Jill Shaw – My Baby Has Retinoblastoma

A Parent’s Story From the 1960s

My thirteen month old daughter – the youngest of four children – was diagnosed with bilateral retinoblastoma before Christmas 1967. In one way, it was a shock. But in another, it was like deja vu.

Things happened really quickly after we’d seen our GP to find out what was wrong with Janet’s right eye, which was slow to track. He immediately referred us to an eye specialist.

After one look, the eye specialist expressed his concern that the eye was blind and needed to be removed straight away. He suspected it was something serious. I think he mentioned a tumour at that time.

The eye specialist asked us to phone him on the Saturday morning after the enucleation for the results of the biopsy. My husband made the call. We were asked to come in to his rooms the following Monday morning. This is where he told us that Janet had retinoblastoma.

I remember thinking that I knew something about retinoblastoma. Some months earlier, there’d been a story in the newspaper about a young girl who’d lost both eyes to retinoblastoma. She’d gone to Melbourne for radium implants to treat the cancer, but at age three, had lost both her eyes.

That story had sent me to the medical library to find out more about this childhood cancer. I don’t know why, but it just intrigued me. I’d never been so interested in stories about childhood conditions and diseases before.

It was a traumatic time for our family. A few days after Janet’s eye was removed, my husband was picked up on the way to the hospital for speeding by a traffic policeman.

In those days, police rode around on motorbikes watching out for traffic infringements. When my husband was pulled up, he broke down in tears, telling the police officer that his little girl had a terrible eye cancer.

Coincidentally, this police officer knew a family whose daughter had also had retinoblastoma. Not only did he give my husband contact details for this family, but also an escort to the hospital. And straight away, I recognised the family name: this was the family with the little girl I’d read about in the paper.

In those days, there was no expectation on the medical system to provide anything other than treatment and surgery. Janet’s specialist was very concerned about her, but he was all we had and we didn’t ask for anything else. We didn’t even know about artificial eyes.

We waited till after Janet had finished her radiotherapy treatment to her left eye before contacting the family of the little girl with retinoblastoma. The parents invited us to come and meet their daughter.

We were so impressed with her. She was running around, and was very chatty. She moved around by clicking her fingers in front of her. She was ten years old at the time and attending school. I asked her what her favourite subject was, to which she responded, ‘Art’.

We both felt really relieved when we came away from that visit. At the time, we thought Janet would lose both her eyes, so seeing this little girl running around really eased our fears.

But when Janet was undergoing her radiotherapy, there was no support at all.

My husband and I made the daily trip to the hospital for six weeks after farming out our other three kids to neighbours and friends. The waiting room was full of young children and babies, all awaiting their treatment. But I never connected any of them with our situation.

One day, I was quite teary and a woman next to me asked me what was wrong with my baby. I told her she had cancer. I was brought up short when she replied, “that’s what all the kids here have”.

The waiting room at the radiotherapy clinic wasn’t the place to gain support and make friends. Everyone was so absorbed with what was happening to their child. It wasn’t a fun place.

I think we were extremely lucky that my husband was picked up by that traffic policeman. His kindness ended up giving us the emotional support that we needed at the time.

[Note: Jill’s daughter Janet Shaw is a client of Paul and Jenny’s. She has written a book about her experience as a child with retinoblastoma called “Beyond The Red Door”. You can read about the book at the Beyond The Red Door website, and about Janet’s motivational presentation services at JanetShaw.com – Janet also helps Paul and Jenny prepare content for their website.]