This is a slow process, but it was the tortoise who beat the hare, wasn’t it?

My first port of call has been the UK’s Childhood Eye Cancer Trust

You can see the summary I’ve put together about their site on my Resources page.

But the thing that grabbed me about this site was their commitment to kids. In words that kids can understand, the information officers have spelled out what retinoblastoma is, the various treatment options, and all about getting and wearing an artificial eye.

Juliette Carter, a support worker and information officer with the Childhood Eye Cancer Trust, informs me that she is in the process of updating the Kids’ pages. She thinks this will be done in about a month, so keep an eye out!

Kids have also written their stories on the site, and they’re just wonderful to read.

The direct link to the Kids pages is here

As I said, the process of building resources is slow, so bear with me. But if you have found a really good retinoblastoma resource that you’d like me to include, please drop me a line.

So for those of you who have subscribed to my blog, please resubscribe.

To make sure the new feed is active, leave doing this for about twenty-four hours from now.

I’m really keen to develop this site with a focus on retinoblastoma and stories of hope. I’m also going to include some medical information on retinoblastoma, as well as reliable and useful resources.

So have a look around and give me some feedback. What do you want from this site that I haven’t thought about? Drop me a few lines.

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.

Mary, an adult survivor, contacted me with her story after reading this blog. I’ve published it here with her permission. It’s a truly inspirational story.

My left eye was enucleated in 1951, when I was a year old.

Due to family finances, I had to work while attending a private high school, eventually paying all of the tuition myself. I was the first person in my family to graduate HS.

I eventually made it through college and grad school, commuted to work by motorcycle, raised my five kids, edited a literary magazine, reviewed music and theatre for a daily newspaper, and now work full time for a govt agency evaluating social service programs and designing and providing staff training to improve program’s outcomes.

I also teach part-time at a university.

I taught myself to play violin and piano, and have almost five years recovery from melanoma.

People say they admire what I’ve done with my life, which is when I think about the fact that I’ve had a pretty eventful 58 years.

My biggest problem resulting from RB is that I have a little trouble parallel parking.

People who like me say I’m determined, those who don’t call me pig-headed.

Actually, both are correct.

If RB had anything to do with my determination, it’s been a true blessing, the silver lining that overcame the cloud.

Mary’s story speaks for itself. Thanks for allowing me to share it with others, Mary.

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.

All parents can think about is that their baby has cancer, that he or she might go blind or worse, might not survive.

Cancer strikes fear into everyone. Retinoblastoma, like all other cancers, is insidious. It creeps up without warning. Retinoblastoma in particular is more terrifying because detection is based on parents and doctors knowing what to look for.

I’ve been reflecting on how I can help parents of newly diagnosed children with retinoblastoma. And what I’ve come up with so far is this: publishing stories from parents describing what they went through at the time of diagnosis, what they needed most then, and where they found help and support.

As a ghost writer for ocularists Paul and Jenny Geelen I’ve started this process. And the first story to be published on their site is my Mum’s

Although “Beyond the Red Door” included the impact of my diagnosis on my parents, I realised after writing Mum’s story that some really powerful bits had been left out. It was 1967 when I was diagnosed, and there wasn’t much known about the disease back then, let alone any sort of support. As you’ll see from the story, my parents were lucky; a chance encounter got them exactly what they needed to cope.

I’ve been contacted by some parents of recently diagnosed kids with retinoblastoma in Australia. They have raised the sad fact that there is little to no support in Australia. Not only do they want to find others in their position, but also to get current information on treatment options and research.

With this in mind, I aim to redevelop my site to provide more support to parents of kids with retinoblastoma.

Support doesn’t stop after diagnosis and treatment of retinoblastoma. It’s needed throughout the child’s growing years as everyone in the family settles into life after retinoblastoma.

If you would like to share your story with others, please contact me. I can help you put your story together, or you can write it yourself. I’m in the process of setting up a page on my site where all the stories can be published.

Just think about what you needed most when your child was diagnosed and what helped you get through that time.

I hope you get something out of my Mum’s story.