Archives des Patient Care | The Ottawa Hospital Foundation

Published: April 2024

Picture hundreds of medical images mapped out into a concise report so a surgical team can plan a complicated surgery to remove a rare cancerous tumour. Then, picture a virtual reality (VR) system taking all that imaging and giving the surgeon a 3D view that allows them to move within the patient’s body — just like a video game — before surgery. It’s a whole new way of surgical planning, and this new technology was used for the first time in Canada right here at The Ottawa Hospital (TOH).

When Emeric Leblanc was 13, he started to have pain in his left leg. It was initially believed to be growing pains, but as months went by, the pain worsened. “I used to play basketball, and then I couldn’t anymore because it hurt so much. It would keep me awake at night. Then it got to the point where I had trouble walking,” explains Emeric.

Eventually, he would undergo a series of tests. On December 8, 2021, now 14 years old, Emeric sat with his mom and dad at CHEO and learned he had Ewing sarcoma. This type of cancer forms in the bones — most often in children between age 10 and 20. The teen’s growing tumour was in his pelvis and about 12 cm in diameter — the size of a grapefruit.

Grasping the complexity of a Ewing sarcoma tumour

While it was a shock to hear the word cancer, deep down Emeric says he already expected further tests would reveal it was cancerous. What was especially hard to digest was the news that he wasn’t going back to school.

“Everything changed in that moment,” explains Emeric’s mom, Hélène Lachance. “There was a lot of information to digest about the treatment plan and how we could prepare him for that.”

He returned to school to retrieve all his belongings because chemotherapy treatment started right away. He needed to have his braces removed, and was referred to a fertility clinic, because chemotherapy could make him infertile. It was a great deal for this teen to absorb. No longer as active as he wanted to be, he became much more invested in video games — a sign of what was to come, since VR would be used to help save his life.

A collaborative team effort

“It was a collaboration of top-notch medical oncology, radiation oncology, and surgical teams between TOH and CHEO. A lot of great people came together to help Emeric.”

— Dr. Joel Werier

For more than a year, Emeric spent most of his time in the hospital. A team from The Ottawa Hospital and CHEO came together to give him the best possible chance at a healthy, active life. “It was a collaboration of top-notch medical oncology, radiation oncology, and surgical teams between TOH and CHEO. A lot of great people came together to help Emeric,” explains Dr. Joel Werier, Head of The Ottawa Hospital Sarcoma Program and orthopaedic oncologist.

Also, an integral part of the team effort was Dr. Kawan Rakhra, a senior musculoskeletal radiologist at our hospital. Both doctors are also working with Realize Medical, the company behind the new VR technology used for Emeric’s surgery.

They each played a pivotal role in tackling Emeric’s challenging case. The tumour was on the pelvis and coming quite close to the left hip joint. The goal was to remove part of the pelvis but save the hip joint, because without it, he wouldn’t have the same function of his leg. However, removing a pelvis is probably one of the more complex surgeries in medicine, according to Dr. Werier.

Stepping inside the patient through VR

That’s where the unique use of technology comes into play. The first step was chemotherapy to try to shrink the tumour, followed by radiation. With the tumour located on Emeric’s pelvis, a plan was needed to save his hip joint.

“This is where the VR system was really critical. It allowed us to clearly understand the exact anatomy of the tumour and its relation to important structures, including the hip joint,” explains Dr. Werier.

To best prepare a team to care for a patient, Dr. Rakhra must examine a litany of scans. In his area of expertise, whether it’s an X-ray, ultrasound, CT scan, MRI, or more, there can sometimes be 1,000+ images to scroll through, review, and create a detailed report to help with staging a cancer or planning a surgery. It takes an extensive amount of time and can be overwhelming.

“If as the saying goes, ‘A picture is worth 1,000 words,' well then a 3D virtual reality model is worth a million, and it's going to transform how we use radiology in surgical planning.”
— Dr. Kawan Rakhra

Q&A with Dr. Rawan Rakhra

“Tumours tend to be complex and challenging for radiologists, surgeons, and oncologists to really understand the intricate anatomy, the location, and relationship to other critical tissues in the organs,” explains Dr. Rakhra.
The VR system is a game-changer on many levels. Using technology previously used by the video gaming industry, surgical teams can view a customized 3D image of the tumour, then VR headsets help them step inside the patient’s virtual space and make a much more concise surgical plan. “It’s a paradigm shift in radiology where, traditionally, we look at these raw CT or MRI images and generate independent, descriptive reports that are sent to surgeons. But now, we found a way to further process them, integrate them, and convert them into a 3D model, which is a far more informative and powerful tool,” says Dr. Rakhra. “If as the saying goes, ‘A picture is worth 1,000 words,’ well then a 3D virtual reality model is worth a million, and it’s going to transform how we use radiology in surgical planning.”

VR at The Ottawa Hospital

There is virtually nothing as disruptive in healthcare right now as VR — or virtual reality, if you’ll excuse the pun. This technology is being used across disciplines to improve patient safety, outcomes, and efficiency, while reducing costs and recovery times. It is transforming training and education today, with lifesaving implications tomorrow.

VR in action

3D VR is used to increase the accuracy of deep brain stimulation surgery for patients with Parkinson’s

The Rehabilitation Centre’s virtual reality system helps patients in rehab recover skills like balancing and walking

Patients undergoing cancer treatment can get coaching or take a virtual getaway to the mountains or the beach

A whole new perspective for the surgical team

For Dr. Werier, it gives a whole new perspective for him and his surgical team. “It allows me to see things the way they’re meant to be seen — in three dimensions, the way our eyes would see them,” explains Dr. Werier. “It allows us to better understand the intricate anatomy and manipulate the images — for example, move nerves out of the way. We can share this with other members of the team and with the patient.”
And there lies another key benefit to this technology — the patient gets a much better understanding of their diagnosis and care plan. “When you show a tumour on an MRI scan, it’s not quite as appreciated as it is in a VR system,” adds Dr. Werier.
As for Emeric, he experienced VR by playing video games in the past, but this took him inside his own body to view what his surgical team had to do and to better understand the process.

Emeric in hospital after surgery.

“It was very cool. I could move it around — zoom in, zoom out. I could see the important veins and nerves that they try not to cut. It was also cool that I was the first to experience this.”

— Emeric Leblanc

On July 5, 2022, he became the first patient in Canada to undergo surgery using this new VR program. It was a very delicate surgery that included removing the left side of his pelvis and removing the entire tumour. Thanks to this technology, Dr. Werier was able to save the teen’s hip joint, allowing Emeric to regain his mobility and resume the activities he loved so much — like fishing and camping.

Emeric camping.

Often, Emeric can be found fishing on his dad’s boat.

Immense gratitude to have a skilled team and technology close to home

As a parent, it was a stressful time, but Hélène says seeing the tumour through the VR provided reassurance. “It was such a big surgery but seeing all this and the expertise of the team, I knew they were going to take care of my son. Dr. Werier was awesome. I mean, he saved my son’s life. We’ll always be grateful to him.”
After Emeric recovered from the 14-hour surgery, he required more chemotherapy, but today he’s doing well. Dr. Werier explains the goal was curative, and they will monitor Emeric closely in the coming years.
“It’s a complex operation — he’s a remarkable young man, and he did great. The VR helped us a lot. It’s much more intuitive, it gets people on the same page, and it’s much more efficient. It builds confidence in the surgical team.”

The teen, who is now 16, is back at school, back with his friends, and getting stronger every day. The only difference now is he wears a shoe with a thicker sole on his left foot because his leg is slightly shorter. He also plays video games with a whole new appreciation for VR gaming.
It’s this technology that is setting the stage for the next generation of surgeons and will give healthcare teams the most effective opportunities to provide the best care options to patients.
“This is the next evolution in how we look at things — a lot of this technology is homegrown in Ottawa, and I think it’s going to lead the virtual technology medical imaging industry. We’re excited about it,” says Dr. Werier.

Download or stream episode 96 to hear more about the impact of the VR technology on patient care with Dr. Kawan Rakhra.

Listen Now:

This success story began with the creation of Realize Medical in 2019, an Ottawa start-up company led by Dr. Justin Sutherland and Dr. Daniel La Russa. Both are physicists at The Ottawa Hospital, who saw an opportunity to further advance patient care using a technology most of us associate with video games. Other key contributors are Dr. Teresa Flaxman and Dr. Yusra Al Mosuli. In fact, Dr. Flaxman has been instrumental in elevating the 3D visualization program within our hospital and has been at the core of the VR modelling process with Drs. Werier and Rakhra since the early developments. Dr. Mosuli has been instrumental in the path forward including the Canadian first moment for this software program, Elucis, and Emeric’s surgery.

Research is critical for finding the best ways to use this technology and proving that it’a effective. Realize Medical has many research collaborations with various teams at The Ottawa Hospital to evaluate and implement their technology.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa. All researchers at The Ottawa Hospital follow a Responsible Innovation framework for developing and commercializing innovations in a responsible way.

Categories: Cancer, Innovation and Technology, Technology

Shelley with her mother, Marcella.

The mother-daughter bond is special. For some, it’s a connection that can rival any close relationship — an unconditional love. That’s certainly the case for Shelley and her mother, Marcella. That relationship was so special that Shelley decided to leave a gift in her will to The Ottawa Hospital — a gift that will ensure the love she has for her mother will live on through future generations of healthcare.
Both women have experienced care at our hospital for decades, and this gift seemed like a natural way for Shelley to say thank you and help others in the future. “My mom is my inspiration,” she says.
When Shelley was young, the family was living in Southern Ontario and she was diagnosed with scoliosis — a sideways curve of the spine that is most often diagnosed in adolescents. “I initially was cared for by SickKids in Toronto. I was involved in an experimental treatment, and over time it didn’t work and the condition progressed,” explains Shelley.
The family moved to Renfrew and as her condition worsened, Shelley was referred to the Civic Hospital in 1983 — she was just 13 years old.
She needed spinal corrective surgery and a spinal fusion. “I wasn’t in pain, but because the spine was curving, it pressed on my lungs so I would lose my breath easily. It also caused a visible deformity in my back that could lead to chronic pain in the future, so I didn’t want to go through that,” explains Shelley.

Early introduction to healthcare

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

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

— Shelley

The details of the hospital stay are still vivid for her, despite the fact it was 40 years ago. “I can see the room I was in, along with the nurses and the orderlies. There was one orderly I had a crush on, and I’d ring the bell sometimes, so he’d come back in,” laughs Shelley.
Once the surgery was complete, this young teen now had rods in her back along with hardware — and she dubbed herself a bionic woman. The surgical technique was new at the time. It was called the Luque Rod method, where specialized wires attach each vertebra around the rods — an extraordinarily delicate procedure, recalls Shelley.
The success of this surgery allowed her to grow up and have what she describes as a great life thanks to the care she received.
In her twenties, she travelled through Europe exploring Britain, Scotland, and Wales. But she never forgot the impact Dr. Armstrong had on her life. “I was doing some research recently and I came upon an article about him. I learned he had been awarded the Order of Canada in 2001. It came full circle for me and the impact he had on orthopaedic surgery in Ottawa and patients with spinal issues, like me.”

A lifetime of care at The Ottawa Hospital

While she did enjoy travelling, she was always drawn back to Ottawa, where she eventually moved — drawn back home to her family and her mom. “I wanted to go into natural medicine, but I developed chronic fatigue syndrome and fibromyalgia so I couldn’t continue my career,” says Shelley. “I would, however, need the services of The Ottawa Hospital throughout my life, and my mom did too.”
Shelley was diagnosed with fibromyalgia in 2004, and then in 2009, she was admitted to the Civic Campus with sepsis. “I had the most amazing care. It was a type of situation where I could have passed away, but the staff were angels watching over me.”
And when it came to people watching over her, of course, Marcella was always there for her daughter — lending support through these difficult times. The two women faced health challenges over the years, in fact, they were both diagnosed with celiac disease. However, it was just another way to bond as they would often seek out new gluten-free recipes to make together — they especially liked finding new desserts.
Then in 2020, the family received devastating news — Marcella had cancer. She was diagnosed with stage 4 neuroendocrine cancer. Then, not long afterward, she learned she had esophageal cancer.
“This was all during the pandemic, but the team was ready, and my mom got the care that she needed. They were always there for her,” says Shelley.
Marcella’s care included chemotherapy and radiation — she pushed through the treatments, but sadly passed away in February 2022 at the age of 77. “She was my best friend. She fought hard — she lived one year and seven months, which was good considering how advanced the cancer was when it was discovered.”

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

A legacy gift in memory of a devoted mother

Living a modest life, Shelley reached out to our Foundation team to ask how best she could create a legacy. She wanted to do something to recognize her mother’s life, her mother’s interests, as well as their special bond. “We talked all the time; it was probably me talking the most — we shared everything. She was my confidante,” says Shelley with a smile.
After she lost her mother, Shelley started thinking about her own mortality — which was not something she’d done in her 30s and 40s — and what would happen when she was gone. With her lifelong interest in medicine, and considering the years of care our hospital provided not only her mother but also herself, Shelley decided to leave a gift in her will — a gift to honour her mom.
“My mom is the reason why I want to give to the hospital, because she was always a passionate advocate for patient care and healthcare, even when she was sick,” she says.

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

— Shelley

The future of medicine also inspired Shelley. She reads the regular updates from the hospital and our Foundation about the future of healthcare, and she wants to be a part of that — supporting the next generation of care.
“The new hospital campus being built is going to be amazing, beautiful, and state-of-the-art. I have a lot of family that live in the surrounding areas of Ottawa, and they come to the hospital for care — some are three hours away,” explains Shelley. “This hospital is serving so many people in such a wide area. I have cousins and second cousins who are having children now, so it’s like I’m helping my family in the future by leaving this gift.”

Inspired by plans for the new hospital campus and research

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

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

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

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

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

— Shelley

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

Categories: New Campus Development, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services, Strengthening Critical Services

A CANCER JOURNEY

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

Published: February 2024

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

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

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

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

— Sabrina Presta

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

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

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

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

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

Sabrina is an active mom of two daughters.

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

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

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

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

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

— Sabrina Presta

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

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

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

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

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

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

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

Categories:

A CANCER JOURNEY

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

Published: February 2024

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

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

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

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

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

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

Caleb with his partner Jane.

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

Shocking diagnosis of Hodgkin’s lymphoma

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

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

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

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

Caleb with his family on vacation in Italy.

A stem-cell transplant the next level of defence

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

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

Caleb playing the accordion at his home.

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

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

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

Cancer and the mental health journey

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

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

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

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

Looking to the future

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

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

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

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

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

Categories: Mental Health

A CANCER JOURNEY

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

Published: February 2024

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

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

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

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

Understanding a stomach cancer diagnosis

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

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

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

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

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

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

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

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

Here to say thank you

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

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

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

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

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

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

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

Categories: Donors

A CANCER JOURNEY

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

Published: February 2024

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

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

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

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

Diagnosis of Hodgkin’s lymphoma flips world upside down

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

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

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

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

Heba during her treatment at The Ottawa Hospital.

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

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

Six months of chemotherapy with three young children at home

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

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

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

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

Desire to give back and support groundbreaking research

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

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

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

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

Heba preparing a lemon poppyseed loaf in her kitchen.

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

Categories:

A CANCER JOURNEY

Randy McElligott’s unusual reaction to his cancer diagnosis

Published: February 2024

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

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

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

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

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

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

Becoming symptomatic for multiple myeloma

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

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

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

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

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

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

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

Access to clinical trials at The Ottawa Hospital

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

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

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

Randy is an avid runner.

Maintaining a positive attitude

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

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

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

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

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

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

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

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

“It’s really an incredible life.”

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

Categories: Cancer, Cancer, Cancer, Cancer, Cancer, Clinical Trials, World-Leading Research

Published: January 2024

When Sean Heron attended Nipissing University in North Bay, he was in his element. This avid hiker enjoyed the area’s countless hiking trails and being outdoors. However, he also started to notice a shift in his mental health. That shift would eventually bring him back home to Ottawa and lead him to The Ottawa Hospital’s mental health team and a diagnosis of schizophrenia.
It was during Sean’s first year in North Bay that he started to have mental health challenges, including intrusive thoughts, diet and sleep disruptions, and waning trust in others. He realized something was wrong and took the initiative to get checked at a local hospital, where he was diagnosed with borderline personality disorder and PTSD. But Sean wasn’t convinced by this assessment. “I did my research, and I realized that what I had was nothing close to what those conditions were described as. But I kind of left it at that and just continued with my life,” explains Sean.
When things didn’t improve, he left school and North Bay and returned home to his parents’ house. He got a job in the grocery industry, but in 2021, he started to hear voices at home and at work. “One day when I was at work, I asked a colleague if they heard the same thing, because I couldn’t believe that I was hearing these things,” says Sean. “It was kind of concerning.”
Sean’s parents were more than a little concerned. “I could always see it in their faces that they were so worried — it was hard on my parents,” remembers Sean. “There were times where I lashed out. I started yelling at them because in my head, I had this delusion that they were part of this — part of the reason why I was feeling this way. I never talked to them like that before, so it was out of character for sure.”
Sean described the voices as high pitched. “It didn’t sound like human voices. It was like a dog whistle sort of thing. I would hear full sentences.”

Sean (left) with his family at Nipissing University.

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

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

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

— Dr. Sarah Brandigampola

Read our Q&A with Dr. Brandigampola

Learn More

Dr. Sarah Brandigampola, a psychiatrist at The Ottawa Hospital, recalls when she first met Sean. “He was very ill. He was lucky to have parents who knew something was going on and were trying to get him some kind of help — there were safety concerns — but up to that point he was told he wasn’t right for certain clinics,” explains Dr. Brandigampola. “So, by the time we met, Sean had been sick for at least a year, if not longer.”
It was February 2022 when Sean was diagnosed with schizophrenia — he had what’s described as auditory hallucinations, according to Dr. Brandigampola. “The experience of hearing people speak to you, even when you’re alone — it’s very distressing. Something important to recognize about schizophrenia is one of the first things that happens is people lose the ability to recognize there is something going wrong.”
This is known as a neurological phenomenon called anosognosia. “When people have anosognosia, it doesn’t matter how much you tell them the voices aren’t real or you’re not being followed, they can’t comprehend that,” explains Dr. Brandigampola.
It turns out, Sean’s early symptoms began when he was in North Bay. His first symptoms were very similar to depression, he couldn’t focus and started losing motivation to go to school and going out with friends. Dr. Brandigampola says this is very typical for the early stages of schizophrenia — people start to isolate themselves and lose interest in things. That can go on for months or years before the voices or delusions begin. It’s at that point, many people turn to drugs or alcohol to help alleviate that pain. That’s exactly what happened in Sean’s case.

Almost a sense of relief with diagnosis of schizophrenia

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

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

— Sean Heron

Now that Sean was enrolled in the On Track program, he had a full team of professionals ready to help him. As Dr. Brandigampola explains, it’s a recovery focused program. Remission is a step in the process to eliminate the symptoms, but recovery is the goal — to get the patient’s life back on track in terms of school, work, relationships, and hobbies. “We want them living a life that has meaning to them and where they’re pursuing their goals.”
The first step in the treatment is a medication to help quiet the voices. This can take some time to achieve, but Sean responded well. Things significantly improved when he went from oral medication to a monthly injection — it’s long-acting and patients don’t run the risk of forgetting to take a pill daily.

Sean and his dog.

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

Full team assembled to assist

Another member of Sean’s team included a neuropsychologist, who did cognitive assessments. This helped prepare Sean for a goal that was very important to him — returning to school.
Incredibly, in September 2022 — only seven months after his diagnosis — Sean enrolled as a part-time student at Carleton University majoring in psychology. “Given just how sick he had been and how he had been isolated for a long time, the groups helped get Sean active again and helped motivate him to ask himself, ‘What else do I want?’” explains Dr. Brandigampola.
Occupational therapists also helped set Sean up for success. “Melissa was my occupational therapist and she helped me get to where I needed to be to start school. She helped me set up appointments with academic advisors to see what kind of credits I needed to continue with. She even helped me pick my courses,” says Sean.

Maeve Blake is a social worker at The Ottawa Hospital.

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

How to set patients up for success?

Small goals are set for the patient to help put them on a path for success. “A big piece of the work that I did with Sean early on was behavourial activation. We worked on activity schedules and addressed how his substance use at the time was getting in the way of his recovery and his goals,” explains Maeve.
“Sean wanted to go back to school and finish his degree, so that’s what we worked on. At On Track, we focus on what’s important to the client,” says Maeve. “It’s not about us imposing goals on them but about getting to know them as individuals — help me understand your life and what’s important to you.”
There are common themes within patients, but it’s very much a uniquely tailored approach based on each patient’s needs, according to Maeve.

Sean with his family.

The first year of the program focuses on getting people well and stable, while the second year is about setting goals and helping the patient work towards them. Then by the third and final year, the care team can start to take a step back with a goal of transitioning the patient back to their family doctor.
This specialized program has worked incredibly well for Sean, who is currently in his second year of the program. Maeve says he’s always been internally driven to get better, and she admits that’s not always the case with some patients. “What was lovely to see as Sean’s symptoms became better controlled was how warm and genuine he is. Watching his true personality re-emerge was wonderful and uplifting.”

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

— Maeve Blake

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

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

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

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

— Dr. Sarah Brandigampola

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

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

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

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

Categories: Mental Health, Mental Health, Mental Health, New Campus Development, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Strengthening Critical Services

Published: December 2023

The way Katie Skidmore sees it, she was living a normal life for a 36-year-old. She had a full-time job in Information Management/Information Technology, and for four years, she worked for a mining company in Vancouver before moving back home to Ottawa last year to work from home. In April 2023, Katie ran a half-marathon, then only a couple of weeks later was diagnosed with a rare autoimmune disease. The diagnosis would change the course of her life and push her to advocate for advancements in kidney research.
Shortly after her race, while in Calgary on a work trip, Katie started feeling a bit off. “I was feverish and feeling rundown. It was a crazy busy time at work and so that’s what I attributed it to, but then I noticed my urine looked pink,” she recalls. “I didn’t think it was a urinary tract infection (UTI) and my friend suggested I might have a kidney infection.”
She went to a Calgary hospital where some initial tests were done, and they suspected a UTI and prescribed Katie some antibiotics. If symptoms changed, she was to consult her doctor when she returned home. “By the time I got back to my hotel room, I felt even worse and so I booked an earlier flight to Ottawa. Once I was home, I had kidney pain and my urine changed to dark red, so when I landed, I went straight to the hospital.”

Katie Skidmore

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

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

Alarm bells would soon sound

The next day Katie made another trip to her local hospital. Doctors advised her to continue her antibiotics. Five days later she returned to the hospital because she had stopped urinating altogether. At this point, she wasn’t alarmed — she believed she was healthy and there would be a solution soon.
But alarm bells would soon ring. Her creatinine levels — which monitor kidney function — had gone from 125 to 1,750 in the span of one week. “I didn’t know what that meant, but I thought, ‘This can’t be good.’ The next thing I knew, I had a catheter inserted and then I was put in an ambulance to be transported to the General Campus of The Ottawa Hospital,” says Katie.
What she didn’t know at the time — but her healthcare team suspected — was that her kidneys were failing because of an autoimmune disease.
“It was a Saturday night. I had many injections, there was a line put in my chest, and they did a biopsy of my kidneys,” remembers Katie. “I wouldn’t be able to start dialysis until Monday, but I was like ‘Rock on – get me better and out of here. I have a trip to France planned that I’ve got to get to.’ I was clueless of the severity of what I faced.”

Faced with a rare autoimmune disease

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

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

– Katie Skidmore

What is anti-GBM disease?

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

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

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

Learn more about kidney disease

The following months were beyond difficult for Katie. Mentally and physically, she felt like a completely different person. “I didn’t recognize the person I saw in the mirror.”
According to Katie, doctors call anti-GBM the worst of the worst for kidney disease. “It comes in out of nowhere and it kills your kidneys in days or weeks,” she explains. “It will leave your body in a few weeks or up to two years and never come back but does its damage. It leaves when there’s nothing else to kill.”
Katie’s been told the disease will likely be gone from her body in six to 12 months — it’s trending down but still active now.

After a week in the hospital, Katie went home with her parents and started to put the pieces together about what her new life would look like — dialysis three days a week and no cure for the kidney disease. That’s what led her to want to create more awareness for this illness and kidney research.
“I depend on medical intervention to stay alive, so I need to get the word out that kidney disease is prevalent,” says Katie. “Once you’re on dialysis, it’s for life. I want the world to know, I’m never cured. I’m not in remission. I’m a kidney disease patient for life.”

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

It’s for that reason, Katie hopes to see research advancements in kidney disease. While there is no cure, there is significant research happening at our hospital to better understand it and hopefully find a cure.
Dr. Manish Sood is a senior scientist, nephrologist, and former Jindal Research Chair for Prevention of Kidney Disease at The Ottawa Hospital. He recently published a study of more than eight million adults in Ontario that suggested even a modest loss of kidney function is associated with increased health risks. This could result in better ways to prevent chronic kidney disease and related conditions, especially for younger adults.
“The dogma is that healthy, young adults don’t need to worry about kidney function unless it drops to around 50% of the normal level,” explains Dr. Sood. “But our research suggests that even a more modest 20-30% drop may have consequences, and we may want to have earlier conversations about prevention and monitoring.”
When it comes to prevention, researchers are attempting to engage the community. Dr. Sood and his colleagues have developed an online calculator that can estimate a person’s risk of developing chronic kidney disease. Early-stage chronic kidney disease has no symptoms, and its onset can often be reduced with lifestyle modifications such as diet, exercise, and quitting smoking. This calculator may improve awareness and help people reduce their risk.

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

–Dr. Manish Sood

Care for dialysis patients across eastern Ontario and beyond

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

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

Katie Skidmore with her home hemodialysis equipment.

With the expertise of her care team, Katie felt she was in good hands. “There are really supportive people at dialysis — the care team is amazing.” But she admits, as a young patient, she didn’t see many people her age. “For example, I sat next to a 75-year-old gentleman who was great, but he said ‘I’ve lived my life. I can accept this, but I wouldn’t if I were you.’”
It’s conversations like that one, the support of the dialysis team, and Katie’s desire to be more independent, that led her to explore home hemodialysis. She started with a chest catheter implanted to start, and then training began. Her weeks were busy in preparation. “It’s 12 hours of therapy and then 12 to 13 hours of training for home hemodialysis — that started in mid-September. You learn everything from how to set up your machine, connect yourself, troubleshoot if there are issues, do your blood work, change your dressing, and disconnect,” explains Katie.
It takes a lot for a patient to prepare for, but the hospital provides all the support required so that patients can live more independently, which is exactly what Katie has hoped for.

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

– Katie Skidmore

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

Katie baking at home

Awaiting a kidney transplant

It’s expected she will be ready for a kidney transplant this summer — she just needs a kidney first. Katie is on a kidney transplant list, and she has people stepping forward to see if they could be a living donor.
As she adjusts to her new life, she is determined to plan for her future. “I have more life to live. I want to travel more, especially internationally. I’ve investigated Dialysis at Sea — cruise ships that offer nephrology care. I want to live my life as much as I can.”
But Katie is also here to remind people that she is still not better — her life is completely different today compared to six months ago.
“When people saw me acutely sick, and they see me now going to the gym and travelling across the country, they say it’s so amazing to see you healthy. But I’m not healthy. I’m on dialysis three days a week,” she says.

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

– Katie Skidmore

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

Katie with family and friends at the cottage

Katie with family and friends at the cottage

Categories: World-Leading Research, World-Leading Research

Published: November 2023

Tanya Di Raddo was 15 years old when she started having severe headaches — she was diagnosed with migraines. As time progressed, the headaches continued. Decades later, she turned to The Ottawa Hospital and was diagnosed with not one, but two illnesses — a brain tumour and multiple sclerosis (MS).
By her late 20s and early 30s Tanya was married and had two children, and the headaches remained a constant part of her life. As her kids grew, she faced a difficult time when her son began suffering from mental health challenges. He was later diagnosed with first-episode psychosis, so she pushed her health issues to the side and persevered.
As time progressed, the headaches worsened — there were times when Tanya couldn’t lift her head off the pillow because the pain was so debilitating. It was still considered a migraine, but she also started to notice something wrong with her right hand. “I don’t know if I’d describe it as tremors, but my right hand would form a claw,” remembers Tanya.

Shocking discovery of a brain tumour plus an MS diagnosis

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

Tanya and her cat, Zeus.

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

— Tanya Di Raddo

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

Read our Q&A with Dr. Fahad Alkherayf

Learn More

MRI results showed both MS lesions and a brain tumour. “I knew something big was wrong for a long time, so in some ways, the MS diagnosis made sense, but the discovery of a tumour as well was a shock,” explains Tanya.
She was immediately referred to Dr. Fahad Alkherayf, a leading skull base neurosurgeon at our hospital. The MRI from mid-summer 2021 showed a large tumour at the back of her brain. “It was a three-and-a-half by five-centimeter mass — the size of a small orange. It was a meningioma, which is a benign tumour that is slow growing, but it was putting pressure on her brainstem and affecting her neurological function,” explains Dr. Alkherayf.
Due to the size of the tumour and the impact it was having on Tanya’s life, Dr. Alkherayf believed surgery was needed within a few months.
In the meantime, she turned to The Ottawa Hospital’s MS Clinic where she met Dr. Mark Freedman, a world leader in MS treatment and research. “She was referred to us after having her vision affected back in mid-2021. We proceeded to confirm a diagnosis of relapsing-remitting MS and then got her onto effective therapy as soon as possible,” explains Dr. Freedman.

A plan for specialized brain surgery

As her MS treatment got underway, surgery to remove the tumour was scheduled for early November. According to Dr. Alkherayf, the surgery carried significant risk.
“The tumor was pressing at the back of the brain — which we call the cerebellum — as well as on the brainstem.” he says. “The brainstem is the main structure which controls a person’s ability to breathe, walk, and state of consciousness.”

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

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

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

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

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

— Dr. Fahad Alkherayf

Neural monitoring, with what’s known as interoperative neuromonitoring, is an important part of this type of specialized surgery. It allows neurosurgeons to watch the patient’s brain and brainstem functions while attempting to remove the tumour. This is where The Ottawa Hospital excels.
“We’re lucky in that we have good support from the hospital where we can do two or three surgeries at the same time with the ability to monitor the patient,” says Dr. Alkherayf. “It’s thanks to having a specialized team who work closely with our neuro-anesthesiologists to operate this equipment that we’re able to provide this technique.”

The Ottawa Hospital has invested to support this expertise, as it can be challenging to have the right people to operate specialized equipment and interpret the information.
During Tanya’s operation, the surgical team sent a signal through the brain to stimulate her muscles to ensure they were responding during the operation. “Even though she was asleep, we’re still able to look at the function of the brain and brainstem, as if she’s awake,” says Dr. Alkherayf.
Additionally, the system also helps the surgical team monitor the cranial nerve, which controls swallowing, for example. This prevents any possibility of damage during the surgery. If the nerves become irritated during the operation, the surgical team gets a signal.
“When that happens, we stop immediately and change our course of action during the surgery,” says Dr. Alkherayf.

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

— Dr. Fahad Alkherayf

Image Content Disclaimer
The following image contains content that may be unsettling or sensitive to some viewers.
During an almost eight-hour surgery, the large tumour pressing on Tanya’s brainstem was completely removed.

Previous

Next

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

For Dr. Alkherayf, it’s not only about saving a life, but also about maintaining quality of life. He acknowledges it puts more stress on the team knowing they are caring for a young person, who has many years ahead of them.
“A good analogy is a bomb squad. They want to disable and remove the danger without causing any problems or damage,” he says. “That’s what we’re doing when we remove a tumour like this. We want to remove it without causing any other damage that could impact the patient’s life.”
The good news for Tanya is the whole tumour was removed during the almost eight-hour surgery. This provided her relief from the excruciating headaches she suffered, and her vision has improved, but colour is not crisp yet. “It’s like an older TV. It’s not 20/20, but it’s better than it was,” explains Tanya.

Looking forward

It’s been two years since that complex surgery with no signs of recurrence to date, and she’ll be closely monitored by Dr. Alkherayf for up to 10 years.
Tanya also continues to be in the care of Dr. Freedman for her MS. She has some challenges with her mobility and regularly uses support to get around, and MS flare-ups continue to impact her day-to-day living.
“I’m doing better today, but cognitively it impacts my life,” she says. “It’s the little things we take for granted that I notice, like leaning forward to make a meal or cutting something. The numbness in my fingers makes it difficult, and sometimes my leg will give out.”
The reality of facing two serious illnesses at the same time is not a uniqueness Tanya was aspiring for or ever thought she’d face, but she’s grateful to have access to the best treatment options available, from complex surgery to ongoing, compassionate care.

Tanya Di Raddo with her husband and daughter.

Categories:

Posts navigation

Older posts