Ellaray Lewis doesn’t hesitate when asked what she likes best about school:
“We do crafts and we get nap time – that’s my favourite,” the five-year-old says, as she skips toward her kindergarten classroom at Sunnyside Elementary.
It’s Ellaray’s third week of school and there’s no doubt the South Surrey youngster has settled in, buzzing about the room like it’s her second home and racing off to the playground at the sound of the bell.
While starting kindergarten is a new and exciting chapter for all five-year-olds, for Ellaray the milestone is decidedly more significant – it’s one her dad Craig, not so long ago, couldn’t imagine reaching.
“I never thought we’d make it to this actual date,” Craig says.
Ellaray was born with giant congenital twin nevus, a rare condition that developed into an aggressive skin cancer.
Doctors immediately began operating to remove the wart-like growths and hairy, brownish spots that plastered her tiny body. Through surgery after surgery, they systematically removed as much of the affected skin and muscles as possible, each time stretching her healthy skin to cover the area where the diseased tissue had been cut away.
After nine surgeries, Ellaray’s skin wouldn’t stretch anymore, and doctors began growing replacement skin in bags implanted under her skin. Between surgeries – her 20th is scheduled for Oct. 11 – she goes weekly to BC Children’s Hospital to have the bags topped up with fluid, as much as two ounces at a time.
As of this month, she’s had 16 of the bags implanted. As each fills, they become weighty bulges under her clothing.
As each is emptied, the brownish patches become smaller, replaced with the smooth, unblemished skin every young child should have.
Ellaray calls the implants her “bumpers.” Over the years, they’ve ballooned across various parts of her body. These days, they can be seen on her thigh and above her hip.
At school, Ellaray tells her classmates about them matter-of-factly, her dad said. They’re why she can only attend school four days a week, and they’re a big part of why Ellaray will have to miss large blocks of school in the months ahead.
To reduce the risk of catching a cold or other illness that could delay an operation, Craig will be keeping Ellaray out of school for two weeks before each surgery; and it takes about two weeks after each procedure for the youngster to feel like her old self.
Craig estimates his daughter has at least another year of surgeries ahead of her, possibly more.
Paging through some of the thousands of images he’s taken over the years to track Ellaray’s progress, he can’t help but marvel at how much has been accomplished.
“We’ve come a long ways, haven’t we?”
In the early days, Craig used to liken his and Ellaray’s journey to climbing Mount Everest. The generosity of community members helped ease that climb, and continues to, he said.
These days, he can see the summit.
“This is the top of the mountain we’re touching here… we see over it,” he says.
“Sooner or later our story’s going to be, we made it – Ella’s all fixed.”