Shelley with her mother, Marcella.

The mother-daughter bond is special. For some, it’s a connection that can rival any close relationship — an unconditional love. That’s certainly the case for Shelley and her mother, Marcella. That relationship was so special that Shelley decided to leave a gift in her will to The Ottawa Hospital — a gift that will ensure the love she has for her mother will live on through future generations of healthcare.  

Both women have experienced care at our hospital for decades, and this gift seemed like a natural way for Shelley to say thank you and help others in the future. “My mom is my inspiration,” she says. 

When Shelley was young, the family was living in Southern Ontario and she was diagnosed with scoliosis — a sideways curve of the spine that is most often diagnosed in adolescents. “I initially was cared for by SickKids in Toronto. I was involved in an experimental treatment, and over time it didn’t work and the condition progressed,” explains Shelley. 

The family moved to Renfrew and as her condition worsened, Shelley was referred to the Civic Hospital in 1983 she was just 13 years old. 

She needed spinal corrective surgery and a spinal fusion. “wasn’t in pain, but because the spine was curving, it pressed on my lungs so I would lose my breath easily. It also caused a visible deformity in my back that could lead to chronic pain in the future, so I didn’t want to go through that,” explains Shelley. 

Early introduction to healthcare

With her parents by her side, she was introduced to Dr. Gordon Armstrong, a renowned orthopaedic surgeon who was well known for his work and innovations in scoliosis treatment, including for children with scoliosis like Shelley. I remember the surgery so well. He had white, white hair and I remember thinking he was old, but he was probably 50,” she laughs.

“He had such an amazing sense of humour and he put me at ease. I remember how kind and how reassuring he was because it was a risky surgery.”

— Shelley

The details of the hospital stay are still vivid for her, despite the fact it was 40 years ago. “I can see the room I was in, along with the nurses and the orderlies. There was one orderly I had a crush on, and I’d ring the bell sometimes, so he’d come back in,” laughs Shelley. 

Once the surgery was complete, this young teen now had rods in her back along with hardware — and she dubbed herself a bionic woman. The surgical technique was new at the time. It was called the Luque Rod method, where specialized wires attach each vertebra around the rods — an extraordinarily delicate procedure, recalls Shelley. 

The success of this surgery allowed her to grow up and have what she describes as a great life thanks to the care she received.  

In her twenties, she travelled through Europe exploring Britain, Scotland, and Wales. But she never forgot the impact Dr. Armstrong had on her life. “I was doing some research recently and I came upon an article about him. I learned he had been awarded the Order of Canada in 2001. It came full circle for me and the impact he had on orthopaedic surgery in Ottawa and patients with spinal issues, like me.” 

A lifetime of care at The Ottawa Hospital

While she did enjoy travelling, she was always drawn back to Ottawa, where she eventually moved — drawn back home to her family and her mom. “I wanted to go into natural medicine, but I developed chronic fatigue syndrome and fibromyalgia so I couldn’t continue my career,” says Shelley. “I would, however, need the services of The Ottawa Hospital throughout my life, and my mom did too.” 

Shelley was diagnosed with fibromyalgia in 2004, and then in 2009, she was admitted to the Civic Campus with sepsis. “I had the most amazing care. It was a type of situation where I could have passed away, but the staff were angels watching over me.” 

And when it came to people watching over her, of course, Marcella was always there for her daughter — lending support through these difficult times. The two women faced health challenges over the years, in fact, they were both diagnosed with celiac disease. However, it was just another way to bond as they would often seek out new gluten-free recipes to make together — they especially liked finding new desserts.

Then in 2020, the family received devastating news — Marcella had cancer. She was diagnosed with stage 4 neuroendocrine cancer. Then, not long afterward, she learned she had esophageal cancer.

“This was all during the pandemic, but the team was ready, and my mom got the care that she needed. They were always there for her,” says Shelley. 

Marcella’s care included chemotherapy and radiation — she pushed through the treatments, but sadly passed away in February 2022 at the age of 77. “She was my best friend. She fought hard — she lived one year and seven months, which was good considering how advanced the cancer was when it was discovered.” 

Marcella all bundled up for a walk the first winter she was on chemo.

A legacy gift in memory of a devoted mother

Living a modest life, Shelley reached out to our Foundation team to ask how best she could create a legacy. She wanted to do something to recognize her mother’s life, her mother’s interests, as well as their special bond. “We talked all the time; it was probably me talking the most — we shared everything. She was my confidante,” says Shelley with a smile. 

After she lost her mother, Shelley started thinking about her own mortality — which was not something she’d done in her 30s and 40s — and what would happen when she was gone. With her lifelong interest in medicine, and considering the years of care our hospital provided not only her mother but also herself, Shelley decided to leave a gift in her will — a gift to honour her mom.  

“My mom is the reason why I want to give to the hospital, because she was always a passionate advocate for patient care and healthcare, even when she was sick,” she says.

“This gift will honour my mom, her life, and her spirit. I always think about my mom when it comes to this gift.”

— Shelley

The future of medicine also inspired Shelley. She reads the regular updates from the hospital and our Foundation about the future of healthcare, and she wants to be a part of that — supporting the next generation of care.  

“The new hospital campus being built is going to be amazing, beautiful, and state-of-the-art. I have a lot of family that live in the surrounding areas of Ottawa, and they come to the hospital for care — some are three hours away,” explains Shelley. “This hospital is serving so many people in such a wide area. I have cousins and second cousins who are having children now, so it’s like I’m helping my family in the future by leaving this gift.”  

Inspired by plans for the new hospital campus and research

Marcella at the General Campus receiving emergency radiation for a tumor on her cervical spine.

When she thinks of the new campus, it also makes her reflect on her stays at the Civic and how different it will be for patients in the future. “The single rooms and places where family can stay overnight, it’s just incredible. I don’t want to be in the hospital in the future, but if I must be, that sounds like the best care and space.” 

The advances in medicine and research happening in her hometown are not lost on Shelley. As someone who’s always had an interest in this field, she keeps up with the latest developments from our hospital, and the impact of the work never ceases to amaze her.  

“Ottawa is a relatively small metropolitan area, but we’ve got this huge hospital and all these world-renowned surgeons, doctors, and researchers right here. So, for me, I think that’s amazing.”

“The Ottawa Hospital is a teaching and research hospital, and that inspires me to give because of the many innovations — so much is on the cusp of discovery and it’s exciting.”

— Shelley

And by leaving this gift, she’s ready to help be a part of the future of healthcare. A decision that is dedicated to her mother — a woman who left a loving imprint on her that will never fade. “Mighty Mouse was my nickname for her — she was tiny, but she was the strongest person I’ve ever known.” 

A CANCER JOURNEY

Nurse Sabrina Presta’s very different perspective of life as a patient

Published: February 2024

For more than 15 years, Sabrina Presta has been a registered nurse at The Ottawa Hospital. Her home unit is B2, the General Surgery department at the Civic Campus — during the pandemic, B2 became the designated Covid unit for a year. Her team on B2 is close-knit and sticks together not only when it comes to providing compassionate care to patients but also in supporting each other.

In 2020, Sabrina needed that support more than ever. “I was experiencing some mental health challenges, like anxiety. Then, by the end of that year, I was diagnosed with thyroid cancer — that came out of nowhere,” explains Sabrina.

It was the summer of 2020, when Sabrina started getting strep throat regularly — something that she never experienced before. Then she noticed a lump on her neck, and she remembers being afraid of what it might be. She immediately reached out to her doctor.

“The nurse so deeply ingrained in me wanted to read the biopsy report right away. But my intuition guided me wisely, and I decided to wait to meet my doctor face to face.”

— Sabrina Presta

Her doctor ordered an ultrasound, followed by a biopsy. “I had access to MyChart at the time and remember getting a notification that the results were available. The nurse so deeply ingrained in me wanted to read the biopsy report right away. But my intuition guided me wisely, and I decided to wait to meet my doctor face to face. I didn’t want my anxiety to creep up on me and potentially misinterpret the results,” explains Sabrina.

It was December 15, 2020, when she learned the results — the tumours were malignant — it was papillary thyroid cancer. This is the most common type of thyroid cancer and generally impacts people between 30 and 50 years old and appears more often in women. Thankfully, most papillary thyroid cancers respond well to treatment.

“It was during the pandemic, and I was alone when I got the news. I went to my car, and I just started shaking. I was trembling like a leaf. I called a friend, and I was crying on the phone, then I drove home. When I saw my husband, he looked at my eyes and he knew,” says Sabrina.

It was a shock because this active mom of two daughters had no other symptoms, other than the sore throat and lump on her neck. The good news was that it was a non-aggressive, slow-growing form of cancer. It would, however, require a total thyroidectomy — the complete removal of her thyroid gland because there were two cancerous nodules, one in each lobe. 

Her daughters were old enough — nine and seven at the time — that Sabrina and her husband sat them down to break the news. “My eldest daughter was surprised to hear the word cancer because I didn’t seem sick. She was sad at first, then was reassured when she heard us talk about the treatment, including surgery. The hardest part for her was watching her little sister’s reaction. She quickly took on the big sister role and comforted her sister,” explains Sabrina. “Meanwhile, my youngest cried ‘Are we still going to have Christmas?’ Her world was just rattled in that moment when she heard cancer. Her great-grandmother died of cancer, and so she thought cancer meant mommy’s going to die.”

Sabrina is an active mom of two daughters.

She assured her daughters she would be well taken care of, and the surgery would make her better.

In Eastern Ontario, the General Campus of The Ottawa Hospital is home to the region’s Cancer Centre — it is the hub and supports satellite centres from Barry’s Bay to Hawkesbury to Cornwall. The Irving Greenberg Family Cancer Centre, located at the Queensway Carleton Hospital, is also a part of our cancer program. Thanks to state-of-the-art technology and world-leading clinical trials, we can provide a wide-range of care for patients across Eastern Ontario and Nunavut.

As a resident of Limoges, Sabrina was grateful to be able to have her surgery at the Winchester and District Memorial Hospital — a community partner with our hospital — in February 2021. The surgery went well, and the next day, she was sent home to continue her recovery. But days after the surgery, Sabrina developed symptoms that made her nervous, and she went straight to the Emergency Department (ED) at the Civic Campus.

“I was home and had just woken up. I walked to the bathroom and almost fainted — everything went black. I started to have tingling sensations and numbness in my legs, arms, and face,” remembers Sabrina. “After my surgery, I was given discharge instructions from my nurse. Those were two signs to look out for in the post-operative phase, as my body was adjusting to life without a thyroid gland. I woke up my husband, and he drove me to the ED right away.”

“It was an act of kindness that went a long way for me. It taught me that you can really leave a lasting impression on someone’s life experience.”

— Sabrina Presta

Now Sabrina found herself as a patient, in her own hospital, and something “magical” happened. She was waiting to be seen when a respiratory therapist she works with saw her. “He took a few moments out of his busy shift to come over to me. His kindness gave me the opportunity I needed to be comforted and to cry. My tears flowed as I was feeling overwhelmed, tired, and scared of my current reality,” explains Sabrina. “He stayed right there with me. I was very weak, and he helped guide me to the bathroom. Before he left, he gave me tea and crackers. It was an act of kindness that went a long way for me. It taught me that you can really leave a lasting impression on someone’s life experience. He was present. This respiratory therapist gave me that gift.”

As a nurse who diligently practices her profession with compassion, being on the receiving end was eye-opening. “When I was a patient, this word became the hope I needed.”

Sabrina soon received good news — what she was experiencing was normal after her type of surgery, and she was able to go home. Within six weeks, she was back at work with a different outlook as a nurse. She was inspired to create her own wellness initiative for her B2 team called B2 Steps Ahead with Sabrina — a collaboration to help colleagues with their mental health. “I created a special room on our unit, the Rest Room, where colleagues can go and recharge in a quiet space during their shift. It even has twinkling lights to relax.”

A poster for Sabrina’s wellness initiative for her B2 team.

Her experience with cancer has taught her to slow down and take care of herself holistically. When she is not working on the frontlines, you will probably find her outside either running, walking, practicing yoga, or writing. A dear colleague even gave her the nickname, “Mother Nature.” “I just love being outside! The fresh air gives me something ineffable,” smiles Sabrina.

Today, she can look back on her cancer journey with gratitude. “It is a privilege to work as a registered nurse in facility that gives me a sense of fulfilment.”


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

A CANCER JOURNEY

Music leads Caleb Fagen through his journey with Hodgkin’s lymphoma

Published: February 2024

Music is huge a part of Caleb Fagen’s life — you could say he lives and breathes it. When the university student started to feel rundown in the summer of 2021, he thought he had been pushing himself too hard. Soon though, he was diagnosed with Hodgkin’s lymphoma. It was shocking news for this young man and his loved ones. 

“I was completely unprepared when I heard the diagnosis. I was shocked.”

— Caleb Fagen

Earlier that year, Caleb was attending uOttawa for his undergrad in music, he was teaching private music lessons and was a part of the school’s choir — something that brought him great joy.  

“I was very focused on school. It was the hardest year of my undergrad, especially with the pandemic. I practiced three to four hours a day on the piano — I was working hard,” explains Caleb.  

In addition to feeling rundown, he had also become anxious and depressed, and he wasn’t eating well.  

“I was completely unprepared when I heard the diagnosis. I was shocked. I was so focused on school and music that all I wanted to know was how I was going to be able to practice, and how was school going to work?” remembers Caleb. “I didn’t want to lose the momentum that I gained.”

Caleb with his partner Jane. 
Caleb with his partner, Jane, after they both shaved their heads in anticipation of his chemotherapy treatment. 

Shocking diagnosis of Hodgkin’s lymphoma 

Hodgkin’s lymphoma begins in a patient’s lymphatic system — that’s part of the body’s germ-fighting immune system. The white blood cells grow abnormally and can form growths (tumours) throughout the body.  

Once Caleb digested the news, there was acceptance. He credits a great deal of that to his incredible support system, including his parents, his brother, and his partner, Jane.  

“My dad came to all my chemo treatments and took time off work to be there with me, and mom was a huge support. My partner lived with me through a lot of this too, it really helped, and it brought a lot more love to this scary situation.”

The first course of action was chemotherapy, and those treatments went from October to the end of March 2022. Caleb maintained some online courses during this period, and overall, he got through the treatment fairly well. That spring he travelled to Italy, resumed working, and even thought about plans to finish his degree. 

Caleb with his family on vacation in Italy. 

A stem-cell transplant the next level of defence 

By late summer of 2022, just one year after his initial diagnosis, a PET scan showed the disease was refractory. That means while it appeared Caleb initially responded to treatment, the cancer had returned.  

The next step was a stem-cell transplant — a process that began in September. “It was quite an ordeal. I went through a few rounds of chemo, and then the stem cell collection. That was followed by the harsh conditioning chemo treatment to wipe my system clean. I felt like a walking zombie. I was very feeble,” explains Caleb. 

Caleb playing the accordion at his home. 

“The team was really good. There was a time when I had to be an inpatient and I was treated well. They told me it would be difficult post-transplant, but it would get better.” 

— Caleb Fagen

It was Halloween when he received his stem-cell transplant. He credits his care team at The Ottawa Hospital for helping him through a very difficult period. “The team was really good. There was a time when I had to be an inpatient and I was treated well. They told me it would be difficult post-transplant, but it would get better.” 

Caleb describes the following month as the worst of his life. “There were times in November when I lost my sense of taste. My tongue felt like it was a rock, it felt stiff and hard, and my appetite wasn’t good. That was just one example,” remembers Caleb. “It was a traumatizing time. I had a psychologist and support to help me work through things and to focus on breathing and to stay calm.”

Cancer and the mental health journey 

The Cancer Centre’s psycho-social oncology program was established to provide patients like Caleb the support needed to help cope with the many challenges associated with cancer and its treatment.  

One person who was an integral part of helping Caleb during this challenging time was social worker Izabela Uscinowicz Valdivia. “Isabela was terrific. I was with her since before my transplant. She was there during the really bad times. We developed a great relationship,” says Caleb. 

He also credits his hematologists Dr. Manika Gupta, who started this journey with him, and Dr. David Macdonald, who currently cares for him.   

Gradually, things started to improve for Caleb, but he admits it was a slow process. By December, he was regaining strength both mentally and physically, and he sat down to play again. “That was a great moment when I was able to start playing the piano. I missed it.” 

Looking to the future  

Because of the high risk of relapse, Caleb started a new chemo treatment in December, which occurred every three weeks and only ended on October 27, 2023. It was then that Caleb was able to ring the bell at the Cancer Centre to mark the end of his treatment.  

Today, he’s back at school in-person part-time, with two more courses left to get his degree. He’s also writing music for himself and teaching again.  

“Physically I feel a lot better. I want to start exercising more to build up my strength, but I’m in a better place. I’m still dealing with mental health issues. I have a counsellor, but I have fewer things to say, so that’s good,” Caleb says with a smile. 

Now 23, Caleb’s recent scan showed he’s in remission, however, he continues to be monitored closely with an ultrasound and then another PET scan coming in the next six months. In the meantime, he’s making plans. He hopes to travel to Portugal in 2024, and long term, he wants to continue sharing his love of music with others by opening his own music school — a dream he hopes to see become a reality one day.


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

A CANCER JOURNEY

Diagnosis of Hodgkin’s lymphoma stops Heba Haidar in her tracks 

Published: February 2024

At age 33, and with three children under the age of five, Heba Haidar was making big plans in the spring of 2022. She and her husband were planning an eight-week trip back to Lebanon to see their family — it would be the first visit since before the pandemic. Two of her three children would meet their grandparents for the first time. But everything came to a grinding halt when Heba learned she had Hodgkin’s lymphoma.  

The first red flag came when Heba noticed random swelling in her neck. Her doctor ordered an ultrasound, and the results were inconclusive. The swelling went away on its own. “My doctor suggested I see an ear, nose, and throat (ENT) specialist at The Ottawa Hospital,” explains Heba. “Not long after I got that referral, I noticed a lump in my neck below my collarbone, but I had no other symptoms.” 

Five days before the family’s long-awaited trip, Heba met with the ENT specialist who ordered a biopsy. The results would be available in five to seven days — by that time, Heba and her family would be in Lebanon.  

“I left it to fate. I decided we’d still go on the trip, but the day before we were supposed to leave, I got the call,” remembers Heba. “My ENT doctor gave me the news over the phone knowing I was leaving. The results showed a malignancy, but not enough to give me a diagnosis.”  

Diagnosis of Hodgkin’s lymphoma flips world upside down 

Suddenly, Heba’s life was flipped upside down. “There was panic. I was in complete shock.”

“There’s no road map to navigate this news. The first thing we did was unpack for our trip.”

— Heba Haidar

Then, with the trip cancelled, Heba was thrust into a series of appointments, including tests and scans to pinpoint the diagnosis. At the time, she was on maternity leave as manager of a medical clinic — she was nursing her nine-month-old and caring for her other two children who were four and five years old. They all relied on her 24/7. 

Just two weeks after she was supposed to leave on her trip, Heba was diagnosed with Hodgkin’s lymphoma and referred to the hematology team at The Ottawa Hospital where next steps were discussed and the roadmap for treatment put in place.  

Heba during her treatment at The Ottawa Hospital. 

“That period from diagnosis to treatment plan is probably the worst period a patient can go through because everything is unknown, and your mind goes wild — wondering what’s going to happen,” says Heba. 

Both Hodgkin’s lymphoma and non-Hodgkin’s lymphoma form in the white blood cells. Those cells are called lymphocytes, and they are an important part of the body’s germ-fighting immune system. The difference between the two can only be seen under a microscope and depends on whether a particular type of cell called Reed-Sternberg is detected. If it is, then the lymphoma is classified as Hodgkin’s. If it’s not, then it’s diagnosed non-Hodgkin’s lymphoma. Hodgkin’s lymphoma is generally diagnosed at an earlier stage.  

Six months of chemotherapy with three young children at home 

Since Heba’s cancer was stage 2, her hematologist, Dr. Melissa Toupin, started her on four to six months of chemotherapy starting in mid-June. A scan in early August 2022 showed she was in remission. However, Dr. Toupin recommended she continue with a full six months of chemo to give her the best possible chance to avoid a recurrence. 

Heba described every round of chemo as a challenge. “Something that was just foreign to me two months ago was now a regular part of my life. It took me some time to come to terms with the extension of treatment, but knowing my scans were clear, it helped.” 

She also turned to our psycho-social oncology program for support. She did several sessions to help with the mental side of the cancer treatment. Over the next few months, she stayed active by walking, weightlifting at home, and of course, being a mom didn’t stop. 

Then on November 16, 2022, Heba rang the bell, signifying her final treatment. She described the moment as surreal and amazing. “It was kind of like a double-edged sword. There was relief, but then there was the whole realization of what I just went through,” remembers Heba. “I was in survival mode and then just like that, treatment was done. There was also that safety net when I was going to the hospital regularly. Now the safety net was removed. I worried about recurrence and what would happen to me.” 

Desire to give back and support groundbreaking research 

During her treatment, Heba was reflecting on the hospital’s care team that surrounded her, and she wanted to give back. She started a fundraiser with a goal of $10,000 to support cancer research at The Ottawa Hospital. “I wanted to raise awareness for the work The Ottawa Hospital is doing.”

“We have groundbreaking research right here in Canada, right here in Ottawa, and I wanted people to know about that.”

— Heba Haidar

Today, Heba is doing well and in a good place. That special trip back home finally happened in May 2023. In the midst of her treatment, it was hard to imagine the trip, but she remembers what a nurse said one day. “She said by next year, it will all feel like a bad dream.” 

It also gave her a whole new perspective on life and the hospital. “At 33, I didn’t think about The Ottawa Hospital other than giving birth to my son. Even with my background in healthcare, my thoughts of the hospital were about having babies – happy thoughts. But now I think of the team and the compassionate people. They saved my life. They save lives and prolong lives.”  

Heba preparing a lemon poppyseed loaf in her kitchen. 

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

Published: January 2024

When Sean Heron attended Nipissing University in North Bay, he was in his element. This avid hiker enjoyed the area’s countless hiking trails and being outdoors. However, he also started to notice a shift in his mental health. That shift would eventually bring him back home to Ottawa and lead him to The Ottawa Hospital’s mental health team and a diagnosis of schizophrenia. 

It was during Sean’s first year in North Bay that he started to have mental health challenges, including intrusive thoughts, diet and sleep disruptions, and waning trust in others. He realized something was wrong and took the initiative to get checked at a local hospital, where he was diagnosed with borderline personality disorder and PTSD. But Sean wasn’t convinced by this assessment. “I did my research, and I realized that what I had was nothing close to what those conditions were described as. But I kind of left it at that and just continued with my life,” explains Sean. 

When things didn’t improve, he left school and North Bay and returned home to his parents’ house. He got a job in the grocery industry, but in 2021, he started to hear voices at home and at work. “One day when I was at work, I asked a colleague if they heard the same thing, because I couldn’t believe that I was hearing these things,” says Sean. “It was kind of concerning.” 

Sean’s parents were more than a little concerned. “I could always see it in their faces that they were so worried — it was hard on my parents,” remembers Sean. “There were times where I lashed out. I started yelling at them because in my head, I had this delusion that they were part of this — part of the reason why I was feeling this way. I never talked to them like that before, so it was out of character for sure.” 

Sean described the voices as high pitched. “It didn’t sound like human voices. It was like a dog whistle sort of thing. I would hear full sentences.” 

Sean (left) with his family at Nipissing University.

Discovering the hospital’s On Track: First Episode Psychosis Program

Concern over what was happening eventually brought him to The Ottawa Hospital’s Emergency Department at the Civic Campus. Our mental health program provides early diagnosis and treatment of severe mental illness. With two psychiatric emergency services and 96 acute inpatient beds, our hospital is the largest provider in the region for acute mental health care and often the first place those experiencing a mental health crisis in our city will turn to for help. When Sean arrived, he was introduced to On Track: The Champlain First Episode Psychosis Program.

"Something important to recognize about schizophrenia is one of the first things that happens is people lose the ability to recognize there is something going wrong."

— Dr. Sarah Brandigampola

Read our Q&A with Dr. Brandigampola

Dr. Sarah Brandigampola, a psychiatrist at The Ottawa Hospital, recalls when she first met Sean. “He was very ill. He was lucky to have parents who knew something was going on and were trying to get him some kind of help — there were safety concerns — but up to that point he was told he wasn’t right for certain clinics,” explains Dr. Brandigampola. “So, by the time we met, Sean had been sick for at least a year, if not longer.”

It was February 2022 when Sean was diagnosed with schizophrenia — he had what’s described as auditory hallucinations, according to Dr. Brandigampola. “The experience of hearing people speak to you, even when you’re alone — it’s very distressing. Something important to recognize about schizophrenia is one of the first things that happens is people lose the ability to recognize there is something going wrong.”

This is known as a neurological phenomenon called anosognosia. “When people have anosognosia, it doesn’t matter how much you tell them the voices aren’t real or you’re not being followed, they can’t comprehend that,” explains Dr. Brandigampola.

It turns out, Sean’s early symptoms began when he was in North Bay. His first symptoms were very similar to depression, he couldn’t focus and started losing motivation to go to school and going out with friends. Dr. Brandigampola says this is very typical for the early stages of schizophrenia — people start to isolate themselves and lose interest in things. That can go on for months or years before the voices or delusions begin. It’s at that point, many people turn to drugs or alcohol to help alleviate that pain. That’s exactly what happened in Sean’s case.

Almost a sense of relief with diagnosis of schizophrenia

The diagnosis brought almost a sense of relief to Sean. “It was like this validation — that you’re not alone. It is a known condition and there was help available, so really, it was a relief.” 

"It was like this validation — that you're not alone. It is a known condition and there was help available, so really, it was a relief.”

— Sean Heron

Now that Sean was enrolled in the On Track program, he had a full team of professionals ready to help him. As Dr. Brandigampola explains, it’s a recovery focused program. Remission is a step in the process to eliminate the symptoms, but recovery is the goal — to get the patient’s life back on track in terms of school, work, relationships, and hobbies. “We want them living a life that has meaning to them and where they’re pursuing their goals.”

The first step in the treatment is a medication to help quiet the voices. This can take some time to achieve, but Sean responded well. Things significantly improved when he went from oral medication to a monthly injection — it’s long-acting and patients don’t run the risk of forgetting to take a pill daily.

Sean and his dog.

Once he began medication, the next step was to work on the basic structure of his day, because Sean had been spending all of his time alone. That’s where his recreational therapist came into the picture. Patients like Sean are introduced to a variety of interest groups to help them reintegrate into social settings. There are groups for walking, sports, education, and a general recreation group. “Sean was interested in those groups, and that was a way for us to get him out of the house,” according to Dr. Brandigampola.

Full team assembled to assist

Another member of Sean’s team included a neuropsychologist, who did cognitive assessments. This helped prepare Sean for a goal that was very important to him — returning to school.

Incredibly, in September 2022 — only seven months after his diagnosis — Sean enrolled as a part-time student at Carleton University majoring in psychology. “Given just how sick he had been and how he had been isolated for a long time, the groups helped get Sean active again and helped motivate him to ask himself, ‘What else do I want?’” explains Dr. Brandigampola.

Occupational therapists also helped set Sean up for success. “Melissa was my occupational therapist and she helped me get to where I needed to be to start school. She helped me set up appointments with academic advisors to see what kind of credits I needed to continue with. She even helped me pick my courses,” says Sean.

Maeve Blake is a social worker at The Ottawa Hospital.

The team is also made up of 10 primary clinicians — five registered nurses and five social workers. Maeve Blake, a social worker, was one of Sean’s clinicians in his first 18 months of the program. Her role was to oversee, counsel, and support patients like Sean throughout the program. “The primary clinician works closely with the patient and their family if they’re open to that. We can provide psychoeducation about schizophrenia, what recovery can look like, how clients can promote their own recovery, and what helps in terms of lifestyle changes, social supports, substance use — all those kinds of things,” explains Maeve.

How to set patients up for success?

Small goals are set for the patient to help put them on a path for success. “A big piece of the work that I did with Sean early on was behavourial activation. We worked on activity schedules and addressed how his substance use at the time was getting in the way of his recovery and his goals,” explains Maeve.

“Sean wanted to go back to school and finish his degree, so that’s what we worked on. At On Track, we focus on what’s important to the client,” says Maeve. “It’s not about us imposing goals on them but about getting to know them as individuals — help me understand your life and what’s important to you.”

There are common themes within patients, but it’s very much a uniquely tailored approach based on each patient’s needs, according to Maeve.

Sean with his family.

The first year of the program focuses on getting people well and stable, while the second year is about setting goals and helping the patient work towards them. Then by the third and final year, the care team can start to take a step back with a goal of transitioning the patient back to their family doctor.

This specialized program has worked incredibly well for Sean, who is currently in his second year of the program. Maeve says he’s always been internally driven to get better, and she admits that’s not always the case with some patients. “What was lovely to see as Sean’s symptoms became better controlled was how warm and genuine he is. Watching his true personality re-emerge was wonderful and uplifting.”

"This is a young man who got his life back. It’s a family that got their son back. It shows that these types of interventions work.”

— Maeve Blake
When it comes to seeing patients improve, Maeve is quick to point to the scope of the program, and she gives full credit to the patient’s commitment. “The wrap around supports that we offer in addition to psychiatry care are phenomenal. I can’t think of any other program that gives this comprehensive and holistic approach. This is a young man who got his life back. It’s a family that got their son back. It shows that these types of interventions work.”

“I don't know where I would be without this program.”

Today, Sean is 25 and continuing his studies part-time. He still loves playing video games and in the warmer months, you’ll find him biking and hiking — he loves the outdoors. He also continues with the On Track program — a program he’s truly grateful for. “It’s like a gift really. I don’t know where I would be without this program.”

"This is world-class care, and this is what I would want for everybody — certainly my loved ones.”

— Dr. Sarah Brandigampola

Dr. Brandigampola is quick to point out that the program does take self-referrals, so if people have concerns about themselves or someone they care about, they can always call the On Track program and arrange a consult.

For Sean, treatment will be lifelong, but as he gets older, Dr. Brandigampola is hopeful new research advancements — including advancements made at The Ottawa Hospital — will provide patients like him more options.

But for now, this program is an important steppingstone. “This is a critical program for patients with schizophrenia. This is world-class care, and this is what I would want for everybody — certainly my loved ones.”

If someone needs help:

Anyone can self-refer to www.accessmha.ca. This is a centralized place to get access to any mental health care (substance use, anxiety, depression, etc.) in Ottawa. The Crisis Line number is: 1-866-996-0991

Published: December 2023

The way Katie Skidmore sees it, she was living a normal life for a 36-year-old. She had a full-time job in Information Management/Information Technology, and for four years, she worked for a mining company in Vancouver before moving back home to Ottawa last year to work from home. In April 2023, Katie ran a half-marathon, then only a couple of weeks later was diagnosed with a rare autoimmune disease. The diagnosis would change the course of her life and push her to advocate for advancements in kidney research. 

Shortly after her race, while in Calgary on a work trip, Katie started feeling a bit off. “I was feverish and feeling rundown. It was a crazy busy time at work and so that’s what I attributed it to, but then I noticed my urine looked pink,” she recalls. “I didn’t think it was a urinary tract infection (UTI) and my friend suggested I might have a kidney infection.”  

She went to a Calgary hospital where some initial tests were done, and they suspected a UTI and prescribed Katie some antibiotics. If symptoms changed, she was to consult her doctor when she returned home. “By the time I got back to my hotel room, I felt even worse and so I booked an earlier flight to Ottawa. Once I was home, I had kidney pain and my urine changed to dark red, so when I landed, I went straight to the hospital. 

Katie Skidmore

Tests revealed a slight decrease in kidney function, so she was monitored overnight. In the morning, her stats improved, and she went home with medication. But when she woke up from a nap, her symptoms had progressed. “I got up to go to the washroom and I couldn’t walk. I also started vomiting. 

Katie in Calgary (late April 2023) at the acute care clinic before coming home to learn she was critically ill.

Alarm bells would soon sound

The next day Katie made another trip to her local hospital. Doctors advised her to continue her antibiotics. Five days later she returned to the hospital because she had stopped urinating altogether. At this point, she wasn’t alarmed — she believed she was healthy and there would be a solution soon. 

But alarm bells would soon ring. Her creatinine levels — which monitor kidney function — had gone from 125 to 1,750 in the span of one week. “I didn’t know what that meant, but I thought, ‘This can’t be good.’ The next thing I knew, I had a catheter inserted and then I was put in an ambulance to be transported to the General Campus of The Ottawa Hospital,” says Katie.  

What she didn’t know at the time — but her healthcare team suspected — was that her kidneys were failing because of an autoimmune disease.  

“It was a Saturday night. I had many injections, there was a line put in my chest, and they did a biopsy of my kidneys,” remembers Katie. “I wouldn’t be able to start dialysis until Monday, but I was like ‘Rock on – get me better and out of here. I have a trip to France planned that I’ve got to get to.’ I was clueless of the severity of what I faced.” 

Faced with a rare autoimmune disease

Within a couple of days, Katie was diagnosed with anti-glomerular basement membrane (antiGBM) disease. She had never heard of it and admits she had a very delayed reaction to the news and what it meant for her future.  

“It hit especially hard when I realized my kidney function likely wouldn’t come back. It was horrific news to try and digest. My life is changed forever. I see it as the girl who flew to Calgary and never came back.”

– Katie Skidmore

What is anti-GBM disease?

Anti-glomerular basement membrane (anti-GBM) disease is an extremely rare autoimmune disorder in which antibodies from the immune system attack and destroy healthy lung and/or kidney tissue.

Previously called Goodpasture disease, anti-GBM disease occurs in fewer than one in a million people. The exact cause of anti-GBM disease is unknown, but it can be triggered by viral respiratory infections or exposure to chemicals, such as through breathing in hydrocarbon solvents or smoking cigarettes.

Symptoms usually, but don’t always, develop quickly. Treatment involves stopping the production of antibodies, removing the antibodies from the blood, and reducing inflammation. The fast development of the disease means it can cause severe kidney damage before it’s diagnosed. In these cases, dialysis is often required.

The following months were beyond difficult for Katie. Mentally and physically, she felt like a completely different person. “I didn’t recognize the person I saw in the mirror.”

According to Katie, doctors call anti-GBM the worst of the worst for kidney disease. “It comes in out of nowhere and it kills your kidneys in days or weeks,” she explains. “It will leave your body in a few weeks or up to two years and never come back but does its damage. It leaves when there’s nothing else to kill.”

Katie’s been told the disease will likely be gone from her body in six to 12 months — it’s trending down but still active now.

After a week in the hospital, Katie went home with her parents and started to put the pieces together about what her new life would look like — dialysis three days a week and no cure for the kidney disease. That’s what led her to want to create more awareness for this illness and kidney research.

“I depend on medical intervention to stay alive, so I need to get the word out that kidney disease is prevalent,” says Katie. “Once you’re on dialysis, it’s for life. I want the world to know, I’m never cured. I’m not in remission. I’m a kidney disease patient for life.”

What kind of kidney research is happening at The Ottawa Hospital?

It’s for that reason, Katie hopes to see research advancements in kidney disease. While there is no cure, there is significant research happening at our hospital to better understand it and hopefully find a cure.

Dr. Manish Sood is a senior scientist, nephrologist, and former Jindal Research Chair for Prevention of Kidney Disease at The Ottawa Hospital. He recently published a study of more than eight million adults in Ontario that suggested even a modest loss of kidney function is associated with increased health risks. This could result in better ways to prevent chronic kidney disease and related conditions, especially for younger adults. 

“The dogma is that healthy, young adults don’t need to worry about kidney function unless it drops to around 50% of the normal level,” explains Dr. Sood. “But our research suggests that even a more modest 20-30% drop may have consequences, and we may want to have earlier conversations about prevention and monitoring.”

When it comes to prevention, researchers are attempting to engage the community. Dr. Sood and his colleagues have developed an online calculator that can estimate a person’s risk of developing chronic kidney disease. Early-stage chronic kidney disease has no symptoms, and its onset can often be reduced with lifestyle modifications such as diet, exercise, and quitting smoking. This calculator may improve awareness and help people reduce their risk.

“Our goal is to improve awareness of chronic kidney disease and to empower and personalize care for patients. Our calculator is a simple tool that can be completed by anyone without prior medical knowledge or blood work.”

–Dr. Manish Sood

Care for dialysis patients across eastern Ontario and beyond

Katie began her in-centre hemodialysis treatments at the General Campus and then in June, moved over to the Riverside Campus. She quickly learned what a drastic change this was going to be for someone who was always on the move — now she would be a frequent flier at the hospital. 

The nephrology program at our hospital provides care to residents of Ottawa and most of eastern Ontario who suffer from kidney disease. It also serves as a referral centre for the Renfrew and Sudbury area. The Ottawa Hospital’s nephrology program is one of the largest in Canada and offers a broad range of services to those affected by this illness. 

Katie Skidmore with her home hemodialysis equipment.

With the expertise of her care team, Katie felt she was in good hands. “There are really supportive people at dialysis — the care team is amazing.” But she admits, as a young patient, she didn’t see many people her age. “For example, I sat next to a 75-year-old gentleman who was great, but he said ‘I’ve lived my life. I can accept this, but I wouldn’t if I were you.’” 

It’s conversations like that one, the support of the dialysis team, and Katie’s desire to be more independent, that led her to explore home hemodialysis. She started with a chest catheter implanted to start, and then training began. Her weeks were busy in preparation. “It’s 12 hours of therapy and then 12 to 13 hours of training for home hemodialysis — that started in mid-September. You learn everything from how to set up your machine, connect yourself, troubleshoot if there are issues, do your blood work, change your dressing, and disconnect,” explains Katie. 

It takes a lot for a patient to prepare for, but the hospital provides all the support required so that patients can live more independently, which is exactly what Katie has hoped for. 

“I feel mentally prepared for it now. I feel physically capable. My blood pressure is under control. I can look at the line in my chest without crying.”

– Katie Skidmore

With everything set up in her home, Katie completed her first home hemodialysis in mid-October. She continues to be cared for by Dr. Deborah Zimmerman and Dr. David Massicotte-Azarniouch — one focused on her kidneys and the other focused on the antiGBM 

Katie baking at home

Awaiting a kidney transplant

It’s expected she will be ready for a kidney transplant this summer she just needs a kidney first. Katie is on a kidney transplant list, and she has people stepping forward to see if they could be a living donor 

As she adjusts to her new life, she is determined to plan for her future. “I have more life to live. I want to travel more, especially internationally. I’ve investigated Dialysis at Sea — cruise ships that offer nephrology care. I want to live my life as much as I can.” 

But Katie is also here to remind people that she is still not better — her life is completely different today compared to six months ago.  

“When people saw me acutely sick, and they see me now going to the gym and travelling across the country, they say it’s so amazing to see you healthy. But I’m not healthy. I’m on dialysis three days a week,” she says.

"I want to project that I’m healthy, I don’t want anyone to forget that I’m part human, part machine. For 15 hours a week I require a machine to keep me alive.”

– Katie Skidmore

And so, she moves forward, as an advocate for kidney disease and a desire to push the boundaries of kidney research for her and others like her.

Published: November 2023

Tanya Di Raddo was 15 years old when she started having severe headaches — she was diagnosed with migraines. As time progressed, the headaches continued. Decades later, she turned to The Ottawa Hospital and was diagnosed with not one, but two illnesses — a brain tumour and multiple sclerosis (MS). 

By her late 20s and early 30s Tanya was married and had two children, and the headaches remained a constant part of her life. As her kids grew, she faced a difficult time when her son began suffering from mental health challenges. He was later diagnosed with first-episode psychosis, so she pushed her health issues to the side and persevered.  

As time progressed, the headaches worsened — there were times when Tanya couldn’t lift her head off the pillow because the pain was so debilitating. It was still considered a migraine, but she also started to notice something wrong with her right hand. “I don’t know if I’d describe it as tremors, but my right hand would form a claw,” remembers Tanya.  

Shocking discovery of a brain tumour plus an MS diagnosis

By the spring of 2021, Tanya started to experience pain in her left eye — soon her vision deteriorated significantly. You know when you see dark clouds in the sky? It was like that in front of my eye. I could kind of see peripherally, but at night, I couldn’t see car lights out of that eye at all, not even colour,” explains Tanya. 

Tanya and her cat, Zeus.

“I knew something big was wrong for a long time, so in some ways, the MS diagnosis made sense, but the discovery of a tumour as well was a shock.”

— Tanya Di Raddo

After an extensive examination by her eye doctor, she was referred to the University of Ottawa Eye Institute of The Ottawa Hospital. She met with a neuro-ophthalmologist and was diagnosed with optic neuritis, an inflammation that damages the optic nerve. However, Tanya also needed further testing to better understand the root of her headaches and vision loss. She never imagined what that test would reveal. 

Read our Q&A with Dr. Fahad Alkherayf

MRI results showed both MS lesions and a brain tumour. “I knew something big was wrong for a long time, so in some ways, the MS diagnosis made sense, but the discovery of a tumour as well was a shock,” explains Tanya. 

She was immediately referred to Dr. Fahad Alkherayf, a leading skull base neurosurgeon at our hospital. The MRI from mid-summer 2021 showed a large tumour at the back of her brain. “It was a three-and-a-half by five-centimeter mass — the size of a small orange. It was a meningioma, which is a benign tumour that is slow growing, but it was putting pressure on her brainstem and affecting her neurological function,” explains Dr. Alkherayf. 

Due to the size of the tumour and the impact it was having on Tanya’s life, Dr. Alkherayf believed surgery was needed within a few months.  

In the meantime, she turned to The Ottawa Hospital’s MS Clinic where she met Dr. Mark Freedman, a world leader in MS treatment and research. “She was referred to us after having her vision affected back in mid-2021. We proceeded to confirm a diagnosis of relapsing-remitting MS and then got her onto effective therapy as soon as possible,” explains Dr. Freedman. 

A plan for specialized brain surgery

As her MS treatment got underway, surgery to remove the tumour was scheduled for early November. According to Dr. Alkherayf, the surgery carried significant risk.  

The tumor was pressing at the back of the brain — which we call the cerebellum — as well as on the brainstem.” he says. “The brainstem is the main structure which controls a person’s ability to breathe, walk, and state of consciousness.” 

“It’s thanks to having a specialized team who work closely with our neuro-anesthesiologists to operate this equipment that we’re able to provide this technique.”

— Dr. Fahad Alkherayf

Neural monitoring, with what’s known as interoperative neuromonitoring, is an important part of this type of specialized surgery. It allows neurosurgeons to watch the patient’s brain and brainstem functions while attempting to remove the tumour. This is where The Ottawa Hospital excels.  

“We’re lucky in that we have good support from the hospital where we can do two or three surgeries at the same time with the ability to monitor the patient,” says Dr. Alkherayf. “It’s thanks to having a specialized team who work closely with our neuro-anesthesiologists to operate this equipment that we’re able to provide this technique.”

The Ottawa Hospital has invested to support this expertise, as it can be challenging to have the right people to operate specialized equipment and interpret the information. 

During Tanya’s operation, the surgical team sent a signal through the brain to stimulate her muscles to ensure they were responding during the operation. “Even though she was asleep, we’re still able to look at the function of the brain and brainstem, as if she’s awake,” says Dr. Alkherayf. 

Additionally, the system also helps the surgical team monitor the cranial nerve, which controls swallowing, for example. This prevents any possibility of damage during the surgery. If the nerves become irritated during the operation, the surgical team gets a signal.  

“When that happens, we stop immediately and change our course of action during the surgery,” says Dr. Alkherayf.

“If you don’t have that technology, then there is the risk of causing damage and you wouldn’t notice it until the patient wakes up.”

— Dr. Fahad Alkherayf
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During an almost eight-hour surgery, the large tumour pressing on Tanya’s brainstem was completely removed.
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Not just saving a life, but also maintaining quality of life

For Dr. Alkherayf, it’s not only about saving a life, but also about maintaining quality of life. He acknowledges it puts more stress on the team knowing they are caring for a young person, who has many years ahead of them.  

“A good analogy is a bomb squad. They want to disable and remove the danger without causing any problems or damage,” he says. “That’s what we’re doing when we remove a tumour like this. We want to remove it without causing any other damage that could impact the patient’s life.” 

The good news for Tanya is the whole tumour was removed during the almost eight-hour surgery. This provided her relief from the excruciating headaches she suffered, and her vision has improved, but colour is not crisp yet. “It’s like an older TV. It’s not 20/20, but it’s better than it was,” explains Tanya. 

Looking forward

It’s been two years since that complex surgery with no signs of recurrence to date, and she’ll be closely monitored by Dr. Alkherayf for up to 10 years. 

Tanya also continues to be in the care of Dr. Freedman for her MS. She has some challenges with her mobility and regularly uses support to get around, and MS flare-ups continue to impact her day-to-day living.  

“I’m doing better today, but cognitively it impacts my life,” she says. “It’s the little things we take for granted that I notice, like leaning forward to make a meal or cutting something. The numbness in my fingers makes it difficult, and sometimes my leg will give out.” 

The reality of facing two serious illnesses at the same time is not a uniqueness Tanya was aspiring for or ever thought she’d face, but she’s grateful to have access to the best treatment options available, from complex surgery to ongoing, compassionate care.

Tanya Di Raddo with her husband and daughter.

Published: October 2023

These days, when Amy Volume swings her leg over her motorcycle, it’s still a bit of a surprise. After a lifetime of pain, the announcer best known for entertaining listeners on CHEZ 106 radio had hip replacement surgery in May 2023 by the skilled orthopaedic team at The Ottawa Hospital.

Discomfort and pain plagued Amy her entire life. As a baby, she was always crying, well beyond just a colicky infant, so her parents sought out answers. “I was officially diagnosed with juvenile rheumatoid arthritis — an autoimmune disease — at the age of 18 months. My entire life I have grown differently,” explains Amy.

As a result, she spent much of her life in and out of the hospital. Her care started at SickKids in Toronto, but when CHEO opened its rheumatology clinic, Amy was able to be cared for in her hometown. By 16, she became a patient of The Ottawa Hospital and she’s been cared for here ever since.

“I have surgeons working at both the General and Civic Campuses. I have seen from an early age that the orthopaedic team is very invested in their patients' care.”

– Amy Volume

“I have surgeons working at both the General and Civic Campuses,” she says. “I have seen from an early age that the orthopaedic team is very invested in their patients’ care.”

Amy Volume in the CHEZ 106 studio.

What is rheumatoid arthritis?

Rheumatoid arthritis causes your immune system to attack healthy cells in your body and results in painful swelling, usually in joints. Long-term, this can damage the joint tissue causing chronic pain, lack of balance, and deformity. While it can develop at any age, it’s most common in adults in their sixties. “People do think that what I have happens to older people. This has been my life story,” explains Amy.

It’s certainly taken a toll on Amy’s body. As a result of the medications Amy takes, her body can’t fight infection. When she was a little girl, Amy got chickenpox and was hospitalized for three weeks. It also affected how her bones grew when she was young.

“It doesn’t just destroy your joints, which then leads to you having bone on bone contact, which creates terrible problems. It also attacks soft tissues, your organs, and your blood,” explains Amy. “You can tell when I’m having a rough day because I sound extra rough on the radio, but that’s my paycheck.”

Much of the pain Amy has experienced is because of her hips. They never formed properly when she was young, and she has hip dysplasia on both sides — a known risk factor for early hip arthritis.

“It’s all just bone on bone. And when that happens, as you can imagine, it’s just extreme pain, which interferes with your daily life. It makes normal activities near impossible, which also has an impact on your mental health.”

Radio host Amy Volume has been an orthopedics patient at The Ottawa Hospital since she was a teenager.

Hip replacement surgery by a specialized team

Amy was only 17 when she had her first bone surgery at the Civic Campus. She had her left toe joint removed because it didn’t grow properly, and it was replaced with a steel bar.  

“The prospect of not getting relief from this pain or losing my ability to walk — of having the hope of meaningful medical intervention and recovery slip away really spooked me.”

– Amy Volume

While the orthopaedic team at The Ottawa Hospital has been caring for her for twenty years now, most recently, her hips started to give her a great deal of pain — impacting her life, including keeping up with her two children, riding her motorcycle, and her overall mobility.

By 2022, the pain became unbearable. “The prospect of not getting relief from this pain or losing my ability to walk — of having the hope of meaningful medical intervention and recovery slip away really spooked me,” she recalls. ‘I can’t give up hope,’” Amy wrote in her blog.

The chronic pain that Amy has lived with is where Dr. Paul Beaulé, Professor of Surgery and an orthopaedic surgeon at The Ottawa Hospital, comes into the picture.

“Amy suffered from hip pain and a lack of function for over a decade. She had an underlying malformation of a joint that was probably present when she finished growing,” explains Dr. Beaulé. “At some point, the hip starts manifesting itself to the point where it’s not functioning properly because of the malformation.”

Amy’s right hip joint was too damaged to save, but because of research and technology advancements, there was a good plan to get her quality of life back, thanks to a specialized surgery,” explains Dr. Beaulé. “Using a total hip arthroplasty anterior approach, she could go home the same day. Because of this approach, her muscles aren’t damaged. That means when she’s done healing from the surgery, she can resume her activity more rapidly and have a good quality of life.”

Thanks to these advancements, Dr. Beaulé says Amy can expect a good 20 years of function with no major issues. “Amy truly is a poster child for the best possible outcome.”

An x-ray showing Amy’s new hip joint.

Research aims to improve hip surgery

Dr. Beaulé knows the impact that preserving and replacing hips can have on patients — especially young patients like Amy.

“Research helps us better understand what we’re doing in the operating room and asks the question, ‘Is this the best we can do?’”

– Dr. Paul Beaulé

One area of research that is of particular interest is surgery that can improve pain, stop damage, and prevent a hip replacement in people with pre-arthritic hip disease — that includes preventing and treating hip problems in young athletes.

Another key focus for Dr. Beaulé is studying the results of The Ottawa Hospital’s same-day joint replacement program, which focuses on getting patients home as safely and early as possible. “Research helps us better understand what we’re doing in the operating room and asks the question, ‘Is this the best we can do?’” says Dr. Beaulé.

Amy is a big proponent of research and the possibilities it could create for her and other patients — especially knowing she will face more orthopaedic surgeries in the future. That’s why she’s also open to participating in research studies so more can be learned about her illness.

“We’re always learning, and there is no one-size-fits-all treatment. I’m always raising my hand and saying yes to the next thing, because we are blazing a trail, and I might make it easier for the next kid that comes along with this weird disease because something worked for me — it might give hope to others.” 

She’s grateful for the work of the orthopaedic team at The Ottawa Hospital, including the Research Chair in Regenerative Orthopaedic Surgery, and what their research could mean for patients in the future as well.  

Read our Q&A with Dr. Beaulé

"You're a part of the scientific frontier that is going to improve the quality of life for all Ontarians, Canadians, and perhaps even globally. It’s the big picture.”

– Amy Volume

“I think that the more people that you can encourage to get on the research train the better. You’re a part of the scientific frontier that is going to improve the quality of life for all Ontarians, Canadians, and perhaps even globally. It’s the big picture.” 

Getting her life back

Following her surgery, Amy was amazed to be up and walking in no time with the assistance of crutches. While there was some initial post-op pain, she was back on the air within 11 days.

Now, several months later, she’s started to see the impact this specialized surgery will have on her long term. “I’m getting into the zone where I’m healthier than I’ve ever been. It’s because The Ottawa Hospital and the surgical teams put their best foot forward in making sure that I have a fulfilling life — that I can keep up with my kids. They’re very fast,” Amy laughs.

Amy Volume enjoying one of her passions, riding her motorcycle.

“I say thank you profusely to the surgeons, but I know to them it’s their 9 to 5 job, that’s what they’re doing constantly, day-in and day-out. They are rock stars – they are who I idolize.”

– Amy Volume

She’s also truly grateful and in awe of the work of her surgical team. “I say thank you profusely to the surgeons, but I know to them it’s their 9 to 5 job, that’s what they’re doing constantly, day in and day out. They are rock stars – they are who I idolize.”

For now, Amy enjoys being able to ride again and is grateful for the quality of life she’s been given. While she knows there will be more surgeries down the road on her other hip and right toe, she has complete confidence in what her care team has planned for her.

“I saw my surgeons in my follow-up care, and I know they’re invested in my continued success, which is really nice. And it makes me feel good about the future, because I know I will be seeing them again. It’s nice to know you have that team of experts on your side.”

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.

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