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.

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.

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.

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.

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

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

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

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

The situation turns dire

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

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

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

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

— John Bookalam

Calling on our neurosurgery experts for help

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

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

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

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

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

A shocking discovery

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

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

— Nadia Marshy

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

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

Primary central nervous system lymphoma

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

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

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

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

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

— John Bookalam

Not yet out of the woods

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

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

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

— John Bookalam

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

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

Labrador John continues to say thank you

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

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

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

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

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

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

Stefanie Scrivens vividly remembers the first time she experienced a mini-seizure, though she didn’t know what it was at the time. She was only 13 years old, but her symptoms continued undiagnosed for nearly a decade, until a CT scan revealed Stefanie had a brain tumour that would become cancerous if untreated. Her best chance of survival was undergoing two 8-hour awake brain surgeries, performed by neurosurgeon Dr. John Sinclair, and a highly skilled team of experts at our hospital.

Frightening symptoms

Stefanie was in elementary school, walking to class, when she noticed a metallic smell and taste in her mouth, followed by blurred vision. These strange symptoms only lasted a few moments, but afterwards she was disoriented, confused, and struck with a severe headache. “I’m just tired,” Stefanie thought, and went on with her day as if nothing happened. But these symptoms continued, up to 20 times a day, for a week straight, every six weeks — a frightening experience for anyone, let alone a teenager.

Stefanie’s parents were concerned and brought her to her family doctor. “I was told they were growing pains. That I was just going through puberty. I thought what I was going through was normal,” said Stefanie. But as her symptoms progressed year after year, she would eventually discover it was anything but normal.

“Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.”

— Stefanie Scrivens

A twist of fate

When Stefanie was 20 years old, new symptoms developed. That’s when she decided to pay a visit to the Emergency Department (ED). She needed to get to the bottom of the symptoms she had experienced for nearly half of her life. This is where she met Dr. Edward Seale, who was one of the attending physicians at the ED.

It was a twist of fate that Stefanie landed in Dr. Seale’s examination room that day. Dr. Seale immediately recognized her symptoms as mini-seizures. “As someone who has epilepsy myself, seizures and the symptoms one may experience while having one, were top of mind for me,” said Dr. Seale. “Although each physician here would have treated her the same way, seizures are a part of my life, so I could relate to what she was going through.”

Stefanie was relieved to finally feel heard. “It felt like for the first time in my life, someone actually understood what I was going through,” said Stefanie. “Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.”

After experiencing ‘mini-seizures’, Stefanie Scrivens visited the Emergency Department at The Ottawa Hospital.

Due to the repetitive nature of her symptoms, Dr. Seale thought she may have epilepsy and ordered her a CT scan to investigate further. But the results from her scan turned out to be far worse than Stefanie could have imagined.

A shocking diagnosis

When Stefanie’s results came in, Dr. Lucian Sitwell, a Neurologist at The Ottawa Hospital broke the news. The cause of her mini-seizures was a grade 2 oligodendroglioma, which is a type of slow-growing brain tumour that becomes cancerous. “Until that moment, the thought had never crossed my mind that it could be a brain tumour,” said Stefanie. As she sat there shocked and scared, she cried. At only 20 years old, this news was devastating.

But a few moments later, she made a crucial decision. Stefanie decided to stay strong, positive, and do whatever it took to fight for her life. “I was of course upset, but I thought to myself ‘I have a choice right now. I can either be angry this is happening to me, or, I can try to make the most of it.’ And I decided, worse comes to worse, if I don’t make it, I don’t want to leave this life with a negative mindset.”

Stefanie Scrivens underwent awake surgery for brain cancer at The Ottawa Hospital.
Stefanie Scrivens underwent awake brain surgery at The Ottawa Hospital.

After absorbing the difficult news of her diagnosis and learning what her treatment options were, Stefanie, armed with her “ready to tackle anything” attitude, decided to move forward with treatment, which would include a complex, 8-hour awake brain surgery.

An innovative treatment plan

Stefanie was referred to Dr. John Sinclair, a world-class Neurosurgeon at The Ottawa Hospital, who would be in charge of her treatment plan and surgery to remove the tumour. Dr. Sinclair has been at the forefront of bringing new and innovative treatment options and technology to The Ottawa Hospital, such as the CyberKnife, Advanced Awake brain tumour surgery, and most recently Fluorescence Guided Surgery. This has brought new hope to patients with unique brain tumours, like Stefanie.

“I felt that I could trust putting my life in his hands.”

— Stefanie Scrivens
Dr. John Sinclair, a neurosurgeon at The Ottawa Hospital.

“Stefanie’s case was rare,” said Dr. Sinclair. “It isn’t very often that you see healthy, young individuals, like Stefanie, with a diagnosis like this.” Fortunately, global advances in cancer research at the time indicated a new treatment plan for tumours such as oligodendroglioma was showing promising results. And Stefanie was a good candidate for this new treatment. “Over a decade ago this wasn’t common practice. We would have monitored the tumour and once it started to change we would recommend surgery then radiation and chemotherapy as a form of treatment,” explained Dr. Sinclair. “Now, we’re seeing a significant increase in life span and survival rates, in cases such as Stefanie’s, when we surgically remove the tumour as soon as it’s detected. No longer are we using radiation and chemotherapy as a primary treatment method for this type of tumour.”

After meeting Dr. Sinclair, Stefanie had full confidence in her healthcare team “Going under the knife is really nerve racking. But not only did I hear how great Dr. Sinclair was as a neurosurgeon, I realized after meeting him how great he is as a person, too,” said Stefanie. “He took the time to get to know me and develop a good relationship with my family and me. I felt that I could trust putting my life in his hands.”

Stefanie was fortunate to benefit from having the tumour surgically removed before it turned malignant. And after a successful complex 8-hour awake brain surgery, she was back home recovering just three days later.

Awake brain surgery and brain mapping

Awake brain surgery, used to treat some brain tumours such as Stefanie’s oligodendroglioma, is a type of procedure performed while a patient is alert and communicating normally while in the operating room. Brain tumours are often dangerously close to regions in the brain that control vision, speech, cognition, personality, and movement. By keeping a patient awake during surgery, they can monitor a patient’s brain activity throughout the procedure to ensure they aren’t negatively impacting these important functions. “Tumours are often woven with functional tissue,” explained Dr. Sinclair. “In the last five years we’ve been able to use more advanced brain mapping techniques so that we can more accurately remove the tumour without hurting the patient.”

Dr. John Sinclair removed Stefanie Scrivens’ brain tumour through a successful awake surgery.

Subcortical mapping is a very new technique used in brain mapping surgery — and our experts are some of the first to use it and are leading the way in training others. As an expert in the field, Dr. Sinclair and his team have offered courses to physicians from across the country so that they too can make use of this revolutionary technique that is changing the lives of patients, just like Stefanie.

Back to the operating room

Within three weeks of her awake brain surgery, Stefanie was back in school. Determined to become a doctor herself one day, she didn’t want to miss a semester of pre-med courses. But after a few months, she felt her symptoms were returning. “I was starting to feel really tired and I was getting seizures again,” said Stefanie. Knowing this could be a part of the healing process, Stefanie wasn’t concerned. But when it was time for her checkup, MRI scans showed scar tissue and the possibility that the tumour had returned.

Stefanie Scrivens inside a professional kitchen
For a year straight following her second awake brain surgery, Stefanie baked a cake every day.

Stefanie would need to undergo a second awake surgery to remove more tissue from her brain. But she wasn’t going to let this get in the way of her dreams. “I thought I would have my surgery, take a bit of time off school and then head right back to my studies,” she said. Dr. Sinclair was able to remove both the scar tissue and some areas concerning for tumour progression. By all accounts, the surgery was considered a success. But while in recovery something significant and unexpected had changed for Stefanie. “I woke up thinking all I wanted to do was bake.”

Becoming a Michelin star pastry chef

Stef Scrivens graduated culinary school after second awake brain surgery.
After her second awake brain surgery, Stefanie Scrivens graduated from
Le Cordon Blue Ottawa Culinary Arts in 2012.

For a year straight following her surgery, Stefanie baked a cake every day. “It was so meditative and healing for me,” Stefanie said. She knew medical school was no longer the right path for her. She had new dreams — to become a professional baker.

In 2012, she graduated from Le Cordon Blue Ottawa Culinary Arts Institute and went on to work for some of the top Michelin star restaurants in the world — a career that has been fulfilling on many levels.

When Stefanie decided to undergo treatment, she didn’t anticipate the experience would change the course of her life so dramatically. She credits The Ottawa Hospital for giving her the chance to chase her dreams and explore whatever the future might hold for her. “Thanks to my incredible healthcare team I’ve lived my life to the fullest and I don’t take any day for granted,” said Stefanie. “I’ve been able to check everything off my bucket list and now I’m writing a new one, with even more dreams to chase.”

Hope for the future

At first glance, you would never know Stefanie went through full-day awake brain surgeries — her blonde, curly hair covering any remaining scars she has accrued. She’s a strong woman who hasn’t let any negative circumstance in life get her down.

“With this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.”

— Dr. John Sinclair
Stefanie Scrivens was treated for a rare brain tumour at The Ottawa Hospital.

The innovative treatment, which removed the tumour before it could become cancerous, meant Stefanie has been able to indefinitely postpone both chemotherapy and radiation. Under the care of our experts, Stefanie is feeling better than ever. Her latest scans show there is no sign of recurrence.

“Stefanie is in unchartered territory,” said Dr. Sinclair. “We can’t say for certain if or when the tumour will come back. But, with this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.”

Because of the excellent care Stefanie has received at our hospital, she has decided to continue to live near Ottawa. “My hope is to continue to be looked after by this group of incredible doctors,” Stefanie said. “I feel so fortunate to be in their care.”

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

The sun has set on THE RIDE, one of Ottawa’s premier cycling events, but that hasn’t stopped Mike Bull, former RIDE captain for Team Enterprise, from participating and giving back as he starts his own virtual ride as a fundraiser for The Ottawa Hospital. Charitable giving, in support of our hospital in particular, is incredibly important to Mike Bull and his family, after his wife, Rie, was rushed to our emergency department after collapsing – the result of a ruptured brain aneurysm.

It is Rie’s journey to recovery and the care that saved her life that inspires Mike to give back each year. “With every year we see that more people are willing to help out, support my ride, and donate. We are fortunate to have such an incredible neuroscience team right here in Ottawa. They saved my wife’s life.”

Subarachnoid Hemorrhage

Late one night in March 2017, Rie collapsed at home after an aneurysm had bled inside of her brain. She was rushed to The Ottawa Hospital where she was diagnosed with a subarachnoid hemorrhage which was exacerbated by a pre-existing condition requiring blood-thinning medication. Unable to speak for the first three weeks and temporarily forgetting her husband’s name and that of her two sons, her family was fearful and unsure whether or not she would recover.

Dr. Sinclair in the neurosurgery operating room
Dr. John Sinclair, Director of Cerebrovascular Surgery.

Rie underwent an 8-hour operation performed by Dr. John Sinclair, Director of Cerebrovascular Surgery. Post-surgery, he comforted Mike and his sons with a bedside manner that was both caring and compassionate. He fielded questions, explained complex medical concepts in simple terms, and reassured them that Rie was in excellent hands as she recovered.

Ready for the most complex cases

Rie’s bleeding disorder and subsequent aneurysm made her case incredibly complex. Three to four percent of the population at large have aneurysms and don’t even know it. A ruptured aneurysm often causes a sudden severe headache, which people often describe as the worst headache of their life. But when an aneurysm like Rie’s ruptures, 50% of patients do not survive the hemorrhage or die shortly after. Of the 50% of patients who survive, half survive with a life-altering impairment.

Despite the complexity of Rie’s case, her care team was ready and equipped with the knowledge and tools they needed to save her life. According to Mike, their prayers have been answered and Rie has made excellent progress.

Rie Bull
Rie Bull at home.

“She spent over a month in the ICU, a month in the Neurological Acute Care Unit, and five weeks in the Acquired Brain Injury Rehabilitation Centre. All staff members took fantastic care of my wife.” – Mike Bull

As part of her recovery, Rie had to learn English all over again, as she had reverted to her first language of Japanese. When Mike and Rie saw Dr. Sinclair in January of 2018, he was very pleased by Rie’s recovery.

Thanks to the support of donors like Mike and Rie, The Ottawa Hospital can conduct groundbreaking research to better understand how the brain functions and to continue to be among the best in Canada, recognized internationally for leading research in Parkinson’s, stroke, neuromuscular disease, and multiple sclerosis.

Grateful for exceptional care

Mike now affectionately calls it “old home week” every time he and Rie visit The Ottawa Hospital for appointments or check-ups. They are constantly running into doctors, nurses, orderlies, and custodians who are genuinely happy to see how far Rie has come and understand that her recovery is remarkable. To Mike and Rie, each one of them has played an important role in Rie’s journey.

Mike Bull with his family in support of The Ottawa Hospital
Mike and Rie Bull with their sons.

Mike is more determined than ever to give back and make a difference. He will continue to get outdoors, hop on his bike, and raise funds and awareness for our hospital. He hopes his virtual ride will serve as a reminder to everyone how important donor support is to help patients receive the care they need. “It’s doing something good for your body, for research, and the community overall. It will always be a way to say, ‘thank you, thank you, thank you’ to the team at The Ottawa Hospital!”

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

Dr. Michael Schlossmacher
Dr. Michael Schlossmacher in his lab at The Ottawa Hospital.

For more than 200 years, no one has been able to solve the Parkinson puzzle. Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s. It affects approximately 100,000 Canadians—8,000 here in Ottawa. The national number is expected to double by 2050. Each day, many of those patients face uncontrolled trembling in their hands and limbs, the inability to speak loudly, loss of sense of smell, and pains from stiffness.

While the exact cause of the disease remains a mystery, dedicated researchers at The Ottawa Hospital are gaining ground—determined to solve the puzzle. Ottawa is a recognized centre for neuroscience research. Dr. Michael Schlossmacher is the director of the Neuroscience program at The Ottawa Hospital and while he admits Parkinson’s is complicated and complex, there is hope.

“I strongly believe we can solve that riddle. We have the expertise to make a major contribution to a cure for this disease.” Dr. Michael Schlossmacher

Predicting the risk of Parkinson’s

For Schlossmacher, a step forward in unravelling the mystery of this disease came when he was struck by the idea of a mathematical equation, which could potentially foreshadow the disease before it develops. “I’m convinced that by entering known risk factors for Parkinson’s into this model, it is indeed possible to predict who will get the disease.”

Risk factors for Parkinson’s disease include:

  • age
  • chronic constipation
  • reduced sense of smell
  • family history
  • chronic inflammation such as hepatitis or types of inflammatory bowel disease,
  • environmental exposures
  • head injuries
  • gender, as Parkinson’s affect more men than women

Dr. Schlossmacher and his team of researchers are currently combing through data to test the accuracy of their theory to predict Parkinson’s.

Meet two of the Parkinson’s powerhouses dedicated to finding a cure

To date, Dr. Schlossmacher and his team have analyzed more than 1,000 people, and the results are promising. “The surprising thing so far is the prediction formula is right in 88 to 91 percent of the cases to tell us who has Parkinson’s and who doesn’t—and this is without even examining the movements of a patient.”

The goal is now to expand to field testing in the next two years. According to Dr. Schlossmacher, should the results show the mathematical equation works, this could allow doctors to identify patients who have high scores. “We could modify some of the risk factors, and potentially delay or avoid developing Parkinson’s altogether.”

Partners Investing in Parkinson’s Research

Team PIPR co-captain Karin Fuller, left, with Elaine Goetz and fellow co-captain, Kristy Shortall-Cain.

Research is costly and community support is vital to help unleash new discoveries. In 2009, a group of investment advisors came together to create Partners Investing in Parkinson’s Research, more commonly known as PIPR. Each year, the group participates in Run for a Reason and raises money as a part of Tamarack Ottawa Race Weekend. In 11 years, the group has raised $1.4 million for The Ottawa Hospital’s researchers and clinicians.

PIPR has not only helped to fund research toward better treatment and hopefully a cure for Parkinson’s, but the group has also brought much-needed attention to the disease. For Dr. Schlossmacher, funding for research from groups like PIPR, means more hope for the future. He is quick to add that PIPR has galvanized the momentum in our community because they see how committed The Ottawa Hospital is to making a difference.

“This investment by PIPR into research at The Ottawa Hospital has been a total game-changer for us. It has allowed us to pursue projects that otherwise would not yet be funded.”

Donor dollars translate into results

Dr. Sachs practicing the use of 3D technology
Dr. Adam Sachs practicing the use of 3D technology for neurosurgery.

PIPR’s support helped bring deep brain stimulation surgery (DBS) to The Ottawa Hospital. For someone like Karin Fuller, co-captain of team PIPR, she knows the positive impact this type of technology can have. “When my dad had that surgery he had to go to Toronto, which meant going back and forth for the appointments. It was a lot for him and for our family. Helping to bring DBS to our community is a tangible example of what we’ve been able to do as a group to support The Ottawa Hospital,” says Karin.

Also developed at The Ottawa Hospital is the world’s first 3D virtual reality system for neurosurgery. It is being used to increase the accuracy of DBS surgery for patients with Parkinson’s. Our neurosurgeons are the first in the world to use this technology in this way and the goal is to improve the outcome for patients.

Promise for the future

It’s also expected that one day 3D technology could be in every department throughout the hospital. The possibilities for this technology are endless and, in the future, it could help countless patients, beyond Parkinson’s disease.

When Dr. Schlossmacher looks at the puzzle of Parkinson’s, which he’s been investigating for 20 years, he sees promise.

“At The Ottawa Hospital, we think outside the box and that’s how we’re able to unravel mysteries through our research. Research which we hope will one day be transformational.”   Dr. Michael Schlossmacher

He also has sheer determination in his eyes. “To the chagrin of my wife, I will not retire until I put a dent into it. The good news is, I may have 20 years left in the tank but, ultimately, I’d like to put myself out of business.”

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

Minimally invasive surgery ‘perfectly’ restores hearing

After a brain tumour began growing in to his ear, Denis Paquette was at risk of losing his hearing in both ears – a circumstance that would strip him of his ability to hear his wife’s voice forever. With traditional brain surgery deemed too risky, Dr. Fahad Alkherayf and Dr. Shaun Kilty were challenged to find a safer solution – removing the tumour through his nose.

A life unlike most

Since birth, Denis Paquette, now 66, has been deaf in one ear. It’s clear he has a deep-rooted understanding of the nuances of having such an impairment. After all, it’s all he’s ever known. Holding the phone to his good ear and turning his head while in conversation to better hear someone are habits he was quick to establish.

But in 2016, these little tricks, which he has cultivated throughout his life, started to fail him. Conversations were getting harder to hear and Denis’ wife, Nicole,

Hospital around the world are looking to The Ottawa Hospital tDr. Fahad AlKherayf and Dr. Shaun Kilty standing in an operating room at The Ottawa Hospital.
Hospitals around the world are looking to The Ottawa Hospital to learn about the type of minimally invasive brain surgery performed by Dr. Fahad Alkherayf (right) and Dr. Shaun Kilty.

noticed that Denis was progressively increasing the volume on the television.

“I was beginning to be frustrated because people were talking to me, but I was just getting parts of the conversation,” said Denis.

Journey to diagnosis

Concerned about his hearing, Denis visited his family doctor. He was sent for various hearing tests, each showing that something was wrong. It was then that Denis was referred to Dr. David Schramm, a hearing specialist at The Ottawa Hospital. Dr. Schramm ordered an MRI that revealed Denis had a rare tumour growing in his skull and in to his inner ear. These weren’t the results Denis and Nicole were expecting.

“I didn’t know what to expect, so it was really shocking news,” said Denis.

Denis needed specialized surgery to remove the tumour and required the expertise of neurosurgeon Dr. Fahad Alkherayf and ear, nose, and throat (ENT) specialist Dr. Shaun Kilty.

Due to the complexity of Denis’ diagnosis, Dr. Alkherayf and his team were challenged to remove the tumour without jeopardizing his hearing completely.

“The tumour was growing in his skull and in to his inner ear, putting pressure on his hearing nerve on the good ear. There was a risk he would lose the rest of his hearing,” said Dr. Alkherayf.

“Despite it being a benign lesion, the impact of it was huge.” – Dr. Fahad Alkherayf

Dr. Alkherayf knew that removing the tumour through Denis’ ear could risk permanently damaging what little hearing he had left. With this in mind, Dr. Alkherayf recommended that Denis undergo the newly-available minimally invasive brain surgery. With this technique, his tumour would be removed through his nostrils instead of through his ear.

The risk was high

Traditionally, brain surgery for a case such as Denis’ would take place through the ear and require a large incision through the skull. But with only one good ear to start with, performing brain surgery in this way could permanently and completely impair his hearing.

Not only could Denis lose his hearing, the traditional method of removing such a tumour has a greater risk of complication, a higher chance of infection, and demands a longer recovery period – up to six months. It would also leave a large scar, beginning in front of his ear and extending all the way up and behind it. The thought of undergoing such a procedure alone was nerve-racking.

A new surgery technique

Over the last several years, Dr. Alkherayf has advanced new techniques for removing various types of brain tumours, known as minimally invasive surgery.

Minimally invasive surgery has transformed the way operations are performed by allowing surgeries to be carried out as keyhole procedures, a surgical procedure that provides access to parts of the body without having to make large incisions. This operation is much safer, with risk of infection and recovery time greatly reduced. In many cases, patients are discharged within just a few days of surgery.

“It’s quicker to recover for patients,” said Dr. Kilty. “Because they don’t have to recover from the extensive dissection that traditional approaches [surgeries] require.”

Performing these types of surgeries requires two physicians – a neurosurgeon to remove the tumour and an ENT to provide access to the tumour through the nose and to control the endoscope. Due to the complex nature of these surgeries, Dr. Alkherayf is among a small group willing to perform them. Many are looking to The Ottawa Hospital to learn about this innovative surgery. “We have become one of the top places in Canada for this technique,” said Dr. Alkherayf.

Denis Paquette sitting outside at a table at The Ottawa Hospital.
Denis Paquette’s hearing was restored after receiving minimally invasive brain surgery at The Ottawa Hospital.

“They did a miracle on me”

On July 20, 2016, Denis underwent a five-hour operation during which Dr. Alkherayf and Dr. Kilty were able to successfully access and remove the tumour through his nose. The insertion of a microscopic tube that would travel from the cavity of where the tumour once was to his sinuses which would prevent future buildup of fluid and prevent the chance of reoccurrence.

When he woke up, Denis was astounded that he could hear his wife’s voice. “I woke up and wow,” said Denis, “I could hear!”

Just two days after his surgery, he was discharged.

“They did a miracle on me. They did something fantastic,” said Denis, whose hearing tests have been perfect ever since.

“They did a miracle on me. They did something fantastic.” – Denis Paquette

Thanks to the care Denis received at The Ottawa Hospital and the benefits of minimally invasive surgery, he can now enjoy watching his television shows and conversing with his wife without issue. He no longer fears a life without sound.

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

After experiencing vision problems, severe headaches, and repeated transient ischemic attacks (TIA’s) –mini-strokes, John Fairchild was diagnosed with a tumour on his pituitary gland. With each TIA being potentially fatal or causing paralysis, and with surgery being high-risk, John began making detailed plans to help his wife carry on without him.

That was until September 2015, when minimally invasive brain surgery at The Ottawa Hospital saved his life.

In 2011, John had been told by a doctor in Edmonton that he had a tumour in his pituitary gland and the operation to remove it was too risky. The doctor advised him to wait several years until the procedure had been improved.

Five years later, John and his wife Suzanne had moved to Ottawa, and he was having regular TIA’s. During these mini strokes, his vision was reduced to seeing through a small hole, and his memory and speech were impaired. The 71-year-old was referred to see Neurosurgeon Dr. Fahad Alkherayf at The Ottawa Hospital. Dr. Alkherayf recommended John undergo the newly available minimally invasive brain surgery. With this technique, his tumour, which was benign, would be removed through his nostrils instead of the traditional more radical and risky surgery, which required opening up his skull.

The benefits of minimally invasive brain surgery

“It is a new field in neurosurgery,” said Dr. Alkherayf, who has advanced minimally invasive brain surgery techniques in recent years. “There are no incisions in the skull, no cut in the skin. Everything is done through the nose.”

This operation is safer with surgery time greatly reduced. It means patients not only spend less time in the operating room, but they go home sooner. They experience less complications and better recovery.

John Fairchild at home following his minimally invasive brain surgery at The Ottawa Hospital.
John Fairchild at home following his surgery

Vision and hope restored

“I believed there was some risk of being blind or dead after the operation, as it was so new,” said John. “I spent two months before the operation, training to carry on being blind. I taught my wife how to use the snow blower and handle the finances.

“When I opened my eyes in the recovery room, I could see a clock on the wall, and I could see the time! I wasn’t blind.”

 — John Fairchild

The Ottawa Hospital is a North American leader in this procedure.

“We have been asked for consultations internationally,” said Dr. Fahad Alkherayf. “It’s a very exciting technique that has definitely improved patient care during these surgeries.”

A bright future

In the year since the operation, John has resumed his active life.

“Thanks to The Ottawa Hospital’s virtuoso surgery team, I am again now in vital good health – curling, skiing, golfing — with excellent vision and no headaches. I am extremely grateful for the extraordinary care I received in the hospital, and wonderful after-care.”

“I am so well now, you’d never know anything was ever wrong with me. I am very proud of the hospital and the medical team. You guys saved my life.”

— John Fairchild

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

It was March 7, 2018. Leata hadn’t seen Joellie in five weeks. She had been at CHEO, in Ottawa, with their 3-year-old daughter who needed dental surgery.

When they got home from the airport, Joellie said he wasn’t feeling well and went to bed. He woke with a fever. Leata called her aunt who wondered if he might be having a stroke.

“I called the nursing station and they said to bring him in. Our truck wasn’t working, so we took the Ski-Doo. He [Joellie] drove it to the nursing station,” said Leata. The nurses could see something was wrong and started calling doctors in Iqaluit who arranged for medevac from their northwest Baffin Island community.

Joellie lost consciousness at the nursing station. He didn’t come to until he arrived at the Qikiqtani General Hospital in Iqaluit where a he had a CT scan. The results were bad news.

7-hour surgery and 52 stitches

The Ottawa Hospital, The Ottawa Hospital Foundation, Joellie Qaunaq
Joellie Qaunaq from Arctic Bay, Nunavut.

“First, the doctor told us that Joellie had a tumour, then they told us he had brain cancer,” said Leata.

She had only been home less than 48 hours when she found herself headed back to Ottawa. The Ottawa Hospital Cancer Centre, through an agreement with the Government of Nunavut, provides cancer services to residents of eastern Nunavut. Usually, only one family member or close friend accompanies a patient. The Qaunaqs knew that cancer treatment could be lengthy—weeks, even months. They prepared to leave family, friends, and their community support network for an undetermined amount of time while Joellie had treatment.

The couple, who’ve been married for 29 years, have four children. So before heading south, Leata arranged for their two youngest (13 and three years) to stay with their oldest son, whose wife was expecting a baby in April. It would be Joellie and Leata’s first grandchild, and they knew they would miss the baby’s birth.

Joellie had a seven-hour surgery to remove his brain tumour. He woke up with the left side of his head shaved and 52 stitches curving up from his ear to his temple.

“That’s not a kind of cancer that we cure”

“Joellie had a tumour called a glioblastoma—it is the most common kind of brain tumour that adults get,” said Dr. Garth Nicholas, Joellie’s medical oncologist. “It’s not a kind of cancer that we cure with our treatment. The goal is to try and keep that cancer from progressing, or worsening, for as long as we can.”

Glioblastoma multiforme is a deadly, extremely aggressive form of cancer that starts in the brain. Its tumour cells reach like tentacles into parts of the brain where neurosurgeons can’t see them and, therefore, can’t remove them.

  • 1,000 Canadians are diagnosed with glioblastoma every year.
  • It affects 2 out of every 100,000 people.

  • Accounts for 12% of all tumours in the head.

  • Affects more men than women.
  • Usually adults between 45 and 75 years of age.

  • Less than 10% survival rate, 5 years post-diagnosis.

  • Tragically Hip lead singer Gord Downie and Ottawa politician Paul Dewar both died from this type of brain cancer.
  • New equipment and techniques could help outcomes.

Overcoming barriers of language and culture

In addition to hearing loss―a result of a life of hunting and being close to the sound of hunting rifles―Joellie spoke Inuktitut and had limited English. Understanding his diagnosis and treatment options was challenging. Fortunately, Leata was fluent in English and could be a strong advocate for his treatment. But this is not the case for many Inuit patients.

“I think challenges and the difficulties―above and beyond his brain tumour―were not related to Joellie’s tumour but to being far from home, and the language barrier,” said Dr. Nicholas.

Realizing these challenges. Dr. Nicholas referred the Qaunaqs to Carolyn Roberts, the First Nations, Inuit, and Métis Nurse Navigator for the hospital’s Indigenous Cancer Program. She helps many Inuit patients understand and navigate the health-care system throughout their cancer treatment.

“Our whole system of ethical practice has autonomy as its foundation stone. People can decide what they want to do and people are meant to be involved in what they want to do with their health. But the combination of language and education and cultural expectation makes it hard for people from the North to be involved,” said Dr. Nicholas. “That’s where the program with Carolyn is useful, because she helps get them around to the idea that this is not being done to you, but with you and for you.”

“When I meet patients, I tell them I’m a different kind of nurse,” said Carolyn. “I’m not here to just answer questions about cancer. I’m here for any question at all―doesn’t have to be about health. That’s the message I give to every patient.”

There are few similarities between Ottawa and the small Arctic communities where many Inuit patients live. Undergoing cancer treatment in a place that is so fundamentally different than their home takes a toll on patients and their mental health.

Connecting with someone’s culture and breaking down barriers with the universal language of compassion and laughter helps patients feel more comfortable and confident about going through their cancer journey.

“What we really worked towards is not to focus too much on the cancer. It brought us together, but that doesn’t define who they are.” –Carolyn Roberts, First Nations, Inuit, and Métis Nurse Navigator.

Dr. Nicholas said he sees the difference Carolyn and the Indigenous Cancer Program make for patients. “I can think of individual patients who would not have been treated and who would’ve just gone home. They were overwhelmed by everything and they would’ve just left but they dealt with Carolyn. They ended up staying and having some treatment, and the treatments were useful,” said Dr. Nicholas. “The program’s got measurable medical outcomes.”

Joellie Qaunaq taught Arctic survival skills to Canadian Armed Forces members in Resolute Bay, Nunavut.

Back home, surrounded by family and friends

The Ottawa Hospital, The Ottawa Hospital Foundation, Joellie Qaunaq
Leata Qaunaq hugs her husband Joellie.

Joellie had his last radiation treatment in Ottawa on May 29, 2018. He was then discharged and eagerly headed home, back to Arctic Bay—to family and friends.

Dr. Nicholas’s follow up with Joellie and his treatment to help keep the cancer at bay continued. Every month, he would have blood work done and the results were faxed to Dr. Nicholas who then called Leata about whether Joellie could go ahead and take the chemotherapy pills he was prescribed to use at home. After Joellie finished the six-month chemo treatment, he had follow up CT scans that Dr. Nicholas received on his computer as if Joellie was a local patient.

Fortunately, Joellie was still relatively well when he went home last May and was able to enjoy time with his new granddaughter and family.

Glioblastoma is one cancer that always returns. And Joellie’s did. After almost a year since his discharge, Joellie’s health deteriorated and sadly, he passed away on May 5, 2019. He was cared for by people who loved him and his family beside him.

Thanks to donations from our generous community, researchers at The Ottawa Hospital have made tremendous breakthroughs in improving cancer treatments. It’s patients like Joellie who inspire our care givers and researchers to strive for a cure.

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

A parent’s worst nightmare

14-year-old Spencer’s eye became reddish and tearing for more than a week; and this strange blockage was protruding from his nose. Despite repeated efforts, it would not come out.

That’s when Spencer’s mom, Ellen, knew he needed help and they would ultimately end up in CHEO’s emergency department. Doctors ordered a CT scan. It was around midnight; Ellen recalls when the results came in.

“A gravely concerned looking doctor asked me, ‘Did you know that Spencer has a tumour in his head?’”

It was not the news any parent wants to hear. 

The growth, which was protruding from Spencer’s nose, was biopsied. While benign, that tumour was resulting in the quick deterioration of Spencer’s health. When Ellen asked to see the CT scan, she recalls searching the picture for a grape or golf ball sized image attached to a nose growth.  

“I didn’t see any and asked where it was.  ‘It’s the grey area’, the doctor said.” 

The grey area was over half of his face. 

“I didn’t even want to think about what his face would end up looking like after all the cutting they’d have to do to remove so much material, but I had to ask.” 

The doctor revealed the tumour was larger than any he had ever worked with. It was for that reason and the fact it was reaching up to the floor of the brain, he told Spencer’s parents they couldn’t perform the surgery. 

This type of tumour would need a specialized team of an ear, nose and throat doctor along with a neurosurgeon working together.  Ellen recalls thinking she would take her son anywhere in the country to get the help he needed.

Specialized care at The Ottawa Hospital

However, the specialized care was nearby at The Ottawa Hospital. A highly skilled team would perform minimally invasive surgery and remove the tumour through Spencer’s nose.

Just over a week later, with his condition worsening, Spencer was to be admitted to The Ottawa Hospital. He had another CT, an MRI, and the specialized team was monitoring his optic nerve behind his bulging eye to ensure it wasn’t being severed by the growing tumour.

Two days later Spencer underwent a 4-hour surgery, which helped stop 80% of the blood flow feeding the tumour. The remaining 20% would maintain blood flow to his brain.

The next day the highly skilled team, which included Drs. Fahad Alkherayf and Shaun Kilty performed an eight-hour surgery. With expert precision, and state-of-the-art technology, they would remove the large tumour from Spencer’s face and base layer of the brain. They also rebuilt that layer to prevent the fluids that protect the brain from leaking out.   

This minimally invasive surgery, removing the tumour and rebuilding the layer, was performed through Spencer’s nose by Dr. Alkherayf who has the greatest number of surgical hours of training for this procedure in Canada. 

A Canadian Medical First

In order to rebuild the brain layer, 3D printing technology also aided doctors during the surgery. Ellen says it’s remarkable. “It’s really pretty cool the advancements which have been made to help patients in our community.”  In 2016, The Ottawa Hospital became the first hospital in Canada to have an integrated medical 3D printer.

Ellen says her initial concerns of recovery completely faded thanks to this minimally invasive technique. “It was incredible. Spencer was home again only three days after surgery!” 

When she thinks back to the fear of the initial diagnosis to where Spencer is today, back at school and active, several thoughts comes to mind. 

“I was immensely grateful to God and The Ottawa Hospital, and I truly feel that we were in the best hands.”

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