Honorary family

Wills Jones’ CHEO Story

Wills rugbyWills Jones is an intelligent, kind-hearted, athletic young man with an enormous amount of gratitude for CHEO.

The Jones family is very familiar with CHEO. Wills needed care as an infant for a short time and then of course the normal hiccups that come with being athletic, like broken bones. But in January 2016 the entire family became very grateful for a world-class pediatric facility in their home town.
Wills recounts the worst stomach pain imaginable that hit him in November 2015. “I had a fever, couldn’t keep food down and even lost 10 pounds in a matter of days. It was awful,” he remembers vividly.

A doctor’s appointment ruled out appendicitis and the diagnosis was a gastrointestinal virus. For the following six weeks Wills suffered. His sister Edie had tremendous worry for him. Even Wills had a different outlook on life. “I said ‘good night’ and ‘I love you’ to my family before bed because I just didn’t know what was going to happen,” says Wills.

A family trip to London, Ontario for a funeral went from bad to worse. Wills was admitted to a hospital there and underwent a scope. The results were sent to his local pediatrician who could tell immediately that he had Crohn’s disease.

Back in Ottawa, Wills would now get to know CHEO as a teenager. He met his gastroenterologist Dr. David Mack who scheduled tests right away, but because Wills couldn’t keep anything down, he was admitted to hospital.

“From the beginning there was a level of trust and comfort,” says Wills. “Once I was given a diagnosis it was a world of reassurance.”

Dr. Mack confirmed the Crohn’s disease diagnosis, and also informed Wills and his family that a section of his bowel was completed blocked – which would not allow his digestive system to function.
“Dr. Mack has a way of giving really crappy news in the best way possible,” says Wills, and that calming reassurance would be crucial in Wills’ care going forward.

Surgery would be necessary to control the disease but like something out of a movie there was more hospital drama to come. Wills spent one week at CHEO receiving medication and was discharged only to return one week later in extreme pain.wills thumbs up

Just how sick Wills really was became evident. He needed steroids to help manage the inflammation while surgery to address the damage caused by his Crohn’s disease had to be postponed because his body was going into crisis. Specifically, his adrenal glands were shutting down.

“I’ll never forget walking into Wills’ room and seeing a sea of white coats around Wills’ bed,” says Jennifer with emotion in her voice. He suffered from three cardiac events. His blood pressure plummeted, his heart rate was too high and the entire CHEO team was on hand to help. “There were nurses, a resident, the gastro team, surgery team and cardiology all helping,” says Jennifer. “At that point I knew I needed to step aside and let them do their job and I felt an overwhelming sense of gratitude that we were in the right place.”

Wills stayed at CHEO for three months. For a sixteen year old to have to take time out from his life was difficult, but Wills and his entire family are thankful to the CHEO team for the hours of consults and support during such a hard time.

Surgery was finally scheduled and Wills had almost three feet of his bowel removed. “It sounds like a lot but we have 46 feet of bowel you know,” says future doctor Wills.

The time spent at CHEO was tough but each family member has pleasant memories of movie time, watching soccer, the Super Bowl and joking with nurses and Michèle his child life specialist. Best of all is the level of trust with his medical team. “CHEO understands that the care involves the whole family,” says Jennifer. For Edie, she tells people that “CHEO saves families, not just lives.”

dionWills went through an experience he will never forget. He dealt with countless rounds of tests and check-ups, tubes in his nose that were beyond unpleasant and extreme weight loss. Before diagnosis he weighed 160 pounds and at his sickest weighed 108 pounds. Despite this bumpy road, today, Wills is thriving. He takes medication to suppress his Crohn’s and nothing stops him. Wills is now back to eating what he wants, playing rugby, soccer and golf and feeling great.

Andrew sums it up beautifully saying, “CHEO is part of our community and because of that it needs our support. We do at times take it for granted but when you live there for three months you really realize how blessed we are to have it here.”

The Jones family used their sense of humour, their rock-solid bond and their faith in the medical team at CHEO to help them in their journey. It is their hope that the Ottawa community will support CHEO in any and every way that they can.

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