Part of my job in redesigning this website to provide information and support on retinoblastoma is to develop my resource page.

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.

In the past, I’ve blogged about the possibility of a link between retinoblastoma and determination

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.

The diagnosis of retinoblastoma is a shocking one.

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.