Fighting back, against all odds
JACQUELINE CROSSLEY
was an active, healthy 25-year-old when she came down with what she thought was the flu.
Over the course of a weekend in the summer of 2015, her symptoms worsened.
By Monday afternoon, she was vomiting blood and slipping in and out of consciousness.
Crossley — whose health had been stellar until that point — spent more than 40 days in the intensive care unit at St. Joseph’s Hospital.
It would be months before she went home — and when she did, she had undergone emergency surgery to remove her small intestine and had received a diagnosis that would affect the rest of her life.
Crossley, now 27, has a JAK2 gene mutation, which is a rare genetic disorder. In Crossley’s case, it causes blood clotting.
Her doctors said at the time she was the only person in North America under 25 known to be a victim of this gene mutation.
“There’s no real explanation as to who
“I don’t think anyone anticipated that she would get to where she is today.” JO SMITH
JACQUELINE CROSSLEY’S MOTHER
has it and who doesn’t,” she said of the JAK2 gene. “It’s very rare, and it’s especially rare in younger individuals. Some people can have this mutation and go their whole life and never notice.”
When Crossley was admitted to the hospital that weekend in 2015, doctors discovered a blood clot in her portal vein, which transports blood to the liver from the spleen, stomach, pancreas, and intestines. They also discovered that the clot had cut off circulation to her small intestine, essentially killing that organ. Crossley underwent emergency surgery to remove it.
Crossley’s mother, Jo Smith, said her daughter’s recovery has been “almost miraculous.”
“I don’t think anyone anticipated that she would get to where she (is) today,” said Smith. “No one really talked about the future. I think it was pretty doomy and gloomy.”
Despite beating the odds of recovery, Crossley’s life has changed.
Before getting sick, Crossley was a busy and energetic person.
She worked in the student recruitment office at McMaster University, owned her own home and had a busy social life.
A competitive dancer from a young age, Crossley was teaching dance in her spare time and after work in the evenings.
But Crossley has never felt sorry for herself, Smith said.
“She never once uttered the words ‘Why me?’ She’s just an inspiration,” Smith said. “She was just so strong and she never complained.”
Crossley’s surgery left her with a challenging new regimen of medication and treatment.
The small intestine absorbs nutrients from food, which means Crossley now uses a system called total parenteral nutrition (TPN) — a method of feeding that bypasses the gastrointestinal tract — to sustain herself. Every other night, Crossley spends eight hours connected to an IV bag that provides her with the vitamins and nutrients she needs to survive.
Crossley’s doctors are trying to come up with ways to help her body absorb nutrients without the use of the TPN.
“They’re hopeful that my dependency on this TPN will lessen, and then eventually I’ll be able to feed and nourish my body on my own,” she said.
Though the TPN is necessary for Crossley’s continued health, it can also be a burden. She has to follow a strict curfew to ensure she allows enough time for her treatment.
“It really imposes a schedule on your life when you may not really want it,” she said.
Still, she is showing signs of improvement.
When she was initially diagnosed, she was dependent on her TPN machine for 20 hours a day, every day.
Her mom and her boyfriend have been trained to hook her into the TPN, which is both liberating — there’s no need for a nurse to come to connect the machine — and limiting. Because of where the port is located, Crossley can’t do it herself, which means she is always dependent on them.
“I was very independent prior to all of this. At 23, I had bought my own house, I was living on my own, I was working, I was all set.”
Her boyfriend, Ben O’Connor, has been a major source of support throughout her illness and recovery. A former nursing home employee, he’s certified to give injections and gives Crossley her medication every day (as she can’t absorb medication orally, Crossley receives two or three injections daily).
“He’s been very patient, to say the least,” Crossley said. “He’s wonderful.”
Throughout the course of her recovery, Crossley has had to learn to slow down and focus on her health.
Her doctors say it’s still too early to return to work full-time.
She can’t eat food that’s too difficult to digest — raw vegetables, corn and beans are off-limits — and she is constantly being monitored for new blood clots.
Travel is difficult, as many of her medications need to be kept cold.
“The gene mutation will stay with me forever. I will always have blood clots and thick blood, so I’m on blood thinners and medication and treatments to try and keep that under control,” she said.
“I feel like I have come a long way. I always kind of forget that. I always have to look back two and a half years to see that I am making progress.”
Despite the difficult path ahead, she’s not afraid and is taking on new challenges. She’s working on opening her own dance studio, called Studio 12, and plans to start her dance classes in the fall.
“I just feel like I’ve almost been given a second chance, so I just want to do something that makes me happy and helps me keep looking forward to the future.”