Category: Patient Care

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.”

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

Categories: Cancer, Donors

Published: July 2023

To say The Ottawa Hospital is ahead of the game when it comes to data in healthcare is no exaggeration. In fact, for two decades we’ve been exploring the role of “big data”, while other institutions are only getting started. Today, our hospital is a world-leader in this field and has ambitious plans to deploy one of the most advanced data analytics platforms in Canada, if not the world.

It’s that drive to better serve our patients and our people that attracted Dr. Alan Forster to The Ottawa Hospital 20 years ago. “I left Harvard Medical School to become a part of a healthcare community that was completely committed to reorienting around patient safety and quality of care.”

Today, the Vice-President of Innovation and Quality and senior scientist at our hospital is quick to point out that while our hospital’s research community may have seemed smaller than Harvard’s or other centres around the world, he didn’t it see that way — and he still doesn’t. “We do punch above our weight in terms of impact,” explains Dr. Forster.

The Ottawa Hospital is leading the way in data in healthcare.

What is Big Data?

The term Big Data gained momentum in the early 2000s and refers to data that is large, complex, and rapidly generated. It is collected and mined by organizations for information, learning, and other analytics purposes including predictive modelling. The amount of data created by the healthcare industry through digitized records, medical technologies, and other sources means Big Data could change healthcare — if used effectively.

Why the desire for data to drive healthcare?

As a specialist in internal medicine, Dr. Forster was keenly aware of the patient journey, the role of the care team, and how that information flows. Or in some cases doesn’t. He was also aware of how little information was available to care teams regarding the patients they see. At the same time, there was no system in place to share information with the patient or the patient’s other care providers.

Dr. Alan Forster is the Executive Vice President and Chief Innovation and Quality Officer at The Ottawa Hospital.

Even more astonishing to Dr. Forster, there was also no ability to collect and store this information, or to monitor results, compare data, and learn from it. “After we provided patients with some of the most advanced technologies known to humankind, we could not even communicate our treatments or evaluate the impacts of what we did.”

He would use what he learned at Harvard — known at the time as one of the few hospitals in the world with a fully functional electronic medical record system — to drive change when he returned to his hometown of Ottawa. He knew a data warehouse would allow The Ottawa Hospital to study and monitor patient care efficiently and effectively.  

Where does healthcare data come from?

Healthcare data is generated from a huge range of sources, from medical records and staff schedules to wellness apps and wearable technology.

And so in 2004, with the full backing of the hospital’s leadership and funding from the Canada Foundation for Innovation, Dr. Forster began to build the infrastructure needed to house all this data. Five years later, The Ottawa Hospital’s Enterprise data warehouse was born.

For the first time, everything from basic patient information, surveys, and clinical notes to data from labs, pharmacies, and radiology, as well as financial and human resources data were housed in one place. These electronic medical records, from as far back as 1996, pulled information together from across the hospital in a standardized format. Housing it in a “warehouse” also allowed for studying and monitoring of patient care in a way that simply wasn’t possible before. In fact, healthcare providers could track a patient through all their interactions with the hospital, whether they visit a lab, the Emergency Department, or a clinic appointment.

But that was only the beginning.

Comparing apples to apples

Next up was aligning the whole hospital to use data to drive us forward. Deanna Rothwell, the Director of Analytics, leads the charge for the self-serve and data request services. “We build dashboards to find key performance indicators for leaders, so they have a single view of the truth and the facts of the hospital.”

“The demand for data is growing exponentially because of the awareness about how data can drive better decisions.

– Deanna Rothwell

This gives true data comparisons to analyze the data equally — an apples-to-apples comparison. Ms. Rothwell explains how when she first began her role in 2008, each person would come to meetings with different versions of a metric, like hospital admissions as an example. “People would have different definitions and retrieve data from different places. There was no standardization and there was also no standardized way of slicing and dicing the organization. So, we put a lot of effort into how we define things and a platform where everyone could get the same results,” she explains.

The process began to align the physician and administrative teams with the same scorecard and messaging. Ms. Rothwell’s team played a key role in ensuring easy access to information when it was needed. Dashboards were created to not only allow various teams or departments and research groups to see current results and trends over time, but also to drill down to different areas of the organization that are relevant to specific service lines or departments.

However, as the desire for data continues to grow a new challenge has emerged —accessing numbers quickly. “The demand for data is growing exponentially because of the awareness about how data can drive better decisions. Today, there’s more data out there, especially with EPIC, and that demand continues to increase. We wanted to provide a platform where people could safely and securely explore data on their terms,” explains Ms. Rothwell.

Big Data could:

Reduce healthcare organizations’ costs by 25%

Result in earlier diagnosis and improved outcomes

Help prevent disease

Accelerate research and discovery

Improve quality of care

Reduce medical error and adverse outcomes

What is the MDClone effect?

This is where MDClone comes in and it’s a game changer for our hospital. “MDClone offers a platform where people can self-serve and ask any data question they want at any time. So, they no longer must go through a queue of the analytics team,” explains Ms. Rothwell. “It’s data at their fingertips.”

“It uses synthetic data which means it is made up data about made up people rather than the patient’s personal details. That’s why it’s so exciting — you don’t have to worry about privacy.”

– Dr. Alan Forster

Our introduction to MDClone came through our partnership with the Sheba Medical Centre ARC (Accelerate, Redesign, and Collaborate) Network based in Israel. Developed in 2018, our partnership has grown and the Network itself has also grown globally.

Ziv Ofek, CEO of MDClone, leads a workshop on the use of MDClone technology for data analytics.

The MDClone platform is a powerful, self-service data analytics environment enabling healthcare collaboration, research, and innovation. Our hospital recently implemented the software to gain easier access to data for all physicians, researchers, and staff. As early adopters of the technology, we’ve been able to fulfil a niche of self-serve data.

MDClone removes the largest roadblock faced by anyone wanting to access data at our hospital — privacy. As Dr. Forster explains, the company provides an innovative approach to solving those problems. “It uses synthetic data which means it is made up data about made up people rather than the patient’s personal details. That’s why it’s so exciting — you don’t have to worry about privacy.”

What are the benefits of synthetic data?

The synthetic data behaves and has the same characteristics as the real data, without being the real data. Once you’ve decided if you’re on the right track with the synthetic data then you can apply to access real data with appropriate approvals to drive your results. An example could be a hospital employee who’s trying to determine how to reduce anemia for patients who go through surgery. They could use lab data to determine:

  • The number of patients who are going into the operating room.
  • What their rates of anemia are?
  • What their long-term outcomes are, or even short-term?
  • How long are they in the hospital?
  • Do they have complications when they’re in the hospital?

The data can show trends that can influence or inform future care and determine the cause of problems needing to be solved. Ms. Rothwell explains, “If I can reduce anemia by x percent, I know that I would reduce the hospital’s re-admission rate by 10 percent, just as an example. I can also estimate the impact of that on the hospital overall. I can then use data to monitor my progress on that issue and evaluate the outcomes. You need data at all points of the quality improvement process.”

What is Synthetic Data?

Synthetic data is artificially created data that stands in for real data while reflecting the actual statistical information from the original data. Synthetic data prevents users from identifying any individuals from the data, making it the most private solution to healthcare data analytics.

Leading the pack with healthcare data analytics

“As a healthcare organization we are ahead of the game, and we’ve been ahead of the game for many years. The ability to get your hands on synthetic data is phenomenal. It’s a great story for The Ottawa Hospital.”

– Deanna Rothwell

This all began as a pilot project in 2020 when the hospital’s data warehouse information was uploaded into MDClone and a trial run began. Then a training program was established with 250 individuals trained to date and more waiting due to high demand.

Did you know?

1600 BCE

The first known medical record is an Egyptian papyrus text from 1600 BCE

1663

The first use of statistical analysis was a study on bubonic plague mortality in 1663.

1969

The first electronic health record was created in 1969.

Data is also driving research at our hospital. When a study is being conducted, a scientist must wait for approval from the Research Ethics Board (REB) to get access to data. But with the MDClone’s synthetic data, they can do some early legwork. “You can do all of your exploratory work and analysis, understand the feasibility of the study, understand what the data is going to look like, and in parallel submit your REB application. People can go onto the platform, explore it themselves, and figure out exactly what data is going to be meaningful to them. So, when their REB approval comes in, they may have already completed the study design and analysis with synthetic data, so that speeds it up enormously,” says Ms. Rothwell.

Ultimately, it’s about accessing data faster to make better decisions, inform care, and find answers to provide better results for our patients. “As a healthcare organization we are ahead of the game, and we’ve been ahead of the game for many years. The ability to get your hands on synthetic data is phenomenal. It’s a great story for The Ottawa Hospital,” says Ms. Rothwell.

It all comes from data because data helps us know what’s working, helps us identify where the gaps are, and helps us develop solutions to improve — all of that rests on the data.”

— Dr. Alan Forster

Listen Now: How data drives better care for patients

Data and technology make for a bright future in healthcare

New Campus Development

At the New Campus Development on Carling Avenue, data that will inform better patient outcomes and a better patient experience. The new Centre for Innovation and Virtual Care is an excellent example of that — equipping patients with take-home technology, empowering them to manage their health using the latest artificial intelligence. Care teams will be able to remotely monitor a patient’s health journey and provide care when it’s needed.

“We will have better ways to support care providers to help patients rehabilitate. It all comes from data because data helps us know what’s working, helps us identify where the gaps are, and helps us develop solutions to improve — all of that rests on the data,” explains Dr. Forster.

City Connections

Being in Ottawa, at the heart of Canada’s high-tech sector has allowed us to stay ahead of the curve when it comes to technology and innovation — whether it’s training programs through our colleges and universities, the launch of the TD AIM Hub, or our relationship with Invest Ottawa — the economic agency for the City of Ottawa. Our connections to the business community have led to very tangible benefits.

In the future, we will provide living laboratory space to ideate, develop, test, and scale digital innovations and incubator space for revenue-generating partnerships with leading companies and thinkers addressing healthcare’s biggest challenges — all while training the next generation of healthcare innovators.

Categories: Creating Tomorrow, Innovation and Technology, Technology

At only 20 years old, Junie immigrated to Canada from Malaysia with ambitions to study at the University of Toronto. A new life would begin — one that would entice her family to follow her in the years ahead but would be filled with adversity.

While Junie was initially drawn to Canada for her studies, a particular experience in her early years in Toronto cemented her desire to make Canada her home. She remembers a newspaper stand on a busy street in downtown Toronto. “There was a pile of newspapers and I didn’t see anybody around. I noticed people came by, picked up a paper, and dropped some money in a bowl. It was so orderly. I couldn’t believe that people were so nice.” It was the honour system and that’s what Junie loved. “I remember thinking ‘This is a kind of society I want to live in.’”

Junie in Sydney, Australia

In subsequent years, Junie got married and her parents and three siblings followed her path to Canada. Her brother settled in Ottawa and in 1996, Junie, her sister, and their husbands decided to pay a visit to him at his new home. They had a wonderful time reconnecting.

As the two couples headed home after a week, they were involved in a head-on crash just an hour outside of Ottawa. It was a devastating collision, that left the two men dead, and the two sisters badly injured. Junie remembers waking up at the crash site and asking a police officer what happened. “He told me there was an accident and I remember seeing our two husbands slumped over in the front and then I lost consciousness.” The two sisters were rushed to The Ottawa Hospital Trauma Centre.

Eastern Ontario’s only Level 1 Trauma Centre for adults

The Ottawa Hospital is home to the only Level 1 Trauma Centre for adults in eastern Ontario — which is located at the Civic Campus. We care for the most critically injured patients from across the region, including western Quebec.

The team includes a trauma team leader, as well as an anesthesiologist, a team of emergency nurses, a group of resident physicians, and respiratory therapists — this allows them to be ready for the wide variety of complex cases that they handle, or when a Code One is called.

A Code One means a patient with significant injuries is coming to the hospital and all resources gather at the Emergency Department. This code can be called for a scenario when multiple patients are injured, like the motor vehicle collision Junie and her sister were involved in, or for instances where a single patient is injured. By contrast, a large-scale incident or any other community disaster results in a Code Orange being called.

When Junie woke up again, she was in the hospital with significant internal injuries. She learned her sister had suffered multiple fractures and was then told about the unimaginable loss — Junie’s husband and brother-in-law were gone.

“I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received.”

– Junie 

Junie was in the Intensive Care Unit for two weeks and was heavily sedated. She remembers the compassionate care she received, having to rely on others to bathe her and wash her hair. She will never forget their kindness and sensitivity. “I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received,” says Junie.

Clinical trial changes the practice of medicine

During Junie’s early days in the hospital, her brother Lawrence observed this compassionate care firsthand as he visited daily, supporting both of his sisters during their devastating loss. He also stayed by Junie’s side while her condition was critical — she was losing a significant amount of blood.

Junie’s brother Lawrence and his wife, Catherine

Junie had multiple blood transfusions to keep her alive and was asked to participate in a clinical trial to improve when blood transfusions should be given in critical care. Lawrence was impressed by the skilled team he observed, and he signed consent for his sister to participate in the trial, in hopes that it would help her and future patients.

“This research has saved thousands of lives and improved blood transfusions for millions of people.”

– Dr. Dean Fergusson

Not only did Junie get better but her participation in this research also helped to change the practice of transfusions worldwide. Dr. Dean Fergusson, Senior Scientist and Director of the Clinical Epidemiology Program at our hospital, explains what this means for patients. “Today, patients all around the world receive blood transfusions based on a more restrictive protocol developed at The Ottawa Hospital,” he says. “Thanks to patients like Junie, we now have a much better idea of when to transfuse, how long the blood should be stored for, and how to prevent bleeding in the first place, so patients can avoid transfusions. This research has saved thousands of lives and improved blood transfusions for millions of people.”

Filled with gratitude to this day

Today, Junie is living in Toronto with her second husband and is deeply grateful to this day for the exceptional care she and her sister received. Not long after she returned home, Junie became a monthly donor to our hospital – holding true to the promise she made while she was in the hospital that she would give back to those who cared for her.

Giving is something that her late mother instilled in her — Junie’s father died when she was very young. It helped mold the person she is today. “We were a working-class family, we weren’t rich, but we persevered. My mother was just an amazing person. She was selfless. So, my siblings and I learned from that — when you receive something good, you try to pay it back in kind, especially with deeds. I think that has a lot of influence on me,” explains Junie.

Junie visiting family

Strength is an attribute Junie also has carried on from her mother. At the age of 55, Junie was diagnosed with breast cancer. Right after her breast cancer operation, she faced an ovarian cancer diagnosis. She has seen firsthand the need for philanthropy in healthcare to provide the most advanced care. Despite everything she’s faced in life, Junie describes herself as lucky. “It’s still been a good life. It’s been 13 years since I was diagnosed with those kinds of cancers and I’m still here. I am very lucky. I’m a very lucky woman.”

“That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”

– Junie 

Now retired after a successful career in banking, Junie thinks to the future and how she can continue to pay it forward. That’s why she’s decided to leave a gift in her will to The Ottawa Hospital so patients will have the latest technology and most advanced treatment options to save their lives, just like she experienced. “That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”

Why Planned Giving is important?

By leaving a gift in your will to The Ottawa Hospital, you will be helping to shape the future of healthcare. It’s an extraordinary opportunity that you will give future generations – just imagine your legacy.

We’re here to provide you with the guidance you need to leave a gift in your will to support our hospital. This is an opportunity for you to create stronger healthcare for tomorrow, with a larger gift than perhaps you thought possible – larger than those made during your lifetime. Just imagine the legacy you will leave.

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

Categories: Clinical Trials, Creating Tomorrow, Gift In Will, World-Leading Research

The Ottawa Hospital has made great strides in addressing today’s most pressing challenges in neuroscience. We are internationally recognized for our groundbreaking research and treatment of many neurological diseases, such as stroke, neuromuscular illnesses, and Parkinson’s disease (PD).

In fact, we are one of very few centres in Canada where neurologists work hand-in-hand with basic scientists to tackle unsolved problems. Our goal is to foster new ideas and expand our range of clinical trials to quickly bring cutting-edge treatments directly to our patients. Some of the discoveries that lead to new interventions have been made here.

Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s, affecting over 100,000 Canadians. The disease continues to mystify according to Dr. Michael Schlossmacher, a neurologist and the Bhargava Family Research Chair in Neurodegeneration at The Ottawa Hospital. This Chair is an example of one way philanthropists, like the Bhargava family, actively support the hospital.

“It was in 1961 when one of my teachers in Vienna first discovered the Lazarus-type effect of how dopamine therapy can suppress the symptoms of Parkinson’s. That was six decades ago, and we now understand more of the mechanisms underlying the motoric deficits, but we still don’t have a therapy in place to stop the illness in its tracks,” says Dr. Schlossmacher.

Thinking outside the box for Parkinson’s treatment

Dr. Michael Schlossmacher, The Ottawa Hospital

“If we want to treat Parkinson’s, slow it down or stop it, it will only happen through research that identifies better ways to separate subtypes of the illness and confirm targets to develop drugs for interventions.”

– Dr. Michael Schlossmacher

While progress is slow and often frustrating for patients, active research continues to probe for answers. “If we want to treat Parkinson’s, slow it down or stop it, it will only happen through research that identifies better ways to separate subtypes of the illness and confirm targets to develop drugs for interventions. Then, we’ll need to test them in the clinic and, upon demonstration of safety, apply them to a large body of patients in trials to gauge efficacy,” explains Dr. Schlossmacher. He is quick to point out that our Parkinson’s Research Consortium has made a name for itself in Canada and internationally, both on the clinical side and through basic research. Some of the clinical research activity is directed at improved integration of care delivery that we have already available today.

Philanthropy and grants play a pivotal role in moving research forward. For Dr. Schlossmacher and his team, it often allows them the opportunity to develop ideas that are largely out of the mainstream and represent ‘outside the box’ thinking. “Philanthropy has the potential to transform research activities by amplifying them and supporting talented trainees that can work on creative, new ideas.”

Does Parkinson’s start in the nose?

Over the years, research has shown more than 80% of people with Parkinson’s disease suffer from a reduced sense of smell — it often occurs years before the onset of typical movement-related symptoms. Understanding those early indicators could help in an early diagnosis for patients.

Recently, a US $9-million grant from the Aligning Science Across Parkinson’s (ASAP) initiative was announced to further explore this idea. The hope is to determine whether scent-processing nerves that connect the inside of the nose to the brain may play a role in the development of the disease. Dr. Schlossmacher is the overall leader of the effort.

Dr. Julianna Tomlinson, the scientific program manager for the international team and co-director of research in the Schlossmacher Lab at our hospital, explains the importance of this study. “For us, this is an incredible opportunity to align efforts around the world, because it brings together scientists previously anchored in the PD field with researchers who heretofore have been working outside the field of Parkinson’s.”

There are eight institutes in five countries collaborating on this global study. It’s a unique opportunity to get answers to questions that scientists here in Ottawa have been asking for quite some time, including what role environmental triggers (other than toxins) play in Parkinson’s disease as they interact with genetics. “Right now, the treatments for Parkinson’s help the symptoms but they do not stop the progression of the disease. If we can identify disease processes at an early stage, then hopefully we will be able to stop or at least slow its progression before it reaches those later stages,” says Dr. Tomlinson.

The Ottawa Hospital leads this international effort

There are five main areas that this interdisciplinary and multinational study is pursuing. Our hospital’s focus is on how the immune system relates to Parkinson’s. Specifically, laboratory models will determine how viruses and bacteria could lead to changes in the body that are linked to pathology that is seen in the diseased human brain. Understanding the function of genes that are linked to Parkinson’s and whether those genes could be functioning in the immune system, rather than just in the brain, will also be explored.

The support of our hospital is instrumental in being able to lead this international effort. “There are so many people who are involved in making this work. It’s a full team effort, including financial officers, publication experts, and colleagues with knowledge in technology transfer,” explains Dr. Tomlinson.

Ultimately, it’s about finding answers for our patients and their family members who are desperately waiting for a breakthrough. As Dr. Schlossmacher explains, that’s why the world will be watching these scientists. “From an innovation and creativity perspective, we are setting the stage as a team as to how complex research avenues could be brought together, where people work collaboratively and constructively. We don’t undermine each other; we really complement each other and enable each other.”

Making the patient connection

For nearly two decades, Kelly McDonald felt there was something physically wrong with her, but even an eventual diagnosis of fibromyalgia in her 30s didn’t provide her with the answers she needed. McDonald, a professional photographer with a sharp eye, always knew something was off. Her stance wasn’t great, she struggled with her posture, and she’d get tired easily. However, solving her health mystery was an ongoing challenge and source of frustration. “You know, people think you’re a hypochondriac,” says Kelly.

It wouldn’t be until 2021, at the age of 52, when Kelly was diagnosed with Parkinson’s disease. In recent years, she started to develop tremors, her handwriting deteriorated, and she increasingly had a hard time getting her foot properly placed in her shoe. It was at that point, Kelly’s husband convinced her to see her doctor. Soon her right side became stiff and at times, she also felt numb. Kelly thought she was having a stroke.

“I consider myself a Parkinson’s warrior. I want to be a warrior. I want to bring more awareness to this disease, and I want people to be diagnosed earlier.”

– Kelly McDonald
Kelly McDonald
Knitting is a passion that Kelly won’t yet
give up.

When Kelly met with a neurologist at The Ottawa Hospital, tests revealed she had Parkinson’s — a diagnosis that she, surprisingly, welcomed. “I was just relieved, because I thought I was going to die from a stroke, like my dad did,” remembers Kelly.

Kelly’s father also had suffered from Parkinson’s. Moreover, soon after her diagnosis, she learned even more about her family history, namely that it also had affected the paternal side of her family. She is being cared for by Dr. David Grimes, the Head of the Division of Neurology at our hospital and an expert in movement disorders. It was Dr. Grimes who asked Kelly whether she would be interested in a study known as the Parkinson’s Progression Markers Initiative (PPMI).

Kelly admits that there were some dark days after her initial diagnosis. But in coming to terms with her new reality, she woke up one morning with a new view on her life. “I decided I have this, let’s do something good. I consider myself a Parkinson’s warrior. I want to be a warrior. I want to bring more awareness to this disease, and I want people to be diagnosed earlier,” explains Kelly.

“A lot of people start to tremor when they’re older, and some people think it’s a disease that only affects older people. But Michael J. Fox was diagnosed when he was 29.”

– Kelly McDonald

She enrolled in the PPMI study to help all those living with a Parkinson’s gene mutation, like her, that don’t realize they have it. It’s not until the shaking begins that the red flag goes up. “A lot of people start to tremor when they’re older and some people think it’s a disease that only affects older people. But Michael J. Fox was diagnosed when he was 29.”

What is PPMI?

PPMI is a landmark study led by The Michael J. Fox Foundation investigating better treatment options and prevention of the disease.

The Ottawa Hospital is one of nearly 50 sites across 12 countries participating in the expansion of the PPMI study. The team at our hospital is recruiting people recently diagnosed with Parkinson’s, who are not yet taking medication to control symptoms, as well as people age 60 and older who do not have Parkinson’s but are living with certain risk factors. Those interested in enrolling at The Ottawa Hospital can find the detailed eligibility criteria and how to contact the study team here. The Ottawa Hospital was the first Canadian study site to recruit participants when the study started to include sites outside the US; the expansion phase of the study means there could be 4,000 participants across all sites by the end of 2023.  

“We are proud to be partnering with The Michael J. Fox Foundation and other PPMI site participants, and we are very grateful to the study’s dedicated volunteers who are helping us to move toward a future of disease prevention and better options for those living with Parkinson’s.” 

– Dr. Tiago Mestre

Dr. Tiago Mestre is the principal investigator at our hospital, and he explains initial discoveries from this global study have already had an impact. “Early findings have revolutionized the understanding of Parkinson’s biology and the design of clinical trials testing potential new treatments, but there is much more to uncover. We are proud to be partnering with The Michael J. Fox Foundation and other PPMI site participants, and we are very grateful to the study’s dedicated volunteers who are helping us to move toward a future of disease prevention and better options for those living with Parkinson’s.”  

Kelly joined the study mid-2021 and she’ll be monitored for 13 years. She says it’s been an amazing experience so far and she’d encourage others to consider joining. “Not only do you gain information about yourself and current information on your condition, but a study like this can help other people in the future. It also seems like Parkinson’s runs in my family. I could learn important information that could help my sister or my niece.” says Kelly.

For now, she’s looking ahead and doesn’t lose focus, whether it’s on her photography or as a warrior combatting Parkinson’s.

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

Categories: Neuro, Parkinson's

Content Warning

This story contains information about eating disorders including anorexia and bulimia.

The long-term effects of the COVID-19 pandemic are only now starting to come to light, but mental health is certainly one area impacted the most, including an escalating demand for our eating disorder services, according to Dr. Ruxandra Antochi, Medical Director of the Eating Disorders Program (EDP) at The Ottawa Hospital.

With the help of the Ontario Ministry of Health Roadmap to Wellness, our hospital will work to fill critical gaps in the care of patients with eating disorders, particularly in youth. The EDP is a multidisciplinary program that provides treatment for people with eating disorders such as anorexia nervosa and bulimia nervosa.

“In some ways, the pandemic has increased access to care for patients by taking down the geographical barriers, because virtual care can be accessed from everywhere. Before the pandemic, patients who traveled from elsewhere had to pay for a hotel to stay nearby and be able to attend the Monday through Friday program.”

— Dr. Ruxandra Antochi

It traditionally serves patients in the eastern Ontario region. As Dr. Antochi explains, with services stretched since the pandemic, our EDP has welcomed patients from right across Ontario. “In some ways, the pandemic has increased access to care for patients by taking down the geographical barriers, because virtual care can be accessed from everywhere. Before the pandemic, patients who traveled from elsewhere, had to pay for a hotel to stay nearby and be able to attend the Monday through Friday program.” So, while virtual care is more accessible to patients, the increase in patients also puts increased pressure on the program and staff providing the care.

“When I was growing up, I always wanted to be someone else or look a certain way.”

— Hannah Hotzwik

Eating disorder warning signs

  • Unusual preoccupation with weight, food, calories, nutrients, dieting, or exercise
  • Eliminating certain foods or restricting whole categories of food
  • Abnormal, antisocial behaviour when eating with others
  • Strict food rituals (different foods can’t touch, eating only one type of food etc.)
  • Skipping meals or only taking small portions
  • Noticeable weight fluctuation
  • Stomach issues and complaints (reflux)
  • Menstrual irregularities (missing periods)
  • Poor dental, skin, hair, or nail health
  • Extreme mood swings
  • Trouble concentrating
  • Dizziness when standing

Seeking help during the pandemic

Originally from the Toronto area, Hannah Hotzwik is 20 years old and has been attending Carleton University for two years — in the midst of a pandemic like many other students. Hannah explains she always had body image issues, but the isolation of the pandemic amplified her mental health problems. “When I was growing up, I always wanted to be someone else or look a certain way. Then in the beginning of 2021, I first noticed that this might be an eating disorder. I had some health issues in late 2020 that caused me to lose my appetite, so I wasn’t eating as much and while I didn’t initially think, I’m going to be skinny, it turned into that,” says Hannah.

It wasn’t long before Hannah realized she was looking skinnier and “the way she always wanted to look”. It tied back to the 19 years she spent believing that thinner was better. She then became hyper-aware of what she was eating, her calorie intake, and her activity level. She recalls it being a stressful time and then the situation started a downward spiral. “I had returned to residence in 2021 after the holidays before any of my roommates. I remember thinking this is the perfect opportunity. Nobody will know I was eating as little as possible,” recalls Hannah.

When Hannah’s roommates eventually returned, they were concerned because she was looking very thin. She eventually confided in them saying she may have an eating disorder. A few months later, Hannah was seeking a referral to the EDP at The Ottawa Hospital.

By May, Hannah had her first appointment with Dr. Antochi, who recommended her for the day hospital program, however, the wait would be two to three months. On September 7, 2021, Hannah was accepted into the program. Looking back, she remembers that wait was difficult. “It was hard. It was a lot of emotional drainage and avoidance. I didn’t have the skills yet to get through those times.”

Seeking help during the pandemic

Originally from the Toronto area, Hannah Hotzwik is 20 years old and has been attending Carleton University for two years — in the midst of a pandemic like many other students. Hannah explains she always had body image issues, but the isolation of the pandemic amplified her mental health problems. “When I was growing up, I always wanted to be someone else or look a certain way. Then in the beginning of 2021, I first noticed that this might be an eating disorder. I had some health issues in late 2020 that caused me to lose my appetite, so I wasn’t eating as much and while I didn’t initially think, I’m going to be skinny, it turned into that,” says Hannah.

It wasn’t long before Hannah realized she was looking skinnier and “the way she always wanted to look”. It tied back to the 19 years she spent believing that thinner was better. She then became hyper-aware of what she was eating, her calorie intake, and her activity level. She recalls it being a stressful time and then the situation started a downward spiral. “I had returned to residence in 2021 after the holidays before any of my roommates. I remember thinking this is the perfect opportunity. Nobody will know I was eating as little as possible,” recalls Hannah.

When Hannah’s roommates eventually returned, they were concerned because she was looking very thin. She eventually confided in them saying she may have an eating disorder. A few months later, Hannah was seeking a referral to the EDP at The Ottawa Hospital.

By May, Hannah had her first appointment with Dr. Antochi, who recommended her for the day hospital program, however, the wait would be two to three months. On September 7, 2021, Hannah was accepted into the program. Looking back, she remembers that wait was difficult. “It was hard. It was a lot of emotional drainage and avoidance. I didn’t have the skills yet to get through those times.”

Eating disorder warning signs

  • Unusual preoccupation with weight, food, calories, nutrients, dieting, or exercise
  • Eliminating certain foods or restricting whole categories of food
  • Abnormal, antisocial behaviour when eating with others
  • Strict food rituals (different foods can’t touch, eating only one type of food etc.)
  • Skipping meals or only taking small portions
  • Noticeable weight fluctuation
  • Stomach issues and complaints (reflux)
  • Menstrual irregularities (missing periods)
  • Poor dental, skin, hair, or nail health
  • Extreme mood swings
  • Trouble concentrating
  • Dizziness when standing

Entering the Eating Disorder Program

After the initial consultation at the hospital, there are three options of care: the patient can be admitted to the inpatient program at the hospital, enter the day hospital program, or they can be given community-based resources.

As part of the programs, and under the guidance of a dietitian, patients are offered a meal plan they are expected to follow and complete each day. Patients also take part in skill building including through cognitive behavioral therapy, dialectical behavioral therapy, and nutritional education.

“Learning to build these skills and to be able to use them to deal with intense negative emotions instead of resorting back to the eating disorder symptoms is critical,” explains Dr. Antochi.

Some patients also require medications, especially for comorbid conditions that frequenctly co-occur for someone who’s suffering from an eating disorder. “Most common comorbidities could be depression, anxiety, PTSD, addiction, or personality disorder,” explains Dr. Antochi.

Did you know?

Approximately 600,000 to 900,000 Canadians are living with an eating disorder at any given time.
Approximately 600,000 to 900,000 Canadians are living with an eating disorder at any given time.
Eating disorders are the second deadliest mental illness.
Eating disorders are the second deadliest mental illness.
A higher weight is associated with a higher risk of developing an eating disorder.
A higher weight is associated with a higher risk of developing an eating disorder.
Transgender and/or nonbinary people are more likely to develop eating disorders, which may be linked to gender dysphoria.
Transgender and/or nonbinary people are more likely to develop eating disorders, which may be linked to gender dysphoria.
Women account for 90% of all eating disorders.
Women account for 90% of all eating disorders.
Racialized people experience eating disorders at higher levels than white people, but they often receive less support and struggle to get treatment.
Racialized people experience eating disorders at higher levels than white people, but they often receive less support and struggle to get treatment.
Eating disorders increased during COVID-19, but accessing support was more difficult.
Eating disorders increased during COVID-19, but accessing support was more difficult.
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What is an eating disorder?

Eating disorders are serious mental and physical illnesses that involve a complicated and damaging relationship with eating, food, weight, exercise, and body image. They can affect anyone and can often be life-threatening, but recovery is possible.

What is body dysmorphia?

Body dysmorphic disorder (BDD) involves someone having an intense focus on a part of their body, leading to a disproportionate and/or inaccurate view of how they appear. In people with eating disorders, their BDD often focusses on weight.

What is anorexia?

Stemming from Greek for “a loss of appetite,” anorexia nervosa has three main criteria that need to be met for a DSM-5 diagnosis: a restriction of food leading to a significantly lower weight than expected for the individual, an intense fear of gaining weight, and a disturbance in the way the person sees their body.

What is orthorexia?

Named in 1996, orthorexia is not an official diagnosis, but describes a preoccupation with eating in a “healthy” way that becomes obsessive to the point of being disruptive.

What is bulimia?

Bulimia nervosa is characterized by cycles of overeating (binging) and ridding the body of that food through self-induced vomiting, laxatives, or other means (purging). In some cases, people may also excessively exercise or fast (avoid eating food for extended periods).

What is binge eating disorder?

While most people overeat on occasion, binge eating disorder involves eating an unusually large amount of food in a short time, feeling out of control in the moment, and feelings of guilt and shame.

Finding her own voice

Hannah recalls being nervous early on about whether the program would work for her. Her doctors explained this was normal. “At the beginning of the program, your eating disorder voice is so loud. And it’s so controlling that it’s convinced you that you don’t need this. But the point of the program for me was to be able to identify my own voice and what my body and my mind wanted, rather than the disorder,” says Hannah.

For eight weeks, Hannah was enrolled in the day program, which was done virtually. With each week, she progressed in small steps from eating in group sessions to becoming more comfortable with gaining weight. Then Hannah began the post-day hospital Relapse Prevention Program for the next 12 weeks. “The first four sessions are weekly. So, each week, I would talk to one of the nurses and Dr. Antochi. We reviewed what I’ve had to eat that day. And I’d have homework to complete, and we’d go over it together. Then we’d talk about skills and how to deal with things that cause stress, anxiety, and other issues that might lead back to going to my safe space of my eating disorder.”

After completing their program, patients move on to the Eating Disorder Transition Program that continues their care in a community outpatient-based setting.

Hannah in the park
Hannah Hotzwik enjoys spending time outdoors.

After completing their program, patients move on to the Eating Disorder Transition Program that continues their care in a community outpatient-based setting.

Grateful for access to care

As Hannah continues her journey, she’s grateful to the EDP for giving her the skills to live a healthier life both physically and mentally. She continues her studies at Carleton University in physical geography and is passionate about climate change and reducing our carbon footprint. “I definitely would not be where I am today without this program. When I look back to before the program, I wasn’t doing well. Now I can confidently say, I’m doing a lot better. I still have challenges and hard days. But the hospital provided me with so many resources and skills that I don’t react the same way as I used to.”

“Now I can confidently say, I’m doing a lot better. I still have challenges and hard days. But the hospital provided me with so many resources and skills that I don’t react the same way as I used to.”

— Hannah Hotzwik

Did you know?

The Ottawa Hospital is a major provider of mental healthcare in the region. “With two psychiatric emergency services, more than 90 beds, a day hospital program, outpatient services, a mobile crisis program, and specialty programs in eating disorders, first episode psychosis and perinatal psychiatry, we are often the first place patients turn to for help,” explains Dr. Jess Fiedorowicz, Head and Chief of our Department of Mental Health.

For Dr. Antochi, there are many others waiting for help and that’s why The Ottawa Hospital wants to expand the Eating Disorder Transition Program to include two additional streams to help meet patient needs. One would be the Eating Disorder Youth (EDY) service in collaboration with CHEO and the other would be the Eating Disorder Readiness (EDR) program which will proactively care for patients awaiting their first assessment or who are currently waitlisted for admission into intensive services by providing them with support and education. “The goals of care in the EDP are centered on patient engagement in collaboration with the healthcare team. It has been inspiring to witness the courage and determination of persons with eating disorders on their journeys towards health improvements and recovery. In addition, it has been a rewarding experience to be part of the EDP team, working alongside colleagues with a strong commitment and dedication towards the best interest of patients’ care,” explains Dr. Antochi.

Who to call for help?

If you or someone you know is experiencing serious mental health problems, call the Mental Health Crisis Line toll free at 1-866-996-0991, or locally at 613-722-6914, 24 hours a day. If you are in immediate danger or a life-threatening situation, call 911 immediately. If you need urgent medical attention go to your nearest hospital.

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

Categories: Mental Health, Strengthening Critical Services

Originally published: January, 2022

When Owen Snider faced the news that his lymphoma had returned for the third time in ten years, he knew his options were running out. But a transformational new treatment known as CAR-T therapy gave him renewed hope. The Ottawa Hospital was recruiting patients for a clinical trial investigating a made-in-Canada approach to this cutting-edge treatment. He just needed to qualify for the trial.

In 2010, Owen was diagnosed with large B-cell lymphoma. In his early 60s at the time, he went through a chemotherapy treatment known as R-CHOP. For most people, it lasts 18 weeks. “It was a rigorous treatment. I got through it okay and was six years clear, but then it came back — the lymphoma returned in 2016,” says Owen.

When the cancer returned, his care team at The Ottawa Hospital vetted him for a stem cell transplant. By the summer of that year, he went through what he called an intensive program using his own stem cells. A high dose of chemotherapy was used to remove harmful immune cells in preparation for the transplant of his own healthy cells. “It’s pretty brutal, and after two or three months of wishing maybe I wasn’t around, things improved. I was clear for another four years.”

“I was given five or six months to live. My wife and I were downhearted with that news.”

— Owen Snider

Lymphoma returns for a third time

Following his stem cell transplant, Owen remained healthy for four years, enjoying retirement at his home in a beautiful, wooded area near Calabogie, where he lives with his wife, Judith Snider. But then Owen faced his biggest challenge yet when the lymphoma returned — again. This time, the diagnosis came in May 2020, in the midst of the pandemic. “I remember my oncologist saying they’ve done pretty much everything they could. I was given five or six months to live. My wife and I were downhearted with that news. I was basically going to be kept as comfortable as possible for six months,” remembers Owen.

Judith and Owen Snider kayaking.
Judith and Owen Snider kayaking.

However, one week later Owen received a lifeline. His oncologist called to say a CAR-T therapy clinical trial had opened at The Ottawa Hospital — a Canadian first. They wanted to see if he would be a good candidate. Throughout June of 2020, he went through a battery of tests and scans to see if he qualified for the trial.

“This type of immunotherapy research is groundbreaking, and it’s never been done in Canada before.”

– Dr. Natasha Kekre

By mid-June, Owen got the green light. He was a candidate for the clinical trial, and didn’t hesitate to enroll. “I either participate in the trial or I lie around here for four or five months waiting for the end. Which choice would you have made? The positive way to put it is that I was very excited to be a part of the trial. We’re the kind of people where the glass is always half-full,” explains Owen.

What is CAR-T therapy?

CAR T-cell therapy is a type of immune therapy that is an emerging biotherapeutic treatment that harnesses the power of a patient’s own immune cells, known as T-cells, to treat their cancer. T-cells play a critical role by killing abnormal cells, such as cells infected by germs or cancer cells. In some cancers, like lymphoma or leukemia, cancerous cells become invisible to the T-cells that are meant to kill them. In CAR-T therapy, the T-cells are collected and reprogrammed in the lab to recognize and destroy the cancerous cells.

Dr. Natasha Kekre is a hematologist and associate scientist at The Ottawa Hospital. She is leading the development of Canada’s first CAR-T research platform in collaboration with the BC Cancer Centre. “This type of immunotherapy research is groundbreaking, and it’s never been done in Canada before. This is a therapy that uses a patient’s own immune system. It’s personalized medicine — it’s very individualized to each patient,” explains Dr. Kekre.

The Ottawa Hospital is one of the first hospitals in Canada to participate in nationally-led CAR-T trials, and as one of Canada’s top research and treatment centres, the hospital is ideally positioned to play a lead role in bringing an innovative CAR-T research program to Canada, and to Canadian patients.

Going for the Pac-Man effect

In late June 2020, Owen went through apheresis which is the process of withdrawing the T-cells in his blood. “They put an IV in my right arm, and ran the tubing through the machine, and the machine processes the blood and pumps it back through the tubing into my other arm. I lay there on the bed for three or four hours, without moving I should add.”

“It’s just like Pac-Man, the modified T-cells ran around in my blood stream, chomping away at the lymphoma.”

– Owen Snider

Those T-cells were then sent to a lab in BC, re-programmed, and then returned to our hospital two weeks later. Then the T-cells were re-administered just like a blood transfusion. “It allows for that new immune therapy in these cells to go and find the patient’s cancer cells, attack them, and kill them. And it also stimulates the immune system in that patient to further go attack and fight their cancer,” explains Dr. Kekre.

On July 2, Owen received a PICC line and then went through three days of chemotherapy. Four days later he was re-injected with his T-cells and they got to work. “It’s just like Pac-Man, the modified T-cells ran around in my bloodstream, chomping away at the lymphoma.”

His re-programmed T-cells were specifically looking for cancer cells to kill. Owen would need to wait to find out if it was working.

Owen Snider, seen at home, was treated for lymphoma as part of a CAR-T clinical trial.
Owen Snider

Did the CAR T-cells therapy work?

One month later, Owen and Judith received some exceptional news. “At my check-up 30 days after getting my T-cells back, I was almost clear of cancer. The scan showed that there was almost nothing left. I was gobsmacked,” he says.

By the three-month mark, Owen says he was as “clean as a whistle.” Eighteen months later, there is still no sign of lymphoma.

For Dr. Kekre, giving patients like Owen new hope for the future is what inspires her. “For the first time, I think in a long time, Owen felt that the lymphoma might actually be disappearing. He’s had multiple scans since then that show the same thing. And so now, I think he’s starting to believe it. And I think that’s the reality of why I do this, because patients like him who had no options before, could soon have the option of CAR-T therapy. That’s what happened for Owen and that’s what we hope will happen for many more patients,” says Dr. Kekre.

Dr. Natasha Kekre and Owen Snider. Owen was treated for lymphoma as part of a CAR-T clinical trial at The Ottawa Hospital.
Dr. Natasha Kekre and Owen Snider. Owen was treated for lymphoma as part of a CAR-T clinical trial.

What’s next for the clinical trial?

Dr. Kekre and her team are monitoring all patients enrolled in the trial and published preliminary results in June 2022. The purpose of the clinical trial is to provide proof to Health Canada this therapy is safe. “The reality is that we have a data safety monitoring board, which watches for the safety of the trial, and they’ve had no concerns. So, from a safety point of view, we’re very happy with the trial. And that’s why we are still open and we’re still able to enroll more patients,” explains Dr. Kekre.

Why is The Ottawa Hospital unique in its CAR-T therapy?

CAR-T therapy needs to be individually manufactured for each patient using the patient’s own cells combined with large amounts of highly pure virus to deliver the chimeric antigen receptors (CAR) gene. The Ottawa Hospital’s Biotherapeutics Manufacturing Centre is ideally positioned to manufacture the clinical grade virus needed to create CAR T-cells for clinical trials. In fact, we have the only facility in Canada that has produced this kind of virus for clinical trials.

The hope is that one-day CAR T-cell therapy may also be a treatment for a variety of cancers. “The world is watching us,” explains Dr. Kekre. “We’ve had a lot of attention from Denmark, and a few other European countries are reaching out. They believe in a system similar to ours, where patients all have the right to access healthcare. If CAR T-cells are here to stay, they have to be done in a sustainable approach for our patients. And that’s a big part of what we are building — this is only the beginning. And that’s what people are looking at us to see how we do it.”

“Without philanthropy, we wouldn’t have a Biotherapeutics Manufacturing Centre or a Methods Centre at The Ottawa Hospital, and we wouldn’t be able to do innovative clinical trials like this.”

– Dr. Natasha Kekre

This made-in-Canada CAR T-cell research platform will give Canadian patients more access to innovative clinical trials. “Canadian cancer patients shouldn’t have to wait for the research to be done elsewhere but be able to participate in innovative clinical trials here at home,” says Dr. Kekre.

Grateful for each day and philanthropic support for research

Today, Owen appreciates each day and a good quality of life thanks to the clinical trial. He feels strong and can’t wait for the day when he and Judith can travel again — grateful for the lifesaving research. “It was an honour and a privilege to be chosen for the trial.”

He also credits the extraordinary care team and those special moments when he visited the hospital. “I can tell you that I always felt more than comfortable. I felt encouraged by anyone I met. The team on 5 West as we know it, is wonderful. I had an occasion to go back there last spring, and it was like walking back into Cheers — everybody knows your name.”

As a longtime supporter of The Ottawa Hospital, and to see philanthropy play an important role in making this clinical trial a reality, he’s an even bigger advocate for encouraging support for our hospital. “All I can say is that the core funding of hospitals doesn’t provide for some of the innovative and cutting-edge things that go on, or maybe some really specialized piece of equipment. And that’s where the community donor can help and contribute to that effort.”

Owen and Judith Snider. Owen was accepted into a made-in-Canada CAR-T therapy clinical trial at The Ottawa Hospital to treat his lymphoma.
Owen and Judith Snider.

For Dr. Kekre, philanthropy provides the spark for clinical trials like this, and can help to keep them moving forward. “Without philanthropy, we wouldn’t have a Biotherapeutics Manufacturing Centre or a Methods Centre at The Ottawa Hospital, and we wouldn’t be able to do innovative clinical trials like this. We need this kind of research to get to a place where all Canadians can benefit from these therapies. Without philanthropy, we would never get there.”

And to Dr. Kekre, her team, and their collective efforts to give more patients hope, Owen has a simple message: “Thank you. The whole program is outstanding.”

About the Canadian-Led Immunotherapies in Cancer (CLIC) research program

The CLIC research program, established in 2016, brings researchers, clinicians and patients from across Canada together to build Canadian expertise and capacity for innovation in the promising field of cellular immunotherapy for cancer, including CAR-T therapy. The first CLIC clinical trial launched in 2019 at The Ottawa Hospital and at BC Cancer, with support from BioCanRx, BC Cancer, The Ottawa Hospital Foundation and the Ontario Institute for Cancer Research. Core facilities and resources supporting CLIC include The Ottawa Hospital’s Biotherapeutics Manufacturing Centre, BC Cancer’s Conconi Family Immunotherapy Lab, the Ottawa Methods Centre and the Blueprint Translational Research Group. CLIC team investigators include Drs. Natasha Kekre, Harold Atkins, John Bell, Kevin Hay, Rob Holt, Brad Nelson, John Webb, Manoj Lalu, Kednapa Thavorn, Dean Fergusson, Justin Presseau and Jen Quizi.

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

Categories: Biotherapeutics, Clinical Trials, Innovation and Technology, Innovation and Technology, World-Leading Research, World-Leading Research, World-Leading Research

A resident of Goose Bay, N.L., most of his life, John Bookalam lives for the outdoors. He loves adventures, including international cycling and skiing in the winter. The retired guidance counsellor cherishes that time even more today, after a harrowing medical diagnosis unexpectedly led him to The Ottawa Hospital for neurosurgery.

It all began in late winter of 2017 when John returned from teaching a ski lesson. He was unloading his gear from his SUV when he hit the back of his head hard on the hatch door. Initially concerned he might have a concussion, John quickly eliminated the possibility thanks to his first-aid training. However, a week later, he followed up with his family doctor and an ultrasound revealed what appeared to be a hematoma, a collection of blood outside a blood vessel, which would normally resolve itself. “But the next week, I had to see my doctor again and the hematoma went from four centimetres on the ultrasound to eight centimetres,” says John.

“I was so nervous. I could hardly think.”

— John Bookalam
John on his last solo cycle in the mountainous north west part of the isle of Majorca before his lifesaving neurosurgery at The Ottawa Hospital.
John on his last solo cycle in the mountainous north west part of the isle of Majorca before his 2017 illness.

The situation turns dire

John’s care team in Goose Bay closely monitored him for many weeks. However, by the end of May, he developed symptoms similar to the flu. “I was burning up. I was on fire and I immediately went to the emergency department of my local hospital. Those symptoms would be a bad omen,” says John.

A CAT scan revealed the hematoma had grown from eight centimetres to 10.6, and the situation was becoming dire. He needed a skilled neurosurgery team to help him — a team that was not available in Newfoundland and Labrador. With roots back in Ontario, he turned to his dear friend, Nadia Marshy, from the Ottawa area for guidance.

Nadia vividly remembers the day she got the call from “Labrador John,” a nickname she gave him through their cycling adventures. She was sitting at her desk when she picked up the phone — John was at his wit’s end. “I knew he’d been hit hard on the head and it had caused a large bump. That was weeks earlier, so I presumed that he was all healed up by now. John proceeded to tell me that not only was the bump much larger, but he was in constant pain,” recalls Nadia.

“She played a vital role in identifying The Ottawa Hospital as an emergency life-line to receive lifesaving surgery.”

— John Bookalam

Calling on our neurosurgery experts for help

Following that call, Nadia was beside herself and she knew her friend was in a medical emergency. “Here I was sitting in my sunny downtown Ottawa office with The Ottawa Hospital and all of its innovation and world-class services next door, and there was my dear friend with this massive, infected lump the size of a grapefruit in desperate need of help and so far away.”

Next, Nadia worked to get John in touch with the neurosurgery department at our hospital — she had witnessed the skill firsthand in 2012 when Dr. John Sinclair performed two lifesaving surgeries on someone close to her. “I gave Labrador John the contact information, and within a few short days, he was on a plane to Ottawa,” explains Nadia.

John, far left, with Nadia, with cycling group. fourth from right
John, far left, and Nadia, fourth from the right.

John credits Nadia for helping save his life. “She played a vital role in identifying The Ottawa Hospital as an emergency life-line to receive lifesaving surgery.”

Once John landed at the Ottawa airport, he went straight to the Civic Campus with all his documents in hand. He met with neurosurgeon Dr. Howard Lesiuk and plastic surgeon Dr. Daniel Peters and handed them his scans to review. They determined the situation was worse than anticipated, and John would need surgery as soon as possible. “I was so nervous. I could hardly think,” recalls John.

A shocking discovery

The surgery would be long and difficult, and it uncovered something far worse than John had ever imagined when he embarked on the trip to Ottawa. Doctors discovered a non-Hodgkin lymphoma tumour on the back right-hand side of his skull and part of his skull was badly infected. While the news was devastating, John recalls the reassuring words that came from Dr. Peters before surgery. “He said I had a strong heart and tremendous lungs, and both would help me during the complicated surgery.”

“We are blessed to have some of the best minds and the most skillful surgeons on the planet right in our backyard. I am convinced what they did for Labrador John is what no one else could have done, and ultimately saved his life.”

— Nadia Marshy

While the news was devastating, Nadia recalls after the surgery, the pain John had experienced for so many weeks was already subsiding. “He received incredible care. The night before his surgery, he was weak, in agony, and couldn’t hold his head up for any length of time because of the pain and the weight of the mass on his head. The next day, he was able to lie on his head and rest in comfort,” says Nadia.



Next, John was transferred to the Cancer Centre at the General Campus for testing to learn more about the tumour. “I underwent a lengthy procedure by an incredible team to diagnose my lymphoma type.”

Primary central nervous system lymphoma

Diagnosed with primary central nervous system lymphoma (PCNSL), John began chemotherapy treatment here in Ottawa before returning home where he would continue his care at the St. John’s Cancer Centre.

Primary central nervous system lymphoma is an uncommon form of non-Hodgkin lymphoma. It starts in the brain or spinal cord, in the membranes that cover and protect the brain and spinal cord, or in the eyes. This type of cancer is more common in older adults with the average age at diagnosis being 65.

Further testing revealed John had diffuse large B-cell lymphoma – BB Expressor — an aggressive type of lymphoma.

However, after months of treatment, good news came on February 26, 2018, when John learned he was cancer free.

“After almost four years, I’m cancer free and I’ve healed after three head surgeries. I’ve resumed my cross-country skiing and marathon road cycling.”

— John Bookalam

Not yet out of the woods

His journey, though, was far from over. John returned to Ottawa for one more surgery for skull base osteomyelitis — an invasive infection. Other treatments back home didn’t prove helpful and, once again, John required specialized care.

A highly skilled team at The Ottawa Hospital came together again to perform another difficult surgery. They would use a procedure called debridement and they would need to produce a new blood supply to the area. Debridement is when the surgeon removes as much of the diseased bone as possible and takes a small part of the surrounding healthy bone to ensure they have removed all infected areas. “They scraped the bone down until there was no sign of the infection and then did skin grafting on the back of my head,” explains John. The second part of the procedure was even more complex and involved taking an artery from his back, transplanting it to his head — creating a vital blood supply from his ears to the back of his skull. “I thank plastic surgeon, Dr. Sarah Shiga for being there in my time of need. If it were not for team Shiga and Lesiuk, I would never have achieved the quality of life I have today.”

“I owe much gratitude to the surgeons and staff at The Ottawa Hospital. Hopefully, my story will inspire others to donate so others can regain a quality of life as I have in abundance today.”

— John Bookalam

As a result of the debridement, he lost a significant amount of bone at the rear of his skull. Today, he must be very careful — he wears a helmet even when he’s driving to protect his brain, but his adventures continue. John’s grateful for each day and each outing he’s able to plan. “After almost four years, I’m cancer free and I’ve healed after three head surgeries. I’ve resumed my cross-country skiing and marathon road cycling.”

Nadia is also grateful for what she witnessed. “We are blessed to have some of the best minds and the most skillful surgeons on the planet right in our backyard. I am convinced what they did for Labrador John is what no one else could have done, and ultimately saved his life.”

Labrador John continues to say thank you

John’s gratitude goes beyond just words. He started by recognizing his care team through our Gratitude Award Program. While it was an important way for him to say thank you, it’s the special note he got in return from Dr. Shiga, who was a part of the second surgery, that made the donation extra special. “She wrote me a beautiful, personal handwritten letter. That’s one of the best letters ever sent to me,” says John.

The 73-year-old didn’t stop there though. He became a member of the hospital’s President’s Council when he committed to support our hospital with a donation of $1,000 a year. “I owe much gratitude to the surgeons and staff at The Ottawa Hospital. Hopefully, my story will inspire others to donate so others can regain a quality of life as I have in abundance today.”

Nadia is just as happy to see her friend back living his active life. “To see Labrador John fully recovered and cycling up challenging hills and covering incredible distances is fantastic. Those surgeons gave him his life back. He never takes a moment for granted,” says Nadia.

And John says he never will. “I will always donate that $1,000 a year to The Ottawa Hospital until I pass from the earth.”

John Bookalam, Summit of San Salvador ,received lifesaving surgery at The Ottawa Hospital after being diagnosed with primary central nervous system lymphoma.
John, Summit at the summit of San Salvador.

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

Categories: Cancer, Cancer, Gratitude Award, Neuro, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care

Admitted to The Ottawa Hospital in 2017, Anita Descheneau had feelings of hopelessness. For years, dating back to her teens, Anita was seeking help. That help included many years searching for assistance with other healthcare providers, for what she describes as mental and emotional distress — yet she felt left without a clear diagnosis or treatment roadmap.

The mother of four recalls dark times that winter. On the outside, things may have appeared fine. She was physically healthy, exercising, and had simplified her life. Yet despite feeling as if she was doing everything right, she was spiraling downward. By February, Anita arrived at our Emergency Department, and on Family Day weekend she was admitted overnight. Then in March, she was admitted to our acute Mental Health Unit, where she received care for several weeks. “I was in a state of suicidality,” recalls Anita.

“When I came to the hospital, I could not explain how I was feeling at all. Now, after four years, I can articulate how I’m feeling after an investment of huge amounts of individual and group therapy.”

– Anita Descheneau

Diagnosed with borderline personality disorder, and then later also with major depressive disorder, Anita started getting answers to the questions she has had for decades about her mental health. She remembers meeting psychiatrist Dr. Daniel Saul and the confidence he instilled in her — hope that she could get better. “Dr. Saul has been extremely supportive and committed to helping me get well again and to stay out of the hospital. He listens very thoughtfully, continues to encourage, validates me, and gently offers insight,” says Anita.

Anita Descheneau
Anita Descheneau

Today, Anita continues to receive care from our mental health team through different outpatient programs. Looking back, she realizes how far she’s come. “When I came to the hospital, I could not explain how I was feeling at all. Now, after four years, I can articulate how I’m feeling after an investment of huge amounts of individual and group therapy. That says something about the time that they have invested into my life, and that’s something that I’m very grateful for.”

“In my experience, the DBT approach is unique in its ability to validate our patients’ experiences and emotional responses, while also helping them to learn new ways to respond to their challenges.”

– Vicki Larsen

The Ottawa Hospital’s Mental Health program provides early diagnosis and treatment of severe mental illness. We currently have 96 beds for those patients and our hospital is often the first place those experiencing a mental health crisis will turn to for acute care. Group therapies like the Working with Emotion group and Dialectical Behaviour Therapy Skills Group (DBT) provided Anita with the tools and skills she needs each day. Run by psychiatrist, Dr. Christine Dickson, and social worker, Vicki Larsen, DBT and related therapies provide psychological tools in a group setting, including mindfulness and Cognitive Behavioural Therapy (CBT) concepts. This helps manage strong emotions, cope with suicidal impulses, navigate times of crisis, handle the complexities of relationships, and manage feelings of emptiness or an unstable sense of self.

“In my experience, the DBT approach is unique in its ability to validate our patients’ experiences and emotional responses, while also helping them to learn new ways to respond to their challenges. These skills allow them to be more grounded, more confident, and more able to work towards the goals that are important to them,” explains Vicki. “I have definitely seen this kind of growth in Anita; it has been a pleasure to work with someone who does her very best to use the skills that she has learned in DBT.”

Anita Descheneau sought assistance at The Ottawa Hospital for her mental health.

“Acknowledging that I know they are truly helping me and how immensely grateful I am, was and is highly important to me.”

– Anita Descheneau

Anita confirms she’s experienced those kinds of results herself. “The DBT groups helped me learn skills and keep using them in the future.” She has learned skills to not only take care of herself, but also to be the mother and wife she wants to be for her four children and husband back home.

Grateful for the exceptional treatment she received, Anita wanted to say thank you to those who played a key role in helping her on her journey. She did so through our Gratitude Award Program — donating in honour of Dr. Saul and Vicki Larsen, who was Anita’s social worker. “Acknowledging that I know they are truly helping me and how immensely grateful I am, was and is highly important to me,” explains Anita.

Anita on vacation with her family
Anita on vacation with her family.

Q: What inspired you to give to The Ottawa Hospital Foundation?

A: The opportunity to recognize that they are truly helping me and how immensely grateful I am for their consistent wisdom, time, and patience is what inspired me to make a donation.

Q: What is the message you’d like to share about the care you received?

A: I am more than grateful for all the time my care team, including Dr. Saul and Vicki, have given me — patiently listening, gently offering words of wisdom, and reminding me to use my skills.

Q: What did it mean to thank members of your healthcare team through the Gratitude Award Program and to support The Ottawa Hospital at the same time?

A: Beyond my gratitude for them and the entire Mental Health Unit, it is my hope and wish that by supporting The Ottawa Hospital, more funding would result in reaching considerably more patients through the unit, to receive the same exceptional care that I have and continue to receive.

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

Categories: Gratitude Award, Mental Health

Originally published: September, 2021

Dr. Kirsty Boyd was six weeks into her medical career when a patient with catastrophic injuries was rushed to The Ottawa Hospital Trauma Centre. Karen Toop had been hit by a snowplow while crossing the street on her way home from work — half her pelvis was missing when she arrived at our hospital. A multi-disciplinary team that included reconstructive plastic surgery, would not only work to save her life and get her back to her family but would also implement a unique idea to drastically improve her quality of life.

From the moment the accident happened, Karen knew her injuries were devastating. She remembers thinking about her five-year-old son at home as she lay helplessly on the road. “I kept thinking ‘I can’t leave him without a mother’.”

Karen lost consciousness briefly and she remembers waking up in the ambulance and speaking to the paramedic. “I asked him to tell my son I love him because I really did think I was going to die. And then he said to me ‘No, no, you tell him’ and I didn’t say anything back.”

“The injury Karen had was the kind of thing we will see once in our career. It’s not a typical day for us to see that kind of an injury.”

— Dr. Kirsty Boyd

Ready for the most challenging cases

It was January 23, 2012, when Karen was rushed into our Trauma Centre. Dr. Boyd will never forget the day. “The injury Karen had was the kind of thing we will see once in our career. It’s not a typical day for us to see that kind of an injury.”

Karen Toop in hospital bed
Karen Toop was treated for severe injuries at The Ottawa Hospital after being hit by a snowplow.

Her injuries were devastating. She lost one leg, her left pelvis, and several internal organs. It took the vascular, general, and trauma surgical teams to stabilize her. Two days later, the 40-year-old would be wheeled back into the operating room (OR) for plastic surgery for the first time. “I was very much a small part of a big team of people looking after Karen. Dr. Murray Allen, my mentor who’s now retired, was an integral part of the case. I was relatively new on staff when she came in and was originally consulted by the other surgical services for assistance with her wound care because she had a fairly large soft tissue deficit following her injury,” explains Dr. Boyd.

This was the beginning of a long road to recovery, including multiple surgeries over the many months. Karen spent two-and-a-half months in the Intensive Care Unit. While she recalls some scary moments, she also remembers the healthcare team surrounding her and helping her — each hour, each day. “They were phenomenal. I had this one nurse, Lynne, who was such a strong advocate for me — always looking out, making sure I was as comfortable as I could be — she really helped me.”

Thinking outside the box

Karen’s most significant reconstruction surgery didn’t happen until October 18, 2012. It took months of planning by the plastic surgery team and required combining existing reconstructive techniques in a novel way to rebuild Karen’s pelvis and restore her independence.

Losing a portion of her pelvis in the accident meant Karen couldn’t sit up. “I wasn’t able to sit up more than 20 degrees from my bed. I had to eat like that, and drink like that and do everything from that position,” remembers Karen.

Dr. Kirsty Boyd
Dr. Kirsty Boyd

“We explored a lot of options; we reached out to colleagues from all across the country. I mean, this was something that I don’t think had ever been done or described before.”

— Dr. Kirsty Boyd

This is when the surgical team started to think outside the box to find a way to give Karen an improved quality of life, and to get her back home to her husband and son. Drs. Allen and Boyd worked closely with Dr. Nancy Dudek from the Rehabilitation Centre, and Dr. Allan Liew from orthopedic surgery, to think of a way to get Karen a new pelvis — what’s called a neo-pelvis.

“Karen lost one leg and part of her pelvis in the accident. The other leg had all kinds of issues including poor blood flow, a loss of sensation, and significant nerve damage to the extent she couldn’t move that leg. While the leg was still attached it wasn’t functional,” explains Dr. Boyd. She adds they spent quite a bit of time in consultation with Karen and her family before the decision was made to amputate.

For Karen, it meant putting her complete trust in her care team. “The lengths they went to save my life were incredible. They asked for input from experts around the world. Everyone came together.”

Karen Toop with her son, following her accident in 2012
Karen Toop with her son, Ryan, following her accident in 2012.

The role of reconstructive surgery in trauma

The surgery was long and complicated — almost 14 hours. ”We rearranged the bone of her right leg to make a pelvis while keeping the bones attached to their soft tissue. I think origami is a very good description; you’re just rearranging things and moving them into locations close to them,” says Dr. Boyd.

“They were so kind, compassionate, and helpful.”

— Karen Toop

It was a unique approach to a complicated case, but Karen’s team saw it as the best chance to help her in the years ahead. “We explored a lot of options; we reached out to colleagues from all across the country. I mean, this was something that I don’t think had ever been done or described before,” explains Dr. Boyd.

The surgical expertise and collaborative effort was transformational for Karen’s future. “After the surgery, I was able to sit up using a chair. I mean that happened slowly. I got the chance to do a lot of physical rehab and I started on the hand bike and doing exercises, weights, and they got me back to the point where I could sit in the chair,” says Karen.

Outstanding compassionate care

Karen Toop and her son Ryan today
Karen Toop and her son Ryan today.

In addition to her physical rehab, Karen won’t soon forget the compassionate care she received throughout her recovery. “They were so kind, compassionate, and helpful. The nurses would write out the plans the doctors were making so I could visualize it better. One of my trauma members, Dr. Jacinthe Lampron, baked me a birthday cake, which she said was made with love, and nurses made cupcakes for my birthday.”

“Thank you to the doctors and nurses at The Ottawa Hospital who saved my mom’s life.”

— Ryan Toop

Strengthening Karen’s mental health and dealing with the trauma of the accident were also integral parts of her journey “They care for your emotional health through the psychologist, the physiotherapist, the physiotherapist assistants, and my personal support workers — they were all fantastic. It was incredible teamwork and just such giving people.”

Going home to her family

After 11 months in the hospital and nine months at the Rehabilitation Centre, where she learned a whole new way of living, Karen moved into a retirement home until her new, accessible home was ready.

“It was really at the beginning that I knew that I was going to put The Ottawa Hospital in my will, because the hospital gave my son his mother, and that was so powerful.”

— Karen Toop

But the most unforgettable part was being reunited with her family. “It was amazing. I can’t describe how happy we all were, to be together again,” she says.

Even more amazing was for her son, Ryan, to have his mom home. Now 14, he’s grateful to have her by his side. “Thank you to the doctors and nurses at The Ottawa Hospital who saved my mom’s life.”

Leaving a gift in her will

The whole experience left Karen enjoying the small things in life, like hugging her family or going to watch Ryan play soccer — things she will never take for granted. It also left her reflecting on those who saved her life and fought so hard to give her a good quality of life. “My accident happened in a flash. You never know when you’ll need the hospital. I went from being able-bodied to losing both my legs, so you know other things happen that maybe aren’t as drastic, but you still need the hospital.”

It’s the specialized team who were ready for Karen when she faced critical injuries, that made her decide to leave a gift in her will to The Ottawa Hospital. “It was really at the beginning that I knew that I was going to put it in my will, because the hospital gave my son his mother, and that was so powerful.”

Karen Toop and her son Ryan.
Karen and Ryan enjoying time together at their home.

She believes she’s truly fortunate to have had access to the care she received. “I got world-class healthcare, with the new technology — for example, a VAC (Vacuum-Assisted Closure) dressing. If I didn’t have that, I don’t think I would have survived because I would have gotten too many infections. There was also the hyperbaric chamber. I went there when my wounds weren’t healing and then my wounds healed.”

Karen is also thankful for the care her husband, Harvey, received at The Ottawa Hospital when he became ill — care she witnessed from the perspective of a family member this time. Sadly, Harvey passed away in November 2017.

And so, by leaving a gift in her will, she’s helping patients who will come through the doors in the future and she encourages others to consider doing the same. “It’s important for people in the community to support the hospital, especially when it comes to developing new technology and the new campus that’s going to be built. That’s an incredible endeavor for the hospital, and they need the support of the people in the community to be able to realize these goals.”

For Karen, she feels it’s the least she can do for the team who allowed her to realize her goal of watching her young son grow into a young man.

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

Categories: Donors, Donors, Gift In Will, Rehab, Trauma

When Wardha discovered she was pregnant, she prepared herself for any challenge that might come with giving birth during the COVID-19 pandemic. But she didn’t expect to have a premature baby, weighing just 610 grams, only 25 weeks into her pregnancy. Following an emergency C-section, this young family was cast into a world of unknowns — filled with daily visits to The Ottawa Hospital’s Neonatal Intensive Care Unit (NICU) during a global pandemic. They never lost hope and placed their trust in our experts to give their daughter the best chance at survival.

A 610-gram baby

Up until the day baby Aya was born, Wardha was having a normal, healthy pregnancy. Just starting to feel her baby move in her belly, she relished every moment. So it came as a complete shock when her water broke early one morning — 15 weeks early. As a healthcare worker herself, Wardha knew this was far too early and their baby was in danger.

Baby Aya in a NICU incubator at The Ottawa Hospital.

Wardha’s husband, Omar, called an ambulance and she was rushed to our hospital where a healthcare team was waiting, ready to care for her.

After an ultrasound and several tests, Aya’s heartrate was dropping — she was in distress. An unborn baby is dependent on a steady stream of blood through the umbilical cold to receive oxygen and other nutrients. If blood flow is reduced, abrupt dips in the infant’s heart rate will occur. Over an extended period, this can become harmful for the baby, particularly for an already vulnerable premature infant such as Aya.

“It felt like we built a bond with Dr. Jankov. That really helped us come out of the dark.”

— Wardha Shabbir

Wardha was rushed into an emergency C-section, both for her safety and that of her baby. “I truly believe the quick action of my healthcare team in deciding I needed an emergency C-section saved my daughter’s life,” said Wardha.

What Wardha didn’t realize at the time was the trust and bond she would develop with Aya’s NICU team as they worked together to care for her.

Caring for a ‘miracle’

Wardha Shabbir feeding Aya.

The first time Wardha and Omar properly saw their daughter was after she was placed in our NICU. In the midst of wires and tubes, Aya, whose name means miracle, looked so small and fragile. “It all seemed to happen so quickly, I think I was still in shock, but it was so great to finally meet her and spend some time together as a family.” said Wardha.

On that first day, Dr. Robert Jankov, Aya’s primary caregiver, paid Wardha and Omar a visit. He took the time to carefully explain every step of Aya’s care, including each test she would undergo, potential complications that could arise throughout her development, and what they planned to do to mitigate the risk of infection. “It felt like we built a bond with Dr. Jankov,” said Wardha. “That really helped us come out of the dark. He took the time to ensure we understood Aya’s care and treatment plan and what would happen during her stay in the NICU. It was really reassuring.”

Seeing their little miracle in the incubator, it was clear they had a long road ahead of them. And tests would soon prove this to be true.

A severe breathing disorder

Aya was born so prematurely that she needed to be hooked up to IV’s and a central line to continue to receive the nutrients she needed to grow. She also required a ventilator to help her breathe. But over time, the oxygen and ventilator that Aya was on to save her life also caused her to have bronchopulmonary dysplasia (BPD), a disorder that causes irritation and inflammation in the lungs, preventing their normal development. It is one of the most common causes of death in premature babies.

Premature babies often need extra oxygen and mechanical intervention to breathe, but this can damage their lungs, causing a chronic lung disease. A stem cell treatment soon to be tested in clinical trials at The Ottawa Hospital may help heal the lungs of premature babies. Read more.

In Canada, 1,000 babies are diagnosed with BPD every year. Many develop other chronic lung diseases, such as asthma, and require prolonged oxygen and ventilation. Currently, there is no treatment for the disease, but one of our experts, Dr. Bernard Thébaud, is leading a Canada-first clinical trial to test the feasibility and safety of umbilical cord stem cell treatment in premature babies with BPD.

Thanks to the care Aya received, she was able to go home without oxygen or therapies for her lungs.

Dr. Bri, The gitte Lemyre
Dr. Brigitte Lemyre

Retinopathy of prematurity

Although Aya’s chances of survival improved by the day, she still had an upward battle with one health concern after another. A diagnosis that worried Wardha and Omar the most was Aya’s retinopathy of prematurity (ROP), a potentially blinding disease that involves the abnormal development of retinal blood vessels in premature infants. ROP occurs when a premature babies’ retinal blood vessels haven’t finished growing. Aya developed concerning ROP and received injections of medicine in her eyes.

“These babies have a lot of resilience.”

— Dr. Brigitte Lemyre

“I remember feeling really overwhelmed and like a failure,” said Wardha. But she felt hopeful Aya was in the care of some of the brightest minds who were determined to go above and beyond to ensure the very best outcome.

Advancing care of premature babies

Due to advances in treatment, we can care for babies who are born as young as 22 weeks. Many grow up to live healthy lives. To better address the needs of micro-preemies, the Extremely Low Gestational Age (ELGA) multidisciplinary working group was created, comprised of physicians, respiratory therapists, nutritionists, pharmacists, and preemie parents, like Wardha. Together, this group developed a care bundle including vital information on how to best treat extremely preterm babies soon after birth and during their critical first week, to ensure their best chance of survival.

“These babies have a lot of resilience,” explained Dr. Brigitte Lemyre, a physician who leads this highly committed working group. “What’s most important is the partnership with the parents and their presence at the baby’s bedside, because this affects their outcome.”

“The journey was really difficult, but we had a support system and people who care about the well-being of our daughter. It made it easier.”

— Wardha Shabbir


As a member of the ELGA working group, Wardha was able to provide insight and perspective as a mother of a premature baby. This helped guide and inform our experts on how to improve treatment and care of our tiniest patients. Wardha was able to feel heard and contribute to her daughter’s care in a meaningful way during their time in our NICU.

Compassionate care angle

Aya remained in our care for four long months. Not only did our healthcare team provide lifesaving and compassionate care to Aya, but they also looked after Wardha and Omar. Due to visitor restrictions set in place as a safety precaution during the COVID-19 pandemic, they took turns visiting Aya and were only able to visit together twice per week. This took an emotional toll on the first-time parents. “The journey was really difficult, but we had a support system and people who care about the well-being of our daughter both at home and at the hospital. That made it easier,” said Wardha.

“When we got home, we had NICU withdrawal because Aya’s caregivers became a part of our family.”

— Wardha Shabbir

Each time they visited Aya, her care team took the time to answer their questions. “No matter how many questions I had or how many times I asked them to show me how to change Aya’s diaper, they always stopped what they were doing and took the time to support me. They are all so busy and yet so patient. I really appreciated that,” said Wardha.

Back home and healthy

Now just seven months old, Aya is home and doing exceptionally well. Although thrilled to finally be discharged after four months in our NICU, leaving our hospital left Wardha and Omar with a feeling they didn’t expect. “When we got home, we had NICU withdrawal because Aya’s caregivers became a part of our family,” said Wardha. Grateful for their holistic care and how they worked together to ensure Aya would not only survive, but thrive, the NICU care team is a part of their daughter’s life story Wardha and Omar won’t soon forget.

Omar and Wardha with Aya.

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

Categories: NICU
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