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!

It is well known that retinoblastoma is prevalent in third world countries. In my surfing on the net, I’ve come across discussions on developing affordable treatment for patients in these countries.
In Tennessee, the Hamilton Eye Institute is preparing to host an international conference on retinoblastoma for third world countries. At this stage the news release states that Brazil, India and Jordan will be attending the conference.
I know Africa has a huge incidence of retinoblastoma. I only hope the benefits from the conference will reach countries that can’t attend.

The January 3 issue of the Journal of the National Cancer Institute contains the results of a new study examining the links between hereditary retinoblastoma and secondary cancers. This article emphasises the need for survivors of retinoblastoma to be monitored for specific future cancers. This study focuses on the increased risk of soft tissue sarcomas, particularly where the patient has had radiotherapy. For people treated by other therapies, there is not such a risk.
You can read a news release on the study here
I no longer feel alarmed when I come across research such as this. My belief is that it is better to be informed, rather than to be totally unaware of what might happen to my health in the future.
This subject brings me to a later chapter in my book, ‘Beyond the Red Door’, so I’m jumping ahead. I was in my early thirties when I first discovered the connection between retinoblastoma and secondary cancers. How did I find out? By chance, while I was surfing the internet. Naturally, this sent me on a hunt for more information, and to establish a monitoring system for myself, to alert me to any signs of developing tumours.
This is the ticking time bomb I refer to at the end of chapter one.
Why didn’t my parents or I know about it? In Australia, anyway, the same response seems to come up: because doctors dont’ want to alarm their patients. When I started on my mission for the truth, I came across this sort of response: “You’ve got just as much chance of developing cancer as anybody else - why worry?”
Not true. Specialists in the field in other countries, such as in America and the UK, don’t hold back on stating that the risks increase as retinoblastoma survivors get older. Together with this information are brochures and fact sheets on how adult patients can monitor themselves, and what to look for.
As I said, learning about the types of cancers I could get, and I emphasise could, doesn’t depress me. The advice I’ve been given is to watch out for melanomas (skin cancers) and breast cancer, as well as cancer in the radiotherapy site. Reading this study has extended the list of possible secondary sites for me. But forewarned is forearmed. We all need to watch our health…retinoblastoma survivors just have to watch a little bit more closely.

I came across a blog post by Jacki Donaldson which emphasises the need to firstly know your family medical history, and secondly, tell your doctor about it.
In particular, this blog post relates to cancer. It made me think of two things.
Firstly, I remembered a recent conversation with a friend who was born with retinoblastoma, the same eye cancer as me. He had two children, neither of whom developed the condition, and they were monitored very closely right from the time they were born. What happened later on was a shock to him. One of his grandchildren was born with the condition. The tumours were picked up when the child was only five months old. It was lucky they were looking out for it, but they didn’t really believe that retinoblastoma could jump a generation. On doing more tests on his children, it was discovered that his son, the father of the RB child, carried the gene. This story shows just how important it is to know your family’s medical history, right back as far as you can go.
The second thing it made me think about was my parents’ reactions when they found out I had RB. They wanted my natural parents to be told, just in case they had other children, for one thing. Well, it didn’t turn up amongst any of my half siblings, but now I know this doesn’t necessarily mean one parent wasn’t a carrier, and that someone else in my family could be. The likelihood is probably very small, but it can’t be ruled out. Adoption always makes these sorts of issues so much more tricky to deal with, and there’s not always an easy answer. And adoptees aren’t the only ones to have these sorts of issues; children born from sperm donation also have this difficulty.
It was easy for the doctors to declare to my parents at the time of my diagnosis that the chances of my natural parents having a child with the same condition were unlikely, because they thought I was the start of the chain. But in reality, this was a poor decision. At the time, though, the technology was not available to do DNA testing to determine if someone was a carrier. So there was no other option at the time.

Imagine the array of emotions parents go through when their baby is diagnosed with cancer. Now add to that the fact that their child is adopted, and that this condition is genetic.
IN the first chapter of ‘Beyond the Red Door’, I focus on the time when my cancer was diagnosed. Of course I have no memory of what went on, but my parents certainly did. For them, it was a harrowing time, watching me undergo intensive radiotherapy, waiting to see if the tumours would shrink, wondering if I would live. Amongst all this, they wondered if my natural parents should be told. I was their child, after all - the child of my natural parents - and they had a right to know. My parents have always had a high regard for the parents who gave me life; they’ve never been scared of losing me.
In the rest of the chapter, I reveal my memories of the many trips to hospital to check on the tumours, to make sure they didn’t come back. And this went on for five years, years I have strong memories about.
But even when I am given the all clear, more is yet to come.
Stay tuned for chapter two.