Where to Turn When Retinoblastoma is Diagnosed

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.

Posted in Retinoblastoma, Support. Permalink for this post: permalink. If you are a Digg user, please  Digg this post. If you use use Del.icio.us, then add us in:  Del.icio.us

What do you think?

Leave a comment! Or send a trackback from your own blog.

RSS