MEET Isaac Burns – a brave young Bendigo boy who is using his own experiences to raise awareness for a rare childhood cancer.
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Isaac, 11, was diagnosed with retinoblastoma, a tumour that grows in the retina, when he was a toddler.
He lost one eye to the cancer and has made countless trips to the Royal Children’s Hospital over the years for check-ups and prosthesis fittings.
Isaac knows all too well what it’s like to sit in a waiting room, filled with other tired, hungry and nervous children who have been temporarily blinded by eye drops in preparation for their check-ups.
It’s a long day and there’s not much for them to do while they are in the waiting room.
That’s why Isaac’s mum Mez Whittle is fund-raising to provide a play therapist for eye clinic days.
Ms Whittle, with the help of her friend Leah Rinaldi, is organising a community fund-raiser and awareness day at the One Tree Hill Hotel on May 26.
“Money raised will go to Beyond Sight, which is an auxiliary of the Royal Children’s, set up by parents of children with retinoblastoma,” Ms Whittle said.
“We would love $6000, that’s the target that we would like to get.
“That’s to actually provide a play therapist for 12 months for the eye clinic days; those days are really, really quite hard on the children and parents with the kids coming in. They’re not allowed to have anything to eat or drink from say midnight and they’re down in Melbourne by 9am in the morning and the kids spend most of the day there getting checked out to make sure there’s no further tumours or to check the size of the tumours that they’ve currently got.
“So they’re not allowed to eat, they’re not allowed to drink and then they’ve got eye drops that they’ve got to put in their eyes so then they can’t actually see, either.
“So it’s actually quite a hard day. You’re there from say 9am to about 3pm or 4pm or 5pm in the afternoon, depending on how big the list is for the day.
“So there’s 20 kids running around – ages one to five – who are tired, hungry, thirsty and they also can’t see very well.
“So the play therapist is very much needed.”
Ms Whittle said she had seen a play therapist once in the past eight years.
“We try to entertain them as best we can,” she said.
“They have to be examined under anaesthetic because they are so little so that in itself, holding your baby and getting them under is really, really full on for parents and the kids as well.
“They do have video games in there but the kids can’t see so you’re kind of sitting in there trying to read them stories and you’re trying to keep them entertained but they’re all very little so it’s a really, really hard day.
“So if a play therapist can be donated into that day it would just make it more of a positive outcome for the kids rather than such a hard day for them.”
Ms Whittle said a young boy who was diagnosed about the same time as Isaac had recently been diagnosed with secondary cancer.
“He’s lost both his eyes and then he’s also now battling a secondary cancer,” she said.
“That kind of inspired us to go, ‘Well, OK, we really need to get some awareness out here’.
“It is really something that’s easy to see and easy to diagnose if you know what you are looking for.
“You can actually see the cancer if you’re taking a photo of your child and you’ve got a cat’s eye – if it shines back at you like a cat’s eye – so you’ve got one red eye and a cat’s eye. That is a sign of retinoblastoma.
“Another sign is a kind of bulging eye.”
The fund-raiser at the One Tree Hill Hotel on May 26 will start at 10am and will include live music.
“We’ve also got a local artist to come and do an artwork shop with the kids that come and they’re going to do their interpretation of eyes and we’re going to do a little mini auction at the end and see if we can auction the kids’ artwork off,” Ms Whittle said.
“We’ll also have face painting and we’re going to try and see if we can get a jumping castle and other things.”
For more information about the event, visit the Facebook page.