Category: Patient Care

Updated: February 2024

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

Published: October 2022

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

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

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

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

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

A most unusual case of colorectal cancer

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

Haydn Bechthold was treated for rectal cancer at The Ottawa Hospital.
Haydn Bechthold was diagnosed with colorectal cancer at age 22.

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

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

– Dr. Joanna Gotfrit

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

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

Navigating through the cancer journey

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

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

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

– Mary Farnand

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

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

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

Photo by Ashley Fraser.

Meet Mary Farnand

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

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

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

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

When should I be tested for colorectal cancer?

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

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

Molecular Oncology Diagnostics Lab plays a key role

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

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

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

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

Photo by Ashley Fraser.

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

– Dr. Rebecca Auer

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

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

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

The hope of immunotherapy

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

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

– Haydn Bechthold

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

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

What is immunotherapy?

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

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

Ready for J-pouch surgery

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

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

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

How J-pouch surgery works

BEFORE SURGERY

  • Colon and rectum present
  • Patient suffering from symptoms

DURING SURGERY

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

SECOND-STAGE SURGERY

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

The role research plays in changing the course of cancer care

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

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

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

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

Setting his sights on the future

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

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

The Ottawa Hospital’s President’s Breakfast was held Tuesday, Sept. 13, 2022, at the Canadian War Museum.

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

Photo by Ashley Fraser.

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

– Haydn Bechthold

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

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

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

Listen Now:

Categories: Clinical Trials, Clinical Trials, Clinical Trials

Published: September 2022

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

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

Geneviève Bétournay, owner of the Art House, was treated for multiple sclerosis at The Ottawa Hospital.
Genevieve Betournay was treated for multiple sclerosis at The Ottawa Hospital.

News of MS diagnosis hits hard

When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.
It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”

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

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

– Geneviève Bétournay

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

Infographic, MS effects on the body
1

Fatigue, cognitive disruption, mood changes

2

Vision issues such as vision loss, blurred vision, and double vision

3

Difficulty with speech and swallowing

4

Incontinence and digestive problems

5

Difficulty with hand-eye coordination and numbness/tingling in hands

6

Sexual dysfunction

7

Loss of power in a limb or numbness

8

Walking difficulties and balance problems

Effects of MS on the body

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

Groundbreaking MS treatment pioneered in Ottawa

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

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

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

Twenty-four years ago, Drs. Mark Freedman and Harold Atkins proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS.

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

MS symptoms were progressing quickly

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

Geneviève received a stem cell transplant at The Ottawa Hospital to treat MS.
Geneviève in 2013, receiving a stem cell transplant to treat multiple sclerosis.

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

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

– Geneviève Bétournay

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

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

Time for the MS stem cell transplant

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

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

See the journey stem cells take during autologous stem cell transplantation.

How did a stem cell transplant halt MS?

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

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

– Geneviève Bétournay

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

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

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

Was it all worth it?

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

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

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

Geneviève showing her ability to jump after receiving a stem cell transplant at The Ottawa Hospital.
Before her stem cell transplant, Geneviève had difficulty walking unassisted.

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

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

Listen Now:

Categories: Neuro, Neuro, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Stem Cell

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

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

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

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

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

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

Red flags raised

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

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

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

– Lukas Marshy

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

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

Transferred to The Ottawa Hospital after brain hemorrhage diagnosis

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

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

What is a brain AVM? 

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

Normal blood vessels

Normal blood vessels.

An abnormal tangle of blood vessels

An abnormal tangle of blood vessels.

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

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

– Lukas Marshy

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

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

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

Facing surgery for a brain hemorrhage

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

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

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

Road to recovery

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

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

– Lukas Marshy

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

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

A whole new perspective on life

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

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

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

– Lukas Marshy

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

Lukas Marshy, shown on his graduation day, was treated for a brain hemorrhage at The Ottawa Hospital.
Lukas on graduation day.
Today, Lukas Marshy is married with two children.

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

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

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

Categories: Strengthening Critical Services

Originally published: September, 2020
Updated: July, 2022

“Leaner and meaner than ever”

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

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

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

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

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

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

What is Guillain Barré Syndrome?

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

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

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

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

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

A more challenging road to recovery

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

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

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

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

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

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

Rehab team ready with state-of-the art technology

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

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

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

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

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

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

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

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

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

Continuing the road to recovery

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

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

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

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

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

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

Giving back as a volunteer

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

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

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

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

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

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

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

Categories: Creating Tomorrow, Rehab, Technology, TOH Family

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

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

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

Unusual symptoms continue to develop

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

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

“He had such rare conditions – one right after the other.”

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

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

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

Pinpointing the cause

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

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

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

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

Most unusual pre-op visit

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

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

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

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

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

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

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

Finding the answers

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

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

— Dr. Neal Rowe

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

Expertise in pheochromocytomas

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

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

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

— Bryde Fresque

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

Moving forward, upwards, and giving back

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

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

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

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

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

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

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

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

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: 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: Creating Tomorrow, Creating Tomorrow, Creating Tomorrow, Creating Tomorrow, Gift In Will

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, Cancer, Clinical Trials, Innovation and Technology, Innovation and Technology, World-Leading Research
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