Leigh Anne Jacques says doctors still don’t really know fully what happened to her daughter Jilly, 13. What both Jilly and her mother know, however, is how thankful they are that Jilly is healthy and happy, and finally back at lacrosse after two years away, due to multiple brain surgeries and several long hospital stays.
In May 2012, “she was a regular kid in Grade 6,” said Leigh Anne.
Jilly had gone to tryouts for a field lacrosse team and was looking forward to cross country finals the next day with her teammates at St. John Catholic School.
But she had a headache she just couldn’t seem to get rid of.
“I went to the first practice just before I got sick,” said Jilly.
The next morning, Frank, the father of the family, took Jilly to Sick Kids Hospital. She was told she had a sinus infection and sent home, but a day later, her nose had swollen to twice its normal size, and her parents rushed her back.
Doctors removed an abscess from her septum – which is usually only caused by trauma – and thought they had solved the problem. Jilly was in bed with her younger brother and father in the room, while Leigh Anne and Jilly’s older sister were having tea in the cafeteria.
Jilly said she must have been very confused while talking with her brother, at least according to what she’s been told.
“He was talking to me and asking me something, and I said I really wanted ice cream, then the doctor came and opened my eyes,” she said.
Leigh Anne said Jilly’s eyes were pointing different directions, and the team at the hospital leapt into action.
“One of the fellows said, ‘this isn’t right,’” said Leigh Anne, and the ensuing rush was described to her as being like a scene from a TV show.
The infection had spread to Jilly’s brain, and she underwent immediate emergency surgery for about five hours. Leigh Anne was told by the doctor that her daughter had almost died on the operating table, and there was a chance she wouldn’t make it through the night.
It turned out Jilly had suffered a number of strokes, and while recovering in the ICU she didn’t seem to be moving her left side, raising fears of possible paralysis. Then Jilly moved her left toe.
“One of the doctors did a little happy dance in the room, and I said to my husband, ‘I guess that’s a good sign,’” said Leigh Anne.
Most of these events had to be described to Jilly, who remembers none of them – “I only remember going to lacrosse tryouts and having a headache one of the nights.”
After three and a half weeks in the hospital, Jilly was finally allowed to go home – though she had to wear a custom-built helmet, since a piece of her skull had been removed and wasn’t yet being replaced. A neighbour into motorcycles took the helmet and had it painted professionally at a shop, one of many countless acts of generosity Leigh Anne said they’ve been blessed by in their neighbourhood.
“It was a bit of a whirlwind, and a lot of people helped us out,” she said.
Jilly said frequent hospital visits from her cousin Abby, as well as her best friends, twins Erin and Michelle, were a great morale booster for her.
While friends and neighbours helped out the family at home, Jilly’s medical odyssey continued. A February, 2013 operation to patch up her skull didn’t work out – Jilly’s body was producing too much cerebral spinal fluid. She now has a permanent shunt to drain the fluid to her stomach.
On May 23, 2013, an operation finally allowed doctors to implant a plate in her skull, and by May 25, she was out of the woods and on her way to recovery. While there were months of antibiotics and there are likely many more doctor’s appointments to come, the worst is over, and Jilly is back at lacrosse – although hockey is no longer an option.
While Jilly was recovering, Leigh Anne started thinking up ideas to celebrate. Jilly didn’t want a big party, so she started considering some sort of charity run. “We’re a family of runners,” said Leigh Anne.
And so Joggin’ for the Noggin was born. As it happened, one of two available permit dates was May 25 – almost a year to the day of Jilly’s last major surgery, and exactly a year since doctors told the Jacques family she would be okay.
And those friends and neighbours who offered support throughout haven’t stopped – the inaugural run was sold out with more than 300 runners signed up. Since much of the prizes and costs have been donated, most of the registration fees will go directly to Sick Kids. Leigh Anne estimated the amount will be roughly $10,000.
For the Jacques family, however, it’s just great to be able to rally in honour of Jilly, who is alive and well, and looking forward to taking part in the run, along with school friends and lacrosse teammates.
“So many of the runs and events for Sick Kids are for people who have died. We thought it’s kind of cool to celebrate a success story,” said Leigh Anne.