Mum Melanie Cassidy reveals how, with the help of some cuddly friends, her son Edward took to his new eye like a duck to water…
Edward was 19 months old when he was diagnosed with unilateral retinoblastoma. A week before the operation to remove his right eye, I was met by a lovely lady from CHECT, who gave Edward a toy dinosaur called Dino with a very special “magic” eye that could be removed.
Just a few hours after his surgery, Edward was happily playing with Dino. He also had a favourite teddy who, along with Dino, had a bandage over his eye. When we were discharged, Edward and pals had the bandages removed and they all had their eye drops administered.
Dino and Teddy always went first and they were always happy with it, so Edward was too. It’s a brilliant way to demonstrate to your child that the toy is making the same journey as them and that they are not alone.
Only a couple of weeks later Edward removed his conformer. The first time this happened, I was a little perturbed by it and off we went to our local emergency eye department, where they kindly put it back in and showed us how to do it ourselves if necessary. Of course the whole gang came along, and again Teddy and Dino were not bothered by it so neither was Edward.
When this happened again, a mere two days later, I realised that I’d have to deal with it myself and, without making a fuss, I just popped it back in. I took Edward’s lead – I couldn’t let my emotions get the better of me when he was so unfazed by it. At the age of two he was showing a strength that I could only copy.
When Edward went to get his artificial eye fitted he happily removed his conformer. We were told to clean his new eye regularly and of course we practised on Dino first. Luckily Dino never cries or gets upset, so Edward decided he wanted to clean Dino’s and his own eye himself. From then on, Edward always cleans his eye at bedtime along with brushing his teeth, and it’s part of the normal, daily routine.
Edward hasn’t always been a perfect angel. He once thought the lady at the check-in desk at Manchester Airport would like to see his eye in more detail and gave it to her with his passport! Fortunately I managed to retrieve it before the lady fainted.
Edward is 10 now and spends more time in front of the mirror than I do. He has beautiful thick, curly hair which he spends fruitless hours trying to tame. And his eye? Well what about it? He says it’s just like me wearing glasses – “no big deal” – and I really think that’s the secret of our success.
Melanie and Edward’s story appear in the Spring/Summer edition of InFocus, our members’ newsletter. If you’d like to receive a copy of InFocus, please become a CHECT member – it’s free and easy to join.
Elli toy with a magic eye
The Childrens’ Eye Cancer Foundation in Germany, KAKS, offers free elephant cuddly toys to families affected by Rb around the world.
“Elli” has a magic, removable eye, just like Edward’s old toy Dino. If you’d like to order an Elli, please email firstname.lastname@example.org