Just 4 Kids Fall 2019

FALL 2019

Rotary Flames House Marking 10 years of providing compassionate care and making a remarkable difference in the lives of thousands of families in our community.

Read about the Roelofsen’s journey at Rotary Flames House.

10 years of compassionate care

Rotary Flames House

JUST 4 KIDS – FALL 2019

Ten years ago, on a sunny fall day, a crowd of generous donors, hospital experts and dignitaries, along with patients and families, gathered to celebrate the opening of Rotary Flames House – the first pediatric hospice in Alberta and one of only six in the country. While it was a joyful occasion, everyone in attendance agreed that the words “hospice” and “children” should not have to be used in the same sentence. However, they also knew that providing a home for much-needed respite for families and compassionate end-of-life care for children was going to make a remarkable difference in the lives of thousands of families in our community.

For more than a decade, a team of trained healthcare professionals at Rotary Flames House has offered specialized care – 24 hours a day, seven days a week.

“Everyone at the House is committed to ensuring that each child and family’s physical, developmental, emotional, spiritual and cultural needs are met in a sensitive and caring manner,” says Karen Butel, manager of Rotary Flames House and Pediatric Palliative Services in Alberta Health Services – Calgary Zone. “From doctors and nurses to child life specialists, art and music therapists, social workers, volunteers and counsellors, our team makes it their life’s work to ensure a family’s time with their child – whether measured in years, months or days – is treasured. It’s an honour to walk alongside them on their journey.”

Finding light The Roelofsens are one of the many special families touched by the care provided at Rotary Flames House. As she reflects on their time at the House with their daughter, Lesley paints a beautiful picture of the compassion and grace they experienced during those unimaginable days…

I will always remember the day my husband Patrick and I found ourselves sitting with the Palliative Care Team at Rotary Flames House as an oncologist explained our daughter Thea’s prognosis. The cancer was too aggressive. They had exhausted all treatment.

I just remember being so angry. While we had received our share of bad news throughout Thea’s cancer journey, there was always something else to try. On that day, learning that our 8-year-old daughter was now “palliative,” it felt like we were giving up. I looked around at the people who were going to be with us as our child passed away, and I just felt anger. Of course, what we quickly learned in the days and weeks that followed, was that those people were actually going to help Thea to live – to truly live as fully, and as richly, and as beautifully as she could – for as long as she could. And she did.

Thea was able to enjoy most of the summer at home, thanks to the specialized team of palliative care physicians at Rotary Flames House. They expertly managed the delicate balance between controlling her pain and having her feel well enough to function coherently.

Thea developed a new tumour on her spine that was causing her pain, so she underwent five rounds of radiation to slow its growth and provide her some relief. Remarkably, on day three of her radiation treatment, on four pumps of pain medication, and with her amazing nurse from Rotary Flames House as our medical escort, Thea was able to make it to see Garth Brooks at the Saddledome. It was her very first concert! She was over the moon to be there waving her ‘My First Concert’ poster in her wheelchair – which was all decked out in sparkly lights!

Thea’s determination was one of her many gifts. And she was determined to make it to school as much as she could – specifically for the Remembrance Day assembly where her Grade 3 choir was to sing the song “Let There Be Peace On Earth.” They’d been practicing for weeks, and even though her little body had grown weaker and she was so tired, Thea was not going to miss her big performance.

The assembly was on a Friday morning.

Patrick had to carry her into her school and amazingly, Thea stood up on that stage with her classmates and belted out her song in front of the whole school. Cheering her on in the audience with us were some of her caregivers from Rotary Flames House. I remember just watching her in complete awe. It was a truly magical moment.

That afternoon she played with her friends on the school playground for the very last time.

Three days later, Thea passed away. She did so in my arms, at our second home, Rotary Flames House, surrounded by her family, with dignity and in peace.

As we look back, we truly understand that Thea could not have held on and lived so fully and so joyfully without the remarkable care she received from the team at Rotary Flames House. Somehow, they made the unimaginable, beautiful.

Thea’s name means “Goddess of Light: the sun, the moon and the dawn.” She will continue to be our bright and shining light, and a beacon for the countless many whose hearts she has touched. We believe that Rotary Flames House provides the same kind of light for families and that in their darkest of days, during heartbreaking struggles and incredible grief, they, too, will find a place where comfort and peace can be found.

Our family, Patrick, myself and Brynn, is so grateful for Rotary Flames House and its supporters. It gave us time, it gave us quality, it gave us life and it means everything to us.

– Lesley Roelofsen CHILDRENSHOSPITAL. AB.CA

Changing Practice, Changing Lives New portable ventilator funded through the Country 105 Caring for Kids Radiothon helps critically-ill children get moving toward recovery In any given week, there may be as many as 10 children in the Pediatric Intensive Care Unit (PICU) in severe respiratory distress. To stay alive, they need breathing tubes and ventilators to keep air flowing into their lungs. Traditionally, children who were intubated were kept sedated and asleep for days until they no longer required intensive breathing assistance. This was often an extremely difficult time for families as they sat bedside, unable to interact with their child and gauge how they were doing.

Prompted by new research suggesting that the longer a child is sedated, the higher their risk of experiencing frightening hallucinations, post-traumatic stress disorder, or long-term learning difficulties, the PICU team at the Alberta Children’s Hospital launched a pilot program to allow children to be more awake and comfortable while intubated.

Laurie Lee is the Nurse Practitioner who heads up the pilot. “Our PICU team firmly believes it is no longer good enough for kids to simply survive the PICU. They need to have a better quality of life once they go home. While it may take a lot more work to make this possible, we are committed to giving our kids the best possible outcomes.”

With a coordinated effort from physicians, nurses, respiratory therapists, child life

JUST 4 KIDS – FALL 2019

specialists, music therapists and the entire PICU team, children are being kept alert and occupied while intubated – sitting on the edge of their beds, even walking or wheeling around the hospital. As a result, they are healing faster, with fewer long-term effects. In fact, reducing sedation is helping to reduce agitation and enabling kids to be extubated much sooner.

Just two years ago, only 20 percent of intubated children would be awake on the unit. In order to move children out of their rooms, several staff members were required to transport a bulky critical care ventilator with limited battery life and several large and cumbersome oxygen supply tanks.

“These portable ventilators have made it possible for more kids to have a much better recovery.”

– Laurie Lee, nurse practitioner With help from the new portable ventilator funded by Radiothon donors, the PICU is a much busier place. Today, 80 percent of intubated patients are up and around. The new ventilator can be managed by one staff member, has a five-hour battery life and only requires one oxygen tank. Walks around the unit and even down the hall to the fish tank are now the norm for children on life-saving breathing support.

“Seeing children leave the unit earlier and stronger is very gratifying,” says Lee. “These portable ventilators have made it possible for more kids to have a much better recovery.”

Caleb’s story Born with Cystic Fibrosis (CF), 14-year-old Caleb has relied on care from the Alberta Children’s Hospital his whole life. This past spring, he caught a viral infection that put him in the PICU. The combination of his CF and a very high fever compromised his breathing to the point that he needed specialized one-on-one critical care.

By the end of June, he had missed six weeks of school. Understandably, he was feeling low and missing his friends. Thanks to the portable ventilator and a very determined team of PICU nurses, physicians and respiratory therapists (RT), a plan was devised to get Caleb to the last day of Grade 8. Although Caleb was not intubated, he was dependent on the ventilator for high-flow oxygen support. Without the new portable ventilator, multiple tanks of oxygen would have been required, making even a short visit impossible.

On the last day before summer break, a smiling Caleb arrived at school supported by an RT and nurse, who he referred to as his

“entourage.” Seeing him arrive by ambulance caused quite a commotion at first, but within minutes Caleb and his friends were busy catching up. They were able to hang out for a couple of hours, enjoying snacks and playing board games. Caleb felt incredibly special with so many people working hard to make the outing possible.

“I’d been in the hospital for such a long time, it was really nice to get to school and just feel normal for awhile,” he says.

His mom, Kristy, agrees. “It was great to see a smile on his face. I know his friends were concerned about him, so it was nice for them to see him, too. This portable equipment is making a really big difference for kids like Caleb.”

Intensive care specialists from across North America are contacting Lee and her team about their success with their new initiative. “What we are doing here is being shared widely,” says Lee. “Kids far beyond Calgary are benefiting from what we are learning.”

TUNE IN

Feb. 5 – 7, 2020 6 am – 7 pm each day Listen to stories of amazing children and families who are benefitting from care at our hospital – and generous support from our community!

CHILDRENSHOSPITAL. AB.CA

A centre for MENTAL HEALTH DISCOVERY A culture of research to be built into the foundation of the new Centre for Child & Adolescent Mental Health Thanks to overwhelming community support, construction will begin this fall on a new Centre for Child and Adolescent Mental Health in the northwest community of Hounsfield Heights.

Every year, thousands of young people will benefit from its three crucial new services – a walk-in clinic, intensive community treatment and a day hospital. Beyond serving as an innovative clinical care facility, the Centre will be purpose-built to develop and implement a world-leading mental health research program with a direct pipeline from discovery to care – all in one setting.

A team of researchers with expertise in depression and anxiety are uniting around the Centre to address critical knowledge gaps in these areas. Their collective strength will be focused on advancing the health and wellbeing of children and youth receiving treatment at the Centre.

“This is a once-in-a-lifetime opportunity to create a patient-oriented, multidisciplinary research program that is closely integrated with a community-based mental health centre.

It is a transformational first for Canada,” says Dr. Susan Graham, director of the Owerko Centre at the Alberta Children’s Hospital Research Institute, who co-leads the research program with Dr. Paul Arnold, director of the Mathison Centre at the Hotchkiss Brain Institute.

JUST 4 KIDS – FALL 2019

“Our vision is that this research program will foster a learning mental health care system. What sets the Centre apart is the fact that every child who walks through its doors will have the opportunity to participate in and benefit from an integrated clinical-research environment,” says Arnold.

Ultimately, with new knowledge gained here and around the world and a better understanding of highly prevalent disorders – beginning with anxiety and depression – mental health professionals will be better equipped to effectively intervene and work with families to improve the long-term life course of young people in need.

“This is a once-in-a-lifetime opportunity to create a patientoriented, multidisciplinary research program.”

– Dr. Susan Graham, director, Owerko Centre Donations to the Build Them Up campaign have made it possible for several key research projects to begin even before the doors of the Centre are opened in 2021. Based on the highest priority needs of our community, they are expected to yield innovative data and transform care for children, teens and their families within one to two years. Facing Your Fears is one such project.

For more information or to donate, visit buildthemup.ca

Isabella’s story: Facing her fears When Isabella was diagnosed with Autism Spectrum Disorder (ASD), it confirmed suspicions long held by her mom, Jennifer Hodge.

Her little girl experienced a high level of anxiety – a common occurrence among children on the spectrum. She was afraid of getting sick, being alone in a bathroom, sleeping in her own bed, people stopping by the house – fears that were ever-present and debilitating, fears that held Isabella back from living her best life as an 11-year-old kid.

“She was having these fears at all times. In the day-to-day, when your child won’t have a bath on their own, when they won’t sleep in their own bed, and you don’t know where it’s all coming from, it’s a lot,” says Jennifer.

That was a year ago. Today, thanks to the Facing Your Fears research project launched by experts at the Alberta Children’s Hospital Research Institute (ACHRI) and various Alberta Health Services clinics, Isabella is able to manage her fears. She’s less anxious when people stop by the house and she’s even sleeping in her own room again. As for mom, she’s sleeping more soundly, and not just because she has her bed back.

“We were very fortunate to get into this program. It was really, really helpful. Will Isabella have new anxieties? Yes, of course. But now I know how to help her overcome them. We have the tools to be able to address different anxieties, whatever they may be.”

Facing Your Fears is an established cognitive behavioural therapy geared toward youth with high-functioning ASD. It’s a treatment program that helps kids identify their worries and tackle them head-on. It’s part of a larger, five-year research project funded by community donations to the Alberta Children’s Hospital Foundation and headed by Dr. Carly McMorris, an assistant professor at the University of Calgary and a member of ACHRI. It has been running in Calgary since January 2018, and the results are night and day, says Dr. McMorris.

“We know that children with autism are at a heightened risk of experiencing anxiety, which is often more crippling than the diagnosis – it significantly impacts kids and families,” says Dr. McMorris.

“With the families we have been able to enroll in Facing Your Fears, we are seeing dramatic improvements, not just in the kids, but in the quality of life for the entire family.”

Feedback collected from families will contribute to a larger national study headed

by Dr. McMorris that includes BC Children’s Hospital in Vancouver and Holland Bloorview Kids Rehabilitation Hospital in Toronto to understand how best to deliver the program and which families will benefit the most.

Guided by a team of experts that included psychologists and speech and language therapists, Isabella and Jennifer spent 14 weeks learning to understand Isabella’s fears and how to dismantle them, one by one.

Jennifer describes the work as “very intense.”

It included classes, workbooks designed for both the parent and child, homework, deep-breathing techniques, new coping skills and strategies for self-calming, as well as a reward system to encourage Isabella along her journey.

Facilitators helped the family work through each fear, slowly and methodically. One of the tools that helps them track progress is a StressO-Meter, which asks kids to gauge their anxiety on a scale from 0 to 8. In the beginning, sleeping alone was a solid 8 for Isabella. By the end of the program, it was 0.

While the research project is still in its infancy, McMorris says what they’ve seen with Facing Your Fears thus far is so encouraging, they are growing the program to reach even more families in the community.

“Our goal is to help expand this program to help kids with Attention Deficit Hyperactivity Disorder and Fetal Alcohol Spectrum Disorders.”

Facing Your Fears was such an invaluable and empowering experience for her and Isabella that Jennifer hopes it continues to help families like theirs.

“It’s so important for these kids to learn these coping skills for when they get out there into the world and we are so grateful for the community support that makes this program possible,” she says. “And to know this is all part of research, that’s so important to us, to be part of something that’s going to help more people in the future.”

CHILDRENSHOSPITAL. AB.CA

Making pain care a priority Hospital earns international recognition for culture of comfort

The Alberta Children’s Hospital is the second hospital in Canada to receive prestigious international recognition for how its experts make kids feel comfortable and how well they manage pain.

Thanks to community support for programs and research at the Vi Riddell Children’s Pain & Rehabilitation Centre, the Alberta Children’s Hospital is now one of 10 pediatric hospitals in the world to be ChildKind certified.

ChildKind is the gold standard certification for healthcare institutions who have made comfort and pain management foundational values of care. Certification is awarded to hospitals that demonstrate innovative approaches to the prevention, assessment and management of children’s pain, and for making the child and family experience as stress-free and comfortable as possible at every point of contact.

The certification doesn’t surprise Jacqui Loucks, whose daughter Tessa, 12, was diagnosed with juvenile idiopathic arthritis in August. They have had many appointments, including a day surgery, and Jacqui says Tessa has felt comfortable at every turn.

“From our first interaction, it’s been such a positive experience. Everybody there knows how to talk to the kids, how to interact with them, how to make

JUST 4 KIDS – FALL 2019

them comfortable,” says Jacqui. “One of the things her rheumatologist said was ‘we are going to get in front of the pain, we don’t want any child to suffer,’ and as a parent that was the best news I’d heard.”

Tessa told her caregivers she isn’t a fan of needles, so they use a special numbing cream.

“There may be more pokes and procedures in Tessa’s future and knowing that she’s not afraid is going to make everything so much easier,” says Jacqui.

Several services helped the Alberta Children’s Hospital to gain this special certification. The Acute Pain Service operates 24 hours a day to meet with all inpatients and address discomfort.

At the Complex Pain Clinic, a multidisciplinary team empowers kids and families to better manage their own pain. For youth who are experiencing significant and more complex pain, the Vi Riddell Intensive Pain Rehabilitation Program is a three-to-six-week day treatment program that aims to improve function and get kids active again in age-appropriate activities.

“Unmanaged pain can have significant, longterm effects on children,” says Laura Rayner, a clinical nurse specialist at the Vi Riddell Children’s Pain & Rehabilitation Centre at the Alberta Children’s Hospital. “Thanks to the generosity of this community and its support for research and excellence, our hospital is leading the way in providing comfort to kids.”

Commitment to Comfort No one wants to see a child in pain and the people at the Alberta Children’s Hospital work hard every day to ensure kids are as comfortable as possible. In fact, comfort is an underlying philosophy that informs everything they do.

Commitment to Comfort™ is a site-wide initiative that puts a child’s comfort first during needle pokes, potentially uncomfortable procedures and visits to the Emergency Department. Caregivers and parents alike engage the use of soothing language, comfort positions, numbing cream, a fun toy or iPad as distraction – all of which can put children at ease.

Not only has Commitment to Comfort been a big hit with kids and families, it has been given prestigious recognition with the 2017 Patient Experience Award from the Health Quality Council of Alberta and the 2018 Alberta Health Services President’s Excellence Award.

The program has proved so effective at the Alberta Children’s Hospital, that experts are now teaming up with Alberta Public Laboratories to roll it out to labs across the province. Learn more at commitmenttocomfort.com.

Did you know?

Earlier this year, the World Health Organization took a major step toward recognizing chronic pain as an illness rather than a symptom, which will have a global impact on patient care and pain research.

Pain research shows positivity matters How we talk with our kids about pain today can impact how they deal with it tomorrow.

According to new research, children whose parents focus more on positive emotions will recall their medical experience as being less scary and painful than it actually was. A child may have initially rated their pain as a six out of 10, but would later remember it as a two out of 10. Kids whose parents reminisce more about the pain – using words like ‘hurt,’ ‘sting’ and ‘ouch’ – will remember the surgery more negatively.

“The way children are remembering their pain is an underlying factor in the development of chronic pain.”

– Melanie Noel, researcher

The findings come from Melanie Noel of the Alberta Children’s Hospital Research Institute who says the data can teach parents how to talk to kids in ways that will foster more positive recollections of a pain experience. More positive memories can lead to better pain and healthcare experiences throughout their lives, says Noel.

With the help of parents who participated in Noel’s study, researchers have developed a memory reframing intervention that is now being used with children undergoing tonsillectomies at the Alberta Children’s Hospital. This involves teaching parents and children to reminisce in ways that emphasize positive aspects of the past painful experience, correcting negative exaggerations in recall (when they remember it as being worse than it was), and helping to boost children’s confidence about their ability to cope with pain.

“The way children are remembering their pain is an underlying factor in the development of chronic pain,” says Noel. “We can teach parents and kids how to reminisce and talk about their pain experience in a way that emphasizes the positives, like a friendly nurse, instead of the negatives. This may actually change the pain and health trajectory for thousands of kids and adults.

This is the research we are doing right now at the Alberta Children’s Hospital.”

Tips and tricks for parents to keep kids comfy Numbing creams can take the sting out of a needle poke. Talk to your pharmacist about products such as Ametop, Emla and Maxilene.

Distraction goes a long way when a child is having a potentially uncomfortable procedure. Always have something to watch, read or play with on hand.

Positive language is a very powerful tool and will impact you and your child’s experience during a procedure. Use words like “uncomfortable” or “discomfort” instead of “hurt,” “pain” or “painful.”

Be honest with your child and tell them that they will be going to the laboratory for a blood collection or the hospital for a particular procedure. Keeping your child’s trust is important.

Reduce your child’s worries by describing what will happen (what they will see and hear) as well as why it will happen, as best you can.

Reward your child by doing something special with them after a needle poke to celebrate their bravery.

Keep calm and parent on.

Your relaxed and calming presence makes a difference.

Will it hurt? Try saying one of the following: • “I don’t know what you’re going to feel, but if you use the strategies we talked about like planned distraction or numbing cream, it won’t bother you so much.”

• “Maybe you can tell me what it felt like when we’re done.”

• “Isn’t it amazing when you take those big belly breaths, how it makes your body feel so calm and relaxed?”

CHILDRENSHOSPITAL. AB.CA

Kids Helping Kids

fast facts 10 1,100+ $528,253 $4.2M

Even the smallest hands are making the biggest difference!

Number of years kids have been raising money through the Kids Helping Kids program Number of children and teens who supported the Alberta Children’s Hospital Foundation through the Kids Helping Kids program last year Amount raised for the hospital through Kids Helping Kids fundraising initiatives last year Amount raised to support equipment, research and family-centred care programming since the Kids Helping Kids program began

Real-world superheroes Kids of all ages are putting their creative energy into making a difference in the lives of kids who rely on the Alberta Children’s Hospital each year. The Kids Helping Kids program is full of ambitious and generous children who are raising money through birthday parties, bike-a-thons, lemonade stands, bake sales and so much more!

Find out how your child can be a hero for kids at the hospital: childrenshospital.ab.ca/KidsHelpingKids

JUST 4 KIDS – FALL 2019

Virtual fundraising makes a real-life difference Gamers reach $1 million milestone

Thousands of dedicated gamers have turned their hobby into hope, help and healing. Through the Children’s Miracle Network program, Extra Life, gamers who support the Alberta Children’s Hospital have now exceeded the $1 million mark in donations. Across North America, their impact is even greater with more than $56 million raised for 170 children’s hospitals.

In addition to their signature Extra Life Game Day each year – a rally point for gamers far and wide – fundraising happens year-round through creative events and initiatives.

Beyond video games, gamers of all sorts have joined the movement – from board and card game enthusiasts to athletes. More than 60 percent of Extra Lifers are now livestreaming their games on Twitch, Mixer and YouTube to engage their family, friends and fans.

“The Extra Life program has grown rapidly over the last several years,” says Meghan Kociuba, Director, CMN and Partnerships with the Alberta Children’s Hospital Foundation. “We’ve seen a lot of companies come on board with teams of employees and even some matching incentives, which is amazing. The beauty of Extra Life is that you don’t have to go or be anywhere specific to support the hospital – you can connect with the gaming community and take part from wherever you are.”

“The Extra Life Calgary Guild has done an amazing job organizing events, engaging the community and encouraging people to support the hospital – their commitment is making a difference every day,” she adds. “We want to spread the word about Extra Life so people who love games know that they could be helping kids and families through something they’re already doing.”

To learn more about joining Extra Life’s Calgary Guild in support of the Alberta Children’s Hospital Foundation, please visit @extralifeyyc. For more information on the program, visit extra-life.org.

The Alberta Children’s Hospital Foundation is proud and grateful to partner with these generous donors through Children’s Miracle Network and Canada’s Children’s Hospital Foundations:

Air Canada Foundation Brooks Brothers Costco Wholesale Dairy Queen Canada Direct Energy Domino’s Extra Life Funding Innovation GLENTEL Inc. GNC IHOP Lids Lindt Lowe’s Canada Marriott Nordstrom Northern Reflections Panda Express Pizza 73 RE/MAX Signet Jewelers Limited SMS Equipment Sun Life Financial TD Bank Group The Brick Thirty-One Gifts Walmart Williams-Sonoma

CHILDRENSHOSPITAL. AB.CA

Support upcoming community fundraising events & campaigns Spirit Halloween (Spirit of Children) Campaign

Brooks Brothers Holiday Campaign

Dairy Queen Canada Round Up Campaign

Williams-Sonoma Fundraising Campaign

Domino’s Pizza Fundraising Campaign

Lids Holiday Campaign

Oct. 7 – 20, 2019

Nov. 12 – Dec. 31, 2019 (tentative dates)

Save-On-Foods Round Up for Kids

Nordstrom Holiday Campaign

Oct. 1 – 31, 2019

Oct. 7 – 13, 2019

Oct. 17 – 30, 2019 Jan. 16 – 29, 2020 April 16 – 29, 2020

GNC Fundraising Campaign Oct. 31, 2019 – Jan. 2, 2020

Extra Life Game Day Nov. 2, 2019 extra-life.org

Willow Park Wines & Spirits Charity Wine Auction Nov. 2, 2019 willowpark.net

Long & McQuade Music Therapy Fundraising Drive Nov. 1 – Dec. 31, 2019

Nov. 3, 2019 – Jan. 4, 2020

Nov. 8 – Dec. 8, 2019

Dec. 3 – 31, 2019

Walmart Holiday Campaign Dec. 3 – 24, 2019

Riverside Spa Annual Day of Guilt-Free Pampering Dec. 4, 2019

Lowe’s Canada Balloon Icon Campaign

March 24 – April 30, 2020

The Brick “Brickley the Bear” Sales & Icon Campaign Year-round campaign

Panda Express Fundraising Campaign Year-round campaign

childrenshospital.ab.ca/Events

Return undeliverable Canadian address to: 28 Oki Drive NW Calgary, AB T3B 6A8

Let’s celebrate the season Join us for an evening you, your family and friends will always remember.

Friday, Dec. 6, 2019 BMO Centre at Stampede Park For more information and tickets: candycanegala.com