Just 24 hours after doctors wrapped his daughter in a body cast, Craig Lewis knew something was wrong.
It wasn’t just that Ellaray was getting scratched by the rough fibreglass edges under her arms and chin.
That was bad enough.
But when the seven-year-old started to complain that her hip – one that had only recently been grafted with new skin – was hot and tingling, Craig decided to act.
“It was… the way Ella said, ‘I think it’s burning me there’,” he said, of what drove him to cut the cast off with the only tool he had available, a butter knife.
“We would’ve lost all that new skin.”
Peace Arch News readers were first introduced to Ellaray in May 2008, when the then-toddler’s story captured their hearts.
Since she was born, Ellaray has undergone two dozen surgeries to remove patches of skin and muscle affected by a rare condition that developed into an aggressive skin cancer. While doctors could initially stretch her young skin to cover the areas removed, in 2009 they had to start growing new skin in expansion bags under her healthy skin to replace the diseased tissue.
Craig is sure that process – which at one point had Ellaray carrying an extra four pounds off of her right hip – contributed to the scoliosis that prompted doctors to put her in the body cast. Diagnosed with the abnormal curvature in her lower spine in October, she underwent the cast procedure two weeks ago, on Feb. 21.
“It wasn’t fun at all,” Ellaray told PAN.
“It makes this arm go up and this arm go down,” she said, lifting first her right arm, then left, in an exaggerated demonstration.
Craig said he was told Ellaray will likely spend the next 11 years in a cast or brace as a result, and that she will eventually need a rod fused to her spine to correct the problem.
“It’s like having a new mountain put in front of us,” he said, repeating a description he has often used when referring to the journey of addressing Ellaray’s skin condition. “She just spent a lifetime getting the skin done.”
In the two months leading up to getting the cast – and knowing how it would limit Ellaray’s freedom – Craig set out to give his daughter every experience possible, from paddle-boarding off Crescent Beach to tubing on Cypress mountain.
Not wanting Ellaray to lose any more of her childhood than necessary, he’s similarly determined to ensure the time she spends in the cast is as comfortable as possible. In it, there are few things Ellaray can do for herself.
To that end, Craig has modified the molded structure to make it removable. He’s lined the inside with a breathable fabric, smoothed out and lined the edges to ensure they don’t chew up Ellaray’s skin and trimmed out an area around her hip to protect her new skin from damage.
Based on the 11-plus hours sleep that Ellaray got last Friday night – on an adjustable bed donated to the family by WR Mattress Gallery that makes it possible for Ellaray to get herself up in the morning – he’s confident he did the right thing.
He’ll find out this week if Ellaray’s doctors agree. He is optimistic they will see that the benefits outweigh any negatives, and confident there are other alternatives worth exploring.
“We didn’t stop any progress,” Craig said. “She’s got a little bend in her, but she’s not broken in half. There are different ways. In Ontario they’re (treating the same condition) with water and massage therapy.
“We are going to fix this bend, we’re just going to do it the right way,” he said.
