Fight­ing back, against all odds

The Hamilton Spectator - - FRONT PAGE - EMMA REILLY


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


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.”


Against all the odds, she’s danc­ing up a storm: Jacque­line Cross­ley was a com­pet­i­tive dancer at a young age and has taught dance too. But she’s not stop­ping there. She’s work­ing on open­ing her own dance stu­dio, called Stu­dio 12, and plans to start her dance classes in the fall.


Amid a tan­gle of tubes and ca­bles, Jacque­line Cross­ley can still smile as she sits in the in­ten­sive care unit at St. Joseph’s Hos­pi­tal af­ter surgery. She spent more than 40 days in the ICU.

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