne is probably the best place to be in terms of treatment options for retinoblastoma. As I read about Sam’s ordeals, my heart went out to his parents and the suffering they were going through. Lisa knew this day was coming, the one where Sam would have his eye removed, and so set out to make Sam’s last visual days memorable for him.

In this news story there is a picture of Sam on Puffing Billy, his last visual adventure before going into hospital.

I can just feel Sam’s parents agony on this day. It is undoubtedly a parents’ nightmare, but one they have no control over. Although I know that living without sight is not as bad as it sounds, if I were in their situation, I would feel the same for my child.

So today, my thoughts are with this brave little boy and his family.