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.”

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

Categories: Patient Care

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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Published: June 2023

When someone suffers a stroke, the results can be devastating, from severe debilitation to death. An intracerebral hemorrhage (ICH) stroke, more commonly known as a bleeding stroke, is the most serious form of this disease. However, after decades with little in the way of treatment advancements, a global research trial being led in Canada by The Ottawa Hospital could mean an effective treatment is finally on the horizon.

The Ottawa Hospital is recognized worldwide for its expertise in neuroscience, and we’ve made significant strides in addressing today’s most pressing challenges in this area of medicine — including our international, groundbreaking work in stroke. In fact, we are leading the way in how stroke care is delivered in Canada.

World-leading research

Intracerebral hemorrhage is the most lethal and disabling type of stroke, but researchers at our hospital are leading the Canadian site of a promising research trial that could change the way we treat these bleeding strokes.

“The ICH stroke makes up roughly a quarter of strokes. It’s more common as people's ages go up. In Canada, we have an aging population, so we're seeing more and more cerebral hemorrhage.”

— Dr. Dar Dowlatshahi

Dr. Dar Dowlatshahi is a stroke neurologist and senior scientist in the neuroscience program at our hospital. He is leading the Canadian site of the research trial and hopes it will change the way we treat the deadliest and least treatable form of stroke. “The ICH stroke makes up roughly a quarter of strokes. It’s more common as people age. In Canada, we have an aging population, so we’re seeing more and more cerebral hemorrhage,” explains Dr. Dowlatshahi.

All about stroke

Stroke is a disease that occurs within the arteries — also called blood vessels — that are connected to and within the brain. These arteries carry vital nutrients and oxygen to the brain. A stroke occurs when one of these arteries is either blocked by a clot or bursts, preventing the oxygen and nutrients from reaching the brain and causing the artery and brain cells to die.

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When a stroke code is called

The first thing to happen when someone experiences a stroke is they lose an ability ─ and it happens fast. This is the case whether it’s an ischemic stroke (blood clot) or a bleeding stroke. “For example, they’ll suddenly not be able to move an arm or leg, you’ll see their face droop, or they’ll lose the ability to speak. They may lose vision, or they may also collapse to the floor,” explains Dr. Dowlatshahi.

“For any type of stroke, we use the acronym FAST. If you suddenly see a person’s face get droopy, that’s the F. Ask them to lift their arm, and if they can’t, that’s the A, if their speech changes, that’s the S, and the T in FAST is for time. If you see these symptoms, you need to call 911 immediately.”

How can you check if someone is having a stroke?

If you suspect someone is having a stroke, experts recommend using the F.A.S.T. method.

Face: Ask them to smile. Look for if one side droops.
Arms: Ask them to raise their arms. Look for if one arm doesn’t lift as high or at all.
Speech: Ask them to speak. Look for if their words are slurred or seem unusual.
Time: If any of these signs appear, call 911 right away, and note when the first sign appeared.

In the Champlain region, which includes Renfrew County, Ottawa, North Lanark, North Grenville, Stormont, Dundas, and Glengarry, as well as Prescott-Russell, the rapid response stroke system is excellent, according to Dr. Dowlatshahi. “When you call 911, they can identify the correct stroke hospital to take the patient to, and they call ahead. In the Champlain region, that hospital would be the Civic Campus of The Ottawa Hospital. Our stroke team knows they’re coming, and we’re ready to receive the individual.”

When it’s a stroke where a blood clot has formed in the vessel, there have been significant advancements in care when the patient arrives at the Emergency Department. Those treatments include new clot-busting medications or pulling the clots out with new technology.

However, when the vessel bursts and bleeds into the brain, it’s a more devastating stroke — one that occurs every five minutes in Canada. About 80% of people who have this type of stroke are permanently disabled, while about 40% don’t survive past the first month.

“And nothing’s been successful in the past 20 years as far as treatment, except for bringing down the blood pressure a little bit. That helps, but not in a major way,” explains Dr. Dowlatshahi. “So, we’ve been working very hard over the last decade here, and with our international colleagues, to come up with an approach to treat this type of stroke.

Global intracerebral hemorrhage stroke research trial may lead to better outcomes

Now, a global research trial being led in Canada by our hospital could result in the first drug treatment for ICH stroke patients.

The trial is called FASTEST, referring to the importance of treating a patient who has a bleeding stroke as fast as possible — in under two hours. “It’s a very aggressive, fast trial, and we give the patient a compound that helps stop the bleeding. This compound is called factor VII,” says Dr. Dowlatshahi.

“When a vessel bursts in the brain, it starts squishing that brain and damaging it, and you must get to it as fast as possible to stop the bleeding.”

— Dr. Dar Dowlatshahi

Factor VII is one of many clotting factors naturally produced by our bodies. As Dr. Dowlatshahi explains, the drug in the trial is a synthesized version of factor VII, and time is crucial. “The reason we want to act fast is, if you can imagine you have a pipe that bursts and you’re getting water everywhere, what you’re trying to do is seal the pipe before all the water comes out and damages everything around it,” he says. “That analogy holds all too true for the brain because it’s a closed compartment. It’s got a skull around it. When a vessel bursts in the brain, it starts squishing that brain and damaging it, and you must get to it as fast as possible to stop the bleeding.”

When a patient with an ICH stroke arrives at The Ottawa Hospital, the trial protocol allows the stroke team to access this new therapy. It’s randomized testing, so neither patients nor the care team know whether the actual drug or the placebo was administered.

In 2021, the trial launched. The Ottawa Hospital was the first centre in Canada and enrolled the first two patients worldwide. “Typically, you would think the U.S. would get the first patient because they’re bigger, they have more centres, but it was actually us — it was here in Canada,” says Dr. Dowlatshahi. To date, six countries are participating in this trial including Canada, the United States, the United Kingdom, Spain, Germany, and Japan.

What are the early indicators?

While the testing is randomized, there are early indicators that give reason to be optimistic about what the results of this trial could mean for stroke patients in the future.

In fact, Dr. Dowlatshahi cites the first patient enrolled was an 80-year-old woman who arrived at the hospital in 2021 suffering from a life-threatening stroke. She was enrolled in the study, and less than a week later, she walked out of the hospital. That’s not something this stroke specialist typically witnesses in this type of patient. “She did amazing to the point that she returned completely back to normal,” he explains. “We also got the second patient in the world — both did spectacularly. We’re now up to six patients in Ottawa.”

“If you are in Ottawa and suffer this type of stroke, you have a 50% chance of getting something that nobody else can get — something that may very well be the future standard of care.”

– Dr. Dar Dowlatshahi

Globally, 172 people have been enrolled in the trial with an eventual target of 860. While this is a randomized, blinded trial with final results still to come, Dr. Dowlatshahi believes this treatment could be a game changer for stroke patients after decades of little in the way of options. And for those living in the Ottawa region, they get access to something few Canadians have at this stage. “If you’re somewhere where this trial is not available, you would go to the emergency department, get your blood pressure lowered, and receive the best of the standard care available,” explains Dr. Dowlatshahi. “However, if you are in Ottawa and suffer this type of stroke, you have a 50% chance of getting something nobody else can get — something that may very well be the future standard of care.”

“This research means a type of stroke that affects one out of four, that is currently the most lethal and the most disabling type of stroke, could become completely treatable.”

– Dr. Dar Dowlatshahi

And while the research teams continue to recruit more patients into the trial, not only here at The Ottawa Hospital, but also at all the other sites around the world, there is optimism that this could be the long-awaited breakthrough for patients who suffer from ICH stroke. “This research means a type of stroke that affects one out of four, that is currently the most lethal and the most disabling type of stroke, could become completely treatable.”

Listen to episode 85 of Pulse Podcast for our conversation with Dr. Dar Dowlatshahi.

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Categories: Creating Tomorrow, Creating Tomorrow, Creating Tomorrow, Neuro

Published: May 2023

Sometimes you meet someone and wonder what drew you together. That’s what happened when Holly Wagg met Lynne Strickland in Patagonia, Chile. Both women lived in Ottawa, but it was a serendipitous meeting almost 10,000 kms from home where they ended up as bunk mates while on an expedition. Soon, they would discover a special bond between them — they both had loved ones who faced leukemia, and while their journeys were different, their stories connected in an unexpected way.

The story begins in the fall of 2015 when Holly’s wife, Julia Wagg, started to feel inexplicably tired. At the time, the Director of Talent Management at Hydro Ottawa was also teaching a course at Carleton’s Sprott School of Business, and juggling life with three children — she had a lot on her plate. But then one day she noticed blood in her mouth and decided she’d better make a dental appointment. By early December, symptoms escalated. “Julia woke up at 2 or 3 a.m. one night and said, ‘I need to go to the hospital.’ She could hardly breathe because she had crushing chest pain,” remembers Holly.

World-leading research

Groundbreaking research like CAR T-cell therapy is bringing hope to patients and their families ─ families like Holly’s and Lynne’s. Our Campaign to Create Tomorrow will take research to unprecedented heights and help bring even more breakthroughs to patients, faster than ever.

That first visit to the hospital didn’t determine any clear signs of what might be wrong, but Julia’s fatigue persisted into the new year. The family had big plans to travel to Africa, and Julia was determined to go. Holly was leaving early to climb Mount Kilimanjaro, then Julia and their youngest daughter, Addison, would follow two weeks later.

Leukemia diagnosis heard around the world

As Holly summitted the mountain, back home Julia received devastating news. “While I had been up there, she had taken herself to the hospital one morning, and they told her she wasn’t leaving — she had leukemia,” says Holly. “Julia waited four days to tell me so I could finish my climb. When I found out, I raced back as soon as I could.”

The life Holly returned to was much different than the one she had left. Julia was immediately put on a chemotherapy cocktail — 24/7. She remained hospitalized for three to four weeks and when Holly was finally able to visit her in the hospital, she says the reunion was heartbreaking and devastating. “Julia was going through this fight of her life and was having so many complications from chemo. I was researching and I knew what we were facing.”

The couple learned Julia had the acute myeloid leukemia mutation known as FLT3. It was aggressive. “This is like driving your car and slamming your foot down on a gas pedal — that’s how fast the cancer was reproducing. Most people have a 10% chance of surviving five years,” explains Holly. “So, my mission became to make whatever time we had left the best possible time.”

By the second round of chemo and after 12 weeks as an in-patient, Julia was in remission and was eligible for a stem cell transplant. Her sister was a match, and three weeks later, in May 2016, Julia received the transplant of her sister’s stem cells — and the hope for more time with her family.

However, Julia faced one complication after another and spent the better part of eight months in the hospital. “Her whole team of doctors and nurses up on 5 West and the Bone Marrow Transplant team at The Ottawa Hospital were amazing,” remembers Holly. “She left hospital in December with limited mobility, but started strength training and eventually we had her skiing. We learned how to cross-country ski.”

Making the most of their precious time left together

The family had what Holly describes as the perfect three months of a cancer-free life. During Julia’s cancer care, she never made promises to her children, but there was one exception. She told Addison she would be there to celebrate her sixth birthday — things were going well. A big birthday party was planned with a fairy theme and all their friends came together to celebrate. “It was beautiful and joyous,” remembers Holly.

But after the party, Julia collapsed on the floor in agony from extreme bone pain. By the next day, the same thing happened, and she went to the hospital. The blood work looked normal, so they did a bone marrow biopsy. When Holly and Julia returned to the hospital for the results, Julia couldn’t walk.

Julia’s cancer was back. The couple knew if a patient relapsed within 12 months following a stem-cell transplant, there’s no chance of a second transplant. It had only been 11 months.

Julia passed away in the ICU of The Ottawa Hospital a week-and-a-half later. “She had all the people who loved her around the bed that night. I brought Addi into the room, and I grabbed Harry Potter because that was the story we were reading at the time. As I was reading, Julia’s heartbeat started to decelerate. I wanted to stop, but I knew she needed to hear me. She needed to know we’re all okay,” recalls Holly. “Jules was surrounded by love, and she chose to let go during this beloved bedtime ritual.”

Meeting a ‘spitfire’ young researcher

Before Julia passed away at the age of 36, she and Holly had some difficult but honest conversations. During her lengthy time in hospital, Julia witnessed many things as a patient. As a patient at a teaching hospital, she met many rotations of residents, in both the physician and nursing programs. Julia often said yes to the residents who were taking blood for the first time, and she said yes to two doctors who performed their first bone marrow biopsies. She wanted to help.

“One of the physicians who cared for her was Dr. Natasha Kekre. She was a spitfire — she was young, and she was brilliant. She was looking to start a clinical trial at The Ottawa Hospital to offer breakthroughs in leukemia treatment using CAR T-cell therapies. Julia wanted to elevate that research.”

– Holly Wagg

Because of the aggressiveness of her cancer, she also interacted with many physicians who were also researchers. “Julia was very curious and asking them about their projects. One of the physicians who cared for her was Dr. Natasha Kekre. She was a spitfire — she was young, and she was brilliant. She was looking to start clinical trial at The Ottawa Hospital to offer breakthroughs in leukemia treatment using CAR T‑cell therapies. Julia wanted to elevate that research,” explains Holly.

Julia and Holly had read about CAR‑T and knew what the possibilities would mean for patients like Julia in the future. It was the first big game changer to leukemia treatment in more than 20 years. They had seen what was happening in the United States and believed patients in Canada should have access to it. “Being a part of research to improve that path for people going forward was very important to both of us, which is why, for us, that legacy was about making sure other families didn’t have to experience what we did. We wanted to be a part of that change,” says Holly.

What is CAR-T therapy?

CAR T-cell therapy involves removing the patient’s T-cells and genetically engineering them with a disarmed virus to produce synthetic molecules called “chimeric antigen receptors” (CAR). These new CAR T-cells are then injected back into the patient so they can target and attack the cancer.

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Julia’s legacy and her commitment to research

With that in mind, Julia decided to leave a gift in her will to support research at The Ottawa Hospital. Her legacy would live on. Holly has also committed to leaving a gift in her will to build on Julia’s wishes and to further fund research that was so important to both of them.

By 2019, The Ottawa Hospital became one of three centres in the province administering the Ontario CAR T‑cell Therapy program for adults — just the type of progress Julia would have wanted. The program meant the T‑cells could be collected from the patient here, then sent to the U.S. to be genetically engineered into CAR T‑cells. Those cells are returned to the hospital and injected back into the patient so they can target and attack the cancer. The challenge is that it’s only available for patients with a specific type of lymphoma and leukemia. Commercial CAR‑T therapy is also very expensive and time-consuming. The commercial cell manufacturing, testing, and shipping process can take up to eight weeks– time that many of the sickest patients don’t have.

What is a legacy gift or an estate gift?

Both terms refer to a donation to a charity made through your will or estate plans. These donations can take several forms, such as cash, securities, or even property.

That wasn’t good enough for people like Dr. Kekre – she wanted to develop a made-in-Canada solution. Today, she’s helping to lead a Canadian-first CAR T‑cell therapy clinical trial at our hospital. This opens the door to faster, less expensive, and more equitable CAR‑T treatment across Canada. It also provides a platform for the development of even better cellular immunotherapies that may work for more kinds of cancer. World-class research facilities at The Ottawa Hospital, such as the Biotherapeutics Manufacturing Centre, have played a key role in the development of this platform.

“It was amazing to get updates on the project because we found out that it was going to clinical trial and there were very positive early results,” says Holly. “And then I saw the first face of a trial participant — a man named Owen. Then I read Camille’s story. And that was an amazing one for me.”

A Canadian-first clinical trial gives lymphoma patient a third chance

Read Owen's Story

CAR-T clinical trial provides ‘one last shot’ for leukemia patient

Read Camille's Story

Making the connection

The impact of Julia’s forward thinking became even more personal when Holly had that chance meeting with a stranger in another hemisphere in February 2020. She and Lynne were both seeking adventure in Patagonia. For Holly, it was a big step — the first time she had travelled since Julia’s death. The two women bonded when they realized they had a special connection — Lynne’s daughter, Nicole Strickland, had been diagnosed with acute lymphoblastic leukemia in 2018 and treated at The Ottawa Hospital.

“We had that common kind of understanding of seeing a loved one go through leukemia, the challenges, and a stem cell transplant,” explains Lynne. “But then when Nikki relapsed, I remembered Holly had mentioned Julia’s legacy had gone to funding research into CAR‑T.”

Nicole was just 19 years old and in military college when she was diagnosed. At the time, she was stationed at CFB Petawawa for job experience with the helicopter squadron. She underwent chemotherapy treatment, but because her cancer was aggressive, her care team at The Ottawa Hospital recommended a stem cell transplant. Nicole’s sister was a 100% match. The stem cell transplant took place in September 2018, and then Nicole went into remission.

By the summer of 2021, Nicole was posted with a new unit in Halifax and getting routine blood work. That’s when she learned her cancer was back. But this time, she was introduced to immunotherapy, which she received in Halifax, followed by CAR‑T therapy — which meant returning to The Ottawa Hospital.

“There was a world of difference between CAR T‑cell therapy and the stem cell transplant,” explains Nicole. “I lost 40 pounds during the stem cell transplant. I couldn’t eat. I almost had to get a feeding tube at one point, which scared me. It took me about eight months to fully recover and then another year to get back into the gym. It was also mentally difficult. But with CAR‑T, I had energy, and my spirits were good. There were just a few days of feeling off and then I was back on my feet.”

How CAR T-cell therapy gave Nicole new hope

Nicole qualified for the Ontario CAR T‑cell Therapy program, which saw her T‑cells shipped to the U.S. to be genetically modified into CAR T‑cells. Once they were shipped back to The Ottawa Hospital, they were then infused into Nicole’s body.

“Unless you’ve been through what my family and I have been through, it’s hard to understand the depth that donating to a cause like that means. CAR-T gave me my life back — I’m just so grateful.”

– Nicole Strickland

Today, 18 months after her CAR‑T treatment, Nicole is now an operations officer and continuing her military career in Halifax and feeling stronger each day. She’s deeply grateful to people like Julia who had the forethought to invest in cancer research. “Unless you’ve been through what my family and I have been through, it’s hard to understand the depth that donating to a cause like that means. CAR‑T gave me my life back — I’m just so grateful.”

It’s those who support research that pave the way for patients like Nicole to have better outcomes. For Lynne, it’s also the work that’s came before breakthroughs like CAR-T that is just as important. “For Nikki’s care during the stem cell treatment, they had a plan, and that plan was because of the research and the investment made by others before CAR‑T was an option. It’s about bringing forth solutions that save not just one person’s life, but their whole family,” says Lynne.

“It’s about bringing forth solutions that save not just one person's life, but their whole family.”

– Lynne Strickland

For Holly to make that personal connection with Lynne and to see someone as young as Nicole have success is not something she ever expected. “As a donor, somebody who invests in research, I never expected to see any transformation in my lifetime. I’m willing to wait and be patient. But I never expected to see actual change to medical practice in my lifetime. And never mind did I expect to see it just a few short years after my wife’s death.”

And so, Julia’s legacy continues today, not only through her three children Robin, Brandin, and Addison, but also through the research she helped fund — research that is changing the course of cancer care. The more faces Holly connects back to the research and the more stories of survival she learns about, the more she witnesses Julia live on. “When you think about a legacy and about what you leave for others and how you shape a world — how much more powerful can that be knowing that in some way you’ve given other people an extra shot at life?”

Download episode #84 of Pulse Podcast to hear Holly Wagg talk about Julia's life and legacy.

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Categories: Cancer, Donors, Gift In Will, Immunotherapy

Published: March 2023

The search for the silver bullet for sepsis has been decades in the making. However, The Ottawa Hospital is taking a big step forward in the next phase of a world-first clinical trial using stem cells in patients with septic shock — not so much a silver bullet, but a seed that could lead to future innovative treatment options and impact millions of patients. The hope is to not only save more lives but also improve the quality of life of those who do survive this devastating illness.

Sepsis is caused by our own body’s response to infection. When that infection spreads through the blood stream and over-activates the immune and coagulation systems, it can cause the heart and other organs to fail. Sepsis is associated with a death rate from 20% to 40% and upwards from that, depending on the patient. Survivors of this devastating condition often have their quality of life impacted and often for the long term. Sepsis knows no borders and impacts people globally.

World-Leading Research

Each year, sepsis affects 49 million people worldwide. But researchers here at The Ottawa Hospital are working to make an impact with a world-first clinical trial exploring the use of mesenchymal stem cells to treat septic shock.

What is Sepsis?

Sepsis occurs when the body has an extreme, life-threatening response to an infection. The infection includes bacteria that enter the blood stream, triggering a chain reaction during which the patient’s immune system response damages its own tissues, potentially leading to organ failure and death.

Learn More

Dr. Lauralyn McIntyre is an intensive care unit (ICU) physician and senior scientist at The Ottawa Hospital, and it’s her care of critically ill patients that has motivated her research into sepsis. Over the years, she’s witnessed the debilitating impact it can have on patients and their families. “It’s why I’m doing this research. As researchers, we love science. We love posing questions and the thinking that goes with these questions, and we love the answering those scientific questions. But the main reason we’re doing research is to help patients,” says Dr. McIntyre. “If there’s some way we can just move that needle to help these patients and their families, that just means so much.”

The global impact of sepsis

Sepsis is recognized as a global health priority. It’s estimated there are 48.9 million cases of sepsis annually and 11 million sepsis-related deaths — those account for almost 20% of global deaths. It is also the leading cause of death among COVID-19 patients.

To put that in perspective, a study published in 2021 led by researchers at The Ottawa Hospital and ICES (Institute for Clinical Evaluative Sciences) showed that severe sepsis is linked with higher mortality, increased hospital readmission, and higher healthcare costs. In Ontario alone, sepsis related costs are estimated at $1 billion per year.

“It’s the complexity of the infection and the challenge that drew me to the research, but also knowing the potential to really help patients and see if we can make them better.”

– Dr. Lauralyn McIntyre

According to Dr. McIntyre, sepsis is the most common reason why patients are admitted to ICUs. “They account for about 20% of the cases in the ICU at our hospital. From a provincial glance, over a four-year period, there were 270,000 cases of patients that were admitted to hospitals in Ontario for infection — about 30% had the more severe form of sepsis, with infection plus organ failure which amounts to about 67,500 patients a year in Ontario alone – it’s staggering,” explains Dr. McIntyre.

These data are a key motivator to learn more about sepsis and how to treat it. “It’s the complexity of the infection and the challenge that drew me to the research, but also knowing the potential to help patients and see if we can make them better,” says Dr. McIntyre.

Putting a face to the impact of the infection

Ten years ago, sepsis changed the life of Christine Caron — a single, working mother with four children who, at the time, ranged in age from 15 to 24. Throughout the winter and spring of 2013, she hadn’t been feeling well. Then in late May, while playing tug-of-war with her four dogs, her left hand was accidentally nipped. “It wasn’t a serious bite, just a break in the skin. I had no redness or pain, so I washed it out and disinfected the area,” recalls Christine.

Four days later when Christine was at work, she realized she hadn’t gone to the bathroom all day — eventually she learned this was because her kidneys were shutting down. The following day, she set out for a morning run. “I was winded and had to walk home but felt better after a shower. Later that day, I had terrible stomach pain — like someone had punched me in the stomach — and felt disoriented. I went home and slept. My son woke me up at one point to say I was breathing funny, but I assured him I was fine and fell back to sleep. I was shocked when I woke up and realized how long I had been asleep,” says Christine.

Christine Caron is a survivor of sepsis.

She remembers feeling agitated and more symptoms developed, including sweating despite feeling cold and becoming very thirsty. She went to a local urgent care centre, but it was closed. “I had no idea how sick I was, and the thought of sitting in an emergency department was overwhelming. I decided if I wasn’t feeling better in the morning that I would go to the hospital then.” 

Later that night, while her children slept, she became very sick — flu-like symptoms as she describes it. “I lay on the bathroom floor, probably ‘till three in the morning. I thought about calling an ambulance, but I didn’t want to wake up my family,” says Christine. “I wasn’t thinking clearly. I now know this was delirium.”

The next morning, a friend took Christine to a local hospital. “I was dizzy, I could barely breathe. I handed my health card to the attending nurse and then I collapsed,” explains Christine.

Christine wouldn’t regain consciousness for a month. On June 13, she woke up at the Civic Campus of The Ottawa Hospital to learn the devastating news of what sepsis had done to her body. This was when she heard about septic shock for the first time. “I had bronchitis that progressed to walking pneumonia. It was this condition that compromised my immune system resulting in the reaction to the bacteria when I was nipped by my dog. It quickly escalated to septic shock.”

As it would turn out, the sepsis infection had caused irreparable damage. By June 22, Christine began a series of surgeries to amputate her legs, her left arm, and remove dead tissue from her remaining limb and her face — changing her life forever. Little did she know at the time, but this set her on a path of becoming a voice for sepsis survivors. By early July, she was released from the hospital and would learn a new way of life at our Rehabilitation Centre, where she learned to walk again and received support for PTSD. Today, Christine is an active advocate for sepsis survivors, awareness, and for research.

Christine with her dogs.

Christine with her family.

Moving the needle for sepsis treatment

For decades, there has been little progress in advancing specific treatment for sepsis, but world-first research at our hospital shows that a specific type of stem cells may be the key to helping balance out the body’s immune system to improve its response to sepsis. Laboratory studies and early clinical trial results were so promising that Dr. McIntyre’s research was awarded $2.3 million from the Canadian Institutes of Health Research and the Stem Cell Network to begin a larger trial. “Researchers around the world have spent decades trying to find new therapies for septic shock, but so far nothing has improved survival, nor the quality of life for survivors of this devastating illness,” says Dr. McIntyre. “We urgently need new treatments for septic shock and to test them in randomized controlled trials like this one.”

This injection of funds will allow the team to expand the trial to 10 centres across Canada to see whether the stem cells can reduce patients’ needs for organ support in the ICU.

For Dr. McIntyre, this research, which is a huge collaboration among hospital colleagues, including Drs. Duncan Stewart, Dean Fergusson, and Shirley Mei, as well as colleagues throughout Canada and abroad. It provides hope that years of dedication to this mysterious illness may finally move the needle forward for sepsis treatment. “These stem cells hold, in my opinion, immense therapeutic promise for the treatment of sepsis, because these cells act through many mechanisms that relate to sepsis. Not only do they recognize and ultimately kill the bugs causing the infection, but they also calm the immune and blood-clotting responses that our body has to the infection,” explains Dr. McIntyre.

“I see this trial as the very first beginning — it’s a little bud, and we’re just going to grow from it.”

– Dr. Lauralyn McIntyre

And while Dr. McIntyre says her research has shown these cells have other benefits, such as restoring energy to the tissues, and reducing vessel leakiness and the swelling that goes with it, treating sepsis is still an enormously complex problem. “We can’t expect that there’s a silver bullet that’s going to completely cure sepsis, but from what we have learned so far, these cells have the potential to make a real dent in the immense death from sepsis, and we hope will improve the quality of life for survivors of this devastating illness.”

The “little bud” that will grow into future sepsis research

This clinical trial is just the starting point to learn more about this deadly infection, and the results will help inform future trials. As the research advances, and more is learned about how the body responds to these cells during sepsis, it will help identify future patients that may have the most to benefit. “So, I see this trial as the very beginning — it’s a little bud and we’re just going to grow from it,” explains Dr. McIntyre.

The growth of this research has been cultivated by what Dr. McIntyre describes as a major collaborative team approach. It includes researchers, both basic and clinical, cell manufacturing experts, trainees, project managers, clinicians, and nurses, as well as patient and family partners, and sepsis survivors, like Christine, who is the lead patient partner. “Working with these patient partners has just been illuminating about post-sepsis survivorship. People like Christine have been so helpful in enabling us to understand the need to study more about the survivorship of these patients and their families, and the quality of that survival,” explains Dr. McIntyre.

“Sepsis took so much from me — it scarred me in so many ways. We need to advocate and educate because sepsis does not discriminate.”

– Christine Caron

There’s a mutual admiration between the two women, who have each seen sepsis through a very different lens. Christine is thrilled to have her voice heard and to see that needle move forward. “Dr. McIntyre’s research is phenomenal because a lot of patients come out with organ damage, and stem cell research could save so much for so many people. Wouldn’t it be so wonderful if it did?” Christine adds, “Sepsis took so much from me — it scarred me in so many ways. We need to advocate and educate because sepsis does not discriminate.”

“If there's something that we can do to reduce death and help how patients survive this immense illness, we’ve just got to go there.”

– Dr. Lauralyn McIntyre

And so, for Dr. McIntyre, it’s those faces she sees in the ICU and those like Christine, who work alongside her, that continue to motivate her with each step forward in the search for answers in this challenging puzzle of sepsis. “If there’s something that we can do to reduce death and help how patients survive this immense illness, we’ve just got to go there.”

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

Categories: New Campus Development, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Stem Cell

Published: January 2023

In late 2019, Camille Leahy was excited about the future. She was ready to embark on a new work adventure after quitting her job of 17 years. However, that all changed in January 2020 when she started feeling unwell and was in a great deal of pain. Camille went to the emergency department closest to her home in Newmarket, knowing something just wasn’t right. The next day, she received a devastating diagnosis — acute lymphoblastic leukemia. It was the start of a rollercoaster journey that eventually led her to a Canadian-first CAR T-cell therapy clinical trial taking place at The Ottawa Hospital.

With barely any time to digest the news of her cancer diagnosis, the 35-year-old learned she needed to begin treatment right away. She was referred to Princess Margaret Hospital in Toronto and admitted as soon as a bed was available. “From there, I started a month of treatment that consisted of intense chemotherapy to get me into remission. The goal was to then continue maintenance therapy for a couple of years, which would include chemotherapy, steroids, and other medications,” explains Camille.

World-Leading Research

Our made-in-Canada CAR T-cell therapy clinical trial is bringing new hope to people like Camille, who have cancer. Our Campaign to Create Tomorrow will advance more lifesaving research like this and strengthen Ottawa’s position as a global research powerhouse.

With this sudden diagnosis and the immediate requirement for treatment, it meant the single mom couldn’t start her new job — now she was also without employment. “At that point, we just had to worry about saving my life,” says Camille.

Shocking news after rounds of treatment

After 30 days in hospital and all set to go home, Camille received another blow. The treatment didn’t work, and there were still cancer cells lingering. Her medical team needed to try another option — and right away. This time, Camille was put on an immunotherapy drug known as blinatumomab. After a second consecutive month in hospital, away from her daughter, there was a glimmer of hope — she was in remission.

However, she also learned the cancer would keep returning, so her team recommended a stem cell transplant as her best option. “That was shocking news for me,” says Camille.

“About eight months post stem cell transplant, I woke up with some neck pain. I didn't think anything of it, but unfortunately, blood work showed that the cancer returned, and it was aggressive.”

– Camille Leahy

By July 2020, she had undergone the stem cell transplant and spent another month in hospital, but this time, the world was in the midst of the pandemic — that meant her family, including her daughter, couldn’t visit. Camille was eventually discharged, but another hurdle was around the corner. “About eight months post stem cell transplant, I woke up with some neck pain,” explains Camille. “I didn’t think anything of it, but unfortunately, blood work showed that the cancer returned, and it was aggressive.”

“Have you heard about CAR T-cell therapy?”

It was now March 2021, and Camille was out of options. Her medical team recommended another chemotherapy protocol, but she just couldn’t do it. “When they started naming off the types of chemo involved, I broke down because it just sounded all too familiar to my first month, and that induction didn’t work,” recalls Camille. “Also, this time it was during a pandemic. At least when I was diagnosed in January, I had all my family and all my friends visiting every day. But this time around, I wasn’t going to be able to see my daughter, I wasn’t going to be able to have my friends and family as often as I wanted — maybe once a week. I just couldn’t do it without them, I wasn’t strong enough.”

That’s when she remembered CAR T-cell therapy had been mentioned at one point early on, so she asked her doctor about it. “I asked her, ‘Have you heard about CAR T-cell therapy?’ She confirmed there was a trial going on in Ottawa, and she decided to see if I would meet the criteria for it.”

Soon, Camille got the dose of good news she desperately needed – she was accepted into the trial, and she soon met Dr. Natasha Kekre, the principal investigator.

First made-in-Canada CAR T-cell therapy for cancer shows promise

More than a dozen people with cancer who had exhausted all treatment options are alive and cancer free today thanks to a pioneering, Canadian-first clinical trial. It uses a highly personalized kind of immunotherapy to help the patient’s T-cells recognize and kill their cancer. The results to date could open the door to a new era of made-in-Canada immunotherapies for cancer.

Patients in the trial, like Camille, have their immune cells (T-cells) removed and genetically engineered in a lab with a disarmed virus to produce synthetic molecules called “chimeric antigen receptors” (CAR). These new supercharged CAR T-cells, with their enhanced cancer-killing ability, are then infused back into the same patient.

What is the difference between a T‑cell and a CAR T‑cell?

T‑cells are a type of white blood cell, which play a critical role in the immune system. Originating in the bone marrow and maturing in the thymus — a small gland in the chest that’s part of the lymphatic system — T‑cells focus on attacking specific foreign particles, including bacteria, viruses, and other microbes.

CAR T‑cells are T‑cells that have been modified in a lab to fight cancer cells. First, T‑cells are removed from the patient, then they’re engineered to produce proteins on their surface called “chimeric antigen receptors,” or CARs. These proteins help the cells recognize and bind to proteins on the surface of cancer cells. Once engineered, the CAR T‑cells are reinfused into the patient to do their work.

Learn more about CAR T-cell therapy

While Health Canada has approved several commercial CAR T-cell therapies, access is currently restricted to people with just a few kinds of leukemia and lymphoma, and only if they fall into certain age ranges. Commercial CAR T-cell therapy is also very expensive and involves shipping cells to the United States and back.

This new trial is the first to manufacture CAR T-cell therapy in Canada. It uses a different kind of cell manufacturing that opens the door to less expensive and more equitable treatment.

“We’re very excited about the preliminary results of this trial, and we will be moving forward with new and exciting trials across Canada.”

– Dr. Natasha Kekre

“Canadian patients deserve access to the best cancer treatments in the world, and we need Canadian research to make this happen,” says Dr. Kekre, who, in addition to her leadership with this clinical trial is also a scientist and hematologist at The Ottawa Hospital. “We’re very excited about the preliminary results of this trial, and we will be moving forward with new and exciting trials across Canada.”

CAR-T trial provides one last shot

Camille’s cancer journey up until this point experienced many hurdles and that happened once again with the CAR-T clinical trial. During the first attempt, she was sent back home because she had a lung infection. By the second try, Camille was having some neurological symptoms that included her face going numb. “The medical team decided to investigate, and they did a lumbar puncture that showed the cancer had gone into my central nervous system and they hadn’t been able to detect that because there’s a blood-brain barrier. Again, I was sent home,” recalls Camille.

“Obviously when I was told that this was my last shot I was terrified. I knew there were risks, but my options were limited. I took a chance, but I also know how passionate Dr. Kekre is about this trial. I did a lot of research about CAR-T and how effective it was.”

– Camille Leahy

She would have to endure lumbar punctures twice weekly with chemotherapy to clear the cancer from the central nervous system — something Camille describes as “awful”, but she didn’t give up.

Finally, Camille got the green light for a third trip to Ottawa, but the day before she spiked a fever. She remembers telling her family, “I know that there’s a chance I might not be able to do it, but I’m going anyway.” Somehow, the fever cleared and finally the team was able to go ahead with the cell collection.

Two weeks later, on September 15, 2021, she had the CAR T-cells reinfused into her body — reprogrammed to now be able to recognize the cancer cells and kill them.

Camille and her daughter waited to see if, finally, they would get good news. “Obviously when I was told that this was my last shot, I was terrified,” explains Camille. “I knew there were risks, but my options were limited. I took a chance, but I also know how passionate Dr. Kekre is about this trial. I did a lot of research about CAR-T and how effective it was.”

Immunotherapy research changes lives

It has been a long and challenging journey for Camille, but she is truly grateful to the entire team at our hospital who were ready to care for her when she had run out of treatment options. It wasn’t until one year after Camille’s CAR T- cell treatment that she really started to believe she could get better. After so many hurdles during this cancer journey, she knew it would take time and wanted to give it a year.

By September 15, 2022, she felt like a new person, and was cancer-free. “I’m back to driving, I’m back to feeling as normal as I can. Obviously, there’s always the fear, but I couldn’t walk last year. I was using a cane and a walker. I struggled a lot. But this trial changed my life.”

“Even if the cancer comes back, this has given me precious time, and I know the research will help many others. It has given me a fighting chance.”

– Camille Leahy

As Camille and her daughter, Michela, are back to doing the mother-daughter things they love, Camille is also advocating for the research that saved her life with the end goal of giving more patients hope. She wants to make sure CAR T-cell therapy is available to others who face an uncertain future like she did. “For it to become more widely available in Canada would be incredible. The research team at The Ottawa Hospital made it possible for me to have this treatment done here in Canada. I didn’t have to raise money to try and leave the country to go get CAR T-cell treatment in the United States. My goal now is to tell my story so that they can continue to do this in Canada and can become more available to everyone here.”

Camille and her daughter at a Toronto Blue Jays game.

Camille and her daughter taking part in MudGirl.

Today, at age 38, Camille is easing back into life and thinking about the future. When her immune system is strong enough, she hopes to return to work. Right now, she enjoys the precious time and memories she’s been given the opportunity to make with her daughter, like driving her to school, taking her to baseball games, and watching her play soccer — moments she doesn’t take for granted. “Even if the cancer comes back, this has given me precious time, and I know the research will help many others. It has given me a fighting chance.”

Learn more about the Canadian-Led Immunotherapies in Cancer (CLIC) research program, funded by BioCanRx, the Canadian Institutes of Health Research, The Ottawa Hospital Foundation, BC Cancer, BC Cancer Foundation, the Ontario Institute for Cancer Research, the Ottawa Regional Cancer Foundation and the Leukemia and Lymphoma Society of Canada.

Download episode #75 of Pulse Podcast to hear Camille talk about why she’s become an advocate for cancer research.

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

Categories: Cancer, Cancer, Cancer

Updated: February 2024

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

Published: October 2022

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

Find out how the Campaign to Create Tomorrow will take research to unprecendented heights.

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

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

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

Dr. Rebecca Auer is the Director of Cancer Research at The Ottawa Hospital.

A most unusual case of colorectal cancer

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

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

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

– Dr. Joanna Gotfrit

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

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

Navigating through the cancer journey

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

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

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

– Mary Farnand

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

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

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

Photo by Ashley Fraser.

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

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

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

When should I be tested for colorectal cancer?

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

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

Molecular Oncology Diagnostics Lab plays a key role

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

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

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

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

Photo by Ashley Fraser.

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

– Dr. Rebecca Auer

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

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

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

The hope of immunotherapy

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

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

– Haydn Bechthold

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

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

What is immunotherapy?

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

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

Ready for J-pouch surgery

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

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

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

How J-pouch surgery works

BEFORE SURGERY

Colon and rectum present
Patient suffering from symptoms

DURING SURGERY

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

SECOND-STAGE SURGERY

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

The role research plays in changing the course of cancer care

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

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

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

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

Setting his sights on the future

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

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

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

Photo by Ashley Fraser.

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

– Haydn Bechthold

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

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

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

Listen Now:

Categories:

Published: September 2022

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

Find out how the Campaign to Create Tomorrow will take research to unprecendented heights.

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

News of MS diagnosis hits hard

When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.

It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”

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

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

– Geneviève Bétournay

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

Effects of MS on the body

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

Groundbreaking MS treatment pioneered in Ottawa

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

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

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

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

MS symptoms were progressing quickly

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

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

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

– Geneviève Bétournay

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

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

Time for the MS stem cell transplant

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

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

How did a stem cell transplant halt MS?

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

Learn more about stem cells.

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

– Geneviève Bétournay

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

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

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

Was it all worth it?

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

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

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

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

– Geneviève Bétournay

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

Listen Now:

Categories: Creating Tomorrow, Neuro, Stem Cell, Stem Cell, 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

Vittorio Petrin has never seen his grandchildren’s faces. The Italian draftsman started to lose his peripheral vision in the early 1980’s after his second son was born, forcing him to leave work and take an early pension. He was diagnosed with retinitis pigmentosa, a genetic disorder that causes the cells in the retina to break down. There is no cure. His vision steadily got worse until he couldn’t see any light at all.

Before his vision went dark, Vittorio spent six years building a model of St. Mark’s Basilica in Venice, using over 3,000 copper pieces. “It was the most beautiful place I’d seen, and I wanted to replicate it. Working on it kept my mind away from what was going to happen,” he says.

An image of Vittorio Petrin with a replica of St. Mark’s Basilica he built while losing his vision to retinitis pigmentosa. — Vittorio Petrin with a replica of St. Mark’s Basilica he built while losing his vision to retinitis pigmentosa.

“My dad was an artist. He was able to draw phenomenally, he liked taking videos. Sight was important to him,” says Vittorio’s son Dino Petrin. “He never complained about going blind, we never saw it as children. He always had a sense of humour and a strong character. He never asked for any pity, he just took it in stride.”

Millions of people in North America live with retinal diseases like retinitis pigmentosa, glaucoma, retinal ischemia and age-related macular degeneration. These diseases are poorly understood, progressive, and often untreatable.

But thanks to promising gene and cell therapies in development, Dino hopes that one day people like his father won’t have to lose their vision.

Dr. Catherine Tsilfidis' research is aimed at developing a gene therapy strategy that blocks apoptosis and slows down retinal disease progression. — Dr. Catherine Tsilfidis

“Soon we’ll be able to do what our lab has been trying to do all along – bring XIAP gene therapy into the clinic.”

– Dr. Catherine Tsilfidis

A discovery with game-changing potential

Dr. Catherine Tsilfidis can imagine the day when the first patient is treated with the retinal disease gene therapy her lab has worked on for the past 20 years. While it won’t happen tomorrow, that day is not far off.

“XIAP gene therapy is exciting because it keeps cells in the back of the eye from dying,” said Dr. Tsilfidis, a senior scientist at The Ottawa Hospital and associate professor at the University of Ottawa. “It could slow or stop vision loss caused by many different retinal diseases.”

Dr. Tsilfidis is leading a world-class team of researchers that recently received $2.4 M from the Ontario Research Fund to develop gene and cell therapies for retinal diseases. One of their goals is to do the work needed to bring XIAP gene therapy into clinical trials, which could start in the next few years.

The time is right for gene and cell therapy

The promise of replacing defective genes and cells in the eye with healthy ones is undeniable. While these fields are still in their infancy, they are expected to grow exponentially over the next decade. Gene therapy for the eyes has particularly taken off, with Health Canada approval of the first gene therapy for a rare genetic form of vision loss in 2020.

“This research program could make Ontario a leader in the fields of both gene and stem cell therapy

– Dr. Pierre Mattar

When it comes to cell therapies, Ottawa and Toronto are major hubs in the growing area of stem cell research. As partners in the retinal research program led by Dr. Tsilfidis, UHN scientist Dr. Valerie Wallace will work on increasing the survival of transplanted stem cells in the eye, while The Ottawa Hospital’s Dr. Pierre Mattar aims to develop stem cell therapies for retinal ganglion cell diseases such as glaucoma. “This research program could make Ontario a leader in the fields of both gene and stem cell therapy,” said Dr. Mattar. “By learning the best way to mass produce and integrate stem cells for retinal disease, we can advance stem cell research in other fields.”

The Ottawa Hospital's Dr. Pierre Mattar aims to develop stem cell therapies for retinal ganglion cell diseases such as glaucoma. — Dr. Pierre Mattar

Collaboration between lab researchers and clinicians key to success

The incredible challenge of bringing a basic science discovery to clinical trials requires an exceptional team. For this research program, Dr. Tsilfidis assembled a “dream team” of long-time collaborators and new partners.

As a basic scientist, Dr. Tsilfidis has always worked closely with clinicians to help ensure her research reflects patient needs.

“Ophthalmologists help us identify the most important questions to ask,” said Dr. Tsilfidis. “Our lab started working on diseases like Leber hereditary optic neuropathy and glaucoma because clinicians told us how much of a problem they were.”

Two of Dr. Tsilfidis’ long-time clinical collaborators, Drs. Stuart Coupland and Brian Leonard, are part of this new retinal research program. They are joined by retina specialists Drs. Bernard Hurley and Michael Dollin, who will assist in developing clinical trial protocols.

“Our researchers have an incredible track record of taking discoveries from the lab to the bedside,”

– Dr. Duncan Stewart

Dr. Tsilfidis’ lab and office are just down the hall from the ophthalmologists’ offices and clinics, which makes collaboration easier. This kind of co-location of scientists and clinicians has been key to The Ottawa Hospital’s success in translating discoveries from the lab bench to the patient bedside.

The highly skilled team at The Ottawa Hospital's Biotherapeutics Manufacturing Centre will make the clinical-grade virus to deliver gene therapy into the eye. — The highly skilled team at our Biotherapeutics Manufacturing Centre will make the clinical-grade virus to deliver gene therapy into the eye.

Leveraging our biomanufacturing expertise at The Ottawa Hospital

In addition to clinical experts, the team knew they needed new resources and partners to be successful.

“We’ve been very much a basic science lab in the past,” said Dr. Tsilfidis. “Now that we’re at the stage that we want to get XIAP to the clinic, we need all the help we can get.”

One missing piece was a special clinical-grade virus used to deliver the XIAP gene into the eye, known as an adeno-associated virus (AAV). Finding cost-effective sources of AAVs has been a major bottleneck for getting gene therapy trials and treatments off the ground.

Thankfully, The Ottawa Hospital is home to the Biotherapeutics Manufacturing Centre (BMC), a world-class facility that has manufactured more than a dozen different virus- and cell-based products for human clinical trials on four continents. Experts at the BMC were already starting to expand into AAV manufacturing when Dr. Tsilfidis approached them about collaborating on the retinal research program.

The BMC has since been working with Dr. Tsilfidis and her team to develop a process to manufacture the AAVs the team will need for Health Canada approval of the XIAP gene therapy for clinical trials.

The BMC is on track to become the first facility in in Canada to make clinical-grade AAV vectors for gene therapy studies. This new expertise will help them support other gene therapy trials with a focus on rare disease.

Learn more about our Biotherapeutics Manufacturing Centre.

How to plan a world-class clinical trial

In addition to the clinical-grade virus, the retinal research team needed help planning a future clinical trial of XIAP gene therapy. Fortunately, there are no shortage of clinical trial experts at The Ottawa Hospital.

“I’ve never planned a clinical trial before,” said Dr. Tsilfidis “But I knew someone who had – Dr. Dean Fergusson. I’ve always been impressed by the rigorous trails he’s helped develop. When I asked for his advice, he referred me to the Ottawa Methods Centre.”

The Ottawa Methods Centre is The Ottawa Hospital’s one-stop shop for research expertise and support. Their goal is to help all clinicians, staff and researchers at the hospital conduct the highest quality research, using the best methods. They support over 200 research projects a year, led by clinical and basic researchers alike.

“The Ottawa Methods Centre has been amazing to work with,” said Dr. Tsilfidis. “Their research methodology expertise has strengthened this research program and our funding applications.”

Drs. Manoj Lalu and Dean Fergusson along with other experts at the Ottawa Methods Centre are helping to plan a future clinical trial of gene therapy for retinal disease.

At the Ottawa Methods Centre, the team is leveraging the Blueprint Translational Research Group’s Excelerator program, designed to enable efficient translation of basic research discoveries to the clinic through rigorous methods and approaches. Co-led by Dr. Dean Fergusson and Dr. Manoj Lalu, the program will help design the clinical trial protocol, and support the clinical trial application to Health Canada through systematic reviews of available pre-clinical and clinical data.

Research program holds enormous promise

Tackling retinal disease will be a big challenge, but Dr. Tsilfidis has assembled an excellent team of partners both old and new to move this research program forward.

“These therapies could be life-changing. If we could cure or slow down the progression of vision loss, that would be amazing.”

– Dino Petrin

“Our researchers have an incredible track record of taking discoveries from the lab to the bedside, but it can only be done through team efforts like this one,” said Dr. Duncan Stewart, Executive Vice-President of Research at The Ottawa Hospital and professor of medicine at the University of Ottawa. “Fully leveraging our basic and clinical expertise, as well as our world-class core research resources is the key to getting new treatments to the patients who need them.”

For Dr. Tsilfidis, the excitement is palpable. “Soon we’ll be able to do what our lab has been trying to do all along – bring XIAP gene therapy into the clinic.”

Dino, a former graduate student in Dr. Tsilfidis’ lab, sees the potential of gene therapies to help people like his father. “These therapies could be life-changing,” he said, “If we could cure or slow down the progression of vision loss, that would be amazing.”

Vittorio Petrin pictured with his wife Maria Petrin — Vittorio Petrin with his wife Maria Petrin

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

Categories: Biotherapeutics, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Clinical Trials, Innovation and Technology, Technology

At only 20 years old, Junie immigrated to Canada from Malaysia with ambitions to study at the University of Toronto. A new life would begin — one that would entice her family to follow her in the years ahead but would be filled with adversity.

While Junie was initially drawn to Canada for her studies, a particular experience in her early years in Toronto cemented her desire to make Canada her home. She remembers a newspaper stand on a busy street in downtown Toronto. “There was a pile of newspapers and I didn’t see anybody around. I noticed people came by, picked up a paper, and dropped some money in a bowl. It was so orderly. I couldn’t believe that people were so nice.” It was the honour system and that’s what Junie loved. “I remember thinking ‘This is a kind of society I want to live in.’”

In subsequent years, Junie got married and her parents and three siblings followed her path to Canada. Her brother settled in Ottawa and in 1996, Junie, her sister, and their husbands decided to pay a visit to him at his new home. They had a wonderful time reconnecting.

As the two couples headed home after a week, they were involved in a head-on crash just an hour outside of Ottawa. It was a devastating collision, that left the two men dead, and the two sisters badly injured. Junie remembers waking up at the crash site and asking a police officer what happened. “He told me there was an accident and I remember seeing our two husbands slumped over in the front and then I lost consciousness.” The two sisters were rushed to The Ottawa Hospital Trauma Centre.

Eastern Ontario’s only Level 1 Trauma Centre for adults

The Ottawa Hospital is home to the only Level 1 Trauma Centre for adults in eastern Ontario — which is located at the Civic Campus. We care for the most critically injured patients from across the region, including western Quebec.

The team includes a trauma team leader, as well as an anesthesiologist, a team of emergency nurses, a group of resident physicians, and respiratory therapists — this allows them to be ready for the wide variety of complex cases that they handle, or when a Code One is called.

A Code One means a patient with significant injuries is coming to the hospital and all resources gather at the Emergency Department. This code can be called for a scenario when multiple patients are injured, like the motor vehicle collision Junie and her sister were involved in, or for instances where a single patient is injured. By contrast, a large-scale incident or any other community disaster results in a Code Orange being called.

When Junie woke up again, she was in the hospital with significant internal injuries. She learned her sister had suffered multiple fractures and was then told about the unimaginable loss — Junie’s husband and brother-in-law were gone.

“I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received.”
– Junie

Junie was in the Intensive Care Unit for two weeks and was heavily sedated. She remembers the compassionate care she received, having to rely on others to bathe her and wash her hair. She will never forget their kindness and sensitivity. “I told myself if I ever get better, I just have to give back. I was just very grateful for all the excellent care that I had received,” says Junie.

Clinical trial changes the practice of medicine

During Junie’s early days in the hospital, her brother Lawrence observed this compassionate care firsthand as he visited daily, supporting both of his sisters during their devastating loss. He also stayed by Junie’s side while her condition was critical — she was losing a significant amount of blood.

Junie’s brother Lawrence and his wife, Catherine

Junie had multiple blood transfusions to keep her alive and was asked to participate in a clinical trial to improve when blood transfusions should be given in critical care. Lawrence was impressed by the skilled team he observed, and he signed consent for his sister to participate in the trial, in hopes that it would help her and future patients.

“This research has saved thousands of lives and improved blood transfusions for millions of people.”
– Dr. Dean Fergusson

Not only did Junie get better but her participation in this research also helped to change the practice of transfusions worldwide. Dr. Dean Fergusson, Senior Scientist and Director of the Clinical Epidemiology Program at our hospital, explains what this means for patients. “Today, patients all around the world receive blood transfusions based on a more restrictive protocol developed at The Ottawa Hospital,” he says. “Thanks to patients like Junie, we now have a much better idea of when to transfuse, how long the blood should be stored for, and how to prevent bleeding in the first place, so patients can avoid transfusions. This research has saved thousands of lives and improved blood transfusions for millions of people.”

Filled with gratitude to this day

Today, Junie is living in Toronto with her second husband and is deeply grateful to this day for the exceptional care she and her sister received. Not long after she returned home, Junie became a monthly donor to our hospital – holding true to the promise she made while she was in the hospital that she would give back to those who cared for her.

Giving is something that her late mother instilled in her — Junie’s father died when she was very young. It helped mold the person she is today. “We were a working-class family, we weren’t rich, but we persevered. My mother was just an amazing person. She was selfless. So, my siblings and I learned from that — when you receive something good, you try to pay it back in kind, especially with deeds. I think that has a lot of influence on me,” explains Junie.

Strength is an attribute Junie also has carried on from her mother. At the age of 55, Junie was diagnosed with breast cancer. Right after her breast cancer operation, she faced an ovarian cancer diagnosis. She has seen firsthand the need for philanthropy in healthcare to provide the most advanced care. Despite everything she’s faced in life, Junie describes herself as lucky. “It’s still been a good life. It’s been 13 years since I was diagnosed with those kinds of cancers and I’m still here. I am very lucky. I’m a very lucky woman.”

“That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”
– Junie

Now retired after a successful career in banking, Junie thinks to the future and how she can continue to pay it forward. That’s why she’s decided to leave a gift in her will to The Ottawa Hospital so patients will have the latest technology and most advanced treatment options to save their lives, just like she experienced. “That’s why, when I die, I can leave something behind to help those who cared for me. That’s my motive.”

Why Planned Giving is important?

By leaving a gift in your will to The Ottawa Hospital, you will be helping to shape the future of healthcare. It’s an extraordinary opportunity that you will give future generations – just imagine your legacy.

We’re here to provide you with the guidance you need to leave a gift in your will to support our hospital. This is an opportunity for you to create stronger healthcare for tomorrow, with a larger gift than perhaps you thought possible – larger than those made during your lifetime. Just imagine the legacy you will leave.

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

Categories: Gift In Will, World-Leading Research

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