Kaye Garwood's son Greg was diagnosed with unilateral Rb in 1987. She felt it was important to share her experiences with others and offer help where needed. Here, she offers advice for parents in a similar situation.
My son Greg reached the age of 21 when I thought it would be nice to share with CHECT readers some of his life experiences.
Greg, the "baby" of my four children, was diagnosed with unilateral retinoblastoma in June 1987, when just two years old. There was no family history, I had never even heard of eye cancer, and to say it was a devastating blow to the whole family is an understatement, as any parent with a child with Rb will know.
His right eye was enucleated, with thankfully his left eye remaining unaffected, with perfect sight. However, just three months after the enucleation we noticed that he was struggling to see distant objects and returned him to Moorfields, fearing an occurrence in his left eye. Although relieved that there was no sign of cancer we were again devastated to learn that, almost overnight, he had become extremely short sighted in his remaining eye. This was a very cruel blow. I'm sure most parents who have had a child with Rb will understand the feelings of helplessness and fears we had for his future.
Around this time I was befriended by the mother of a 30-year-old young man with unilateral Rb. She gave me possibly the best piece of advice I have ever been given, and one which I would like to share – that children are extremely resilient, will not only cope but go on to have "normal" lives (whatever that is!), and that it is the parents who do all the worrying.
Most importantly, she said that if she could have had the vision to see into the future she would never have worried about her son as he had excelled at school, gone on to university, married and now had his own children.
She felt that she had wasted so many of his precious growing up years trying to over-protect him and, in doing so, spoiling his enjoyment of his childhood.
Now that Greg is 21 I would very much echo that advice. Particularly in the early days I had so many sleepless nights imagining the difficulties Greg may face in his life – none of which he actually did!
During Greg's growing up years I forced myself to be very firm with him regarding using his lack of vision as an excuse; for example, if he was last on school sports day it was because he couldn't run very fast, not because he couldn't see as well as the other kids.
To his credit, he has never attempted to use his limited sight to his advantage and will attempt anything, usually doing it very well. As an adolescent he always beat his older brother on the go-kart track, taking corners at a speed which gave me a few grey hairs! He's also a talented footballer, playing for his school when younger, then the local village team and, more recently, for his university.
Despite my fears that Greg would be teased at school because of his artificial eye, the only names he was called related to him wearing glasses – Harry Potter has a lot to answer for - all pretty normal kids' stuff! After many discussions – some may say arguments – he progressed to contact lenses when he was 15, with strict warnings about hygiene and looking after the lenses. As his mum, I never cease to worry, insisting he take medicated baby wipes with him when he camped in Germany during the World Cup, as hygiene wasn't exactly top of the agenda.
He left Bristol (UWE) University with a 2:1 degree in business studies, having enjoyed a self-confessed riotous, alcohol-fuelled three years.
He will be able to have a normal driving licence, with no restrictions as his vision in his remaining eye is good provided he wears his contact lenses.
Greg is a good looking, confident, talented young man who any mum would be proud of. I can honestly say that, these days, neither Greg nor myself, or indeed anyone who knows him, gives any thought to the fact that he has an artificial eye – he is just "Greg".
If I could offer one piece of advice to any parent of a newly diagnosed child it would be to treat your child as you would any other – don't be over-protective and wrap them in cotton wool, teach them to be independent. Being partially sighted isn't a disability to a child – it's a challenge to be overcome! The hard bit, as parents, is allowing them to overcome that challenge!
If any parents ever need to talk to somebody I am very willing to be contacted and can be reached via CHECT.