Category: Patient Care

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.

Categories:

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.

Categories: Strengthening Critical Services

A CANCER JOURNEY

Years after losing his dad to cancer, Robert Nsengiyumva faces his own diagnosis

Published: February 2024

When Robert Nsengiyumva was 24, he lost his dad to liver cancer. It was a devastating time for this young man and his family. Little did he know, 25 years later, he’d face a cancer diagnosis himself — stage IV stomach cancer.

After his dad died, Robert assumed the role of father figure to his four younger siblings — two sisters and two brothers. While his mother worked to help support the family, he also stepped forward to help provide care and financial support for his family.

In the years that followed, cancer was no stranger to Robert’s family — several other members also faced a cancer diagnosis. Then in 2021, he received his own devastating diagnosis after experiencing weight loss and abdominal pain, along with nausea and vomiting. “I was 53. I was an active person, and so it was a very difficult time for me,” explains Robert.

Coming to terms with the news was also difficult for those closest to him, like his wife and circle of friends. “I will not lie; it was a like a bomb dropped — it was that shocking. When I decided to tell a few friends what was going on, they didn’t believe me at first. They thought it was a joke — then they realized it was true,” explains Robert.

Understanding a stomach cancer diagnosis

Stomach cancer — also known as gastric cancer — is a growth of cells that starts in the stomach. While it often starts in the lining, it can start in anywhere in the stomach. Thankfully, occurrences have been declining, but it is still one of the most common cancers worldwide.

Robert at the Civic Campus of The Ottawa Hospital. Photo by Ashley Fraser

According to the Canadian Cancer Society, most stomach cancers are found when the disease is advanced and remission is less likely. When it spreads past the stomach wall or into other parts of the body, it’s harder to cure.

In Canada, the five-year survival rate for stomach cancer is 29%.

Due to the stage of Robert’s cancer, treatment began right away. His medical team at The Ottawa Hospital included, Dr. Dominick Bossé, medical oncologist, and Dr. Carolyn Nessim, surgical oncologist, who were ready with a plan. The first course of action was four chemotherapy treatments. These started on October 18, 2021, and the last treatment was at the end of November. Next up would be surgery.

By early January 2022, Robert underwent surgery on his stomach, led by Dr. Nessim. “It was an isolating time. I had to live within four walls because of the pandemic. I had to be careful not to get COVID,” he says.

After a successful operation, Robert was given some time to recover before he resumed chemo treatments. By the end of April, his treatments were done and deemed a success.

“The first round of chemotherapy treatment was very difficult; I suffered a lot, but the final four were much easier. After my treatments were done, I started to improve and feel better,” explains Robert.

Here to say thank you

By July 2022, Robert returned to work part-time. “Then by August, I was back on the job as a Building System Technician in the Public Service, full time. That’s something I never thought would happen when I first received my diagnosis,” says Robert.

“I wanted to support those who faced cancer like me, and so becoming a donor to The Ottawa Hospital was an easy choice.”

— Robert Nsengiyumva

Today, he shows no signs of recurrence, and Robert is making the most of every day.

Robert at the Civic Campus of The Ottawa Hospital. Photo by Ashley Fraser

He’s also deeply grateful for the team of medical experts that were ready to care for him when he needed them most. In fact, he’s always wanted to give back in some way. “I wanted to support those who faced cancer like me, and so becoming a donor to The Ottawa Hospital was an easy choice ,” says Robert.

It’s a monthly donation that allows him to say thank on a regular basis to those who helped give him more time. “This is my way to thank everyone who cared for me. The staff, including the doctors and nurses at The Ottawa Hospital Cancer Centre, who treated me during my illness. I don’t know how to thank them enough, so I decided to send my donation every month, and it feels good.”

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

Categories: Cancer, Cancer, Cancer, Cancer, Cancer, Donors

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.

Categories: Mental Health, Mental Health

A CANCER JOURNEY

Randy McElligott’s unusual reaction to his cancer diagnosis

Published: February 2024

When Randy McElligott heard the words “you have cancer”, he didn’t have the average reaction to this type of news. “I was happy. Most people don’t take that attitude, but I saw it as an opportunity to change my life,” explains Randy.

That’s exactly what he did. Randy decided to train for a marathon. He wanted to try something challenging, and he’s been moving ever since.

“I had what’s known as smoldering multiple myeloma. It sits there and doesn’t do anything. It’s like a volcano just waiting to erupt.”

— Randy McElligott

It was July 13, 2005, and Randy was 49 when he received the news — it was a surprise find. His family doctor had ticked off an extra box on the requisition form for his blood test. That mark resulted in the discovery of cancer — or what would become cancer. “I had what’s known as smoldering multiple myeloma. It sits there and doesn’t do anything. It’s like a volcano just waiting to erupt,” explains Randy.

Multiple myeloma is a cancer that starts in a type of white blood cell that’s known as a plasma cell. These cells help the body fight infection, and they can be found in the bone marrow, as well as other tissues and organs.

For nine years, he waited for the “eruption” but maintained his positive attitude. And over those years, he kept busy doing the things he loves, like hosting his jazz radio show, In Transition, on CHUO-FM — a program he’s been doing since 1988. But his greatest distraction has been running. Since his diagnosis, he has completed 12 marathons and about 80 half-marathons. “That kept me sane and kept me focused. By doing marathons, I was building up my mental ability to handle what was ahead for me regarding cancer.”

Becoming symptomatic for multiple myeloma

In 2014, Randy and his wife, Nicole, were in Barbados on vacation, and he became symptomatic. “I was in excruciating pain. I returned home and was hospitalized right away. The cancer had spread to my spine, chest, and sternum.”

Randy makes bi-weekly visits to the General Campus for his treatment.

Once Randy was stabilized, he was discharged, and chemotherapy treatment began at the cancer outpatient at the General Campus of The Ottawa Hospital. He also forged on with his running.

The next big hurdle Randy faced was a bone marrow transplant in October 2015. But true to his character, seven weeks later he did a 10k run and then another marathon. “It’s all because of the cancer. I must prove, even if I have cancer, I don’t have to stop. I wanted to show other cancer patients they can keep going. Look at Sindy Hooper — she is incredible and one of the inspirations in my life to keep going and do these races,” explains Randy.

“I have a great cancer team. If any medical trials are coming up, they know I want to help.”

— Randy McElligott

This cancer journey has been a rollercoaster ride for Randy — he has been in and out of remission several times since his diagnosis almost 20 years ago. But his positive attitude is the one thing that never wavers.

He also credits the specialized team — which includes four hematologists — for always being ready when a new challenge presents itself. “I have a great cancer team. If any medical trials are coming up, they know I want to help.”

Access to clinical trials at The Ottawa Hospital

Access to clinical trials is key for patients like Randy, and thankfully, The Ottawa Hospital has one of the largest and strongest clinical trials programs in Canada. This gives patients access to even more novel therapies. And in addition to helping establish best practices for patient care around the world, clinical trials also provide new hope.

Through his own journey, Randy is doing what he can to help our scientists learn more. “I told my hematologist, Dr. Arleigh McCurdy, she can do anything. I’m your guinea pig. I’m on my second drug trial now. It’s a highly experimental drug and so far, it’s going well. The first trial, three or four years ago, was for another drug, and that worked for a while, but then I relapsed,” says Randy.

“It means the world to have access to this type of care. And if I can help other patients, what could be better?”

Randy is an avid runner.

Maintaining a positive attitude

In the last few years, Randy faced new health challenges. In 2021, within only a few weeks, he lost 30 pounds. It was a bit of a mystery as to what was happening. “It was looking like this was the end of the road for me. I thought my time was running out, but I just said, ‘Cool.’ Hospice care was being planned, but then I started gaining weight again, and I completely rebounded,” explains Randy.

“I never get discouraged. I’m always joking around. It’s been an incredible journey.”

— Randy McElligott

Unfortunately, Randy then had new obstacles to overcome. The following year, he was on a trip to Montreal with his wife when he fell and broke a leg, wrist, and two ribs. Then in February of 2023, he broke the same leg, again. After surgery on that leg, he contracted a potentially life-threatening bacterial infection. He was treated in hospital for a month, and he had to learn to walk again.

These incidents may have taken the biggest toll on him, as they’ve prevented him from running. “I never get discouraged. I’m always joking around. It’s been an incredible journey.”

Today, thanks to the clinical trial he’s currently on, Randy is once again in remission. He hopes to start back on his spin bike to regain his strength so one day he might get back to running — his true love.

Randy makes bi-weekly visits to the General Campus for his treatment.

For now, he makes bi-weekly visits to the General Campus for his treatment. “It was initially every week, but now it’s every two weeks, and it only takes seconds to administer by needle. I think my team is surprised I’ve lasted this long after relapsing several times. But as of today, there’s no trace of the myeloma,” Randy smiles.

While fatigue is preventing him from being active, he continues to entertain radio listeners with his jazz favourites and looks forward to lacing up his running shoes once again.

“It’s really an incredible life.”

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

Categories: Clinical Trials, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care

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

Learn More

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
Categories: Mental Health, New Campus Development

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 (anti–GBM) 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.
Learn more about kidney disease

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 anti–GBM.  

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.

Katie with family and friends at the cottage
Katie with family and friends at the cottage
Categories:

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

Learn More

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.” 

A CT scan showing the tumour at the back of Tanya's skull.
A CT scan showing the tumour at the back of Tanya's skull.
A CT scan showing the tumour at the back of Tanya's skull.
A CT scan showing the tumour at the back of Tanya's skull.

“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.
Categories: Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research

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

Learn More

"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.”

Categories: World-Leading Research

Update: October 2023

Over the past few months, we’ve had the distinct privilege of working closely with Alison Hughes to share her story. Only 37 years old when she was diagnosed with breast cancer, she wanted to raise awareness, especially among other young woman like her.

We are heartbroken to learn that Alison passed away on Wednesday, October 11, 2023. We offer our deepest condolences to all those who knew and loved her, and we remain profoundly inspired by her.

Originally published: September 2023

This is Alison’s story told in her own words.

I wanted to share my story now, because I want more young women to have a story they can relate to. Sadly, breast cancer doesn’t just affect women over 50. By sharing my story, I hope I can help younger women better understand what this journey is all about, because I didn’t really have that when I was first diagnosed ten years ago. 

At that time in my life, I owned a consignment store specializing in women’s fashion. I love fashion, so it was a great fit for me. I also had two young children — life was busy.  

But then I got the shock of a lifetime. It started when I found a lump on my right breast, and I remember telling my husband at the time that it hurt. He told me not to freak out, but I just had this feeling something was wrong, so I called my doctor.  

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Little did I know, that was the beginning of my breast cancer journey. I was sent for a mammogram, just to be safe. It was a Friday, and I remember walking into the office and looking around and seeing older women — I was young and hip — no one else looked like me. It wasn’t long after the mammogram that I knew something was wrong. The busy office went quiet, it was like I’d stepped into a movie. Other experts came in and examined my results. It turned out I had stage 3 breast cancer.  

My way of coping with a breast cancer diagnosis

I remember someone talking to me, but I honestly don’t remember what they said. Then a lovely nurse sat next to me, and that’s when I felt a tear drop out of my eye, and then I slowly started to cry.

“I can’t do this…I have no room in my life for this right now – this can’t be happening!’

— Alison Hughes

I drove back to my store and remember thinking ‘I can’t do this. I have a two-year-old and a three-and-a-half-year-old. I have no room in my life for this right now – this can’t be happening!’ 

But it was happening, and within two weeks, I had a PICC line inserted, and chemotherapy soon followed. The news of my diagnosis was particularly difficult for my parents because my dad’s mom died from breast cancer in her mid-thirties. So, I said ‘We have one day to cry and then after that, for the outside world, there’s nothing happening.’ We hid my diagnosis from almost everyone — that was my coping mechanism. Everyone has their own way of coping – this was mine. 

Soon, I met Dr. Mark Clemons. I refer to him as my first oncologist and now my forever oncologist. We clicked. He was well informed, supportive, and had time for all the questions we had for him. He gave me confidence to know that the choices he was making were not from just a singular perspective, he was looking at my total healthcare options.  

Alison Hughes with her two children, Rosie, and Raffi.
“Alison is an amazing woman. She is young and has such enthusiasm for life – something her breast cancer is trying to rob her of. But thankfully, the treatment we have now compared to 25 years ago, is night and day. It’s far less toxic and more effective. We also have the availability of clinical trials which Alison has been involved with, including REaCT trials. The REaCT program is Canada’s largest practical trials program, that time and time again shows that we can treat patients with more effective personalized therapies with significantly less cost to the patient and the healthcare system.”
— Dr. Mark Clemons
— Dr. Mark Clemons
“Alison is an amazing woman. She is young and has such enthusiasm for life – something her breast cancer is trying to rob her of. But thankfully, the treatment we have now compared to 25 years ago, is night and day. It’s far less toxic and more effective. We also have the availability of clinical trials which Alison has been involved with, including REaCT trials. The REaCT program is Canada’s largest practical trials program, that time and time again shows that we can treat patients with more effective personalized therapies with significantly less cost to the patient and the healthcare system.”
— Dr. Mark Clemons
— Dr. Mark Clemons
Alison is living with stage 4 breast cancer.

The specialized team ready to handle my care

But he wasn’t alone. There was an entire team at The Ottawa Hospital ready to help me have more time to watch my children grow.  

From September to December 2013, I underwent chemotherapy, but by the fifth and sixth treatment, I was hit hard. My beautiful hair fell out, my skin turned gray, and I was in bed all the time. Then in February of 2014, just as I gained back most of my strength, I had a mastectomy. During that operation, a bunch of lymph nodes from under my right arm were removed and sent for testing. We’d later learn that more than half of them were cancerous. That’s when radiation treatment started. 

The care was amazing, and so were the resources made available to me afterwards, because that is a difficult operation to undergo. I had access to psychosocial oncology, as well as a dietitian.  

By that summer, I started feeling better, and that’s when I started telling people what I had gone through. Sometimes they’d turn white as a sheet when they heard the news — I really believe it’s because there’s not a lot of women my age that relate to this kind of a diagnosis.  

Then after five years, I was doing well and released from the cancer program. I had successfully recovered from breast cancer — or so I thought.  

Devastation when cancer metastasized

In 2021, in the middle of the pandemic, I experienced a ton of pain in my back and my hips. I started physio and got relief for a few days but then it came back. One day at work, I tripped on a mat, fell, and couldn’t get back up at first. I kept getting this insane spasm. Later that night my parents found me on the floor, unable get up. They helped me into bed, and I stayed there for four days. 

Then one day my daughter noticed my leg looked like I’d been burned by a big rod. I looked at my kids and I said, ‘I think I should go to the hospital.’ Little did I know my world would be turned upside down, again. 

“I went from seeing a physiotherapist because of my back pain to stage 4 cancer with possibly only months to live. It was almost too late.”

– Alison Hughes
Soon, I discovered my breast cancer had metastasized. I had compression tumors on my spine and a lesion in my lung. I had a tumour on my liver, and there was cancer in my stomach and in my bones. I also had multiple moving blood clots, which caused that mark on my leg. It was kind of like the house was lit on fire and it was going up in flames. Suddenly, I went from seeing a physiotherapist because of my back pain to stage 4 cancer with possibly only months to live. It was almost too late.   

My body was riddled with cancer

The next thing I knew, I dove back into treatment. I had a radiation team, an oncology team, and a palliative team. I had a home nurse as well as psychological support. The resources are unbelievable.  

I moved back in with my parents, along with my kids who were then 10 and 12, because I was at a point where I couldn’t climb a set of stairs, and I couldn’t really function on my own. In addition to the blood clots, I had multiple broken bones from the cancer and crooked shoulders from all the broken bones in my back. I was either in a wheelchair or walked with a cane, and my stomach was really bloated because of the disease. There was just so much going on — my body was in emergency mode.  

While my extensive team at the hospital mobilized, my parents took care of me and the kids, and our incredible network of neighbours rallied alongside us. That meant I could be in treatment, and the kids could still have some normalcy — they could go outside and play.  

Alison with her parents and children.

Finally, there was some good news

From June 2021 through until February 2022, I had radiation led by Dr. Laval Grimard to help with the cancer in my bones, followed by chemotherapy. After a clinical trial was not successful, Dr. Clemons tried me on a new chemo option that finally brought some hope. In June 2022, I started to feel better.

By that summer, my spine started straightening, I could move better. And my health continuously improved. All my bones healed, the tumors shrunk, and I could walk unassisted most of the time. I was back working part time as a background actor in movies — maybe you’ve seen me in a Hallmark movie — I also do some modelling.

By the spring of 2023, I had a clear scan, and I went overseas to spend some time in Oxford and London — it was spectacular. But when I returned home in early June, I could feel my body grinding to a halt. I could barely walk. The next thing I knew, I was in a wheelchair — I couldn’t walk. It happened fast.

Alison on set.

Little did we know what would come next

Once again, I was thrust into emergency mode to determine what was happening. I had x-rays and scans, and I don’t think any one of us expected to see what we saw on those scans. I was pretty sure this was it for me.

There were new lesions on my lower spin and this time they also found a tumour on my brain. Immediately, my care team acted. My new plan included five radiation treatments on my back and one on my brain. Then I started a new type of chemo treatment in August. This chemo is at the forefront of treatment options, and I can’t thank Dr. Clemons enough. I call it the Cadillac of treatment — I feel really lucky. And the way I see it is, if I can be an early user of this drug and they can learn from me, that’s a good thing.

“My philosophy is, if you can test me or use my blood or do something with me that's going to make things better for someone else, sign me up.”

– Alison Hughes
In fact, when it comes to clinical trials, I’m in total favour of getting involved. I told them, ‘You can poke me, learn from me, use me as a case study. Let students practice on me.’ I’m already sick, so my philosophy is, if you can test me or use my blood or do something with me that’s going to make things better for someone else, sign me up. I just feel so fortunate to have this level of care and access to clinical trials — even if the one I tried didn’t work, it gave me time. And the medical team learned because of me.
Alison with her two children, Rosie, and Raffi.
Every day I’m so thankful to have this precious time. Dr. Clemons has even given me the nickname “Puss in Boots” because it’s like I have nine lives. He has such a unique and special way with patients. He asks, ‘What life are we on?’  
Read our Q&A with Dr. Clemons

In fact, I often find myself thinking, ‘Who gets this many chances?’ And that’s why I’m sharing my story. I’m fortunate for the care, the support, and the learning because life doesn’t always gets perfectly tied with a bow — not everyone gets a bow.

I don’t know what the future holds.

I just want the chance to be here for my kids and my family. I do my best to make every day a good day with them and hope that science continues to improve. Today, Rosie is 13 and Raffi is 11. I’m learning to become a mom of teens. I like to think about their high school graduation and university life. I just hope I’ll be able to keep watching them grow, even when they don’t need me as much.  
Download episode #86 of Pulse Podcast to hear Alison’s story and why she wants to help other young women who face a breast cancer diagnosis.

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Categories: Cancer, Clinical Trials
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