Five-year-old Isaac started school this year at a mainstream primary school, despite having lost an eye to retinoblastoma.

His Mum contacted me after reading Tyler’s story

She describes Isaac as excelling already, “a bundle of fun” and “taking it all in his stride”.

I’d love to hear other parents’ stories. If your child has been diagnosed with retinoblastoma and has started mainstream school, tell us how he or she is going.

Not long ago, I threw out the question of whether kids with retinoblastoma had more determination than others. You can read that blog here

Well, I found another heart-warming story - this time from my own backyard, Australia - that proves my theory about retinoblastoma.

Five-year-old Melbournian Tyler Fishlock is jumping out of his skin right now because day one of school is fast approaching. But as the Sunday Herald Sun reports, the contents of his school bag will be quite different to his classmates’.

Tyler lost both eyes to retinoblastoma. But his total blindness hasn’t slowed him down one bit.

Tyler has already explored his new school with the assistance of guide dogs, is practising with a white cane and has a braille computer. He’s all set for school and he’s ready to go right now. It must be hard for his parents to explain that the holidays aren’t over yet!

Tyler’s parents are understandably worried about how he will manage at school, and whether the other kids will accept him. No parent wants their child to be teased, bullied or left out in the cold. And the fear is that Tyler’s disability makes him more susceptible to this sort of treatment.

But my feeling is that Tyler will have lots of friends. Kids these days are more accepting of disability. Young kids in particular take these things in their stride.

And Tyler’s got a powerful tool on his side.

His total acceptance of his disability can only have a positive effect on his classmates and teachers alike. He just gets on with it and doesn’t let anything stand in his way. He’s already told his Mum that he won’t miss her because he’ll see her after school.

I’m sure Mr and Mrs Fishlock will have tears in their eyes when they see Tyler off on his first day at school. But those tears will turn into huge smiles when Tyler comes bouncing home full of the day’s events.

Tyler is just another stunning example of how kids with retinoblastoma possess incredible determination. Good on you Tyler! You are an inspiration.

Read Tyler’s story and check out the gorgeous photo.

If you are a parent of a child with retinoblastoma who is attending a mainstream school, I’d love to hear your story. Please just drop me a line. Your experience can help other parents.

A recent story reported in the UK’s Daily Mail featured an extended family who share a fighting spirit and a brush with life-threatening eye cancer.

Jarvis (aged 20 months), his father Andy (aged 41) and his grandfather John (aged 70) have all experienced retinoblastoma and carry the defective gene. Due to the treatment options available to each of them at the time of diagnosis, the outcomes have all been different.

Grandfather John lost both his eyes to the cancer when he was seven, whilst his son, Andy, lost only one eye. For baby Jarvis, chemotherapy initiated when he was three months old proved successful in treating the nine tumours in his eyes. But when a further tumour regrew, pioneering radiotherapy at Barts Hospital was used to eradicate it.

This Christmas, Jarvis and his family can relax as they open their presents because Jarvis is in remission.

But as I read this story, a strong theme of determination shines through.

Neither blindness nor partial blindness has stopped John and Andy from leading full lives. Totally blind grandfather John not only took to the ski slopes, but also installed his son and daughter-in-law’s central heating system by himself. And Andy, with the sight in only one eye, teaches dancing.

I’ve heard many stories like this one, where adult survivors of retinoblastoma have achieved so many things in their lives. Even the total loss of sight has not impeded them in any way. In fact, it has spurred them on to try harder, find more challenges.

So is there a link between determination and retinoblastoma? Which comes first? It’s certainly something that has been part of my life and has kept me going. I’d love to hear your story.

Whether you’re an adult survivor or a parent of a child with retinoblastoma, I’d love to hear from you. So please drop me a line.

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.’

Have I been avoiding summarising this chapter? Wel, not consciously, but now that I’ve re-read it, I think maybe my subconscious mind was steering me away from it. It actually brought fresh tears to my eyes.

“I had always promised myself that if I ever went blind, I would kill myself.”.

That’s the opening line of this chapter in ‘Beyond the Red Door’. But that’s not what made me cry. It was reliving the terrible day when my eye ruptured, a crisis that I’d never dreamed could happen to me.

I cried because of the many emotions I went through in the subsequent months as I battled to save my sight and my eye - fear, shock, despair, anger, hope, hopelessness. I’ll never forget the terror I felt when I went to an eye specialist, knowing something bad had happened to my eye. He said, as soon as he saw me: “My god, what have you done to your eye?” And that’s when the avalanche started.

At the end of the chapter, I’m facing the biggest decision of my life. You’ll have to read it to find out what it is.

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.

I’ve just written a blog on my other site about the question of whether a person would choose to have their sight restored if a) they’d lost it through accident or disease later in their life; or b) they were born blind.

Before you go and read it, I just want to make something clear here for parents of kids with retinoblastoma who may be struggling with the question of whether to treat their child’s cancer, and so save sight, or whether to have the eye removed. This blog is not about that issue. It stemmed from a radio program about the invention of artificial sight and what it will offer those people without sight. But it is interesting in terms of what the blind ‘can see’, and this might be a comfort for parents of retinoblastoma kids who have lost their sight.

If you’d like to read it, click here

Golly, where have I been? Back to the book!

I just reread this chapter and a vivid memory came flooding back. When I completed the first draft, this chapter wasn’t included. My agent then told me to “dig deeper”. So I sat down in front of the computer and thought about my darkest secret. I think I typed about a paragraph, then I left the room, tears rolling down my cheeks.

It took a few packets of chocolate biscuits to get this chapter down. I find it hard even to summarise it here. In essence, the shadow I refer to is the “retinoblastoma look”, the scars I was left with after losing an eye early in my life, and the effects of the radiotherapy on my bone development. Both these things changed my facial structure, something totally out of my control. But that didn’t stop the pain that I went through and the years of torment.

My desire to have my facial features returned to “how they should have been” sent me to a plastic surgeon for help. I showed him a photo of me as a baby and said, “I want to look like that, have that face”.

You’ll have to read the rest, but be warned, tissues are really needed here.

Four-year-old Kyra who was diagnosed with retinoblastoma in August last year, had more than one type of gift for Christmas.

Kyra’s Mum, Samantha, tells how a local church went out of their way to grant three wishes Kyra had made for Christmas, including seeing Santa. She expected to see Santa at a shopping centre, but was surprised when he turned up at her house.

But this wasn’t the only gift for Kyra and her Mum. Kyra, after having the eye with the cancer removed, was given the magical news that she was clear of cancer. Of course, she will ahve to be monitored for five years, but the news was just what the family needed.

Kyra’s Mum talks about the importance of support from friends and the community. I think this is definitely important for families of kids with retinoblastoma.

You can read Kyra’s story here

I was talking today with someone who was wondering whether to offer my book, ‘Beyond the Red Door’, to parents of a very young child with bilateral retinoblastoma. Their little girl has just had one eye removed and extensive treatment to the other eye. The treatment has been successful and it looks like her sight has been saved.
The concern was how much information the parents could handle at this very stressful time. And it’s a good question. My parents went through hell when I was diagnosed. Things moved very quickly and they had no control. How would they have felt knowing that retinoblastoma didn’t just end when the treatment ended and the tumours disappeared?
When thinking about this, I went back to the main message behind my book. And that is, there is life after retinoblastoma. I want parents of kids with RB to know that living with vision loss is ok, and even living with total blindness is ok too. I’ve had both, and actually found that since I lost my sight totally, my life has improved out of sight…sorry for the pun.
Yes, I do make people aware of the links RB has with secondaries later in life, but it is only a possibility. It is not a definite. I know adults with RB who are much older than me, and they’re fine. I think my reason for mentioning it in my book is to inform parents, so that they can act if they see anything out of the ordinary. My parents would have preferred knowing this extra information as they watched me grow up. So I can only hope that other parents would see it the same way.
But as I said, my main message is that kids who have had RB cope really well with limited vision and blindness. And the big difference is that the treatment these days is so much better than in my day and there are less side-effects.
Here’s something to make parents feel good. I’ve heard it said often - from doctors and other RB survivors - that kids born with RB are more intelligent than others. No idea why they think this, but I’ll buy it!