SPRING 2021
World-leading cure for kids Learn how the Alberta Children’s Hospital is curing kids like Denis of a life-threatening blood disorder.
New cures give new life Shortly after her first son, Crispin, was born 23 years ago, Isabelle wept when she learned he had sickle cell disease (SCD) – a life-limiting and painful blood disease that she remembered had claimed the life of a young girl from her hometown in Africa. While she was grateful for the team at the Alberta Children’s Hospital who provided exceptional care for Crispin, it was devastating to watch him suffer and endure countless hospitalizations and transfusions to manage his condition. “It was so hard in those early days,” says Isabelle. “I didn’t know if he would survive it all.” Imagine the heartbreak when she learned nine years later that her third son, Denis, also had sickle cell disease. “Crispin was so upset for his new baby brother. He didn’t want him to go through what he did,” recalls Isabelle. Fortunately, as Denis grew up, he had fewer painful crises than his older brother, but the worry and concern
Did you know? Children are doing so well with this gentler form of BMT, the team is investigating the possibility of offering the treatment on an outpatient basis. This means a life-threatening disease could be cured with a simple infusion in the clinic and patients could go home that day!
JUST 4 KIDS – SPRING 2021
about the future for both her boys was always in the back of her mind. Sickle cell disease afflicts approximately 5,000 Canadians. Malformed red blood cells – shaped like crescents or sickles – get clogged in blood vessels causing unbearable joint pain, lung complications, and the risk of stroke, heart disease and blindness. Historically, it has been treated with medication to increase red blood cell production along with transfusions of healthy blood. However, those treatments become less effective over time and multiple transfusions could lead to other serious complications from toxic iron build up in the liver. Specialists at the Alberta Children’s Hospital are leading ground-breaking work that has unlocked a lifechanging and life-saving cure for many children with sickle cell disease. Dr. Greg Guilcher is a clinician researcher and transplant specialist with the Hematology, Oncology and Transplant (HOT) Program. “While a form of blood and marrow transplantation (BMT) has been offered previously as a treatment option for sickle cell disease, many parents considered the risks too high and the long-term side effects too great to make that choice for their child,” explains Dr. Guilcher. High doses of chemotherapy required to wipe out the child’s immune system can cause complications ranging from the development of another potentially life-limiting chronic condition (graft vs. host disease) to infertility to life-threatening transplantrelated infections. Having kept a close eye on the evolution of successful treatment for adult
SCD patients using low doses of radiation and no chemotherapy before transplant, Dr. Guilcher was eager to offer this option to children and teens in his care.
First in the world Thanks to years of community investment in research and technology in the HOT program, the Alberta Children’s Hospital was well-positioned to become the first in the world to offer this milder BMT to young people. “Children who have a matched sibling donor are able to tolerate this form of transplant with very few side effects,” says Dr. Guilcher. “The lower toxicity of this treatment plan makes this a much easier choice for families to consider.” In 2013, Dr. Guilcher oversaw the world-first delivery of this less-intense transplant to a teenaged girl in his care. She was 100% cured of her disease. Since that time, the hospital has provided this new treatment to another 25 children in our community. They are all now living lives free of SCD. Based on these results, Dr. Guilcher is now the Senior Investigator for a multi-centre international clinical trial of this low-intensity transplant through the Sickle Cell Transplant Advocacy & Research Alliance (STAR). “I am receiving calls regularly from hospitals around the world looking to replicate the kind of success we are having with our patients,” says Dr. Guilcher. “It’s very gratifying to know that our work is having this kind of global impact.” Isabelle and her husband, Joseph, had mixed feelings about pursuing a transplant when they learned that their middle son, Elisee, was a perfect
donor match for Denis. “Since Denis wasn’t suffering as much as Crispin, we weren’t sure if it was necessary,” explains Isabelle. “But then we realized that we couldn’t predict the future and that sickle cell disease could be silently killing our son. We knew we needed to do it.” After Dr. Guilcher explained the entire transplant process to the boys, their nerves were settled and they were ready to proceed. Just as the pandemic was starting to unfold last year, Denis underwent the procedure at the Alberta Children’s Hospital. After several weeks of regular follow-up, the family was thrilled to learn that the treatment was a complete success. Denis is now cured of his disease and will have every chance to live a full, pain-free life. “It’s pretty amazing that I don’t have to worry about it anymore,” says Denis. Instead of filling his days with medications, transfusions and clinic visits, he is happy to have more time to perfect his basketball skills.
Thanks to BMT experts at the Alberta Children’s Hospital, 14-year-old Denis is cured of his Sickle Cell Disease.
Another first on the horizon While Dr. Guilcher is pleased that this lower-intensity transplant has been a game-changer for his SCD patients, he knows there’s more work to do. Patients like Crispin – without a perfect sibling match – motivate him to keep pushing the science. “If half-matched transplants become safer and more standard, more young people like Crispin will be cured. We can only get there with more research and innovation.”
With recognized expertise in half-matched BMT, the HOT team is working to become the first Canadian centre to offer this form of transplant to SCD patients as part of a European trial currently underway. “Dr. Guilcher is our hero,” says Isabelle. “We are so grateful that he’s here and that the community has supported this amazing team. Denis is cured because of them. And with their new research, Crispin may be someday, too.”
“I am receiving calls regularly from hospitals around the world looking to replicate the kind of success we are having with our patients.” — Dr. Greg Guilcher, researcher and transplant specialist
CHILDRENSHOSPITAL. AB.CA
Alberta Children’s Hospital epilepsy specialists have eased baby Cohen’s parents worries with their expert care.
Brainwave breakthrough
New discovery helps predict seizures Witnessing a seizure can be terrifying, especially if it happens to your own child. One in 10 children will experience a seizure. About 50% will never have another while the other 50% of those kids will go on to develop epilepsy. Meanwhile, 100% of their parents will worry – not knowing which half their child falls into and whether their development or future will be affected long-term. A breakthrough discovery by the
JUST 4 KIDS – SPRING 2021
Director of Pediatric Epilepsy at the Alberta Children’s Hospital is helping to change that. Dr. Julia Jacobs-LeVan and a team of researchers have uncovered a new way to predict a child’s likelihood of developing epilepsy after a first seizure. “Families of children who have experienced a seizure often struggle with anxiety and not knowing what to expect,” says Dr. Jacobs-LeVan who is also a clinician-scientist at the Alberta
Dr. Julia Jacobs-LeVan
Children’s Hospital Research Institute and Hotchkiss Brain Institute at the University of Calgary. “They are in a constant state of worry, wondering if and when another seizure will strike and it can become all-consuming.” Dr. Jacobs-LeVan and her team recently learned there is a much wider spectrum of brain frequencies than originally thought. They also discovered it was possible to measure these frequencies using a non-invasive
electroencephalogram (EEG) on a person’s scalp, rather than having to insert a diagnostic tool inside the head. These readings are especially accurate in children, says Dr. Jacobs-LeVan, as their scalps are thinner, so it is easier to pick up the oscillations happening in their brains. “We can look at the oscillations and see how often they occur,” she says. “The higher the rate, the higher the likelihood the child will develop epilepsy and that their first seizure won’t be an isolated incident.” This discovery will allow specialists to give families a more accurate prognosis and prepare them for what to expect. “We want to provide individualized diagnostics and treatments to all families facing seizures, regardless of the severity or rarity of the condition in each case,” says Dr. Jacobs-LeVan. “We know we can offer better accuracy and better guidance.” Hayley and Greg McKenzie know all too well the fears and uncertainties that accompany seizures. After waking from a nap, their four-month-old son, Cohen, began to twitch and his eyes seemed slightly wayward. When the twitching continued, Hayley took him to the hospital where she learned their son was experiencing focal seizures. “When people picture seizures, they often think about grand mal seizures, which are very visible and violent,” says Hayley. “What we learned is that seizures can be subtle, even unrecognizable from the outside, and all seizure activity can be serious, regardless of what you see.” Baby Cohen was hooked up to an IV and given anti-seizure medication to stabilize him while specialists at the Alberta Children’s Hospital worked to determine what was causing the unusual and potentially dangerous activity in his brain. After a CT scan,
“We are thankful for the ongoing research into the diagnosis and treatment of seizure disorders so families like ours can also have quick answers and know what steps to take next.” — Hayley McKenzie, Cohen’s mom an EEG and an MRI, the gravity of the situation began to sink in. “It was extremely distressing – I have never been more scared in my entire life,” says Hayley. “The fear of the unknown was absolutely terrible.” Fortunately, she didn’t have to wait long for answers. Within hours of the MRI, Hayley met Dr. Jacobs-LeVan, who explained Cohen had SturgeWeber syndrome – a rare genetic disorder that had caused a vascular abnormality on his brain. Although Cohen may eventually need surgery, for now his seizures can be managed with medications under the careful watch of his parents at home. Cohen also has a wonderful team of physical and occupational therapists and a geneticist, all of whom collaborate with Dr. Jacobs-LeVan and contribute to his comprehensive care. For Hayley, having such a quick diagnosis and knowing there was a talented team in place to help care for her son was a gift. “I felt like the path we were going to take as a family was right there for us,” she says. “We know no stone was left unturned and were given all the information available, which is invaluable. We are thankful for the ongoing research into the diagnosis and treatment of seizure disorders so families
like ours can also have quick answers and know what steps to take next.” Recruited from Germany in 2019, Dr. Jacobs-LeVan says she was drawn to the Alberta Children’s Hospital because of its strong epilepsy, brain surgery, neurocritical care and pediatric stroke programs – all of which have been substantially supported by community funding. Working with specialists across the hospital, Dr. Jacobs-LeVan’s team plans to accelerate ground-breaking research and develop individualized treatment and potential surgical approaches for all children receiving epilepsy care at the Alberta Children’s Hospital. Their goal is to contribute to more advancements and better predict, treat and even prevent epilepsy for children in our community and beyond.
Did you know? More than 3,000 children rely on care from epilepsy specialists at the Alberta Children’s Hospital each year.
CHILDRENSHOSPITAL. AB.CA
Powering through pain
Calgary specialists help a boy from Newfoundland get his life back Lori Power and her husband, Kris Connors, would have travelled to the ends of the earth to help their son, Joshua. While they didn’t have to go quite that far, the family did fly more than 3,500 km across the country – from their home in Newfoundland to the Alberta Children’s Hospital – to finally get the help Josh needed to overcome debilitating pain. When Josh was eight, he began complaining of a sore leg. Lori and Kris thought he had injured a muscle. However, in the days ahead, instead of subsiding, the pain worsened. After dozens of appointments and tests, doctors in Newfoundland were unable to find an explanation for what was causing the mysterious pain. Josh’s condition declined quickly. He was no longer able to walk and relied on crutches or a wheelchair to get around. The pain – and now spasms, too – became so agonizing that he was unable to get out of bed, let alone go to school. As his mobility deteriorated, so did his outlook. His parents watched helplessly as their son grew defeated and withdrawn. “As a parent, you want to provide the best life you can for your children,” says Kris. “Watching him miss out on things was terrible.” After about nine months of investigation, they received a diagnosis: linear scleroderma – a rare disease that causes the skin and connective tissue to tighten, resulting in severe pain. Josh was admitted to hospital and began drug and steroid infusions to prevent the disease from spreading to other parts of JUST 4 KIDS – SPRING 2021
his body. However, the damage in his leg was irreversible. While grateful to know what they were dealing with, Lori and Kris were consumed with worry about Josh’s future. Fortunately, they met an anesthesiologist who had previously worked at the Alberta Children’s Hospital. He told them about the Intensive Pain and Rehabilitation Program (IPRP) – part of the community-funded Vi Riddell Children’s Pain and Rehabilitation Centre. The only program of its kind in Canada, IPRP is designed to help kids and families understand and manage debilitating chronic pain. That was all Lori and Kris needed to hear. They were desperate to find relief for their son. Josh was admitted to the program and in February 2020, he and his parents packed up and headed to Calgary for three weeks. Josh’s schedule included a wide range of proven therapies for pain, including art and recreational therapy,
physiotherapy, occupational therapy, psychology, family therapy and academic support. He also worked with a nurse and an anesthesiologist almost every day. He and his parents learned that while the pain might never go away, Josh could develop coping mechanisms to control it and still have a great quality of life. Although it was hard work, he was excited to participate in the specialized treatment. “There was a lot of physical stuff, but a lot of it was getting yourself into the mindset where you could recognize negative things and stop them,” says Josh. Lori and Kris noticed changes in both his physical abilities and outlook almost immediately. “I saw a dramatic change in his confidence,” says Kris. “You could tell he was starting to see there was a path forward.” On top of helping him learn to manage his pain, the program helped
“It’s like someone flipped a switch and turned that part of his brain on. We were amazed by his talent. He draws regularly now.” — Kris Connors, Josh’s dad
Thanks to the help he received in the Intensive Pain and Rehabilitation Program, Josh lost his need for a cane and found his hidden artistic talent.
Did you know? IPRP is the only program of its kind in Canada and is part of Vi Riddell Children’s Pain & Rehabilitation Centre at the Alberta Children’s Hospital, funded by generous community donations.
Josh uncover some hidden creativity. His parents were surprised when he met them after his first day of IPRP holding some impressive drawings from his art therapy session. “It’s like someone flipped a switch and turned that part of his brain on,” says Kris. “We were amazed by his talent. He draws regularly now.” It has been just over a year since Josh graduated from IPRP and returned to his life in Newfoundland. Incredibly, it now looks pretty similar
to what it was before that fateful day when he first felt pain in his leg. He is back at school, playing basketball and riding his bike – all things that were once taken from him with the onset of his disease. Lori, Kris and Josh are incredibly grateful to the generous strangers who helped make the pain and rehab centre at the Alberta Children’s Hospital possible. Describing IPRP as “life-changing” for the entire family, Lori says, “It gave us our son back.” CHILDRENSHOSPITAL. AB.CA
Transformational tools High-def cameras revolutionize surgery for kids Just like his big brother, Benjamin Axon endured surgery on his lung and has the scars to prove it. The difference is his are nearly invisible. Seventeen-year-old Benjamin was home working on his computer last November when he suddenly felt a “pop” in his chest, like an elastic band breaking, followed by a flood of pain. His family took him to the Emergency Department at the Alberta Children’s Hospital where experts determined he had experienced a pneumothorax – a spontaneous collapse of the lung. His family was familiar with the term. Both Benjamin’s mom, Deborah, and his older brother, Matthew, have had the same condition. Doctors first tried inflating Benjamin’s lung using a tube inserted into his chest, but when that did not help, they took a CT scan to determine why. Benjamin had lung blebs, which are little pockets of air that can form on the lung. When the pockets burst, the lung can collapse. Thanks to community support, the surgery team was equipped with specialized instruments including high-definition (HD) surgical cameras that enabled them to remove the pockets of air on Benjamin’s lung carefully and accurately before they could do any more harm. Then, the lung could reinflate. Surgeons at the Alberta Children’s Hospital are national leaders in minimally-invasive procedures which, unlike open procedures, are performed using smaller incisions sometimes just a few millimetres in size. By inserting HD surgical cameras through these tiny openings, surgeons can explore, repair or remove what is required for
JUST 4 KIDS – SPRING 2021
each child with a view that is more precise than the naked eye. Years of community investment have helped outfit all of the hospital’s operating suites with HD technology that has revolutionized the surgical field. Thanks to generous support of the 18th annual Country 105 Caring for Kids Radiothon in February,
the hospital will acquire four new upgraded cameras so surgeons can perform even more minimally-invasive procedures for a wider range of pediatric conditions. “There is a long and growing list of procedures that we have become really skilled at doing through tiny incisions,” says Dr. Paul Beaudry,
The Country 105 Caring for Kids Radiothon raised a remarkable $3 million this year! Thank you to the Crist Family Foundation for its million dollar match, to our generous sponsors for their ongoing support and to everyone who called in or donated online.
Benjamin shows off two tiny scars from his two surgeries at the Alberta Children’s Hospital.
“Benjamin was out of bed just three or four hours after the surgery. He was standing up, moving around and he had the tiniest little scars.” — Deborah Axon, Benjamin’s mom Section Chief of Pediatric Surgery at the Alberta Children’s Hospital. “We rely on highly sophisticated technology to be able to conduct those delicate operations. These cameras are critical. They really are our eyes and enable us to see a child’s anatomy more clearly so we can execute every step of surgery safely and efficiently.” Having HD capability means minimally-invasive surgery is now an option for more patients. In addition to minimal or virtually no scars, smaller incisions also mean children experience less pain and blood loss and reduced risk of infection. “Benjamin was out of bed just three or four hours after the surgery. He was standing up, moving around and he had the tiniest little scars,” says Deborah. She was amazed by how fast Benjamin recovered compared to his older brother, who, five years ago, went through the same procedure at a hospital in England where they were living at the time. Although his operation was also considered minimally-invasive, that hospital used a camera system that was much older. His surgery also resulted in a stay in the Intensive Care Unit. “It was like night and day,” Deborah says. While Matthew’s scars measure about two or three centimetres in length, Benjamin’s are about half that size–if you look close enough to find them. When Benjamin’s lung failed to stay inflated and he had to be readmitted a few weeks later, Dr. Beaudry was able
to perform a final surgery using the same three incisions. “Even after two surgeries, Benjamin has the same three scars and they are nearly invisible,” Deborah says. “He was back to the slopes again with his snowboard in the winter and is back to his regular teenage life. We are so grateful to our surgeons and the generous people of this community for helping him get there.” Dr. Beaudry says having top-of-theline equipment in their hands keeps his team at the forefront of minimallyinvasive surgery and gives them – and the child’s family – confidence they can do their best work. “We can’t thank our community enough,” he says. “Being able to upgrade to the newest technology allows us to continue to provide the best possible care and perform the safest, most effective operations for children and babies.”
YOU can plan an event to help the kids! When you organize an event or campaign to support the Alberta Children’s Hospital Foundation, you help ensure children in our community have access to the best care possible when they need it most. Whatever your inspiration for supporting the Alberta Children’s Hospital – whether you have a personal connection or know someone who does – the social reward, learning opportunity and connections with new people can create an incredible experience for everyone involved. To learn more and get your event fundraising toolkit, please contact us at kids@achf.com.
Dr. Paul Beaudry
CHILDRENSHOSPITAL. AB.CA
Strengthening mental health support More health care providers equipped to help kids during COVID-19 Thanks to generous community support, a program called CanREACH has enabled hundreds of primary care providers across the province to receive specialized training in diagnosing and treating mental health concerns in children and youth. Family physicians, nurse practitioners, social workers and pediatricians are among the professionals who benefit from this intensive training. Family doctors receive limited training in youth mental health during medical school. This has resulted in many feeling unprepared to treat or even recognize a mental health condition in the early stages. Through a three-day interactive and intensive conference followed by a six-month clinical care distance-learning fellowship, CanREACH provides trainees with the tools they need to feel confident in
identifying and overseeing a therapy plan for families with a child or teen facing a mental health challenge. Last spring, CanREACH coordinators found themselves forced to quickly change plans for their spring training session due to the COVID-19 pandemic. They transitioned the in-person conference to an online platform and were able to offer two sessions last fall, providing the full training to an additional 82 physicians and frontline workers. The course also included information on how to screen for conditions such as anxiety and depression when meeting with a patient via phone or video conferencing rather than seeing them in person. Feedback from the virtual training was incredibly positive. Five online sessions are being offered in 2021, with three already fully-subscribed.
On the front lines There are people who travel to Dr. Beren Hollins’ family practice from more than an hour away to see him. That’s because, thanks to his CanREACH training, Dr. Hollins is well equipped to treat mental health concerns. That wasn’t always the case, though. “Family physicians often feel very undertrained in this area,” he says, adding it’s estimated that doctors won’t pick up on depression in about 50% of children who are experiencing symptoms. “CanREACH has filled a void and it absolutely changed my practice,” says Dr. Hollins. “Suddenly I felt confident to see these families, diagnose them and come up with plans.” Feedback from his patients’ parents, teachers and principals has been incredibly encouraging. Dr. Hollins believes so deeply in the benefits, he is now part of the CanREACH faculty of educators and helps deliver training to his fellow frontline workers. “I love seeing these practitioners coming from all different areas, developing community and learning to speak the same language,” says Dr. Hollins. “It is transforming youth mental health care in our province.”
Even before the uncertainty of the pandemic took hold, donors like you recognized the need to provide more mental health services and support for children, teens and their families. In November 2019, construction began on the new Centre for Child & Adolescent Mental Health in the northwest Calgary community of Hounsfield Heights. For the latest information, visit buildthemup.ca JUST 4 KIDS – SPRING 2021
L-R: Peter, Lana, Justin and Carter Cissell enjoy a hike together.
Planting seeds for the next generation Farming family invests in future cures
“We have relied on the Alberta Children’s Hospital for things like broken bones and concussions – nothing major – but we were so grateful that the care and expertise was there for us when we needed it. We felt very blessed to have that hospital close by,” says Lana. “I really feel for families who have faced things much more challenging than we have, and our hope is that anyone who encounters health issues with their own children will have the same experience we did.” Inspired by the kindness and expertise they witnessed during their sons’ various hospital visits, Lana and Peter made a special commitment several years ago. They decided to leave a Legacy Gift to the Alberta Children’s Hospital in their Will. This gift – also known as a Bequest – will benefit future generations of families by advancing the research and technology available to specialists. It’s something the Cissells feel strongly about – leaving a legacy of “top-notch care” for families of sick and injured children years down the road. They have also discussed the gift with their sons, now 24 and 21. They hope to have inspired their boys to remember the importance of giving back to our community. “We always want the Alberta Children’s Hospital to be the best it can be, to be leading-edge, to have the most innovative procedures and continue to offer such wonderful family-centred care,” says Lana. “We know it takes money to do that and this is something we can do to ensure that quality of care continues long into the future.”
For a quarter of a century, Lana and Peter Cissell have owned and operated grain farms – one northwest of Crossfield and another in northern Alberta. Both from farming families, it’s what they know, what they’re good at and where they feel at home. Despite the long days and hard work that goes into managing a farm operation, Lana and Peter also have some other very important roles: Mom and Dad to their two sons, Carter and Justin. Living on a farm in rural Alberta meant that if the boys ever needed medical attention, they had to drive into Calgary for help. Although they made Have you considered leaving a gift to the Alberta several trips from outside Crossfield to the Alberta Children’s Hospital in your Will? For more information Children’s Hospital over the years, they feel lucky on becoming a member of our Family of Hope, please neither of their sons ever faced serious illness or visit childrenshospital.ab.ca/LegacyGiving injury. However, they know that is not the reality for everyone.
CHILDRENSHOSPITAL. AB.CA
Support upcoming community fundraising events & campaigns For more information about all the exciting events helping kids at the Alberta Children’s Hospital, please visit childrenshospital.ab.ca/Events Lowes Fundraising Campaign March 29 – May 2
CRESCENDO Dream Vacation Raffle May 3 – 31
Costco Spring Fundraising Campaign April 26 – May 30
Sobey’s ‘A Family of Support’ Fundraising Campaign Sept. 16 – 30
Walmart Spring Fundraising Campaign April 29 – June 5 Million Reasons Run May 1 – May 31
Fall Harvest Sale Sept. 11 – 12 RBC Race for the Kids Oct. 16 – 17 Dairy Queen Miracle Treat Days Oct. 26 – 28
Tickets on sale May 20! This year’s Children’s Hospital Lottery will help kids and teens receive specialized mental health care through the Alberta Children’s Hospital “Acute at Home” program, It provides intensive therapy and support for youth at home – safely, effectively and with the support of their entire family. Watch your mailbox or visit childrenshospitallottery.ca
Licence#570580 KinWin50 licence#570581
Return undeliverable Canadian address to: 28 Oki Drive NW Calgary, AB T3B 6A8