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Published: February 2023

During her 29 years as an elementary school teacher, Pat crossed paths with hundreds of students and their parents. However, there was one family in particular that changed her life.

Having grown up in the Montreal area, Pat attended McGill University where she received her teaching degree. The early days of her career were spent in the classroom before she became a fieldworker who travelled to different schools in her district, conducting workshops on how to use multi-media systems. Back in those days, it was slides and overhead projectors. Pat eventually returned to teaching, and that’s how she met her future husband and the two boys she would eventually adopt as her own.

“I was teaching Robbie in Grade 5, and that’s when I met his dad, John, at a parent-teacher interview. He was a widower — he had lost his wife, and the boys had lost their mother, to cancer. Robbie’s older brother, also named John, was in high school,” explains Pat.

There was a spark, and the couple eventually married. In the early 80s, the family left Quebec and moved to the rural community of St. Eugène, east of Ottawa, where they bought a hobby farm. Pat eventually retired from teaching and opened an antique and craft shop. John, who retired as Vice-President of International Paints Canada, spent his time with horses on the farm. It was a life the couple enjoyed — one filled with fun and laughter. As the couple watched the boys grow into young men — they would soon turn to The Ottawa Hospital for help.

Compassionate care always remembered

The family’s first interaction with our hospital came in 1984 when Robbie was diagnosed with AIDS at age 19. But it would be many years before he would reveal his diagnosis with his family — about two years prior to Robbie’s death, he shared the news with his parents.

“The hospital care team treated him with humour and grace at a time when some people didn’t want to touch or be near AIDS patients. They were wonderful.”
— Pat

It was a difficult time for the family, but Pat will never forget how the team cared for their son. “This was the hardest part for me because he had to bear this burden on his own, but The Ottawa Hospital did a fabulous job with Robbie medically. He was on a protocol known as AZT, and he survived longer than most other AIDS patients his age at that time.”

“But Robbie was also a character and was oodles of fun,” explains Pat. “The hospital care team treated him with humour and grace at a time when some people didn’t want to touch or be near AIDS patients. They were wonderful.”

Sadly, Robbie passed away in 1996 at the age of 31. When he died, he was surrounded by love, and to this day, Pat still acknowledges the compassionate palliative care he received at home from Dr. Louise Coulomb.

The Ottawa Hospital impacts each family member

That was just the beginning of the family’s connection to our hospital. After Robbie died, Pat and John Sr. had their own firsthand experiences being cared for at the hospital — mostly from the orthopaedic team. “John Sr. had three knees replaced. I had two knees, and a hip replaced and I’m currently waiting for another hip surgery. I’ve had 13 hand surgeries and multiple foot surgeries. All together, it’s a long list,” says Pat.

Then on July 1, 2015, the family was shocked to learn John Jr. had pancreatic cancer — a devastating diagnosis. In Canada, the five-year survival rate is 10%. Once again, the family turned to the expertise of The Ottawa Hospital, and John Jr. underwent extensive treatment that included Whipple surgery. She credits Drs. Richard Mimeault and Guillaume Martel for saving his life. In fact, Dr. Martel was appointed the first Arnie Vered Family Chair in Hepato-Pancreato-Biliary Research in 2019. This research chair was made possible through generous donations from the Vered Family and other supporters. The goal of the chair is to focus on improving treatment for patients with cancers such as liver, pancreatic, gallbladder, and bile duct.

Pat is leaving a gift in her will to The Ottawa Hospital.

“My John is alive and well for six years now. He’s a miracle boy. So do you think I owe the hospital something?”
— Pat

Later, tumours were discovered on his liver — another devastating blow. His care team performed what’s known as TACE — transarterial chemoembolization — which is a procedure that involves injecting a combination of cancer-fighting drugs and an agent to cut off the tumour’s blood supply. It causes little to no effect on the function of the liver. “My John is alive and well for six years now. He’s a miracle boy. So do you think I owe the hospital something?” says Pat.

Sadly, John Sr. passed away just a few months after John Jr.’s diagnosis and therefore never knew his son had survived.

Family lessons in giving back

Each time a family member needed our hospital, Pat has been deeply grateful for the expertise and compassion she’s witnessed ─ and that’s how she became a donor. Following each experience, she always made an effort to give back. Over the years, she supported the hospital through the Gratitude Award Program and through annual donations.

“Look at what they’ve done for my family. It meant everything to have that care.”
— Pat

After her husband’s death in November 2015, Pat began to consider the legacy she could leave for generations to come by leaving a gift in her will to The Ottawa Hospital. “Look at what they’ve done for my family. It meant everything to have that care.”

When Pat reflects on why it’s important to support our hospital, she gives credit to her parents and the lessons they taught her about philanthropy. Those lessons live on in her today. “I may have had the best parents a kid ever had, but my mother was exceptional. My dad was too. They were both teachers and mum said, ‘I can’t afford to give a lot of money, but I can afford to canvass.’ She did a lot of door-to-door canvassing, and always said, ‘It’s our duty to leave the world a better place than we received it.’, so a little bit of that has rubbed off on me.”

Categories: Donors, Donors, Gift In Will

Jeannette Cheng shares the story of the traumatic motor vehicle collision — and the subsequent care she received — that changed the course of her life and inspired her to become a healthcare worker. Here is Jeannette’s story in her own words.

On August 18, 2007, after a night out with a group of fellow fourth-year Information Technology students from Carleton University, I struggled to fall asleep. I was eager and excited about the white-water rafting trip we had planned for the next day. I did manage to fall asleep eventually, but the next thing I remember was waking up in The Ottawa Hospital’s Intensive Care Unit two weeks later.

Amid my confusion, my caring and empathetic nurse explained I had been in a collision. She told me our car had been T-boned by an oncoming truck on the way to white-water rafting. I didn’t remember a thing about that morning, but apparently, I had been sitting in the back middle seat, where there was only a lap belt for protection, and I sustained life-threatening injuries that required me to be airlifted to the only adult Level 1 Trauma Centre in eastern Ontario — at The Ottawa Hospital.

I was in bad shape when I arrived. I had emergency surgeries to remove my spleen, a craniotomy to repair my fractured skull, and another surgery to stabilize my pelvis. I had chest tubes inserted because my lungs had collapsed, a tracheostomy to help me breathe, and an abdominal abscess removed.

Compassionate care during a terrifying time

I spent one month in the ICU before being moved to the trauma unit, where I experienced an upper gastrointestinal bleed. This was extremely serious, and I was terrified. But when my attending physician, Dr. Giuseppe Pagliarello, came to see me I experienced an inspiring, life-changing moment.

Dr. Pagliarello came to my bedside, held my hand, and spoke clearly and confidently about the next steps for my care. I was taken with his compassion, and that small gesture of holding my hand showed me I wasn’t alone. It was his kindness in that critical moment that inspired me to pursue a career in healthcare.

“I was taken with his compassion, and that small gesture of holding my hand showed me I wasn’t alone. It was his kindness in that critical moment that inspired me to pursue a career in healthcare.”
– Jeannette Cheng

Months of rehabilitations and recovery

Still, my road to recovery was far from over. After spending two weeks in the trauma unit, I spent another two weeks in the general surgery unit before going to The Ottawa Hospital’s Rehabilitation Centre. Over the course of two months, I relearned basic skills, including how to feed myself, talk, and walk again.

Throughout my time at The Ottawa Hospital, I received support from countless physicians, nurses, physiotherapists, occupational therapists, speech therapists, and more. These people were unbelievably dedicated, compassionate, and patient.

I left the hospital after four long months with a new appreciation for all the little things we take for granted, like being able to walk without assistance. I also had a deep sense of gratitude for the exceptional care I received when my life was on the line, and I had a newfound desire to provide that same care to others.

A new calling

When I was able, I returned to complete my final school year in Information Technology, but that desire to care for others didn’t go away. So, I made a transition towards healthcare by returning to school to become a Registered Nurse. And in April 2018, I began working at The Ottawa Hospital – in the very same trauma unit that saved my life. Now, I’m able to provide the same kind of compassionate care to patients that I received more than a decade prior. Being able to share my story with some of my trauma patients has shown them that they, too, are not alone in their recovery process.

“The motor vehicle collision was a life-changing experience that has directed my path to continue to make a difference in my community.”
– Jeannette Cheng

When I made the decision to become an RN, I never imagined I’d end up caring for people during a global health crisis, but that’s precisely what happened. At the height of the pandemic, my floor became a designated COVID-19 unit. It was extremely challenging to see so many patients suffering from COVID while not being able to see their loved ones, but it was also a privilege to be able to care for them.

After recovering from a serious collision, Jeannette Cheng became a nurse at The Ottawa Hospital.

The motor vehicle collision was a life-changing experience that has directed my path to continue making a difference in my community.

Jeannette Cheng, shown in her PPE, when she worked on the COVID-19 unit at The Ottawa Hospital.

Working with trauma patients, as well as COVID patients, allowed me to do that.

Being a nurse has taught me how important it is to have hope while also accepting the unpredictability of life. And my story is a reminder of the impact compassionate care can have on someone. It’s a reminder that something as simple as holding a person’s hand in their moment of need can change their life forever.

Download episode #50 of Pulse Podcast to hear Jeannette Cheng’s story.

Categories: Trauma

Published: December 2022

Content warning: Graphic description, in his own words, of the injuries he sustained.

Travis Vaughan shares the story of the night of December 18, 2019, when he arrived by air ambulance to The Ottawa Hospital Trauma Centre after a snowmobile crash in rural Ottawa that left him with life-threatening injuries. This is Travis’ story, told in his own words, about how our orthopaedic trauma team was ready to save his life.

It was a late afternoon on a Wednesday in December, and we just received our first real snowfall of the season. I was excited to get home from work to take the snowmobile out. My wife would be home from work soon, so I wasn’t planning on staying out long — just a quick loop and back home for the night. There was still light in the sky, but we were inching closer to the shortest day of the year.

I was on my way back — about 300 yards from the house — when the snowmobile hit a patch of very rough ground under the snow. As soon as the skis hit the frozen furrows of ground, the front end of the snowmobile broke apart. The machine rolled, taking me with it.

It all happened in the blink of an eye. While in the air, I remember being confused as to why the snowmobile suddenly upset, then I hit the ground hard.

The New Campus Development

The Ottawa Hospital’s new campus will be home to the most advanced trauma centre in eastern Ontario, ensuring patients like Travis benefit from exceptional care when they need it.

“I’m grateful that through all of this, I was able to stay calm and keep my breathing steady, thanks to the reassuring support coming from the other end of the phone.”

– Travis Vaughan

Initially I didn’t think I was any worse for wear, until I looked down. My leg was torn wide open, and my femur was completely exposed — there was a lot of blood, but no pain. My adrenaline kicked in immediately. Luckily, I had stuffed my cellphone in my pocket and was able to dial 911. I explained to the calm voice of the operator that I was lying alone in a field just north of Almonte. She asked several questions, and I conveyed the severity of the situation, explaining my left leg was dangling and nearly detached. I was trying to make a tourniquet, but didn’t have a belt and wasn’t able to get my waist band torn out of my snow pants. I was acutely aware the situation was dire — if help didn’t arrive quickly, things would likely not end well. I remember her telling me there was all kinds of help on the way, and the Ornge air ambulance had been dispatched.

My hands started to numb from the bitter cold, and I wanted to call my wife, but the operator insisted I stay on the line until help arrived. I’m grateful that through all of this, I was able to stay calm and keep my breathing steady, thanks to the reassuring support coming from the other end of the phone.

Desperate for help to arrive

Unfortunately, the cold air caused my phone to die, cutting me off from the 911 operator. Sitting alone I remember thinking — you’re 32-years-old, this isn’t how it’s supposed to end. It was a surreal feeling. Strangely, it wasn’t scary — a warm calm sort of settled over my body. I remember thinking either I was going to hear sirens and see help coming, or I wasn’t, and this would be it. I started to think about my wife and family, and all the happy milestones I would miss.

But my next thought was different — and it hit me like a train — if I didn’t survive this, it would be my wife and family left to pick up the pieces, not me. I was furious with myself for succumbing to self pity while not thinking of how devastating and difficult this would be for my loved ones. This was the most intense thought I’ve ever experienced. From that moment on, I was going to give everything I had left to live; putting one hand in front of the other, I began to crawl. The next thing I knew, our dog came running towards me across the field. He looked at me with a what-did-you-do expression. He knew I was in trouble and stayed by my side as I slowly dragged myself home.

My wife, Jenn, and my brother, Tyler, who was living with us at the time, were both at home by the time I got to the house. I pushed open the door, and my wife turned and looked at me. I can still see the shock on her face. She came running towards me, grabbed me a belt and covered me with a blanket, before going to find my brother for help.

“From that moment on, I was going to give everything I had left to live, putting one hand in front of the other, I began to crawl.”

– Travis Vaughan

Tyler raced to make a tourniquet to help ease the blood loss; not many people could have done that, and I’m here because of it. Soon, the emergency responders started to arrive and they applied a proper tourniquet, started fluids, and worked to stabilize me. I was loaded into the ambulance — time was of the essence, so they quickly transported me to the awaiting air ambulance. The pilot had tried to land in the yard, however, due to trees and uneven ground, he had to set the helicopter down on the road. My memory starts to get a little fuzzy here, I’m so grateful to my wife, brother, the police officers, paramedics, and firefighters for the role they played in saving my life.

“When I say a team, it’s no exaggeration — my family told me there were close to 20 professionals ready and waiting. It was powerful to witness, and it’s not lost on me that because I was at a Level 1 Trauma Centre, I had immediate access to any equipment necessary. This level of care is unbelievable.”

– Travis Vaughan

Unbelievable care awaited me at the Trauma Centre

When we landed at The Ottawa Hospital’s Civic Campus a full team awaited me. When I say a team, it’s no exaggeration — my family told me there were close to 20 professionals ready and waiting. It was powerful to witness, and it’s not lost on me that because I was at a Level 1 Trauma Centre, I had immediate access to any equipment necessary. This level of care is unbelievable. 

The team had received details of my injury while I was in the air. I remember feeling the first sigh of relief when we arrived — I was in good hands. My family was also in good hands, and that was equally comforting to hear afterwards. My wife received a phone call from a physician on the way to the hospital explaining what had already been done and what was planned. When my mother, sister, and wife arrived at the hospital, they were met by a social worker who was exceptional and again briefed them on all that was going on.

“It was my wife and brother that gave me my first fighting chance to live. Now, it was up to the trauma team to do the rest.”

– Travis Vaughan

It still amazes me to this day that I remember so much about that experience. I recall the faces of the trauma team as they did a full evaluation to determine if there were any other injuries. Each person acted quickly and concisely to get answers. I remember a CT scan showed I didn’t have any head trauma and my neck was fine — but I was hypothermic because of the extent of time I was outside.

The damage to my femur and surrounding tissue was extensive and critical. I recall someone saying the tourniquet Tyler put on my leg is likely the reason I made it to the hospital alive — it was my wife and brother that gave me my first fighting chance to live. Now, it was up to the trauma team to do the rest.

What is trauma care like at The Ottawa Hospital today?

The Ottawa Hospital and its Trauma Centre at the Civic Campus are responsible for 1.3 million residents, ranging from as far west as Pembroke to as far east as Hawkesbury.

What is trauma care like at The Ottawa Hospital today?

We’re the only Level 1 Trauma Centre for adults in eastern Ontario.

What is trauma care like at The Ottawa Hospital today?

The Civic Emergency Department was renovated in 2003 to treat 60,000 patients a year, today treats over 90,000 a year, and we project that by 2030, we will need to treat more than 120,000 a year.

Orthopaedic trauma team gave me a chance at a full recovery

Getting the femur positioned back in my leg was going to be the first, and very painful, thing to do. Dr. Allan Liew, Director of Orthopaedic Trauma, was the lead, and I remember an orthopaedic resident was with me — standing right by my head. They explained how they had to try and put my femur back in my leg. The resident had a good sense of humour, which really helped in that moment, and he said to me, “Ok, this is going to suck.”

And it really did, but it had to be done to help put me on the right path to recovery. Later that night, once I was stabilized, Dr. Liew took me into surgery. I had a debridement — which is basically a thorough cleaning of the wound — and that’s when they realized there was some bone loss from the accident. What I mean by that is a piece of my femur was missing — still back in the field. So, my leg had to be stabilized with pins and bars just above the knee.

This whole surgery was crucial to reduce the risk of infection, and Dr. Liew did an incredible job with what he had to work with. That first surgery was critical in setting me up for a successful recovery.

I returned to the operating room on December 21 for another debridement, which gave my surgeons the chance to reassess how the tissues were doing, as well as the bone. Then four days later, on Christmas Eve, I had a third surgery — a definitive fix, as it was called. A plate and screws were used to stabilize my femur, but also, the surgical team needed to start the process to build back the missing bone. A block of bone cement was placed in the area where the bone was missing. Amazingly, the body will start to form a healing membrane around the cement, and six to eight weeks later I would return to have the block removed and a bone graft placed inside the membrane.

Orthopaedic trauma team gave me a chance at a full recovery

Finally, after 10 days in hospital, I was able to go home. While I missed Christmas with my family, they were always present at the hospital. Staff also went the extra mile to celebrate Christmas with me. I was lucky to be alive and hopeful The Ottawa Hospital’s specialist were setting me up for a full recovery. But my journey wasn’t over — one more big surgery awaited me.

‘Superman’ surgeon leaves a lasting impression

That’s when I would meet Dr. Geoff Wilkin — or as I refer to him, Superman. He’s an orthopaedic surgeon who would lead that final surgery. Initially, the plan was for a short, routine surgery for bone grafting. However, after reviewing the imaging he wasn’t pleased with how my leg was healing and decided he wanted to re-align the femur — a redo if you will. Admittedly, I was shocked by this news. I had mentally prepared for a brief procedure, and now I was in for a six-hour surgery. But the truth was, I was having difficulty bending my knee, and Dr. Wilkin explained this was the best opportunity to get it right. If this wasn’t fixed properly, I would face a lifetime of issues that would impact my quality of life.

“Dr. Wilkin’s thoroughness and determination gave me the best chance at a future with a fully functional leg. He went so far past the extra mile to give me the best opportunity at recovery. He's given me a second lease on life — I will be forever grateful for that.”

– Travis Vaughan

On February 13, 2020 — just before COVID-19 hit our city — I was back in the operating room. Mine was a complex case. First, Dr. Wilkin had to remove that cement spacer in my femur. Then, he realigned the femur into a better position and attached two new plates to it. Up next was the bone grafting, where bone was harvested from my pelvis and placed in my thigh.

Dr. Wilkin’s thoroughness and determination gave me the best chance at a future with a fully functional leg. He went so far past the extra mile to give me the best opportunity at recovery. He’s given me a second lease on life — I will be forever grateful for that.

On to the best part. Thanks to the team that was waiting for me the night of the accident and those I would meet in the days and weeks ahead, including a long list of amazing nurses, I’m doing well. I don’t know that I’ll be skiing in the Rockies or running a marathon, but I was around to experience something far better. In October 2021, my wife and I welcomed our first child, a daughter. I now can chase her around the playground and enjoy any other activities she chooses to pursue growing up.

I’m beyond lucky to live in a city with access to the world-class care I received that cold December night. While my life hung in the balance, the trauma team was ready for me, and that’s something I will never forget.

Dr. Geoff Wilkin

“There are two important time points in acute orthopaedic trauma care. There's the initial time of injury, when we are focused on stabilizing measures to save life and limb. But the second, and bigger, piece of my job is putting people’s injuries back together as perfectly as possible to maximize their recovery and their return to function. My goal is to get people back to the level of activity they had before their injury — that's what we are always striving for with any injured patient.

Travis was one of those guys that every time I saw him, he was doing better and better. Despite everything he went through, his positive attitude and determination to get better never failed. Today, he's doing really well — he is enjoying an active life with his young family and his injury is largely a thing of the past. It feels great to have helped him get there.”

Learn more about Dr. Geoff Wilkin

Download episode #72 of Pulse Podcast to hear Travis Vaughan reunited with his orthopaedic surgeon, Dr. Geoff Wilkin.

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Categories: New Campus Development, Trauma

Published: January 2023

In late 2019, Camille Leahy was excited about the future. She was ready to embark on a new work adventure after quitting her job of 17 years. However, that all changed in January 2020 when she started feeling unwell and was in a great deal of pain. Camille went to the emergency department closest to her home in Newmarket, knowing something just wasn’t right. The next day, she received a devastating diagnosis — acute lymphoblastic leukemia. It was the start of a rollercoaster journey that eventually led her to a Canadian-first CAR T-cell therapy clinical trial taking place at The Ottawa Hospital.

With barely any time to digest the news of her cancer diagnosis, the 35-year-old learned she needed to begin treatment right away. She was referred to Princess Margaret Hospital in Toronto and admitted as soon as a bed was available. “From there, I started a month of treatment that consisted of intense chemotherapy to get me into remission. The goal was to then continue maintenance therapy for a couple of years, which would include chemotherapy, steroids, and other medications,” explains Camille.

World-Leading Research

Our made-in-Canada CAR T-cell therapy clinical trial is bringing new hope to people like Camille, who have cancer. Our Campaign to Create Tomorrow will advance more lifesaving research like this and strengthen Ottawa’s position as a global research powerhouse.

With this sudden diagnosis and the immediate requirement for treatment, it meant the single mom couldn’t start her new job — now she was also without employment. “At that point, we just had to worry about saving my life,” says Camille.

Shocking news after rounds of treatment

After 30 days in hospital and all set to go home, Camille received another blow. The treatment didn’t work, and there were still cancer cells lingering. Her medical team needed to try another option — and right away. This time, Camille was put on an immunotherapy drug known as blinatumomab. After a second consecutive month in hospital, away from her daughter, there was a glimmer of hope — she was in remission.

However, she also learned the cancer would keep returning, so her team recommended a stem cell transplant as her best option. “That was shocking news for me,” says Camille.

“About eight months post stem cell transplant, I woke up with some neck pain. I didn't think anything of it, but unfortunately, blood work showed that the cancer returned, and it was aggressive.”

– Camille Leahy

By July 2020, she had undergone the stem cell transplant and spent another month in hospital, but this time, the world was in the midst of the pandemic — that meant her family, including her daughter, couldn’t visit. Camille was eventually discharged, but another hurdle was around the corner. “About eight months post stem cell transplant, I woke up with some neck pain,” explains Camille. “I didn’t think anything of it, but unfortunately, blood work showed that the cancer returned, and it was aggressive.”

“Have you heard about CAR T-cell therapy?”

It was now March 2021, and Camille was out of options. Her medical team recommended another chemotherapy protocol, but she just couldn’t do it. “When they started naming off the types of chemo involved, I broke down because it just sounded all too familiar to my first month, and that induction didn’t work,” recalls Camille. “Also, this time it was during a pandemic. At least when I was diagnosed in January, I had all my family and all my friends visiting every day. But this time around, I wasn’t going to be able to see my daughter, I wasn’t going to be able to have my friends and family as often as I wanted — maybe once a week. I just couldn’t do it without them, I wasn’t strong enough.”

That’s when she remembered CAR T-cell therapy had been mentioned at one point early on, so she asked her doctor about it. “I asked her, ‘Have you heard about CAR T-cell therapy?’ She confirmed there was a trial going on in Ottawa, and she decided to see if I would meet the criteria for it.”

Soon, Camille got the dose of good news she desperately needed – she was accepted into the trial, and she soon met Dr. Natasha Kekre, the principal investigator.

First made-in-Canada CAR T-cell therapy for cancer shows promise

More than a dozen people with cancer who had exhausted all treatment options are alive and cancer free today thanks to a pioneering, Canadian-first clinical trial. It uses a highly personalized kind of immunotherapy to help the patient’s T-cells recognize and kill their cancer. The results to date could open the door to a new era of made-in-Canada immunotherapies for cancer.

Patients in the trial, like Camille, have their immune cells (T-cells) removed and genetically engineered in a lab with a disarmed virus to produce synthetic molecules called “chimeric antigen receptors” (CAR). These new supercharged CAR T-cells, with their enhanced cancer-killing ability, are then infused back into the same patient.

What is the difference between a T‑cell and a CAR T‑cell?

T‑cells are a type of white blood cell, which play a critical role in the immune system. Originating in the bone marrow and maturing in the thymus — a small gland in the chest that’s part of the lymphatic system — T‑cells focus on attacking specific foreign particles, including bacteria, viruses, and other microbes.

CAR T‑cells are T‑cells that have been modified in a lab to fight cancer cells. First, T‑cells are removed from the patient, then they’re engineered to produce proteins on their surface called “chimeric antigen receptors,” or CARs. These proteins help the cells recognize and bind to proteins on the surface of cancer cells. Once engineered, the CAR T‑cells are reinfused into the patient to do their work.

Learn more about CAR T-cell therapy

While Health Canada has approved several commercial CAR T-cell therapies, access is currently restricted to people with just a few kinds of leukemia and lymphoma, and only if they fall into certain age ranges. Commercial CAR T-cell therapy is also very expensive and involves shipping cells to the United States and back.

This new trial is the first to manufacture CAR T-cell therapy in Canada. It uses a different kind of cell manufacturing that opens the door to less expensive and more equitable treatment.

“We’re very excited about the preliminary results of this trial, and we will be moving forward with new and exciting trials across Canada.”

– Dr. Natasha Kekre

“Canadian patients deserve access to the best cancer treatments in the world, and we need Canadian research to make this happen,” says Dr. Kekre, who, in addition to her leadership with this clinical trial is also a scientist and hematologist at The Ottawa Hospital. “We’re very excited about the preliminary results of this trial, and we will be moving forward with new and exciting trials across Canada.”

CAR-T trial provides one last shot

Camille’s cancer journey up until this point experienced many hurdles and that happened once again with the CAR-T clinical trial. During the first attempt, she was sent back home because she had a lung infection. By the second try, Camille was having some neurological symptoms that included her face going numb. “The medical team decided to investigate, and they did a lumbar puncture that showed the cancer had gone into my central nervous system and they hadn’t been able to detect that because there’s a blood-brain barrier. Again, I was sent home,” recalls Camille.

“Obviously when I was told that this was my last shot I was terrified. I knew there were risks, but my options were limited. I took a chance, but I also know how passionate Dr. Kekre is about this trial. I did a lot of research about CAR-T and how effective it was.”

– Camille Leahy

She would have to endure lumbar punctures twice weekly with chemotherapy to clear the cancer from the central nervous system — something Camille describes as “awful”, but she didn’t give up.

Finally, Camille got the green light for a third trip to Ottawa, but the day before she spiked a fever. She remembers telling her family, “I know that there’s a chance I might not be able to do it, but I’m going anyway.” Somehow, the fever cleared and finally the team was able to go ahead with the cell collection.

Two weeks later, on September 15, 2021, she had the CAR T-cells reinfused into her body — reprogrammed to now be able to recognize the cancer cells and kill them.

Camille and her daughter waited to see if, finally, they would get good news. “Obviously when I was told that this was my last shot, I was terrified,” explains Camille. “I knew there were risks, but my options were limited. I took a chance, but I also know how passionate Dr. Kekre is about this trial. I did a lot of research about CAR-T and how effective it was.”

Immunotherapy research changes lives

It has been a long and challenging journey for Camille, but she is truly grateful to the entire team at our hospital who were ready to care for her when she had run out of treatment options. It wasn’t until one year after Camille’s CAR T- cell treatment that she really started to believe she could get better. After so many hurdles during this cancer journey, she knew it would take time and wanted to give it a year.

By September 15, 2022, she felt like a new person, and was cancer-free. “I’m back to driving, I’m back to feeling as normal as I can. Obviously, there’s always the fear, but I couldn’t walk last year. I was using a cane and a walker. I struggled a lot. But this trial changed my life.”

“Even if the cancer comes back, this has given me precious time, and I know the research will help many others. It has given me a fighting chance.”

– Camille Leahy

As Camille and her daughter, Michela, are back to doing the mother-daughter things they love, Camille is also advocating for the research that saved her life with the end goal of giving more patients hope. She wants to make sure CAR T-cell therapy is available to others who face an uncertain future like she did. “For it to become more widely available in Canada would be incredible. The research team at The Ottawa Hospital made it possible for me to have this treatment done here in Canada. I didn’t have to raise money to try and leave the country to go get CAR T-cell treatment in the United States. My goal now is to tell my story so that they can continue to do this in Canada and can become more available to everyone here.”

Camille and her daughter at a Toronto Blue Jays game.

Camille and her daughter taking part in MudGirl.

Today, at age 38, Camille is easing back into life and thinking about the future. When her immune system is strong enough, she hopes to return to work. Right now, she enjoys the precious time and memories she’s been given the opportunity to make with her daughter, like driving her to school, taking her to baseball games, and watching her play soccer — moments she doesn’t take for granted. “Even if the cancer comes back, this has given me precious time, and I know the research will help many others. It has given me a fighting chance.”

Learn more about the Canadian-Led Immunotherapies in Cancer (CLIC) research program, funded by BioCanRx, the Canadian Institutes of Health Research, The Ottawa Hospital Foundation, BC Cancer, BC Cancer Foundation, the Ontario Institute for Cancer Research, the Ottawa Regional Cancer Foundation and the Leukemia and Lymphoma Society of Canada.

Download episode #75 of Pulse Podcast to hear Camille talk about why she’s become an advocate for cancer research.

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The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Cancer, Clinical Trials, Clinical Trials

Growing up in a military family, Janet McKeage was always on the move. While the cities changed, her family’s open-door policy remained the same. Her parents were always ready to help others and give back, and to this day, she credits them for instilling that core value she and her husband now share with their four children. “My parents didn’t have a lot of money, but they taught me the importance of helping the people around you in any way that you can. Often, there were young military members who didn’t have family nearby, and they were always welcome at our dinner table — we’d often have many people joining us for a meal,” recalls Janet.

When she was in her early 20s, Janet lost her father to pancreatic cancer. He died several months after his diagnosis, but Janet vividly recalls the care and compassion he received from his team of specialists here at The Ottawa Hospital. Then, almost ten years ago, another devastating blow — Janet’s dear friend, Sindy, was also diagnosed with pancreatic cancer. “So that’s what brought me to support the hospital. I knew my dad had had great care. And I had a very dear friend that needed the same great care my dad received. Then, when I grew to learn more about the research side of the hospital, I was really blown away.”

“When I think about success for anyone in life, the most important thing is health — having a hospital in our city that is full of leading research, new discoveries, new treatments and having the best care that we can possibly have — it’s critical.”

– Janet McKeage

Today, as Senior Investment Counsellor, RBC PH&N Investment Counsel, Janet feels very fortunate to have a career that has spanned 30 years with RBC. It aligns closely to her own philanthropic values by helping families with their own health and wealth investments. Janet is quick to point out how closely the two are intertwined and that’s what influences her own philanthropic leadership for The Ottawa Hospital. “When I think about success for anyone in life, the most important thing is health — having a hospital in our city that is full of leading research, new discoveries, new treatments, and having the best care that we can possibly have — it’s critical.”

Janet’s involvement with The Ottawa Hospital Foundation began with Run for a Reason as part of Sindy’s #MEMC (Make Every Moment Count) Crew.

“It’s not about being involved with an organization because it looks good on your resume. It’s about really caring and doing things that are meaningful.”

– Janet McKeage

While supporting the hospital is one thing, Janet also took action. It started by running with Sindy’s #MEMC (Make Every Moment Count) Crew as a part of Run for a Reason. Next, she became a volunteer and then co-chair of our President’s Breakfast, then joined our Foundation’s board of directors, and in June 2022, became chair. “It’s not about being involved with an organization because it looks good on your resume. It’s about really caring and doing things that are meaningful. This role as chair of The Ottawa Hospital Foundation is a bit of a culmination of all the things that matter and allows me to bring some of my business background, my volunteering and dedication to something that I’m passionate about. I believe the hospital is critical and core to any successful community, to any family. Let’s face it, if people haven’t experienced the hospital to this point in their life, they certainly will one day, and I want to make sure that it’s the best for everyone.”

That’s why Janet is stepping forward for our GivingTuesday campaign on November 29, 2022, with a commitment to match each gift 3X up to $100,000.

Janet is more motivated than ever after recently learning Sindy’s cancer has returned. “It’s philanthropy that’s helped with the incredible care Sindy has received. It’s been almost 10 years since her initial diagnosis, and I’m grateful for every day. More research is needed to give people, like Sindy, hope for a better outcome,” explains Janet.

While Janet pushes forward to help build support for our hospital. She also keeps the powerful message of her dear friend close to heart — make every moment count.

Cyril Leeder and Janet McKeage, co-chairs of the President’s Breakfast for The Ottawa Hospital from 2018-2020.

2022 President’s Breakfast Co-Chair Sarah Grand with Janet McKeage, Chair of The Ottawa Hospital Foundation’s Board of Directors. Photo by Ashley Fraser

Download episode 67 of Pulse Podcast to hear how Janet’s philanthropy roots run deep.

Categories: Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care

Updated: February 2024

Nearly three years after undergoing groundbreaking immunotherapy for stage 3C colorectal cancer at The Ottawa Hospital, Haydn Bechthold is making strides — he’s currently in his second year of law school in Toronto and will spend another summer at Emond Harnden, a law firm that has supported our President’s Breakfast.

Published: October 2022

As a young athlete playing semi-pro soccer overseas and going to school, Haydn Bechthold admits he felt invincible. But a diagnosis of colorectal cancer at age 22 quickly changed that perspective. The news was a shock, not only to Haydn but also to his family and friends. He was young, active, and otherwise healthy, so a diagnosis of stage 3C rectal cancer was hard news to digest. “I remember thinking ‘Don’t Google survival rates,’” recalls Haydn.

Find out how the Campaign to Create Tomorrow will take research to unprecendented heights.

When Haydn was referred to The Ottawa Hospital Cancer Centre, there was a full team assembled. He met with medical oncologist Dr. Joanna Gotfrit, followed by radiation oncologist Dr. Jenny Jin, and surgical oncologist and Director of Cancer Research, Dr. Rebecca Auer. He learned there was some good news — the cancer hadn’t spread.

Dr. Joanna Gotfrit is a medical oncologist at The Ottawa Hospital.

Dr. Jenny Jin is a radiation oncologist at The Ottawa Hospital.

Dr. Rebecca Auer is the Executive Vice-President of Research and Innovation at The Ottawa Hospital and CEO and Scientific Director at The Ottawa Hospital Research Institute

A most unusual case of colorectal cancer

For Dr. Gotfrit, the first thing she remembers after learning about Haydn’s case was how unusual it was to have a patient his age with this kind of a diagnosis — typically, patients are decades older. “No matter the age, whether it’s a very young patient or someone who’s elderly, it’s never easy to deliver bad news. But there is an extra layer and challenge when patients are that young. It’s life-altering, no matter how the trajectory goes,” explains Dr. Gotfrit.

When Dr. Auer left the exam room after meeting Haydn for the first time, she remembers feeling heartbroken, thinking about this young man’s life, his future, and the diagnosis he faced. The standard form of treatment for Haydn was radiation, chemotherapy, and surgery — each one would impact his life. He faced infertility, life with an ostomy bag, and the likelihood of recurrence. “That was hard, but having access to cutting-edge care, we quickly started to think outside the box. I called Drs. Gotfrit and Jin, and we decided to get molecular testing on his tumour,” explains Dr. Auer.

“We knew there was a strong chance we were going to find some rare molecular alterations in his tumour that may drastically change how we would want to approach this case.”

– Dr. Joanna Gotfrit

Those molecular markers from testing would be key to determining the path forward for Haydn’s treatment. Dr. Gotfrit explains while they had the diagnosis and knew the stage of his cancer, there were still underlying questions. “We knew there was a strong chance we were going to find some rare molecular alterations in his tumour that may drastically change how we would want to approach this case. And when I say that, I mean, it may open other avenues of treatment for him.”

Those molecular markers from testing would be key to determining the path forward for Haydn’s treatment. Dr. Gotfrit explains while they had the diagnosis and knew the stage of his cancer, there were still underlying questions. “We knew there was a strong chance we were going to find some rare molecular alterations in his tumor that may drastically change how we would want to approach this case. And when I say that, I mean, it may open other avenues of treatment for him.”

Navigating through the cancer journey

As Haydn and his family came to terms with the diagnosis and attended a multitude of tests and appointments, there was one constant: Mary Farnand — his nurse navigator.

A nurse navigator is a specialized oncology position. Mary works in the Cancer Assessment Clinic (CAC), and along with other nurse navigators at our hospital, is the first point of contact for patients who are being diagnosed. “We review the patient’s history, and initiate some of the work-up, such as bloodwork and scans, to make sure it goes as fast as possible and is personalized,” explains Mary.

“It’s a very difficult time in their life. Our role is to try and provide clarity as well as emotional support.”

– Mary Farnand

The CAC provides a central source of information, support, and advocacy for patients. “We receive referrals, review them, and try to understand what the patients need. We help patients manage symptoms, and if they live farther away, can we direct their scans to another hospital closer to home. We are that source of consistency for each patient,” explains Mary.

This role quite literally helps the patient and their family move through the cancer program and better understand what lies ahead. “We navigate with the patient, giving them as much information as possible to help inform their treatment decisions. It’s a very difficult time in their life. Our role is to try and provide clarity as well as emotional support,” says Mary.

Haydn and Mary Farnand at The Ottawa Hospital’s President’s Breakfast.

Photo by Ashley Fraser.

The CAC provides a central source of information, support, and advocates for patients. “We receive referrals, review them, and try to understand what the patients need. We help patients manage symptoms, and if they live farther away, can we direct their scans to another hospital closer to home. We are that source of consistency for each patient,” explains Mary.

Haydn is adamant he couldn’t have done any of this without her. “She was such a huge help and so kind to me through this whole process. I remember having so many people contacting me early on and it was quite overwhelming, but Mary was always there. She was always willing to help me figure out what my next move was going to be. She was my constant source of support.”

That support would continue as Haydn’s team got a clearer picture of what kind of tumour they were dealing with.

When should I be tested for colorectal cancer?

People who have an average risk of colon cancer should start getting screened regularly at 50. For those with a higher risk — due to family history, a personal history of chronic inflammatory bowel disease, or other risk factors — it might be recommended to get screened earlier or more often.

Early signs of colon cancer include: persistent changes in bowel habits (unusual diarrhea or constipation), rectal bleeding or blood in stool, persistent abdominal discomfort, a feeling of incomplete bowel movements, weakness or fatigue, and/or unexplained weight loss. If any of those symptoms appear alone or together and persist, seeing a doctor is recommended.

Molecular Oncology Diagnostics Lab plays a key role

Further testing helped the care team plan the best course of treatment for this young man. Some of that testing happened at The Ottawa Hospital’s Molecular Oncology Diagnostics Lab — a first-of-its-kind in Ottawa.

The donor-funded lab is revolutionizing cancer diagnosis and treatment by allowing healthcare providers to analyze the genetic flaws inside tumour cells and tailor therapies to a patient’s individual type of cancer. This improves cancer care by giving care teams the ability to predict which drugs would work best for that particular patient’s illness and which drugs would not be beneficial.

Research conducted in the lab gives patients access to the latest experimental cancer therapies before they are available elsewhere. It’s the third lab of its kind in Canada to use the most advanced genetic analysis technology — next-generation sequencing — to analyze patterns from large groups of genes or proteins. The end goal is to improve the detection and control of cancer with more precise treatments customized for each patient.

Haydn and Dr. Auer at The Ottawa Hospital’s President’s Breakfast.

Photo by Ashley Fraser.

“Haydn got this cutting-edge treatment about one year before the world knew anything about it. This was because we have a highly knowledgeable and courageous team that decided to think outside the box for a 22-year-old with cancer.”

– Dr. Rebecca Auer

As Haydn’s team awaited the results of his testing, he was prepping for radiation which was set to begin in March 2021. But as the day approached for his first treatment, he got a call that would change everything. “It was a conference call unlike any I’ve ever experienced. All three of my doctors were on the line. They explained biomarker testing on my tumour showed I had what’s known as MSI-H cancer, which meant I was eligible for a certain type of immunotherapy treatment,” recalls Haydn.

This unique sub-type of rectal cancer has responded well in clinical trials to immunotherapy. As the team explained to Haydn and his family, they used data from the literature to come up with an individualized treatment plan — one they believed would give him the best long-term outcome. “Haydn got this cutting-edge treatment about one year before it was widely known. This was because we have a highly knowledgeable and courageous team that decided to think outside the box for a 22-year-old with cancer,” explains Dr. Auer.

Testing also revealed Haydn had Lynch syndrome — an inherited condition that increased his risk of certain cancers, including colorectal cancer. These test results were valuable information that allowed his care team to develop a personalized treatment for his unique case. They believed immunotherapy would give Haydn the best chance to live a long, healthy life.

The hope of immunotherapy

When Haydn was presented with this alternative to the standard of care, he was excited, but also nervous. “While I was nervous to try something new and futuristic like this, I was also excited by the hope immunotherapy offered me. My family and I had complete faith in my doctors, knowing they could access this treatment, which had been successful in very early studies,” says Haydn.

“The scan showed my tumour had shrunk by almost half. It was incredible.”

– Haydn Bechthold

For Dr. Gotfrit, being able to offer Haydn this treatment option was a game changer. She recalls just eight to 10 years ago, as an internal medicine resident rotating through oncology, there was very little personalized medicine. However, that is changing rapidly. “More and more data, discoveries, and developments about the molecular basis of tumours are coming to light. And, importantly, drugs that could directly target those molecular alterations are being developed. So instead of chemo that essentially ‘shoots to kill’ any rapidly dividing cells in a very nonselective way causing a multitude of side effects everywhere in the body, we’re now developing therapies that are much more selective and can directly target specific mutations in tumours. Being able to identify these molecular alterations is a huge step forward for oncology, giving us more options with a better quality of life. So, it’s a win on all accounts.”

On April 1st, 2021, Haydn started immunotherapy treatment. Within a month of treatment, all of Haydn’s symptoms were gone. No more blood in his stool, no more pain, his energy was back, and he was no longer losing weight.

What is immunotherapy?

Cancer immunotherapy, or immuno-oncology, is a treatment that harnesses a patient’s own immune system to fight their cancer. It works by “training” the immune system to recognize and attack cancer cells, strengthening immune cells to fight cancer, and/or helping the body boost its immune response in other ways. There are many different forms of, and ways to deliver, cancer immunotherapy, including targeted antibodies, vaccines, cell transfers, viral therapies, and more. Cancer immunotherapy is a biotherapy, and it might be used on its own or in combination with other treatments, like surgery, chemotherapy, or radiation.

The news got even better with his first scan two months after treatment began. It was news Haydn was thrilled to hear. “The scan showed my tumour had shrunk by almost half. It was incredible.”

Ready for J-pouch surgery

The immunotherapy treatment continued until July 2021. At that point, the tumour couldn’t be seen on the latest scans and that’s when Dr. Gotfrit called Dr. Auer to say this young man was ready for surgery.

By August, a major operation was planned to remove the remaining signs of the tumour and the surrounding lymph nodes. Haydn also underwent a procedure known as J-pouch surgery. This would remove his entire colon to help eliminate any future risk of cancer, while also allowing him to live a normal life without an ileostomy bag. It was during this surgery that Dr. Auer made a remarkable discovery — there were no signs of cancer. “This was a really wonderful moment. Thinking back to the day I met him, and I thought for sure he was going to break my heart, here we were with a really amazing outcome. This was a young man who potentially had his whole future back,” says Dr. Auer.

Once the J-pouch healed, Haydn was back in the operating room in November of 2021, this time with Dr. Shaheer Tadros and Dr. Auer to remove the temporary ileostomy and finish the J-pouch procedure. He was about to get his life back.

How J-pouch surgery works

BEFORE SURGERY

Colon and rectum present
Patient suffering from symptoms

DURING SURGERY

Colon and rectum removed
J-shaped pouch constructed from small intestine and attached to anus
Ileostomy bag placed during surgery to help with the healing of the pouch

SECOND-STAGE SURGERY

Ileostomy bag reversed
POST SURGERY J-pouch and anus fully functioning

The role research plays in changing the course of cancer care

When faced with a challenging cancer case, our cancer experts didn’t settle for the standard of care — knowing the long-term impact it could have on Haydn’s life. Instead, they dug deep and offered him an alternative with better long-term quality of life — immunotherapy treatment.

Since starting her own research laboratory at The Ottawa Hospital in 2007, Dr. Auer has focused on the interplay between cancer, surgery, and the immune system — making many important discoveries. “Surgery is very effective in removing solid tumours. However, we’re now realizing that, tragically, surgery can also suppress the immune system in a way that makes it easier for any remaining cancer cells to persist and spread to other organs.”

Dr. Auer’s team has discovered how this happens and they are now testing different strategies in the lab and in patients to modify the immune system and prevent cancer from coming back after surgery. These trials often include patients with colorectal cancer.

Just a few years ago, Haydn never gave much thought to research, let alone cancer research, but his views are very different today. “There are so many advances every year in this field, especially clinical trials, it’s really exciting. I think a lot of people hear the term clinical trials, myself included when I was in treatment, and are quite scared. But a lot of the time, it’s the most up-to-date or newest form of treatment and possibly the best, so the importance of research is massive.”

Setting his sights on the future

Just a few months after Haydn’s second surgery he started feeling like his old self. He began exercising again and putting on weight. Incredible progress in a very short time after his shocking diagnosis.

Today, Haydn continues to be monitored closely by Dr. Gotfrit, and will be for the next few years, but the cancer is gone and he’s getting back his life. As far as his medical oncologist is concerned, that’s the best possible outcome she could have imagined for him. “This is exactly why you go into medical oncology. It’s the absolute best feeling in the world to put in all that effort, thought, and agonize over what’s the right thing to do for this young man. And then make the best decision possible and see that it worked as well as or better than you ever could have imagined. It’s hard to describe how good that feels,” says Dr. Gotfrit.

Mary Farnand, Dr. Auer, Haydn and his parents at The Ottawa Hospital’s President’s Breakfast.

Photo by Ashley Fraser.

“I also realize how incredibly fortunate I was to have The Ottawa Hospital and this team of doctors who wouldn’t settle for traditional treatments — who thought outside the box to give me the best life possible.”

– Haydn Bechthold

For Haydn, it’s a team effort he won’t soon forget. “I never worried about death before this, but I realized I’m not invincible. I also realize how incredibly fortunate I was to have The Ottawa Hospital and this team of doctors who wouldn’t settle for traditional treatments — who thought outside to box to give me the best life possible. I felt like they all really cared.”

Now living in Toronto and going to law school, you can still find Haydn kicking the soccer ball around for fun, and he says with a smile that he might not be done with soccer yet. Now he has time on his side to make that decision.

Listen to Haydn share his story in his own words in episode 69 of Pulse Podcast.

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Categories:

Published: September 2022

When Geneviève Bétournay reflects on the past decade, she thinks about the adversity she has overcome. As the owner of the Art House, a coffee house/art gallery, she’s endured keeping her business alive during the pandemic. However, an even bigger challenge was her diagnosis of multiple sclerosis (MS) in 2010. Today, thanks to a life-changing stem cell transplant at The Ottawa Hospital, she has a whole new perspective on the possibilities that lie ahead for her.

Find out how the Campaign to Create Tomorrow will take research to unprecendented heights.

Geneviève is no stranger to adapting to change. She was in her early 20s and going to university when she started to have issues with her vision. Especially during stressful times, her vision would become blurry, but she didn’t associate it with anything more serious. That changed when she was 23 and living in Japan — new symptoms emerged. “I had more issues with my vision. It was getting worse and that was scary. Also, my foot would drop — it would drag when I tried to move it and there were other issues related to movement,” recalls Geneviève.

News of MS diagnosis hits hard

When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.

It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”

An MRI finally provided Geneviève with answers. But along with those answers came the shock of an MS diagnosis.

“What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me.”

– Geneviève Bétournay

MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, and balance. For Geneviève, there were so many unknowns and even more questions. “What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me,” she says.

Effects of MS on the body

Fatigue, cognitive disruption, mood changes
Vision issues such as vision loss, blurred vision, and double vision
Difficulty with speech and swallowing
Incontinence and digestive problems
Difficulty with hand-eye coordination and numbness/tingling in hands
Sexual dysfunction
Loss of power in a limb or numbness
Walking difficulties and balance problems

Groundbreaking MS treatment pioneered in Ottawa

Once Geneviève and her family processed the news of her diagnosis, she learned everything she could about the illness. A family friend, who happens to be a nurse, had heard a lot about Dr. Mark Freedman and his transformational MS stem cell transplant research in collaboration with Dr. Harold Atkins and encouraged Geneviève to get in touch with The Ottawa Hospital’s MS Clinic. Meeting Dr. Freedman was a pivotal day that would shed new light on her future. “I see it as one of those very lucky life-changing moments when I made that call,” explains Geneviève.

Twenty-four years ago, many were skeptical when Drs. Atkins and Freedman first proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS. Today, they are known for pioneering this groundbreaking treatment which is now being used in many countries around the world. In fact, it was serendipity that led Dr. Atkins, a hematologist, and Dr. Freedman, a neurologist, to meet while they were working on a different project. The two started to discuss stem cell transplants and that would ultimately lead to the transformation of MS treatment.

While this was a time of uncertainty for Geneviève, she felt she was in the right hands to handle the complexity of her case. “Dr. Freedman was very kind from the beginning. It was very comforting to know that there were multiple treatment options if something didn’t work.”

Initially, Geneviève received the first line of treatment for a year that included injections every two days; however, it didn’t provide positive results. Next in line was a form of chemotherapy that targeted her immune cells. She remained on that treatment for two years, but once again, the results didn’t have the impact her medical team had hoped for, so, in January 2013, Dr. Freedman recommended the MS stem cell transplant.

MS symptoms were progressing quickly

At this point, Geneviève’s MS was progressing quickly. Both of her eyes were now affected, and increasingly her mobility was impacted. “I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to — either a person or a wall or something like that. There were also issues with muscle spasms and dizziness,” explains Geneviève.

Headaches were also a challenge, and life was becoming more difficult for this young woman who was working on her Master’s degree at UOttawa. Her degree was in organic chemistry, and lab work was challenging because of blind spots in her vision and a lack of dexterity. When it came time to decide whether to participate in the transplant, she explains there was no decision to make. “I knew about this treatment from the beginning. It was always in the back of my mind. I had already processed it. I do remember being sad that nothing else had worked and I had to do this or else my condition would continue to go downhill rapidly. It gave me hope but it was a very emotional day,” recalls Geneviève.

“I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to.”

– Geneviève Bétournay

She remembers the compassionate support she received from Dr. Freedman when it was time to consider the transplant. He explained it would be one of the hardest decisions she’d ever make and encouraged her to take the time to make sure it was right for her.

Geneviève learned that she could become infertile because of the procedure, so in the few months before her transplant, she had some of her eggs harvested and she also received a shot that could allow her eggs to go into “hiding” during the treatment.

Time for the MS stem cell transplant

In July 2013, Geneviève received her stem cell transplant. The process begins with purifying and freezing the patient’s stem cells which will later be “cleaned” in the lab. The next step is a strong chemotherapy treatment to destroy the patient’s immune system. The final step is the transplant of the clean stem cells back into the patient — that’s when a new immune system starts to develop.

It’s not an easy process, but Geneviève was focused on what the result might give her. “Mentally and physically, it was challenging, but to be honest, I’m a different person today because I went through that.”

How did a stem cell transplant halt MS?

Geneviève underwent an immunoablation and autologous hematopoietic stem cell transplantation (IAHST) to treat her MS. It’s a groundbreaking treatment pioneered by researchers at The Ottawa Hospital for patients with certain forms of multiple sclerosis. It involves harvesting and treating a patient’s own stem cells to remove traces of disease, eliminating their immune system, and then creating a new one using their newly “cleaned” stem cells. IAHSCT is currently being used to treat two other rare autoimmune disorders: myasthenia gravis and stiff person syndrome.

Learn more about stem cells.

“Those moments where something happened that I wasn’t able to do before – it’s like pure euphoria. It was joy. It was gratitude for something that you never thought you’d ever feel again.”

– Geneviève Bétournay

Geneviève says she was in the hospital for eight days before she was able to go home because she didn’t have any major infections or require constant monitoring. Also at that point, her cell counts started to go back up — her new immune system was starting to grow. She returned to the hospital as an out-patient for several months.

The next step was to determine the impact the transplant would have on her overall health. It took between eight and 12 months for Geneviève to recover, and then she started to notice tiny improvements. “That’s when I first noticed I could do something that I couldn’t do before, or I had lost the ability to do. The first thing I noticed was I could lift my right leg, because my right side was more affected than the left.”

As Geneviève saw these small improvements begin, she tried to temper her expectations. She didn’t want to let her hopes get too high, but she admits sometimes she couldn’t resist. “Those moments where something happened that I wasn’t able to do before — it was like pure euphoria. It was a joy. It was gratitude for something that I never thought I’d ever feel again.”

Was it all worth it?

Over the past decade, Geneviève has seen every single symptom get better. From lifting a single toe to moving a foot to being able to jump again, and then walking several kilometres without tripping and falling to the ground — these are big milestones on her road to recovery. The signs of MS are disappearing. “To date, it would seem I have not had any new relapses. No new disease activity. My vision improved, and I continue to recover, albeit very slowly as it takes a while to heal.”

When Geneviève reflects on how far she’s come, had she not undergone the stem cell transplant, she believes she would likely be in a wheelchair today. “It was 100% worth it. Just the fact that I can move blows my mind. I have a great deal of gratitude for the doctors and everything the hospital had done for me.”

And today, with only a slight limp, she walks up the steps into the Art House and appreciates each moment she has to celebrate the creative artists in our city and transformational treatment she received at our hospital. “It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment. Simply put, it saved my life, or perhaps you could say it gave me a second one.”

“It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment.”

– Geneviève Bétournay

Listen to Geneviève share her journey with MS in episode 66 of Pulse Podcast.

Listen Now:

Categories: Clinical Trials, Neuro, Stem Cell, World-Leading Research

Lukas Marshy takes us on his journey of the night he arrived at The Ottawa Hospital in distress and extreme pain. He needed specialized care from our neurosurgery team for a rare condition that resulted in a massive brain hemorrhage. Here is Lukas’ story in his own words.

It was late afternoon on a cold winter January day in 2012 when I was rushed to The Ottawa Hospital. Something was very wrong. That was ten years ago — but it’s a time in my life I will never forget.

I was 16 years old at the time and was playing video games — nothing out of the ordinary for a teenage boy. I remember I reached down to plug in the speaker for my computer and I felt dizzy — the room around me started spinning. I also realized I had a headache, and it was pretty bad.

I went upstairs to let my dad know, and he initially thought I was coming down with something. He gave me some Tylenol for the headache, and I went to lie down in my room. But when I looked up at the ceiling, it was spinning — I couldn’t even look at it. I yelled for my dad.

At that point, I thought I was going to be sick to my stomach, and he said, “Let’s get you down to the bathroom.”

When he was 16 years old, Lukas Marshy was treated for an ateriovenus malformation (AVM) at The Ottawa Hospital.

Red flags raised

Then I realized I couldn’t stand up — that’s when the red flags went up for my dad. He helped me to the bathroom, and I vomited. I remember clutching onto the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.

Eventually, out of exhaustion, I passed out and I was lying on the bathroom floor. I could hear my dad’s voice trying to prompt me to go back to my bed, but I couldn’t respond. He finally said, “If you don’t stand up, I’m going to have to call an ambulance.” And I thought to myself, ‘That’s perfect, I’m going to stay down because I need help.’ I just couldn’t say the words.

“I remember clutching on to the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.”

– Lukas Marshy

When the paramedics arrived, they asked lots of questions. They were concerned I had overdosed on drugs or had been drinking, but I knew that wasn’t the case. Eventually, I was able to tell them no.

They got me onto the stretcher, and we headed outside. I remember seeing the snow and feeling the cold on my body as they loaded me into the ambulance. They took me straight to CHEO where a CAT scan of my brain indicated a massive hemorrhage. At this point, doctors recommended that I be transferred to The Ottawa Hospital’s Civic Campus for specialized surgery.

Transferred to The Ottawa Hospital after brain hemorrhage diagnosis

While I was in and out of consciousness, and my memory is a bit spotty, I do remember being in extreme pain. I also remember my mom being by my side. When I think back on that night and arriving at the hospital, that was the worst part of the entire journey — the pain in my head was excruciating.

I was diagnosed with Arteriovenous Malformation (AVM). We learned I was born with an abnormal tangled mass of blood vessels in the back of my head. An intricate surgery by a skilled team was required, and as I waited for them to prep for surgery, I was given medication to ease the pain. That’s the first time I started to feel more comfortable — even though brain surgery was looming.

What is a brain AVM?

An arteriovenous malformation —or AVM — is an abnormal tangle of the blood vessels connecting an artery to a vein. An AVM disrupts normal blood flow and deprives the surrounding tissue of oxygen. AVMs can occur anywhere in the body, but when they’re in the brain, they’re more likely to cause long-term effects. About 88% of AVMs go undiagnosed, and once diagnosed, brain AVMs can usually be treated to reduce risks.

Normal blood vessels.

An abnormal tangle of blood vessels.

My dad stayed with me the whole time I was in the hospital — he even slept by my side at night. The team caring for me was kind, but having my dad with me was an added level of comfort.

“It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better.”

– Lukas Marshy

Lukas Marshy, shown with his dad, during treatment at The Ottawa Hospital for a brain hemorrhage. — Lukas was treated for a massive brain hemorrhage at The Ottawa Hospital.

When my dad told me I was going to have brain surgery, I reflected on an actual conversation I had with friends a couple years before. We asked each other “What is a type of surgery you’d never want to have?” If you can believe it, I said brain surgery because that seemed the most dangerous.

But when I was actually faced with that reality, I just remember thinking, “No problem.” It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better. I also had Dr. John Sinclair in my corner — he’s amazing.

Facing surgery for a brain hemorrhage

By 7 a.m. the next morning, I was ready for surgery.

It was an eight-hour procedure. The hemorrhage was in the cerebellum area of my brain, so the lower left back side of my head. Dr. Sinclair and his team removed most of the clot, which turned out to be pushing against my brain stem. That was scary to learn, but thankfully it didn’t cause any permanent damage. In fact, Dr. Sinclair explained they left a small portion of the clot there, which they cauterized, because they needed the swelling on my brain to come down before they could remove the clot completely.

Neurosurgeon Dr. John Sinclair treated Lukas Marshy for a brain hemorrhage.
Learn more about Dr. John Sinclair.

The surgery was successful, but I wasn’t done yet. I was placed in a medically induced coma for the first few days, and I remained in hospital for two or three weeks before I could go home. That first homemade sandwich I ate when I got home is something I won’t forget. I think it was the best egg salad sandwich I’ve ever eaten! My siblings were all home with me — and my dog — it was so good to be back.

Road to recovery

On February 28, 2012, I returned to The Ottawa Hospital for the second surgery to remove the malformation which had caused the bleeding. During this operation, the remaining clot and AVM were removed from my brain and Dr. Sinclair placed a titanium mesh about the size of a credit card to replace where a piece of my skull had been removed during the first surgery. Once again, I was put in a medically induced coma for three days, and when I woke up my recovery began.

“To this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!”

– Lukas Marshy

Next up was physiotherapy to help get my strength back. I was determined to get back home for good, so just over a week later when my care team asked me to show them how I managed the stairs, I tackled those steps with determination. I guess my progress was convincing because after that I was cleared to be discharged.

Lukas Marshy during his recovery from a brain hemorrhage. — Lukas during his recovery.

A whole new perspective on life

I had to use a wheelchair for a short period before progressing to a walker, but as a 16-year-old, I was ready to ditch it as soon as possible. I resumed my schoolwork at home for a few weeks until I was strong enough to get back to the classroom. I was finally reunited with my friends and was able to return to my grade 11 classes.

Something important to note, my marks after the surgery were in the 90s. I was thrilled because, you see, in grade 10, my marks weren’t anywhere near that level. In fact, I usually got 60s and some 50s. So, to this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!

“The Ottawa Hospital gave me a second chance at life.”

– Lukas Marshy

I’ve been great ever since. I haven’t had any long-term mobility or balance issues — I was incredibly lucky. Lucky that my dad took those first symptoms seriously and called for help. Lucky to have the brilliance of neurosurgeon Dr. Sinclair and the other healthcare providers leading my care. And lucky to be living a normal life today, because if the AVM hadn’t been discovered early after the symptoms started, it may have resulted in serious disability or death because of where it was located.

Lukas Marshy, shown on his graduation day, was treated for a brain hemorrhage at The Ottawa Hospital. — Lukas on graduation day.

Today, Lukas Marshy is married with two children.

The Ottawa Hospital gave me a second chance at life. Today, I’m married, have two young children, and I have a great job at Queen’s University in Kingston. That experience ten years ago as a 16-year-old changed my whole perspective on life. If this had not happened to me, I wouldn’t be the person I am today. I’ve been cherishing life ever since.

WATCH: Lukas Marshy reflects on his treatment and shares where he is now, thanks to the skill and dedication of his care team.

Download episode #64 of Pulse Podcast to hear Lukas Marshy’s story.

Categories: Creating Tomorrow, Creating Tomorrow, Creating Tomorrow, Neuro, Strengthening Critical Services

Originally published: September, 2020
Updated: July, 2022

“Leaner and meaner than ever”

When Fran hit the 18-month mark of his recovery, his care team didn’t want him to get his hopes up. Typically, once patients with Guillain Barré Syndrome (GBS) reach that point, they don’t see much more improvement, but five years later, Fran is still making strides. “I was able to stand up on skates this past winter and started skating for the first time since my diagnosis. Then just a month ago, I regained feeling in my feet. It was a feeling that I haven’t experienced since I got GBS,” explains Fran.

He’s even back to long-distance cycling and is feeling stronger each day. “I’m leaner and meaner than ever,” says Fran with that infectious smile.

Read Fran’s original story below and learn why he’s so grateful for the care he received at The Ottawa Hospital.

Long-distance cyclist Fran Cosper described himself as being in the best shape of his life as he headed into the winter of 2017. However, in mid-February he woke up in the middle of the night unable to feel his legs. The next morning, when Fran tried getting out of bed, he slammed onto the floor – his strong legs suddenly useless. Soon after, he was diagnosed with Guillain Barré Syndrome (GBS) – facing the possibility of permanent paralysis. Little did he know the road ahead would involve a team of experts, the help of 3D virtual reality at The Ottawa Hospital, and a determination not only to walk again, but also to help other patients.

When Fran first experienced those sudden symptoms, he initially thought it couldn’t be anything serious as he was very health conscious. He attempted to make his way to the basement that morning to work out. “I went to get on my hands and knees, and fell face-first on the carpet. I thought, ‘Well, I can’t move. This is much more serious.’ My wife, Elise, came down and saw that I had facial paralysis, and thought I’d had a stroke.”

But Fran knew that strokes typically affect only one side of the body and that something else — something serious — was happening.

What is Guillain Barré Syndrome?

Fran is secured to an adjustable bed prior to using the CAREN machine at the Ottawa Hospital Rehab Centre. — Fran in hospital.

After a thorough assessment, Fran was diagnosed with GBS. This rare autoimmune disorder causes the immune system to attack the nerves, damaging the myelin sheath, which is the nerves’ protective covering. As a result, the brain can’t transmit signals to the nerves in the muscles, causing weakness, numbness or, as in Fran’s case, paralysis.

An infection or virus can bring on GBS. The 56-year-old had had two colds back-to-back, which may have thrown his immune system into overdrive. Within days, his balance was off, and he had difficulty lifting pots to cook dinner. Hours later, the disease was full blown, attacking his nervous system and Fran couldn’t move.

“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do.”
– Fran Cosper

“We see patients with Guillain Barré Syndrome at The Ottawa Hospital Rehabilitation Centre probably five or six times a year,” says Dr. Vidya Sreenivasan, a doctor of physical medicine and rehabilitation. Some have mild cases, but others, like Fran’s, are more serious.

A more challenging road to recovery

About one in 100,000 Canadians contracts GBS every year. Recovery can take more than a year because the nerves re-grow slowly, one millimetre per month. For Fran, the journey would be much longer.

The disease continued its nerve damage following his admission to the hospital. After two weeks, he transferred to the Rehab Centre, where his care team included doctors, psychologists, social workers, recreation therapists, physiotherapists, respirologists, occupational therapists, and nurses.

“I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.”
– Fran Cosper

Fran was completely dependent on this team for all of his care. He needed to be washed, dressed, and turned in bed. He couldn’t even close his eyes. The nurses had to tape his eyelids shut so he could sleep.

“It was like having an out-of-body experience. I mean my brain was working fine but my body wasn’t doing what I asked it to do,” says Fran. He also faced excruciating pain because of the damage done to his nerves. As Fran lay there unable to move in his hospital bed, he made a decision.

“Oddly, I wasn’t afraid. I decided at that point, I was going to fight it. I was going to fight back and do the best I could to get better even though I didn’t know what the outcome was going to be.”

Rehab team ready with state-of-the art technology

Fran’s excellent fitness level, as well as his determination and positive attitude, helped him through when it came to the rigorous therapy plan. He had physiotherapy five hours a day, including three times a week in the Rehab Centre pool. Within two months, he could stand and take steps with help. He learned to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.

Fran in pool. — Fran would visit the Rehab Centre pool three times a week.

“The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.” – Fran Cosper

The CAREN (Computer-Assisted Rehabilitation Environment) system combines room-sized 3D graphics, a platform that moves with the patient in a harness, as they explore the 3D world, a dual-tread remote-controlled treadmill, and world-class motion analysis technology. Preprogrammed visual presentations allow the patient to respond to an environmental stimulus by shifting weight, increasing or decreasing speed and even making specific motions. Difficulty levels can be increased gradually as the patient progresses further in their rehabilitation treatment plans.

Fran in VR lab. — Fran learning to walk again thanks in part to our Virtual Reality lab – one of only two in Canada.

“This room is right out of sci-fi. It really challenges your body. After an hour of doing exercises, I was just sweating. The pool and this 3D room were invaluable. It would have taken me a lot longer to get my legs back if I didn’t have access to those tools.”

“I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.” – Fran Cosper

For Dr. Nancy Dudek, Medical Director, Amputee Program at The Ottawa Hospital Rehabilitation Centre, this unique system offers many benefits to patients. “There’s no end to things you can do with that sort of creativity. To be able to be hooked up to a harness without the support of the parallel bars still gives you the safety aspect. It’s a very innovative and beneficial system.”

Installed in 2010 in partnership with the Canadian Forces and with support from the community, the CAREN system was initially used in part to help injured soldiers returning from Afghanistan. Since then, many patients have benefitted, including those who have had a traumatic brain injury, stroke, neuromuscular disease, amputation, or chronic pain.

Continuing the road to recovery

Released from the Rehab Centre in October 2017, tears were shed by Fran and nurses who cared for him. It was those nurses who helped Fran with day-to-day care, teaching him how to wash and dress himself and be independent again.

Fran on exercise ball — Fran receiving care from the rehab team.

“I can honestly say that the kindness and level of care I got really humbled me. The nurses and staff have just been marvellous,” says Fran. “I’d basically been swiped off the planet for a year. But the only negative thing about being in the hospital was the disease itself.”

He walked out of the Rehab Centre using a walker. When he returned a month later for a follow-up appointment, he walked in on his own.

Today, Fran is back riding his bike – not quite to the 100-kilometer distances, yet, but his therapy continues. He still deals with pain, and his arms were slower to recover. His fine motor skills in his fingers are taking longer to get back to normal. As a saxophone player, he’s motivated to get his fingers working again.

“I’m kind of at the point now where I’m thinking I may be able to play again someday. I’m hopeful that I’ll be able to play my sax because my fine dexterity is improving – it’s a work in progress.”

Giving back as a volunteer

Fran will never forget two volunteers in particular who were there for him when he was being cared for at the Rehab Centre. Chris and Claude would come and take Fran for coffee and to talk. Initially, he had no idea who these blue-vested people were, but Fran quickly learned the important role they play at the hospital.

“I remember asking Chris why he was a volunteer. Chris explained to me that he had an inoperable brain tumour, and he was going to die. He told me, ‘I figured the hospital took such good care of me that I would spend the rest of my time volunteering.’ I broke into tears and decided right there I had to become a volunteer,” says Fran.

Fran in blue vest. — Today, Fran gives back as a volunteer at our hospital.

Pre-COVID, Fran would spend two days a week meeting patients, sometimes visiting his old room at the Rehab Centre, inspiring them about what is possible. “I remember seeing a woman in a hallway; she was on a gurney and going in for surgery – she was by herself. I stopped, leaned over, and told her it was going to be ok. Afterwards, I saw her again and she said, ‘Thank you.’”

That’s why Fran proudly wears the blue vest. He’s experienced the dark days and today, he’s happy to be able to help others when they need a reassuring voice to help them through – just like Chris and Claude helped him. He’s also grateful to be able to volunteer his time at the hospital that cared for him during his long journey to recovery.

Listen to Fran Cosper in his own words during a guest appearance on Pulse: The Ottawa Hospital Foundation Podcast.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Creating Tomorrow, Rehab, Technology, TOH Family

Rare is a word used to describe Bryde Fresque on many levels. He has a zest for life that sets him apart. In fact, his physician Dr. Carolyn Nessim, a surgical oncologist and clinician investigator at The Ottawa Hospital saw this firsthand when Bryde faced a diagnosis that would have him battle for his life, with one rare condition after the other. Ultimately, it would take a skilled team to come up with a diagnosis and treatment for Bryde – a pheochromocytoma – an uncommon tumour that left Bryde’s future uncertain.

Bryde’s journey to his diagnosis of a rare cancerous tumour began on Boxing Day of 2012. He was travelling home from Napanee when he started to have pain in his left side. He stopped at a pharmacy just outside Ottawa and by the time he got to the counter he was doubled over in pain. The pharmacist told Bryde to get to the closest hospital — a community hospital was not far away.

Not long after arriving in their emergency room, Bryde was sent by ambulance to The Ottawa Hospital where he could receive care that is more specialized. He was in a tremendous amount of pain. Upon arrival, Bryde was suffering from a spontaneous hemorrhagic rupture of the left adrenal gland and he was bleeding significantly. Thankfully, he was in good hands as our interventional radiologists performed an emergency embolization procedure. This is a procedure where a guide wire was placed in a vessel in his leg and that allowed physicians to get all the way to the bleeding vessel by the adrenal gland, at which point they injected a product that plugged the vessel and stopped the bleeding. He was hospitalized for ten days before he was able to go home.

Unusual symptoms continue to develop

Bryde continued to feel off. A young, active man, Bryde recalls unusual symptoms that he couldn’t shake. “I remember feeling really sweaty, I couldn’t cool down properly. I would stand under the gym’s cold water shower for 15 minutes post bike ride and it didn’t make a difference,” recalls Bryde.

By the summer of 2013, he was going through a battery of tests and questions at our Cancer Centre to try to pinpoint the diagnosis.

“He had such rare conditions – one right after the other.”
— Dr. Carolyn Nessim

Bryde Fresque, who was treated for a rare pheochromocytoma at The Ottawa Hospital, pictured kayaking in Iceland with his wifte, Natalie. — Bryde and Natalie kayaking in Iceland.

Though, at only 32 years old, cancer was the furthest thing from Bryde’s mind. “I was young, healthy, a non-smoker, non-drug user, and active. That active part of my life was actually the only time I initially showed symptoms. That’s when I would overheat on even the coolest days and couldn’t cool down afterwards.”

The spontaneous rupture of Bryde’s adrenal gland six months earlier contributed to the challenge of pinpointing a diagnosis. It was believed he suffered from a large hematoma – a large residual clot after the bleed. “He had such rare conditions – one right after the other. A spontaneous rupture of an adrenal gland happens very rarely. I would say the challenge is that because the blood clot is so significant, it hides the underlying tumour and so it’s difficult to identify on imaging,” says Dr. Nessim.

Pinpointing the cause

Bryde Fresque was treated for a rare cancer (pheochromocytoma) at The Ottawa Hospital — Bryde Fresque was treated for a rare cancer at The Ottawa Hospital.

As time progressed, Bryde developed issues breathing, he couldn’t bend in certain directions, and then he noticed a distention on his left side. Signs that had been pointing to a hematoma didn’t add up because a hematoma should have healed within a few months, according to Dr. Nessim. That’s when she started looking at the fact this could be a tumour.

Bryde’s case ultimately landed with The Ottawa Hospital Sarcoma Tumour Board. “We meet every Friday to discuss complex cases like Bryde’s. Everyone is in the room including medical oncology, radiation oncology, pathology, radiology, and surgery. We take each individual case and we discuss it as a group to determine the best course of action for a patient,” explains Dr. Nessim.

This panel of experts decided that surgery was the best course of action to not only diagnose Bryde’s condition but to treat him at the same time and remove this tumour that had significantly affected his quality of life. Given the large size of the tumour and the extent of organs it seemed to be invading on imaging, this would be a long and extensive operation with many potential risks and complications that would be best mitigated by a specialized team. The sarcoma team is well equipped and knowledgeable in how to do these complex operations. Our hospital is one of the three Cancer Care Ontario designated Sarcoma Centers in the province. Although Bryde did not have a form of sarcoma, the surgical approach for a pheochromocytoma is the same.

Most unusual pre-op visit

By the fall of 2013, the mass located on Bryde’s left side was now the size of a cinder block. Staying true to his rare and unique personality, Bryde, who loves Halloween, showed up for his pre-op appointment on October 31, 2013, wearing his homemade Iron Man costume!

On November 15, a huge team of more than 20 medical professionals assembled in the operating room. As Bryde lay on the operating table awaiting surgery, he recalls Dr. Nessim telling the team about the Halloween pre-op appointment, “Then she looked down at me and said, ‘Take a deep breath, Iron Man’ as I was intubated.”

Bryde had to put his full trust in Dr. Nessim and her team during the complex, 12-hour surgery. The procedure can carry several risks because although Bryde seemed to have a non-functional pheochromocytoma, with the stress of surgery there is always the risk of stimulating the tumour causing it to release adrenaline, which can lead to a serious increase in blood pressure during surgery. Bryde was given some special medications during the operation to help ensure that didn’t happen.

“I feel privileged every time I’ve been able to help a patient.”
— Dr. Carolyn Nessim

Dr. Carolyn Nessim, a surgical oncologist at The Ottawa Hospital — Dr. Carolyn Nessim, Bryde’s surgical oncologist

Just prior to going into the operating room for this intricate surgery, Dr. Nessim reviewed the scans one last time and then visualized each step, planning the order they would follow to remove the tumour successfully. The highly skilled group alongside Dr. Nessim included a urologist, a thoracic surgeon, and a Hepato-Biliary and pancreatic surgeon, along with two anesthesiologists. “It was a big case,” says Dr. Nessim.

Bryde had his left kidney removed, as well as his left adrenal gland, and a third of his pancreas. They performed a colon, bowel, and diaphragm resection and reconstruction for each, removed his spleen as well as an accessory spleen, which can be found in many patients, 10 lymph nodes, and the hematoma. Thankfully, Dr. Nessim was also able to remove the entire tumour. The surgery was a success.

Finding the answers

Bryde spent a total of 40 days in hospital recovering, and it was during that time that he finally received an explanation for his symptoms. He was diagnosed with pheochromocytoma, which is a rare form of tumour that can be cancerous. They usually form on one of the body’s two adrenal glands, which are located above the kidneys, and approximately 10% of pheochromocytomas spread to other parts of the body. Pheochromocytomas can be dangerous because they may produce an excessive amount of the hormone adrenaline, which makes people sick, primarily by increasing their blood pressure. In Bryde’s case, what made a diagnosis challenging before surgery was that his pheochromocytoma was considered non-functional, and his urinary tests for adrenaline markers were negative. But it’s possible it was releasing low levels of adrenalin all along.

“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour.”
— Dr. Neal Rowe

“It potentially explains all his sweating and feeling very flushed and hot as maybe he had a subclinical release of adrenaline,” confirms Dr. Nessim. Bryde also learned the tumour was cancerous.

Expertise in pheochromocytomas

Bryde with his wife and child — Bryde Fresque, his wife Natalie, and their son Edmond.

Much of the research, around the globe and here at our hospital, focuses on timely detection and treatment of pheochromocytoma. Dr. Neal Rowe is a clinical urologist at The Ottawa Hospital researching this type of tumour. “There are several known genes that increase the risk of a patient developing a pheochromocytoma. By identifying these genes in people, we can test family members, achieve early detection, and better understand the biology behind why these tumors form.” Dr. Rowe says this type of tumour affects between one to two cases per 100,000.

“Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.”
— Bryde Fresque

“The Ottawa Hospital is very well positioned in the study and treatment of this rare but dangerous tumour. We have a collaborative group of experts in endocrinology and medical genetics in addition to a dedicated team of anesthesiologists and surgeons. With our research and development of various national initiatives, I think we’re front and centre,” says Dr. Rowe.

Moving forward, upwards, and giving back

Today, Bryde is seven years post surgery, and cancer free, with no signs of recurrence. While his recovery took time, he’s back to living his active life and truly grateful for the care he received. In fact, to raise funds and awareness for rare neuro endocrine cancers, Bryde and his wife, Natalie, climbed Mount Kilimanjaro in Tanzania, as well as the highest pass in the world, located in Annapurna range of the Himalayas in Nepal – all while still being considered a cancer patient.

Bryde and Natalie at Uhuru Peak on Mount Kilimanjaro. — Bryde and Natalie on Mount Kilimanjaro.

“Being a cancer patient or being sick is a life-changing event. Thanks to Dr. Nessim and the team at The Ottawa Hospital, I got better – I get to enjoy my life to the fullest. I got to marry the girl of my dreams and I got to become a father.” He adds, “I honestly think if I had been anywhere else, if I had been under anyone else’s care, I probably wouldn’t be here today. I really wouldn’t.”

That’s why Bryde also holds an annual Halloween fundraising party, known as Spadinaween, to support our hospital. To date, he’s raised over $10,000 and Dr. Nessim even drops by to show her support.

The special bond between this patient and physician continues, as Bryde even enrolled to help Dr. Nessim with a global research project on sarcomas. For Bryde, it’s an honour to help other patients. “Me giving back to The Ottawa Hospital has come full circle as I was invited to partake in an international study on sarcomas with Dr. Nessim and other doctors from the UK, Italy, the States, Netherlands, and Australia – to help improve the patient experience. If I can turn a negative into a positive. I’m in!”

Seeing Bryde thrive today is what makes those long, grueling days in the operating room and the constant search for answers worthwhile. “It’s why I do my job. It’s the biggest joy and most rewarding,” says Dr. Nessim. “I feel privileged every time I’ve been able to help a patient.”

Download Pulse podcast today and hear Bryde and Dr. Nessim share more about his journey with a rare, cancerous tumour.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Cancer, Donors, World-Leading Research, World-Leading Research, World-Leading Research

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