Published: April 2025

Three times a week, you’ll likely find Chantal Theriault kickboxing to stay in shape — physically and mentally. It’s a sport she picked up easily from her father, Jean-Yves “The Iceman” Theriault — a world kickboxing champion. It’s the strength she developed from this sport, along with her sense of humour, that helped her navigate through an astonishing medical diagnosis five years ago. At the age of 37, Chantal learned she had early-onset Parkinson’s disease — this was one hit she didn’t see coming.

The distressing news for this otherwise healthy young woman was delivered during the peak of the pandemic in the summer of 2020. Initially, there were many more questions than answers. Still, never one to back down from a challenge, no matter how insurmountable this one appeared to be, Chantal came to terms with the news, educated herself, and put her trust in the committed physicians and researchers at The Ottawa Hospital (TOH).

Chantal is all too familiar with our hospital but from a different vantage point. She’s a program coordinator in the Critical Care Department. She’s been a part of the TOH family for 22 years — she started in Admitting Services and worked her way to where she is today on the Intensive Care Unit team. It’s a team for which she has the utmost respect, and she plays an important role.

“Any resident that must do their rotation in the ICU comes through me. I do the scheduling for the Civic and the General campuses. There are about 300 residents that come through the year,” explains Chantal.

Working in the ICU for so many years, she has garnered the utmost respect from her colleagues for the high quality of her work and her pleasant demeanour.

It started with tremors in her hand

As Chantal was busy with her work, during the height of the pandemic, she developed a tremor in her arm. “It started in my hand and then made its way up my arm, and eventually I could feel it in my leg a little bit. I initially thought I pinched a nerve in my neck.”

“When I walked, he noticed that my right arm didn’t swing. That was a big sign. After a few other tests, I learned I had early-onset Parkinson’s.”

— Chantal Theriault

As an avid kickboxer, she exercises regularly and has dealt with a minor injury or ache in the past. She was going to try her chiropractor, but she kept putting it off and eventually, it was recommended she might want to see her family physician, as the symptoms progressed.

After several tests, including an MRI, which showed nothing concerning, she met with a neurologist at The Ottawa Hospital, who put Chantal through several physical tests. “When I walked, he noticed that my right arm didn’t swing. That was a big sign. After a few other tests, I learned I had early-onset Parkinson’s.”

At that point, Chantal’s mind just completely shut down, as she describes it. “The two people that I think of right away when I hear Parkinson’s are Michael J. Fox and Muhammad Ali. I wondered, ‘What the hell do I have in common with these people?’”

What is Parkinson’s disease?

Parkinson’s disease is a movement disorder that affects the nervous system. The symptoms start slowly but progress over time, and although tremor is a common symptom, slowness and stiffness are additional features present early on. The risk of Parkinson’s increases with age, and men are more likely to develop it than women. When a person is diagnosed before the age of 40, it’s often referred to as early-onset Parkinson’s.

That day of her diagnosis, Chantal went home and had what she describes as a moment of woe, and then she moved on — grateful to work at The Ottawa Hospital and to be surrounded by some of the best care team members in the world.

“There will be mobility issues someday but that's down the road. Right now, I have things to do. I have a life to live.”

— Chantal Theriault

“I don’t know what this means or what the progression timeline looks, but I’ve got a team behind me — I’ve got this. There will be mobility issues someday but that’s down the road. Right now, I have things to do. I have a life to live.”

All about Parkinson's

For many people, the first time they heard about Parkinson’s disease might have been when Michael J. Fox shared his diagnosis in 1998. For many others, the first time they heard about Parkinson’s might have been when someone they know received a diagnosis — a parent, a friend, a co-worker, or maybe even themselves.

Learn More

She also used humour to help get through some of those early days of living with Parkinson’s, including a new tattoo that she got done on the inside of her right arm. It reads, ‘Shaken not stirred’.

Another big step in this new journey for Chantal was meeting Dr. Michael Schlossmacher, Director of the Neuroscience Program at our hospital. “He is the most incredible human being — super supportive, super down to Earth,” says Chantal. “He takes the time, and he encouraged me to bring a family member during my follow-ups if they have questions.”

That’s also around the time where the impact of research came into play for this young woman. She’s enrolled in two research projects at our hospital, including one Dr. Schlossmacher is leading.

The global impact of Parkinson’s research

It’s research that drives Chantal. She’s put all her efforts into helping to advance treatment options and hopefully to help scientists find a cure for the disease someday. That’s what motivated her to create the Kick It for Parkinson’s fundraiser, which supported The Michael J. Fox Foundation for Parkinson’s Research — an organization that has funded research here at The Ottawa Hospital.

In December 2024, an international team led by Dr. Schlossmacher received a US$6 million grant from the Aligning Science Across Parkinson’s (ASAP) initiative, in partnership with The Michael J. Fox Foundation, to continue their work on reduced sense of smell in Parkinson’s disease — a testament to our leadership in research.

“Our interdisciplinary team is on the leading edge of this topic, making discoveries that could one day impact diagnosis, prevention, and possibly, patient care.”

— Dr. Michael Schlossmacher

“Understanding the loss in sense of smell in Parkinson’s is having its moment right now,” says Dr. Schlossmacher. “Our interdisciplinary team is on the leading edge of this topic, making discoveries that could one day impact diagnosis, prevention, and possibly, patient care.”

More recently in another study, the first clinical trial of its kind showed interpersonal psychotherapy may be better than other types of psychotherapy for treating depression in patients living with Parkinson’s. People with Parkinson’s often experience depression, but there’s been little research to show what type of psychotherapy works best. 

The trial, led by Dr. David Grimes, Director of the Parkinson’s Disease and Movement Disorders Clinic and Dr. Diana Koszycki at the University of Ottawa, assigned 63 people with Parkinson’s and depression to one of two types of psychotherapy for 12 sessions. The group with interpersonal psychotherapy had significantly lower depression scores.

Director of the Parkinson's Disease and Movement Disorders Clinic

Find out how Dr. Grimes got pulled into the field of neurology and what advice he has for people diagnosed with Parkinson’s.

Read our Q&A with Dr. Grimes

“Psychotherapy is an important option for treating depression in Parkinson’s. Healthcare providers should consider recommending it alone or in combination with antidepressants,” says Dr. Grimes.

It’s patients like Chantal that make this type of research possible. “I’m very proud to have the opportunity to be part of the studies I’m involved in. This was a life-changing diagnosis, and if taking part in these studies is what’s going to make a difference, then I’m going keep doing it,” she says.

Dr. Schlossmacher adds that working with patients is a privilege and calls their courage and commitment “humbling”. He refers to Chantal as a source of inspiration and motivation for him and his research team.

Building a new neuroscience centre

The new neuroscience centre, to be located at the new hospital campus on Carling Avenue at Preston Street, will have the potential to be among the best in the world. It will combine cutting-edge research with clinical treatments to accelerate the development of new therapies for conditions such as Parkinson’s, stroke, epilepsy, multiple sclerosis, and more to help patients just like Chantal.

"“There's going be a cure for Parkinson's, maybe not in my lifetime but there will be. I hope that I get to see it and then I can say, I was part of that study.”

— Chantal Theriault

As the research continues to move forward, Chantal will be more than a spectator as she continues to help advance scientific discoveries through her participation and fundraising whenever she can.

As her tremors are controlled today by medication, she’s proud to be a part of the TOH family that’s working towards progress. “There’s going be a cure for Parkinson’s, maybe not in my lifetime but there will be. I hope that I get to see it and then I can say, I was part of that study, or when Dr. Schlossmacher gets the Nobel Prize or something, I can say I know him.”

As she takes a moment to pause, tears fill her eyes, then Chantal continues. “It makes me proud. It makes me very proud to work for this organization.”

Download or steam episode 108 of Pulse Podcast to hear from Chantal Theriault and her journey with early-onset Parkinson’s.

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Categories: Neuro, Parkinson's

A CANCER JOURNEY

A journey through two cancers and the BRCA gene mutation

Published: February 2025

When Jennifer Hollington was diagnosed with ovarian cancer, she didn’t see it coming. This shocking news started her down a path she never imagined, including two more significant medical developments: the discovery she had the BRCA gene mutation, and a skin cancer diagnosis.

While well-versed in the healthcare sphere because of her job with Health Canada and the Public Health Agency of Canada, Jen wasn’t prepared for the health crisis she faced in 2020 at the height of the pandemic. However, she was introduced to a large multidisciplinary team of healthcare professionals at The Ottawa Hospital, who helped guide her through this cancer journey.

It was late July 2020 when Jen woke up in the middle of the night with intense pain in her side. After a call to Telehealth Ontario, she went to a local Emergency Department, where blood work and an ultrasound revealed the shocking news — Jen’s tests pointed to a likely diagnosis of ovarian cancer.

“It was a scary and unexpected diagnosis. I came to terms with it only after repeating it many times to family, friends, and co-workers,” she explains.

A stage 3 ovarian cancer diagnosis

By early August, Jen took a leave from her job as the Assistant Deputy Minister of Communications for Health Canada and the Public Health Agency of Canada. Not long after that, she met Dr. Wylam Faught, head of the division of gynecologic oncology based at the Shirley E. Greenberg Women’s Health Centre at the Riverside Campus.

“He sees you as a person, not simply as a patient who is on a long list of patients.”

— Jen Hollington

Dr. Faught took time to walk Jen through what her journey might look like with what he suspected was stage 3 ovarian cancer. “We’re pretty realistic when meeting with a patient who faces this diagnosis. We try to start into the treatment journey with the patient’s eyes wide open — every patient is different.”

For Jen, this approach was exactly what she needed. “Dr. Faught was very empathic, but also realistic about the challenges of ovarian cancer, which I appreciated. He sees you as a person, not simply as a patient who is on a long list of patients. It was comforting to know that we were moving forward, but it was also scary.”

The impact of research on patients facing ovarian cancer

In 2024, an estimated 3,000 Canadian women were diagnosed with ovarian cancer. The disease impacts women of all ages, but it’s more common in women who have gone through menopause. Sadly, the current five-year survival rate is only 45%, and that’s why research at all levels plays a critical role in advancing new treatment options.

Researchers like Dr. Barbara Vanderhyden and her team at the Vanderhyden laboratory at The Ottawa Hospital are dedicated to studying this disease.

Read our Q&A with Dr. Tien Le

Testing shows the BRCA2 gene mutation

In late August, Jen underwent surgery to remove her uterus, cervix, ovaries, and Fallopian tubes, followed by six rounds of chemotherapy. Her gynecologic oncologist, Dr. Tien Le, was able to remove most of the visible cancer. The final pathology report confirmed Jen had stage 3 high-grade serous carcinoma arising from her ovary. Luckily, this meant there were very good initial treatment options to manage her cancer.

“Dr. Le told me they are increasingly looking at ovarian cancer as a chronic disease, to keep people living longer and longer. I found this especially encouraging,” says Jen.

That pathology report also indicated her ovarian tumour cells carried the BRCA2 gene mutation. Genetic testing was suggested to see if she was a carrier of the gene change. This would have further impact on immediate family members and direct further treatment for the patient.

All humans have the BRCA genes (BRCA1 and BRCA2). You inherit one from each of your parents, and if one parent has a mutation, there is a 50% chance you will inherit it. These genetic mutations are known to predispose carriers to develop hereditary breast and ovarian cancers, among other cancers.

“Patients with this mutation tend to have a much better prognosis than someone who is not a carrier of the gene change, because there are more treatment options, and the patient is more responsive to chemotherapy. It was positive news overall.”

— Dr. Wylam Faught

By the spring of 2021, genetic test results showed Jen had a mutation in her BRCA2 gene, which subsequent testing revealed she had inherited from her father. This presented another medical hurdle, namely a significant risk of developing breast and other cancers.

While the news was initially alarming to Jen, Dr. Faught explained it offered hope. “Patients with this mutation tend to have a much better prognosis than someone who is not a carrier of the gene change, because there are more treatment options, and the patient is more responsive to chemotherapy. It was positive news overall.”

Once her chemotherapy was complete, Jen was eligible for an effective new class of oral medication known as PARP inhibitors called Olaparib. “It’s only been in the last handful of years that this group of patients with the BRCA gene mutation have benefitted from this new drug, which in some cases has the potential for putting them into remission. So, within her diagnosis of ovarian cancer, there was this silver lining,” explains Dr. Faught.

Optimizing her chances for the future

With the results of the genetic testing placing Jen at a higher risk of breast cancer, Dr. Le referred her to Dr. Erin Cordeiro, a breast surgical oncologist at The Ottawa Hospital.

“Dr. Cordeiro was clear, respectful, and kind as she answered all my questions and provided the detailed information I needed to make my final decision on one of two options,” says Jen.

Those options included continuing with annual mammograms and breast MRIs through Ontario’s high-risk screening program or having a preventive bilateral mastectomy. Armed with plenty of statistics, like how preventive surgery would reduce her risk of developing breast cancer by 95%, Jen considered the options.

“I pretty much knew right then and there, surgery was the best option for me. I was so reassured by the call with Dr. Cordeiro. I came away knowing so much more about my options as well as their advantages and disadvantages.”

Her next step was to meet with a plastic surgeon, because as Dr. Cordeiro explained it, she would remove the breast tissue and the plastic surgeon would reconstruct the breasts during the same surgery.

Then another cancer diagnosis

Shortly before the appointments relating to her mastectomy, Jen inquired with her family doctor about an itchy patch of skin near her anus that had persisted for a few years but seemed harmless enough. In September 2021, she met with a dermatologist, who did a biopsy. “He mentioned the possibility of cancer. I thought ‘Good grief, as if I need more cancer in my life.’”

Within days, the news was confirmed, Jen had a second cancer — anal margin squamous cell carcinoma — perianal skin cancer. This news introduced her to a whole new cancer team at our hospital who rallied around her.

Colorectal surgeon Dr. Robin Boushey removed an almost one-centimeter tumour. When the post-surgery pathology report indicated that pre-cancerous cells remained in the margins, Dr. Boushey referred Jen to radiation oncologist Dr. Jenny Jin.

“The pathology showed there were precancerous tumours along the cut edge of the tumour. We knew that she would have quite a high risk of local recurrence if there was no further treatment,” explains Dr. Jin.

“There’s been no evidence of any recurrence, and soon she’ll be three years out. The highest rates of recurrence are in the first two years, and so her chances are getting better.”

— Dr. Jenny Jin

Another surgery was possible, but that brought some risks and could impact Jen’s quality of life. “If she were to have more resected, it would mean that she’d likely end up with a permanent ostomy pouch for bowel movements, so we went with an organ preservation approach,” explains Dr. Jin.

By February 2022, Jen finished 25 treatments of radiation. “She’s done very well ever since. There’s been no evidence of any recurrence, and soon she’ll be three years out. The highest rates of recurrence are in the first two years, and so her chances are getting better,” says Dr. Jin.

For Jen, it was another big hurdle she’d overcome.

Jen and Nurse Hillary ringing the radiation bell at Irving Greenberg Family Cancer Centre

Jen ringing the bell at The Ottawa Hospital

The overarching support along the way

One thing that stands out to Jen along this journey has been the many multi-disciplinary teams who cared for her, including many nurses and allied health professionals. One in particular had a huge impact. Jacinthe Lepage has been a nurse at The Ottawa Hospital for over 30 years, and she’s spent most of her career working in gynecology oncology.

More recently, her role has evolved to include a first-of-its-kind nurse-led PARP inhibitor clinic at our hospital’s Cancer Centre.

“The clinic first opened in March 2023 and there’s no other clinic like it – anywhere in Canada,” explains Jacinthe. “There’s a lot of monitoring and calls when somebody is on this drug, so I’m the nurse that’s there for those patients.”

It’s this experience, compassion, and candor that Jacinthe brings to patients that resonated with Jen. “Jacinthe is fabulous, and she’s been with me through this whole experience. A voice of comfort and reason when I have questions. She’s always there.”

Jacinthe Lepage, clinical oncology nurse

“I don’t see the cancer when I talk to them, because I know that they don’t want to be identified as that. To me, it’s very important to treat the person behind all this.”

— Jacinthe Lepage

For Jacinthe, it’s a special role that she takes very seriously, and it’s different for each person. “We treat the cancer, but I see the person behind all this. I don’t see the cancer when I talk to them, because I know that they don’t want to be identified as that. To me, it’s very important to treat the person behind all this.”

As she explains, they need to be able to open up and ask any questions. “I know some are afraid to ask questions about death and dying, about prognosis and all that, but I always tell myself, if they have the guts to ask, I can’t hide anything. When they ask, it’s because they are ready for the answer.”

Hope for patients in the future facing an ovarian cancer diagnosis

Four-and-a-half-years after this cancer journey started, Jen remains cancer-free. There have been some bumps in the road, including with her breast reconstruction surgery — a process that continues. She’s even offered hope and guidance to others through the blog she started, Jenesis, which has also been therapeutic for her.

“At this point, with no evidence of disease, the risk of recurrence is quite low. Dr. Faught estimated my risk of recurrence to be less than 10%. I almost cried when he said that.”

— Jen Hollington

In November 2024, she reached a significant milestone when doctors recommended she come off the PARP inhibitor drug, which suppresses the growth of cancerous ovarian tumours. “There’s no evidence that staying on the drug would have a long-term benefit beyond two years,” explains Dr. Faught.

It was a challenging decision for Jen, as there was comfort in knowing she was taking this drug and doing well. “At this point, with no evidence of disease, the risk of recurrence is quite low. Dr. Faught estimated my risk of recurrence to be less than 10%. I almost cried when he said that, remembering that he had told me in August 2020 that the risk of recurrence in ovarian cancer is about 80%,” shares Jen.

According to Dr. Le, there is new hope on the horizon for patients with ovarian cancers. “We are embarking on a new program at The Ottawa Hospital to advance the care and improve survivals for ovarian cancer patients in the form of HIPEC treatment. This involves administering heated chemotherapy solution right into the abdominal cavity at the time of surgery for their cancers. This strategy has been shown to significantly improve the survival for patients with ovarian cancer in selected cases.”

While more and more centres are adopting this therapy, The Ottawa Hospital would be only the second hospital in Ontario to provide it to patients. It’s new advancements like this one that give patients like Jen hope for more effective treatment options and better survival.

As Jen moves forward, she embraces parts of life that she may not have noticed before. “Special moments that once may have seemed mundane have become clearer and brighter as I live each day, grateful that I am still here.”

Categories: Cancer, Cancer, Cancer, Patient Care, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research

Published: November 2024

The pace at which medical advancements are taking place in the field of immunotherapy is staggering. Immunotherapy harnesses a patient’s own immune system to attack their cancer, and The Ottawa Hospital is at the forefront of research in this area — from the development of new therapies to clinicals trials. In fact, our hospital hosts BioCanRx, a national network for immunotherapy research and has pioneered a number of unique immunotherapies made directly of cells and viruses. These groundbreaking immunotherapies, developed right here, are pushing the boundaries of medicine and transforming patient care.

“The field of oncology is like a hurricane of clinical trials. Every six months now, we are trying to implement practice-changing data or chase promising data.”

— Dr. Michael Ong

Unlike traditional treatments like chemotherapy, immunotherapy can adapt to a patient’s cancer, which can lead to improvements that can last years — even after the patient has stopped treatment.

For Dr. Michael Ong, a medical oncologist and clinical investigator at The Ottawa Hospital, it’s reassuring to see the combination of incredible progress and long-term success for patients during his career. “The field of oncology is like a hurricane of clinical trials. Every six months now, we are trying to implement practice-changing data or chase promising data.”

The survival rates for metastatic melanoma, for example, have gone from only 20% surviving one year to 50% not only surviving 10 years, but also being both cancer-free and treatment-free. This is thanks to immunotherapy.

Immunotherapy shows promise for bladder cancers

Now, experts like Dr. Ong are asking what other cancers can be treated with immunotherapy and how to harness its full potential. “Over the years, we’ve been doing melanoma surgery for those who are high risk, and then treating with immunotherapy after surgery. But it turns out immunotherapy works better before surgery happens, because the immune system can be better trained against the cancer when there’s more cancer present,” explains Dr. Ong.

That means treating with immunotherapy first, and envisioning a future where surgery could one day be unnecessary. This would be a huge improvement for patients’ quality of life.

Recently, the results of a clinical trial led by Dr. Ong at The Ottawa Hospital as part of a multinational effort were presented at a conference in Barcelona, Spain. In this trial, chemotherapy and immunotherapy were prescribed before surgery in patients with bladder cancer. The group that had immunotherapy prior to surgery had a lower rate of cancer recurrence and higher cure rate, and it is now considered standard of care to offer pre-operative immunotherapy.

“It’s so exciting to have recruited patients to this trial and contributed to this global effort that ultimately improved how we treat our patients with bladder cancer,” explains Dr. Ong.

The next generation of trials may look at whether there is a need to remove a patient’s bladder if they are super responders. “Not everyone will get away without surgery, but even if some patients can avoid it, then it’s a huge advancement. We are talking about complete response rates from pre-operative treatment that are now exceeding 50% in bladder cancer,” says Dr. Ong. “So, by the time of surgery, we’re not even seeing any more cancer cells. That begs the question, ‘Do we need to take out the bladder’.”

The fact that each person’s cancer is unique adds to the complexity of the disease and treatment. But the potential impact of immunotherapy is reaching even farther.

What is prostate cancer?

Prostate cancer is a type of cancer that can develop in the prostate — a small, walnut-shaped gland in the male reproductive system that produces seminal fluid.

Learn More

How some prostate cancer patients may benefit

There have previously been significant efforts to evaluate if immunotherapy works in patients with prostate cancer. Multiple phase-three prostate cancer clinical trials have had largely disappointing results. However, within every one of these trials, there were a small proportion of patients who benefitted, and it shows that 3 out of 100 patients can actually benefit significantly from immunotherapy.

It has taken time and more data to understand who these patients were, but it has come down to something called mismatch repair deficiency, which seems to be the most promising way to identify patients that will respond to immunotherapy. “Normally when cancer cells copy their DNA, mistakes (or mismatches) in copying happen. The mismatch repair system will normally catch and fix those errors. But if this repair system is deficient or faulty, these mistakes are tolerated and DNA mutations accumulate rapidly,” says Dr. Ong.

Cancers generally become more aggressive when more mutations accumulate. “It turns out, however, that these ‘ugly’ mutated cancers are actually very sensitive to immunotherapy,” according to Dr. Ong.

That’s incredible news for a small but specific group of patients with prostate cancer, like Larry Trickey.

Stage 4 prostate cancer diagnosis

Larry Trickey, a retired computer specialist, was diagnosed with a highly aggressive prostate cancer in 2022. His scans showed the cancer had spread to the bladder and pelvis. It was the height of the pandemic, adding to the stress, and surgery was not possible. Initially, he began standard hormone treatment, then his oncologist, Dr. Dominick Bossé, suggested he enroll in a study that involved genomic testing of his tumour and access to a new treatment called a PARP inhibitor.

“When Mr. Trickey and his wife walked into my office with determination and hope, they were deeply supportive of one another and committed to finding the best path forward,” explains Dr. Bossé. “As always with research, the addition of a new form of care on top of standard treatment could make it more challenging to tolerate, but may also uncover new ways to treat cancer efficiently. Mr. Trickey was willing to take that risk.”

While initially Larry had benefit from the treatment, the effect was relatively short-lived, with the cancer worsening in 2023. He then received some radiation treatment and in a surprising turn of events, the radiation triggered an abscopal effect — a very rare phenomenon where the immune system kicks in to fight cancer after radiation releases.

“It was a remarkable moment. Mr. Trickey put his trust in me to hold off on further treatments while he benefited from this abscopal effect and until the cancer showed signs of progression, with the hope of enrolling him in an immunotherapy trial as our next option,” says Dr. Bossé.

“The entire team rallied together — the research team, radiology, oncology — to get him promptly into that trial."

— Dr. Dominick Bossé

Clinical trial led by Dr. Ong

Within months, Larry’s condition started to deteriorate and that’s when Dr. Bossé said it was time to see if he could enroll in a clinical trial that Dr. Ong was running. “The entire team rallied together — the research team, radiology, oncology — to get him promptly into that trial. Despite the alarming news of progression, Mr. Trickey agreed to multiple tests for the trial eligibility, which he met just in time, hours only before the trial closed.”

Larry remembers the call vividly. “It was around suppertime when Dr. Bossé called, and he seemed to be very ecstatic about one of the mutations I had,” remembers Larry. “There was a study looking for patients with that mutation. He was so excited when he saw the results and what it could mean for me.”

Hundreds of patients in Canada have been enrolled in this study over the last five years, but Larry was the last one accepted before the trial completed.

“It was kind of like winning the lottery to have that mutation. I was very lucky that it allowed me to get into this more aggressive study. If it was successful, it would really make a huge difference,” says Larry.

And Larry needed a win because by this time he had multiple metastases, including one in his left shoulder that was progressively weakening his arm. His stomach was bloated, and he was in pain because of the size of the tumour on his prostate and the difficulty of having bowel movements.

“Things were getting desperate for me. My son and his wife were expecting their first child around Christmas, and I didn’t know if I would ever get to meet my first grandchild.”

Astonishing results from immunotherapy clinical trial

By mid-February 2024, Larry started on the PC-BETS study, with the Canadian Cancer Trials Group, for which Dr. Ong is a national co-chair. The results were astounding, and his condition improved very quickly after receiving two types of immunotherapies in combination.

"The cancer just melted away."

— Dr. Michael Ong

“The cancer just melted away. His PSA (prostate-specific antigen) in February 2024 before we started the trial was high. By April, his PSA was undetectable, and it’s stayed undetectable. The scans in July 2024 showed only a small residual nodule on the left adrenal gland. All the other sites of cancer have disappeared on his scans, and by the next scan, it’ll hopefully all be gone,” explains Dr. Ong.

To put this in perspective, a few cycles of chemotherapy would have maintained his life, but would not have improved it in the end. This clinical trial truly changed Larry’s life.

"If it wasn't for the trial, for sure, I don't think I'd be here now."

— Larry Trickey

Larry will continue with monthly immunotherapy treatment, but Dr. Ong says for how long is something that is also still being studied. “There’s an open question with immunotherapy right now to understand how long we need to deliver these treatments even when the scans normalize. That doesn’t mean every last cancer cell is gone. There are currently studies trying to address that.”

Today, the 69-year-old is enjoying every moment as a grandfather, and now he’s optimistic he’ll be able to celebrate that special milestone of his grandson’s first birthday. He’s also gaining his strength back, little by little, and he’s got movement back in his left arm. “If it wasn’t for the trial, for sure, I don’t think I’d be here now.”

He and his wife are deeply grateful to the cancer care team who have been with them every step of the way. “The nursing team honestly feels like family, especially Rayelle Richard, she’s really terrific. She gives me my infusions and is my contact to Dr. Bossé and Dr. Ong. It is such a supportive team at the Cancer Centre.”

What’s next in the field of immunotherapy?

For Dr. Ong, the goal is to find the right fit of treatment for each patient — it’s about individual analysis for each prostate cancer patient.

He also points to the importance of having access to things like The Ottawa Hospital’s molecular lab, funded by donors, which allows our scientists to do this kind of specialized testing and to provide much more personalization of care to patients. “We need to be at the forefront and test our patients for those mismatch repair alterations and get them immunotherapy when indicated,” says Dr. Ong. “That will be a significant advancement and will benefit more patients like Larry.”

Admittedly, the field is complex and moving at a rapid pace. Since he entered the medical oncology field 15 years ago, the change has been remarkable.

“I was a little bit concerned at that time that I would only ever be just delivering chemotherapy and never having a big impact. I was clearly wrong. Today, we’re seeing this totally new technology called antibody-drug conjugates that is revolutionizing bladder cancer treatment. They target the cancer specifically and then deliver high potency chemotherapy inside the cancer cells and that’s the huge advance of bladder cancer right now when combined with immunotherapy.”

Next is to bring this success to other patients with different types of cancers. The way to that will be through more cutting-edge research and clinical trials.

The Ottawa Hospital is also leading the way in research to develop and manufacture new cancer immunotherapies. For example, laboratory scientists like Drs. John Bell and Carolina Ilkow are developing biotherapies that use cells, genes and viruses to unleash an immune attack against cancer cells. They worked with clinician scientist Dr. Natasha Kekre and others to develop the first made-in-Canada CAR-T cell therapy. Other clinician researchers, like Dr. Alissa Visram and Dr. Rebecca Auer, are also developing new cancer immunotherapies and working to bring these to patients. This kind of research is fuelled by core facilities and platforms like The Ottawa Hospital’s Biotherapeutics Manufacturing Centre as well as networks like BioCanRx.

Categories: Cancer, Immunotherapy

Published: September 2024

As the 100th anniversary of the Civic Campus inches closer — marking a century of care and medical breakthroughs — plans continue for the next 100 years of healthcare in our region. The final designs of the new hospital campus will come together in the next year. During this design phase, patients, leaders and staff at The Ottawa Hospital, Indigenous partners, and members of the community are all helping to refine the details of this new state-of-the-art health and research facility.

And while designs are finalized for the new hospital, construction of the parking garage to support the new campus is well underway.

Building a new hospital is a once-in-a-lifetime opportunity and it’s an opportunity that has business leaders, families, foundations, and many other community members stepping forward to support the $500-million Campaign to Create Tomorrow, which has raised an incredible $336-million to date in the region’s largest fundraising initiative.

Designing state-of-the-art operating rooms

The new campus will increase The Ottawa Hospital’s number of operating rooms (ORs) to help meet projected volume increases for surgeries in the future. These state-of-the-art ORs will be where some of the most life-changing care is delivered. 

“It will enhance the patient experience and work efficiencies."

– Lisa Young

According to Lisa Young, Senior Planning Project Manager at The Ottawa Hospital, the functionality of that space will be key to accommodating not only more procedures, but also new equipment and technology. “It will enhance the patient experience and work efficiencies. We’re also focusing on the function of what the teams providing care do within these spaces, rather than the physical form of the building.”

Optimizing workflow in and around the ORs

Enhancements will include a bay of ‘block rooms’ where pre-surgery preparation can take place outside the main OR itself. These rooms can be used for patients receiving regional anesthesia before entering for surgery, helping reduce potential delays, and making the best use of time in the OR for both patients and care teams.

Dr. Sundaresan, Head of the Department of Surgery, and a clinical thoracic surgeon, explains that location of the ORs is vital for optimizing workflow, especially during critical moments. “The ORs at the new campus will be located next to the interventional radiology suites, which is exciting,” he says.

“When the new campus opens, we’ll have one of the most state-of-the-art surgical facilities in Canada, if not North America.”

– Dr. Sudhir Sundaresan

Interventional radiology is a medical specialty that performs minimally invasive treatments using x-ray imaging to guide small instruments, like catheters, through blood vessels and organs to treat a variety of diseases. “In the event there’s a complication during that procedure, sometimes the patient must go urgently into an OR. Now, the patient won’t have to be moved to another location to access the OR — it will be right there.”

New and emerging technologies will also enhance patient care. “When the new campus opens, we’ll have one of the most state-of-the-art surgical facilities in Canada, if not North America,” says Dr. Sundaresan. “Taking advantage of technology that will help us take surgery to the next level is one of the most exciting areas for development in the future.”

New neurosurgery rooms will come with innovative technology

Teams are also exploring innovative technologies such as an intraoperative MRI machine that captures real-time images of the brain during surgery.

Built on a rail system in the ceiling and considered a gold standard for procedures like brain tumor surgery, this MRI machine would be housed within the operating theatre, but just outside the operating room itself. If a patient needs imaging during a procedure, a door is opened, and the MRI can slide in on rails without having to relocate the patient with minimal disruption.

One of the goals in current design plans is for all ORs to have full audio video (AV) integration to help accommodate minimally invasive surgeries and for teaching purposes.

“Having AV integration in each suite provides more flexibility for patients,” Lisa explains. “We currently have specific rooms at each campus that can accommodate this, but having monitors and the ability to connect cameras in all of the ORs will be a new baseline of care that we could provide at the new campus.”

Digital solutions for a proactive approach to care

There are plenty of opportunities for technology to make a positive impact on patient care and experience.

“We’re striving to build on the digital experiences that people have in other areas of their lives to enhance the healthcare services we provide.”

– Glen Kearns

“We’re striving to build on the digital experiences that people have in other areas of their lives to enhance the healthcare services we provide,” says Glen Kearns, Executive Vice President and Chief Information Officer at The Ottawa Hospital. “Whether it’s inpatient care, preparing a patient before they even visit the hospital or following up with them at home, technology can offer solutions and more seamless care.”

Our hospital is also exploring the possibility of remote or virtual admissions to better support seamless inpatient and at-home care. The goal is to launch at the current campuses in advance, so it’s operationally ready on day one at the new campus.

“We want to leverage technology to reduce in-hospital admissions, wait times, and improve how patients interact with our teams.”

– Mathieu LeBreton

“We want to leverage technology to reduce in-hospital admissions, wait times, and improve how patients interact with our teams,” says Mathieu LeBreton, Senior Project Manager and Digital Experience Lead. “Ideally, we’ll have technology that enables and enhances workflow and reduces workflow burden on staff to improve their day-to-day experience.”

Mathieu adds that technology will be integrated to improve the experience of patients who are admitted. All rooms will be single patient and will have digital access so patients can stay connected with care providers and loved ones and access their health information, appointments, and entertainment. Throughout the new campus, technology can also help patients and visitors navigate the hospital.

The role of AI

In recent years, artificial intelligence (AI) has made great strides in becoming a useful and adaptable tool in the workplace. Our Digital Solutions team is already looking at innovative ways to harness the power of AI.

The Ottawa Hospital recently announced a trial of Dragon Ambient eXperience (DAX) Copilot which uses ambient, conversational, and generative AI to create draft clinical notes during patient appointments. With patient consent, it securely records and creates medical notes for the physician to review and approve. The Ottawa Hospital is the first in Canada to trial this innovative solution aimed at reducing physician burnout and time spent on administrative tasks and allowing physicians to spend more time interacting with patients providing care.

A hub for biotherapeutics research

The Ottawa Hospital is already a global research powerhouse, and the new campus will help take our research to unprecedented heights.

The expansion of the Biotherapeutics Manufacturing Centre (BMC) at the new campus will boost our capacity to develop and manufacture lifesaving biotherapeutics, including vaccines, gene therapies, and cell therapies right here in Ottawa.

Over the last 15 years, researchers at our hospital have led more than 20 world-first clinical trials using biotherapeutics such as stem cells, cancer-fighting viruses, and cellular immunotherapy. These trials are possible because the BMC is a specialized clean-room facility that develops and manufactures novel therapeutic products incorporating cells, genes, viruses, and other biological materials.

The BMC is the most experienced and successful facility of its kind in Canada, with more than 40 full-time staff currently based at the General Campus. It consistently operates at full capacity and is booked far in advance with both academic and industry clients — making this expansion vitally needed to further push the boundaries of research and bring more treatment options to patients.

Looking ahead to the next century of healthcare in Ottawa

When the Civic Campus first opened 100 years ago, the world had just emerged from a pandemic and the new hospital was considered the most modern in North America. Now, we find history repeating itself. We are witnessing the community rally together behind a historic campaign that will take research to the next level and help support the most modern and cutting-edge hospital campus in the country. This will transform the patient experience for generations to come, and we invite you to join us.

Together, we are creating tomorrow for generations to come.

Categories: Biotherapeutics, Creating Tomorrow, Innovation and Technology, Neuro, New Campus Development, Technology, Trauma

Published: May 2024

Emmy Cogan was extremely tiny when she arrived in this world, but the impact of her birth was big. Born at 23 weeks gestation, she weighed only 515 grams — that’s just over one pound. Emmy was one of nine babies enrolled in a world-first cell therapy trial to heal the lungs of preemies and was the first in North America to receive the therapy. Now, that promising trial is ready for its next phase.

Her early arrival happened not long after first-time parents Alicia Racine and Mike Cogan returned from a trip to Hawaii. Alicia was back at work as a 911 operator for the Ottawa Police when her water broke.

“My sister works with me, and she brought me to The Ottawa Hospital’s General Campus. I was in a lot of pain, and I wasn’t too sure what was going on. And then we found out that it was contractions, and I started dilating,” explains Alicia.

The baby would hold on for another six days before being born on February 20, 2023. Those few extra days in the womb were critical to give Emmy a chance at life. “It changed the game entirely for us and her. She was able to be intubated, and she just started fighting from that moment on,” explains Mike.

Health challenges lie ahead

Initially, Emmy was cared for in The Ottawa Hospital’s Neonatal Intensive Care Unit (NICU), followed by 10 days at CHEO before returning to our hospital.

Emmy’s first month of life faced many challenges, including a duct between her heart and lungs that wouldn’t close, gastro-intestinal issues causing her to become septic, and concerns of a blood infection. Once Emmy got through those life-threatening issues, she was extubated and put on a high-flow oxygen. “We got to hold her for the first time at that point and my parents were able to be there for that, which was really nice,” says Mike.

Emmy also developed bronchopulmonary dysplasia (BPD). This is a condition known to affect many preemies. Because these infants are born so prematurely, their tiny lungs are underdeveloped and require extra oxygen to help them breathe properly. But giving this oxygen — critical for survival — can damage their tiny lungs. It’s like starting life with emphysema.

The devastating impact of BPD

In Canada, 1,000 babies are diagnosed with BPD every year. That number jumps to approximately 150,000 worldwide. Often, babies with BPD develop other chronic lung diseases, such as asthma, and may require prolonged oxygen and ventilation.

Additionally, they have a high rate of hospital readmissions in the first two years of life. Babies with BPD often have problems in other organs as well, such as the brain or eyes. There is currently no cure, but this world-first clinical trial led by Dr. Bernard Thébaud, a senior scientist and neonatologist, hopes to change that.

Two decades ago, Dr. Thébaud’s team discovered that stem cells from the umbilical cord — known as mesenchymal stromal cells (MSCs) — could heal lung injury and prevent BPD in newborn rodents. Since then, the team has worked tirelessly, here at home and collaborating with other scientists around the world, to bring this novel therapy to babies and their families through clinical trials. While other trials have tested MSCs for treatment of BPD in premature babies, no other group has used MSCs taken from the whole umbilical cord and processed them the way that Dr. Thébaud’s team has. 

What is bronchopulmonary dysplasia?

Bronchopulmonary dysplasia — or BPD — is a chronic lung disease that most often occurs in premature or low-weight babies who have received supplemental oxygen or received mechanical ventilation for long periods.

Learn More

“In our rodent research, we’ve used stem cells isolated from the umbilical cords of healthy newborns to prevent lung injury or even to some degree regenerate the damaged lung,” says Dr. Thébaud. “We foresee that these stem cells, given during a certain time during the hospital stay of these babies, could prevent the progression of the disease.”

Shortly after Emmy’s birth, her parents met Chantal Horth, a clinical trial coordinator, and were introduced to Dr. Thébaud. “Chantal came to us and said Emmy qualified for the trial,” remembers Mike. “It sounded like a great opportunity.”

"Being a preemie, she’s going to have some health issues, and anything that could help her, we wanted to give her that extra shot."

— Alicia Racine

Saying ‘yes’ to a world-first clinical trial

The couple met with Dr. Thébaud, and he answered a long list of questions they had about the trial. “He’s a very personable guy, and it was very easy to talk to him. We trusted him. Being a preemie, she’s going to have some health issues, and anything that could help her, we wanted to give her that extra shot,” says Alicia.

To qualify for the trial, the premature babies — born at 23- or 24-weeks’ gestation at The Ottawa Hospital — had to be seven to 21 days old and treated in the NICU. They also had to require 35% oxygen. This level of oxygen puts them at 60-70% risk of developing BPD. Sunnybrook Health Sciences Centre recruited one baby, becoming the second site involved.

On March 3, 2023, at 11 days old, Emmy received an IV infusion of umbilical cord tissue grown from the donated cords of healthy newborns. It was a special moment for everyone involved. She was the first baby in North America to receive this kind of therapy.

"This is the first trial of its kind in the world, and what could be more rewarding than helping preemies?"

– Dr. Bernard Thébaud

“Dr. Thébaud administered the stem cells, and everyone clapped,” says Mike. “She will have follow-up appointments at different stages for two years, and then she’s going to be followed up by phone for 10 years.”

For Dr. Thébaud, it was a moment he and his team had dreamed about. “It was an exciting and huge milestone when that day arrived — after 20 years of work we were able to test this therapy for the first time in a patient. This is the first trial of its kind in the world and what could be more rewarding than helping preemies?”

The next step for this stem cell trial

Thanks to those nine tiny patients, including Emmy, recruitment for the Phase 1 trial is now complete. The purpose of this trial is to test the feasibility and safety of the stem cell therapy. The next phase will test safety as well as how effective it is.

"All the stars lined up to have her be a part of that little piece of history — something that could impact babies like her in the future.”

– Alicia Racine

“Now we can determine if this therapy will make a difference in patients,” explains Dr. Thébaud. “There will be two groups in the next phase — one that will receive cells and one that will receive the placebo — it’s a randomized controlled trial. We’ll need 168 patients to determine if these stem cells make a difference.”

While babies for the first phase were recruited from NICUs at The Ottawa Hospital and Sunnybrook Health Sciences Centre, the next phase will be a multi-centre trial across the country. Dr. Thébaud hopes it will begin by the end of 2024 and it will take two years.

“Working with babies is, I think, the most beautiful job on Earth. Because they’re born, and they have all their life and all their potential in front of them. Our task is to give them a great jumpstart,” says Dr. Thébaud.

As for Emmy, she left the hospital five months after she was born, and while Mike and Alicia don’t know if the stem cells impacted her health, Emmy is doing well. “We don’t know what she would be like without it, but she’s awesome right now,” says Mike. “We felt very fortunate to be in the right place at the right time for our little girl.”

It’s something Alicia feels makes Emmy all the more unique. “All the stars lined up to have her be a part of that little piece of history — something that could impact babies like her in the future,” explains Alicia.

That’s certainly what Dr. Thébaud is hoping for. “It would change the way we care for premature babies. It’s my hope that these tiny patients have a chance to thrive, grow up, and have an impact on the world around them.”

Emmy doesn’t know she’s made history, but that’s ok. For now, she’s keeping her parents busy. She’s pulling herself up and will be walking in no time. She’s also been off oxygen since November 2023, giving her even more mobility. “It was really fun to have her free. We had a cordless baby for the first time! That was a big step when she didn’t need to rely on the oxygen anymore,” smiles Mike.

This Phase 1 trial is funded by the Stem Cell Network with in-kind matching funds from MDTB Cells GmbH. Dr. Thébaud’s research is also possible because of funding from the Ontario Institute for Regenerative Medicine, the Canadian Institutes of Health Research, The Ottawa Hospital Foundation, and the CHEO Foundation. 

Categories: Clinical Trials, NICU, Stem Cell

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?”

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.

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.”

Update February 2025:

In December 2024, Randy was diagnosed with AML leukemia and he continues to receive care at our hospital.

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

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

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.”

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.”

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.

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.

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

Categories: Strengthening Critical Services

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.

“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

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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.

“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.

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.

Categories: Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services

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.”

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.”

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.”

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

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"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.

“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.”

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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.

Strengthening critical services

The Ottawa Hospital is home to one of the best-equipped cancer treatment centres and one of the most advanced cancer research programs in the country. Thanks to this expertise and support from the community, we're seeing breakthroughs that a decade ago seemed impossible.

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 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

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.

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.

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.

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?’

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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Kicking back: Chantal Theriault’s journey with Parkinson’s

It started with tremors in her hand

What is Parkinson’s disease?

All about Parkinson's

The global impact of Parkinson’s research

Director of the Parkinson's Disease and Movement Disorders Clinic

Building a new neuroscience centre

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A CANCER JOURNEY

A journey through two cancers and the BRCA gene mutation

A stage 3 ovarian cancer diagnosis

The impact of research on patients facing ovarian cancer

Read our Q&A with Dr. Tien Le

Testing shows the BRCA2 gene mutation

Optimizing her chances for the future

Then another cancer diagnosis

The overarching support along the way

Hope for patients in the future facing an ovarian cancer diagnosis

Immunotherapy shows promise for bladder cancers

What is prostate cancer?

How some prostate cancer patients may benefit

Stage 4 prostate cancer diagnosis

Clinical trial led by Dr. Ong

Astonishing results from immunotherapy clinical trial

What’s next in the field of immunotherapy?

Designing state-of-the-art operating rooms

Optimizing workflow in and around the ORs

New neurosurgery rooms will come with innovative technology

Digital solutions for a proactive approach to care

The role of AI

A hub for biotherapeutics research

Looking ahead to the next century of healthcare in Ottawa

Health challenges lie ahead

The devastating impact of BPD

What is bronchopulmonary dysplasia?

Saying ‘yes’ to a world-first clinical trial

The next step for this stem cell trial

A CANCER JOURNEY

Randy McElligott’s unusual reaction to his cancer diagnosis

Becoming symptomatic for multiple myeloma

Access to clinical trials at The Ottawa Hospital

Maintaining a positive attitude

Alarm bells would soon sound

Faced with a rare autoimmune disease

What is anti-GBM disease?

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

Care for dialysis patients across eastern Ontario and beyond

Awaiting a kidney transplant

Shocking discovery of a brain tumour plus an MS diagnosis

Read our Q&A with Dr. Fahad Alkherayf

A plan for specialized brain surgery

Not just saving a life, but also maintaining quality of life

Looking forward

What is rheumatoid arthritis?

Hip replacement surgery by a specialized team

Research aims to improve hip surgery

Read our Q&A with Dr. Beaulé

Getting her life back

Strengthening critical services

My way of coping with a breast cancer diagnosis

The specialized team ready to handle my care

Devastation when cancer metastasized

My body was riddled with cancer

Finally, there was some good news

Little did we know what would come next

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