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!