Skyla Keating loves climbing trees, cuddling up for story time, playing on Poppa’s farm and helping dad with his car. She was due to start school next month.
Life seemed on track, until she got an ear infection – or so doctors thought. What started as something common became the life-changing diagnosis of a rare brain tumour.
Dad Jamie, 24, picked up his almost five-year-old from her first school visit early August when he noticed things weren’t right.
“She was stumbling a lot and complaining of headaches,” says Jamie. “I just put it down to her being tired. But the next day it was still the same, which got me concerned. She’d deteriorated heaps from a normal kid to almost like a drunk person walking down the road.”
So Jamie drove Skyla to her grandfather Keith’s house.
“She was a little bit wobbly and displaying all of the classic symptoms, in a very mild way, of somebody who had a stroke,” says Keith. “We’d take that prognosis now if we could.”
Skyla underwent CT scans and x-rays at Tauranga Hospital on August 6, before she was transferred to Starship Children’s Health hospital the next day.
On August 8, Skyla was diagnosed with Diffuse Intrinsic Pontine Glioma or DIPG – a collection of tumours forming a large indistinct mass around the base of the brain stem, which also affects the main artery to the brain.
“It was 10 seconds of silence while we were processing that,” says Jamie. “When you get told that sort of news it’s just like: ‘Did I just hear that right?’”
“We’re just crushed,” says Keith, who says surgery is not an option and it is very resistant to chemotherapy.
“It’s a type of cancer that it doesn’t sit on the outside. It intertwines with all the nerves, so you just can’t separate it from what it’s growing around.”
Keith says this type of cancer is very rare with only 300 cases in the USA and no confirmed statistics in New Zealand.
“Hence we’re up against a very difficult wall. There’s not a lot of research done throughout the world because it’s rare.”
They’re left with the only choice of intensive radiation therapy under a general anaesthetic for 45 days, which Skyla begins this week.
“It’s going to be very horrific,” says Keith. “It’s 45 days of treatment each day, seven days a week, under general anaesthetic, so for a four-year-old girl it’s going to be bloody tough.”
Should they be given the time, Skyla’s family is also considering taking Skyla abroad for treatment, where Keith says doctors have developed some unique methods of dealing with cancer using natural and non-toxic products.
For now, Skyla’s family have their fingers crossed for their little girl, who doesn’t quite understand what’s happening to her body.
“The cruel part of this disease is it’s in the gear box,” says Keith. “The computer, the brain, is still fully active, but it’s affecting the gear box.
“So the signals that are being sent to the rest of the body like movement, breathing, heart rate – and it’s going to come to a point for bowel motions too – is going to slowly shut down.
“I just keep telling her she’s got a bit of a dodgy leg like poppa. We’ve got a race of whose leg is going to get better first.”
Keith admits one minute he can be rock solid and a blubbering mess the next, but the family keeps strong for Skyla.
“We’ve made a rule, no crying in her room, no negative thoughts. If you’re in the room with Skyla it’s all got to be positive thoughts.
“It’s just grit your teeth and do what you can for little Skyla. You’ve just got to take it on the chin.”
For years Keith and Skyla’s nana Kim have been reading about other methods of healing versus conventional medicine, but they’ve delved into it much deeper since Skyla’s diagnosis. They say any cure starts with a healthy diet with low sugar and low carbohydrates.
“We believe that in conjunction with radiotherapy, which hopefully will buy us time, that answer lies with alternative healing protocols,” says Keith.
“The hard part is making people, even close family, to believe and getting a four-year-old to comply.”
His biggest message is this: “Love your children for all their worth. Love them with all your heart because you never know what sort of bad luck life can throw at you.”
The family thank Credit Union in Greerton, Ronald McDonald House and Starship Children’s Health hospital for their support.
He knows it might be a long shot, but Keith is looking for families who have experienced DIPG to share their stories, good or bad. They can contact him at firstname.lastname@example.org
To donate to Skyla’s family, visit www.givealittle.co.nz/cause/teamskyla#Any funds surplus to requirements will be donated to further research of child cancer.
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