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STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • SPRING 2015

It Takes a Community STEPHIE GAGNON GARNERS SUPPORT IN FORT SASKATCHEWAN

HELPERS WITH HEART

Dr. Lawrence Richer helps ease migraines

Cardiac outreach team brings care to communities

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FAMILY FOOTSTEPS

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PAIN RELIEVER

Social worker follows her mother’s lead in caregiving

PLUS: PM 40012957

SEE THE STOLLERY’S REACH FOR PATIENTS AND FAMILIES

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

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Thank you!

Proudly Supporting

With your support, the 2015 Stollery Family Day Classic raised more than $350,000… a total of $1.4 million since 2011! The four-day invitational, in support of the Stollery Children’s Hospital Foundation and Hockey Edmonton, focuses on children, families, active living and good health. Proceeds from this year’s tournament will support equipment used in the Stollery Children’s Hospital’s cardiology outreach clinics.

Thank you to Steve Serdachny and the Stollery Family Day Classic organizing committee! Special thank you to our volunteers, participants, sponsors and donors! Sponsors: ATB Financial, Murray’s Trucking, Go Auto, D’Amore’s Mercato, Great Canadian, Serdachny Powerskating & Hockey, MSI Metalworking Solutions, Oil City Web, Dolce Vita Homes, Boston Pizza

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contents SPRING 2015

Stollery Family

Departments

24 HEADACHE HELPER

5 BORDERLESS COMMUNITIES

A pediatric neurologist helps ease the ache of migraines in children

26 A LOT TO SWALLOW The Stollery’s Audiology and Speech Language Pathology department helps children with hearing and swallowing difficulties

28 LIFE BLOOD Pediatric thrombosis and hematology nurse practitioners make the course of sick children’s lives easier

37 LIKE MOTHER, LIKE DAUGHTER A Stollery NICU social worker comes by her interest in the helping professions honestly

A message from the president and CEO of the Stollery Children’s Hospital Foundation

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6 FOUNDATIONS OF LIFE 12 TECH FILES

Features 14 BEST IN THE WEST The Stollery Children’s Hospital serves one of the largest catchment areas in the world

16 STEPHIE’S RIDE A rare autoimmune disease is no match for a philanthropic Alberta pre-teen and her community

20 FROM THE HEART The cardiology outreach program takes its expertise to communities across the province

30 STOLLERY SUCCESS STORY A young woman’s hospital history reflects on an adolescence that almost never was

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Home monitoring is now possible to check for blood pressure problems

23 WHY I DONATE Monthly Stollery donors are moved to give by stories of impressive care and first-class treatment

32 MILESTONE ATCO’s employee-led fundraising program is making a difference in the community

34 CORPORATE HERO Edmonton Valve and Fitting has raised $500K for the Stollery since 2000

36 VOLUNTEER HERO The man behind Dr. PatchUp finds laughter to be the best medicine for kids

38 THE LAST WORD

16 ON THE COVER: Stephie Gagnon is in remission and riding high. PHOTO: Cooper + O’Hara S TO L L E RY K I D S. C O M

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SPRING 2015 VOL 3 • No. 2 STOLLERY CHILDREN’S HOSPITAL FOUNDATION ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation BOARD OF TRUSTEES: CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP LAURIE ANDERSON, CMA, WAM Developments RICHARD BALAN, RTA Holdings Ltd. JONATHAN CHIA, CA, Melcor Developments Ltd. DR. ALF CONRADI, Stollery Children’s Hospital LINDSAY DODD, MBA, Savvia Inc. DOUGLAS GOSS, Q.C., AOE, Bryan & Company LLP NOAH JONES, BA, CFP, CLU, Sorrell Financial ROD MACKENZIE, P. Eng., Legato Resources Ltd. DR. RAYMOND MUZYKA LEIGH-ANNE PALTER, MBA, Conroy Ross Partners GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, LUXUS Group RYAN POMEROY, Pomeroy Lodging LP DR. WILLIAM J. SHARUN, ThirtyTwo Dental ZAHRA SOMANI, MBA, Pirani Group MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital TRACY MACDONALD, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services

THANK YOU to the University of Alberta 12 hour Dance Marathon for putting your money where the miracles are. You helped raise more than

$11,000!

VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS EDITOR: SHELLEY WILLIAMSON COPY CHIEF: KIM TANNAS ART DIRECTOR: ANDREA DEBOER GRAPHIC DESIGNER: BEN RUDE PRODUCTION MANAGER: BETTY FENIAK SMITH PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Matt Beauchamp, Lyndsie Bourgon, Martin Dover, Jen Janzen, Robbie Jeffrey, Sue LeBreton, Jacqueline Louie, Christy Nich, Cory Schachtel, Séamus Smyth CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Buffy Goodman, Anthony Houle, Vinson Lim, Cooper + O’Hara, Kelly Redinger, Riyaz Sharan, Viewpoint Photography, Stephen Wreakes, Nicki Wohland, Romy Young Photography ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation is committed to funding excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to pave the way to the discovery of new treatments and cures; and specialized pediatric programs that enhance family-centred care, and patient and family outcomes at the Stollery. Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited. Heroes is printed on Forest Stewardship Council® certified paper Publications Agreement # 40012957 Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8 All fundraising totals are listed as gross unless otherwise specified.

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FOUNDATION message

Borderless Communities PHOTO: ROMY YOUNG PHOTOGRAPHY

BY Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation

SHEER DELIGHT: Stollery kids Lexie Prunkl and Maddi Dewald joined Make-A-Wish® Northern Alberta’s CEO and executive director, Cathy Gabucci, to shave Mike House’s hair off at this year’s Hair Massacure.

WHEN I THINK OF COMMUNITY, I THINK OF the things that matter most to me. For example, the many people that positively impact and influence the world around me, such as my friends, my neighbours, my kids’ school teachers and my work colleagues. I think about the importance of providing a healthy quality of life for me and my family, and teaching my children the value in giving back. I reflect on the things that give me a sense of ownership and belonging, and take pride in knowing that my contributions are making a meaningful difference to those around me. When we talk about community and the Stollery Children’s Hospital Foundation, we are talking about all these things and more. That’s because the reach of the Stollery is felt across Western and Northern Canada. And the impact of our donors and supporters in outlying communities is felt everyday within the walls of the hospital. In this issue of Heroes, you’ll meet many wonderful people who, despite living or working outside of Edmonton or even Alberta, are making a lasting difference to the quality of care that is synonymous with the Stollery. S TO L L E RY K I D S. C O M

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For example, our cover child is an amazing girl from Fort Saskatchewan who, in just four short years, collected close to $200,000 for the Foundation through a popular bike tour in her honour. Six years ago, specialists at the Stollery diagnosed Stephie Gagnon with juvenile dermatomyositis, a rare disease that attacks the body’s joints, muscles and organs, and can prove fatal if undetected and untreated. But thanks to the quick action of the Stollery care team, Stephie hasn’t required medication for two years and returns to the Stollery as an outpatient to ensure her recovery continues. Learn more about this impressive young girl on page 16 (“Stephie’s Ride”). Another Stollery kid is taking a page right out of Stephie’s fundraising handbook. Parker Bergeson travels from Whitecourt several times a month to see specialists at the Stollery. This fearless four-year-old has had more than 40 surgeries since birth, but rather than rest, Parker is raising money for the Foundation; more than $1,600 (see page 8). Parker’s mom, Robin, says her son understands there are other kids who need help too. The capacity of kids giving to kids never ceases to amaze and inspire me. If you were to take a drive a few hours east of our city, you would meet a long-time supporter of the Foundation who believes he has a responsibility to give back (“For the Kids,” page 23). Bill Carter, a retired teacher from Clandonald, Alberta, says during his 32 years in the classroom he taught many kids who had a brush with the Stollery. Now a grandfather and monthly donor, Bill says he takes great pride in knowing his contributions are directly helping to build new operating rooms at the Stollery to help future generations of kids in his town and similar towns across Western Canada. There are also many talented health care providers at the Stollery with rural roots. Our “One to Watch” this issue is from St. Paul, Alberta. Dr. Lawrence Richer (“Growing Pains,” page 24), was one of the first doctors in Canada to specialize in a growing, pervasive problem for many children: headaches. Thanks to continued donor support and the Foundation’s ongoing investment in research at the Stollery, Dr. Richer’s been able to study the effects of hydration and other treatments on children suffering from serious migraines. Dr. Richer’s research is leading to healthier minds in communities across Canada. Then there’s the Stollery’s cardiology outreach team. Together since the mid-1980s, this rotating team has grown from one pediatric cardiologist to nine, as well as two registered nurses and an echo sonographer who specializes in heart ultrasound. The outreach team treats up to 1,000 patients per year in such centres as Yellowknife, Red Deer and Fort McMurray. Considering the Stollery treats the second-highest number of pediatric surgical cardiac cases in Canada, the outreach team treats nearly 15 per cent of the pediatric cardiology program’s entire annual volume. Remarkable! And to clearly show you how connected the Stollery and our Foundation are to communities across Canada, we’ve included a two-page spread that indicates the distance our patients and families travel to receive specialized care (see page 14). From Fort Smith, Northwest Territories to Fort St. John, B.C. From Lloydminster, Saskatchewan to Rapid City, Manitoba. From Whitecourt, Alberta to White Rock, B.C. Our families and supporters are as diverse as the geographic regions from which they hail. The one thing they all share is a deep connection to the fantastic folks who put them first whenever they visit the Stollery Children’s Hospital. The word community may mean different things to different people. However, by working together, it’s clear that we can make a world of difference – by making a difference in the world. I hope you enjoy this issue of Heroes and have a happy, healthy spring and summer. S P R I N G 2 0 1 5 | HEROES

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foundations OF LIFE

PHOTO: COURTESY MELINDA ELGOT

PHOTO: COURTESY MELINDA ELGOT

A Heart as Big as Everest

NAOMI’S FAMILY AND FRIENDS RAISED

$13,984.20

NAOMI ELGOT LOVED CAMP EVEREST. THE CAMP, hosted by the Stollery’s Neurosurgery Kids Fund, is designed for children with neurosurgical conditions. Naomi had brain cancer, and found kindred spirits at the camp. “When she first showed up, she was very nervous, and I got a couple of phone calls that first night from a very sad girl,” says Naomi’s mom, Melinda. “But there were some incredible staff members there who encouraged her to stay, and they kept sending me pictures of her enjoying herself. By the time it was finished, she’d made some very close friends, and it was a camp that was very near and dear to her heart.” Naomi registered for the following year’s camp. Tragically, she passed away the day after Camp Everest began. Her friends and family looked for some way to honour her memory, and remembered how much she enjoyed Hair Massacure, an annual head shave to raise money for children with lifethreatening illnesses, supporting the Stollery Children’s Hospital Foundation and Make-A-Wish® Northern Alberta. 6

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So in 2014, John Paul I Catholic School kicked off its annual head shave in Naomi’s memory combining her two favourite fundraising events. They raised more than $12,000, and this year, on February 12, they raised a tremendous $13,984.20 for Camp Everest. “Naomi was a very compassionate child, constantly emptying her piggybank to donate to people,” Melinda says. “And we just think it’s incredible that her legacy of compassion is continuing through these kids.” Jodi Bruschetto, who helped organize the fundraising efforts, says that Naomi only had good things to say about Camp Everest, and the kids at her school were happy to help raise money for it. “The kids love the fundraising, and last year they were coming up with ideas on their own, like making and selling bracelets and scarves,” Jodi says. “She was the most special, strongest little girl I’ve ever known,” Jodi adds. “She touched the hearts of people that didn’t even know her. We miss her lots.” S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTO: COURTESY LEIGHTON LARSON

PHOTO: NICKI WOHLAND

PHOTO: NICKI WOHLAND

FOR CAMP EVEREST!


t

PHOTO: COURTESY DIANNE ROBINSON

Compassion on Ice THREE YEARS AGO A YOUNG BOY NAMED COLE, WHO

PHOTO: COURTESY MELINDA ELGOT

played minor hockey in Sherwood Park and attended his fair share of local hockey games, developed terminal brain cancer. He didn’t make it through the Christmas season. Touched by his story, Leighton Larson, the head coach of the Sherwood Park Bulldawgs, decided to start a fundraiser for the Stollery Children’s Hospital Foundation in his honour. “I thought just my team would do this little fundraiser,” he says with a chuckle. “Instantly another team jumped in, and by the end of the week, we had eight teams involved.” What began in honour of Cole has now become a full-fledged community effort called Goals with a Goal, as atom-division teams from Sherwood Park and Edmonton organize a nine-day stretch of games in February. For every goal scored during these games, spectators make a donation to a “goal can,” or pledge their names on a donation sheet. In its third year, Goals with a Goal has collected more than $12,000 for the Stollery Children’s Hospital Foundation. The fundraiser continues its tradition of honouring kids who have used the Stollery. The second year’s instalment was held for Peyton, who had a brain tumour removed, and this year it was held in honour of Tristan, who Leighton has coached twice and who may require a kidney transplant. “Tristan has been reliant on the Stollery since birth,” says Leighton. “The Stollery is part of his life, and he’s a hardworking, great kid with determination. It’s very easy to find inspiration in these kids.” MORE THAN Leighton has high hopes for Goals with a Goal, and while the last three years have surpassed his expectations, he hopes it keeps growing. “At the end of the day, our CONTRIBUTED youth are our future,” he says. “I look at the Stollery as an investment in that future.”

PHOTO: NICKI WOHLAND

$12,000

Change for

CHANGE LOUIS WAS BORN WITH OSTEOGENESIS IMPERFECTA (or “brittle bone disease”), a chronic disorder that left his bones susceptible to fractures. By the time he was three months old, Louis had suffered more than 70 broken bones. He has stayed at the Stollery countless times, says his mother, Dianne Robinson, including one 54-day stay. But through it all, Louis – who just turned eight years old – maintained his personality and optimism. His friends at Thorncliffe School know how much he depends on the Stollery Children’s Hospital, so they decided to give back to it with a fundraiser in Louis’ name. Kim Wilson, Louis’ Grade 2 teacher at Thorncliffe, says the idea came from a program that the school had in place that encourages community service. “We thought, ‘why should we do something else when we have someone in our school that represents a charity that needs support?’ We thought it would make it more meaningful for the kids.” And thus, Loonies for Louis was born. Taking a page from their Terry Fox fundraiser, the Grade 3 class challenged the school to do chores at home to receive payment of a loonie, and then pool that money into a fund that would go toward the Stollery Children’s Hospital Foundation. They raised an admirable $738, and are hoping to LOONIES do it again next year. To Kim, it’s a sign of FOR THE the school’s widespread support for Louis, STOLLERY! she says. “A lot of our kids have been to the Stollery, and they all know about Louis,” she says. “He’s got a lot of character and a tenacious attitude.” Dianne says Louis feels great about what his class is doing in his name, and says, “The kids at that school are simply amazing – they protect Louis and make sure he’s OK,” adding the fundraiser does more than that. “It helps our kids learn more about helping other people, and there are so many things out there that kids go to the Stollery for,” she says. “So, kudos to these kids for thinking about other people!”

PHOTO: COURTESY LEIGHTON LARSON

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Parker Bergeson: Fundraising Champion FOUR-YEAR-OLD PARKER BERGESON AND HIS MOTHER

PHOTO: STEPHEN WREAKES

Robin are local celebrities on the annual Corus Radiothon fundraiser for the Stollery Children’s Hospital Foundation. Since he was born, Parker has had 72 – yes, 72 – hospital stays at the Stollery and more than 40 surgeries and procedures. And still, every few months he requires surgery to dilate his esophagus so he can eat without choking. “Every year, we tell people about Parker’s story and how people donating to the Stollery can provide proper medical equipment and help parents be more comfortable when they’re at the hospital for weeks on end,” Robin says. “If it wasn’t for the Stollery, Parker probably wouldn’t be here.” But lately, Parker has done some fundraising himself. In addition to the $1,500 raised under his name as part of Corus Radiothon, he raised another $100 by asking people to give donations to the Stollery in lieu of presents for his fourth birthday. “He’s got lots of toys, and he understands that there are kids with other needs,” Robin says. “And the Stollery is so important because that’s where the experts are.”

NEXT TIME: Catch Parker at next year’s Corus Radiothon for the Stollery Children’s Hospital Foundation!

In Memory of Lorna WHILE MANY FUNDRAISERS HONOUR PATIENTS OF THE HOSPITAL,

PHOTO: COURTESY THE FLEMING FAMILY

Lorna Fleming was a much-loved nurse who worked at the Stollery for several years. She passed away in April 2012 from a rare autoimmune deficiency, but Lorna’s family continues to uphold her legacy as a caring, compassionate nurse who found immense joy and purpose at the Stollery Children’s Hospital. “Lorna was passionate about her job and she cared very much for the children she looked after,” her mother Bonnie says. “You’re not supposed to get emotionally involved, but Lorna couldn’t avoid it.” Lorna once called Bonnie to talk about a 16-year-old patient who was terminally ill. As part of a grieving package, he received a quilt; Lorna was calling her mother to ask her to make another one for him. After the patient passed away, his family called to say that the quilts brought them comfort. Members of the Fleming family run a hockey school. They wanted to donate more to the Stollery, and had set a $10,000 goal. “We had done very well at the hockey school, so we thought we’d take some of the money and use it for Lorna’s memorial and bring our donation up to $10,000,” Bonnie says, adding several members of Lorna’s family have contributed to the fund. “We just want recognition for her because she was a very caring MORE THAN person and she loved what she did.” She adds that her grandchildren and nieces and nephews have also benefitted from the Stollery’s care. Bonnie says that Lorna would often get home from RAISED IN work and hug her children and thank God for how MEMORY OF fortunate she was. Lorna will be forever missed, but LORNA! Lorna’s family carries on her tradition of compassion and enthusiasm.

$10,000

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Floral Morals NEARLY THREE YEARS AGO, JUST AFTER her fifth birthday, Julianna Larson went for a walk with her mother, Wendy, father Jeremy and little brother Jasper. Everything seemed fine until Julianna abruptly suffered two seizures. Wendy took her to the hospital, where she had two more seizures, and she was admitted to the Stollery Children’s Hospital for three days. “It was very scary for us because it was all brand new and we didn’t know what was going on,” Wendy says. Doctors later diagnosed Julianna with focal epilepsy, also called partial epilepsy. After her stay at the hospital, Julianna expressed interest in donating toys to the Stollery’s Child Life department. “My husband and I said that if she wants to do something like this, let’s support her,” says Wendy. “She wanted to get new toys for the kids staying in the hospital. I own a flower shop, so we said, ‘Why don’t we sell bedding plants and give all the proceeds to the Stollery?’” In 2013, they raised $1,500 and in 2014 they raised $2,100. Saturday, May 23 and Sunday, May 24, the family will celebrate the third-annual Julianna’s Plant Sale.

3RD ANNUAL SALE

May 23-24

From their homebased shop in Sherwood Park called Tickled Floral, the family sells a selection of annuals in four-inch pots. “Julianna helps put signs up, and she goes to local businesses with her business suit on and shakes peoples’ hands and asks for support,” says Wendy. “For two days, we sell plants like crazy; you can even bring your planters with you and we’ll plant them for you with whatever you choose.” When Julianna was first diagnosed, the doctors told her that she had a 70 per cent chance of outgrowing the condition, and she hasn’t experienced a single seizure since. But while the experience has taught her and her family that these things can come out of the blue, Julianna has learned to be confident rather than afraid. “What this means to me is that it empowers her,” says Wendy. “It’s taught her so much about confidence and it means a lot to her to help other kids in her circumstance.”

PHOTO: COURTESY THE FLEMING FAMILY

PHOTO: COURTESY WENDY LARSON

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Fitness in Motion THE MERRIOTT YOUTH ATHLETIC FOUNDATION IS AN internationally renowned not-for-profit organization that teaches movement literacy to youth. The Foundation focuses its efforts on building strong communities, “One move at a time.” Together with the Stollery Children’s Hospital Foundation, it shows that going the extra mile pays off. The Merriott Youth Athletic Foundation runs in-school and community programs to encourage kids to get active. Chris Merriott, a community leader with the foundation, is enthusiastic about the partnership with the Stollery, which began six years ago and is still going strong. “We’ve been with the Stollery for a long time,” she says, before detailing the foundation’s $25,000 commitment to the Stollery Children’s Hospital Foundation through a host of local events and partnerships. This includes everything from golf tournaments and triathlons, to school programs and after-school initiatives. “The whole premise of what we do is to encourage kids to move more and live active lifestyles, but we create opportunities so kids can experience success in their own athleticism,” she says. “We have the tools to make any child successful with movement.” Both foundations work well together. MERRIOTT Both promote child safety and wellness – YOUTH ATHLETIC trying to prevent inaction and encourage FOUNDATION’S movement. Together, everybody wins.

COMMITMENT:

$25,000

PHOTOS: COURTESY MERRIOTT YOUTH ATHLETIC FOUNDATION

THE COLOUR PURPLE: If you have been to the Stollery lately, you’ve likely noticed the flashes of purple in hospital signage. It’s our way of showing what a difference our donors have made – in everything from life-changing care and research to critical care, emergency and operative services to outpatient clinical space. You, too, can show your appreciation and thanks for TheDonorDifference. Here’s how: STEP 1: Show your appreciation. Snap pictures of anything branded #TheDonorDifference that has impacted your journey through the hospital. STEP 2: Share your appreciation. Share your pictures and stories on Twitter or Instagram and tag them with #TheDonorDifference. STEP 3: Showcase your appreciation. Visit TheDonorDifference.ca to see your pictures/stories and to read other stories of impact. 10

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Save the Date ATB TEDDY FOR A TOONIE CAMPAIGN DATE: May 1-31, 2015 LOCATIONS: Visit any northern Alberta ATB Branch or Agency Drop into your local branch and get your custom limited edition teddy bear today! Every year ATB Financial customers and team members raise funds by hosting fun activities and collecting donations for children’s health in Alberta. This year, all funds raised will support the operating room expansion at the Stollery. Visit ATB.com/teddy.

DIRTY BIRDS CHARITY HOCKEY TOURNAMENT IN HONOUR OF JOSHUA DASILVA DATE: May 22, 2015 – silent auction LOCATION: Average Joe’s, 390 Baseline Road #240, Sherwood Park TIME: 7 p.m. to 1 a.m. DATE: May 23, 2015 – hockey tournament LOCATION: Argyll Arena, 9933 63 Avenue NW, Edmonton The Dirty Birds Charity Hockey Tournament is a two-day event supporting the Neurosurgery Kids Fund at the Stollery Children’s Hospital. All funds raised from this exciting event will help send neurosurgical children to Camp Everest. Join us on May 22, at Average Joe’s for a silent auction and then again on May 23 at Argyll Arena to cheer on the hockey teams, enjoy kids’ activities and have a snack. For more information please contact Melissa at melissadasilva@shaw.ca or at 780-406-4030.

STOLLERY WEEK 2015 DATE: Listen live June 8-12, 2015 We are very excited to partner with 104-9 Virgin Radio, 100.3 The Bear, TSN1260, and CTV to raise much needed funds for sick and injured children in our community. If you ever thought about becoming a monthly donor – now’s the time! Tune in to your favourite stations as they challenge their listeners and viewers to raise money to ensure the best possible care for Stollery kids.

MYAF ZOMBIE ADVENTURE RACE DATE: June 14, 2015 TIME: 8 a.m. to 1 p.m. LOCATION: Devon Voyager Park, at the end of Saskatchewan Avenue West along the North Saskatchewan River, Devon Kids just want to have fun! Join us June 14 for our fourth-annual Adventure Race. The kids will get wet, they will be chased, they will climb hills, and they will crawl under ropes. We even have a division for adults. For more information about the event or to register, visit myafkids.com.

JULIANNA’S PLANT SALE

DQ MIRACLE TREAT DAY

DATE: May 23-24, 2015 TIME: 9 a.m. to 5 p.m. LOCATION: 63 Foxboro Run, Sherwood Park

DATE: August 13, 2015 LOCATION: Participating DQ restaurants in Northern Alberta

A variety of four-inch bedding plants, herbs and tomatoes will be available for $3.50 each. All of the net proceeds will go to the Stollery Children’s Hospital Foundation. For more information, contact Tickled Floral at 780-278-5279, info@tickledfloral.com or visit tickledfloral.com.

PHOTOS: COURTESY MERRIOTT YOUTH ATHLETIC FOUNDATION

The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefitting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids.com/events. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

STAND UP FOR LOVE BENEFIT CONCERT DATE: May 30, 2015 TIME: 6 p.m. LOCATION: Ellerslie Road Baptist Church, 10603 Ellerslie Road SW, Edmonton TICKETS: $20 Stand Up For Love stems from the belief that love is what holds the world together. The benefit concert consists of dedicated performers and volunteers who share their talents and passion in support of the Neurosurgery Kids Fund at the Stollery Children’s Hospital Foundation. Call Adrianne or Lindsay at 780-953-8784 or 780-993-8229 for tickets.

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For the past five years, the Edmonton region has held the national record for the most Blizzards sold on Miracle Treat Day, and with your help, we can do it again! On Miracle Treat Day, 100 per cent of Blizzard Treat proceeds benefit the Stollery Children’s Hospital Foundation, helping fund projects at the Stollery Children’s Hospital that transform children’s health.

STEP-UP-TO-THE-PLATE SLO-PITCH TOURNAMENT DATE: August 15-16, 2015 LOCATION: TELUS Field, 10233 96 Avenue, Edmonton Why not join the fun? We invite you to register a team to participate in the tournament and enter into some healthy competition with other local businesses. Teams play a minimum of three games, including at least one at TELUS Field. Registration is $750 per team, and each team is also asked to raise a minimum of $2,000 in pledges. This is a popular event and spots are limited, so register early. To register your team, visit stepuptoplate.com.

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tech FILES

BY Sue LeBreton

Under Pressure PHOTO: NICKI WOHLAND

Home monitoring is now possible to check for blood pressure problems

HELP AT HOME: Now kids with hypertension can be sent home with one of five ambulatory blood pressure monitors, which they send back to the Stollery by courier, saving the family a hotel stay.

WHEN PEDIATRIC NEPHROLOGIST DR. ABDULLAH ALABBAS SEES CHILDREN like three-year-old Magnus Lindberg with hypertension, he knows he is seeing an isolated slice of the child’s life. In some children, blood pressure is elevated simply by the stress of visiting the doctor or the hospital, a condition called white coat hypertension. “The 24-hour testing lets us confirm white coat hypertension if blood pressure is normal at home,” says Dr. Alabbas. In recognition of new medical thinking that this white coat hypertension can indicate an increased future risk, children who present with this condition return to the clinic for another examination in two years. For blond-haired, blue-eyed Magnus, the opposite was true. Diagnosed with hypertension at four months old, his blood pressure was quite good. “He’s a quiet child and a bit shy so maybe that played a role,” says mom Darcy Lindberg. To monitor the effectiveness of his treatment, Magnus went home with an ambulatory blood pressure monitor that measured his blood pressure every hour over a 24-hour period. When the data was entered into the computer the following day, the doctor saw that when Magnus was doing his normal activities at home, his hypertension was not controlled. As a result, his team doubled his medicine. He The prevalence of hypertension in now visits the clinic every six months and is happy children is reported to be between to leave with the small one and three per cent. portable blood pressure monitor. “He was actually upset when he had to return it because it came in a Cars backpack,” Darcy says. Thanks to the success of last year’s Stollery Children’s Hospital Foundation’s Snowflake Gala, Dr. Alabbas and his colleagues at the Stollery Children’s Hospital have three additional ambulatory blood pressure monitors coming to clinic. These new machines will bring the total number of units to five, helping the nephrology clinic see additional patients more quickly to provide accurate diagnoses. The prevalence of hypertension in children is reported to be between one and three per cent. In recent years, the prevalence in school-aged children appears to be increasing, possibly due to 12

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obesity. The risk for developing hypertension is three times higher for obese children than non-obese children. In children, hypertension is a systemic disease, often caused by an underlying condition such as congenital heart disease or kidney disease. So for these children, discovering hypertension can lead to diagnosis of another condition that can be treated if caught early. A prompt, accurate diagnosis can be a lifesaver. According to Dr. Alabbas, “hypertension is called the silent killer. It may go undetected for months or years, resulting in damage to the heart, brain, kidneys and eyes.” But when hypertension is caught early, monitored and treated, kids like Magnus can lead an active, normal life. As the Stollery Children’s Hospital sees patients from a large geographic area, mainly western and northern Canada, the new machines will ease the diagnostic process for those living farther away. With only two ambulatory machines, families needed to stay close to the hospital for the 24-hour testing period. In addition to being inconvenient, this doesn’t offer doctors a true indication of normal life for the child and could potentially affect the diagnosis. With five machines, Dr. Alabbas hopes to send patients home with the ambulatory blood pressure monitors for the 24-hour monitoring period. Once the test is complete the parents can return the device by courier, saving an overnight stay in a hotel and eliminating the additional cost and stress to a family already worried about their child’s condition. In addition to white coat hypertension, there is a condition called masked hypertension that can benefit from the use of ambulatory blood pressure monitors. “These cases have normal blood pressure in the office but in the 24-hour monitoring we can sometimes see sky-high blood pressures. These are cases we could not have diagnosed without this 24-hour data,” says Dr. Alabbas. Another phenomenon that Dr. Alabbas has identified with the help of the ambulatory blood pressure monitors is children whose blood pressure is controlled during the day, but not at night. For people without hypertension, blood pressure typically dips in the night. “If we see that is not happening we know the child’s hypertension is not controlled.” Thanks to the enhanced use of ambulatory blood pressure monitors, more junior hypertension sufferers will be accurately diagnosed and treated so that they can avoid the long-term complications associated with this condition. More children with hypertension will join Magnus in leading a normal life. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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Our donors make a monumental difference to the level of care at the Stollery Children’s Hospital. Let us show you how. TheDonorDifference.ca

From left to right, Stollery Nurses, Brittany, Jessica Lynn, & Maggie

Thank you! The Stollery Children’s Hospital Foundation wishes to thank the amazing nursing staff at the Stollery for going above and beyond for our kids!

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THE BEST

IN THE WEST A hub for pediatric cardiac surgery and organ transplants, the Stollery Children’s Hospital serves one of the largest catchment areas in the world.

1,411

211

T

3

HE STOLLERY CHILDREN’S HOSPITAL IS THE ONLY

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specialized pediatric health care facility in central and northern Alberta. Located in Edmonton on the grounds of the University of Alberta’s Walter C. Mackenzie Health Sciences Centre, the Stollery serves one of the largest catchment areas in the world. But what many people may not be aware of is that more than 40 per cent of patients treated at the Stollery live outside Edmonton, including many from British Columbia, Saskatchewan, Manitoba, the Yukon, Northwest Territories and Nunavut. Here’s a quick snapshot of the distance patients and families travel to receive specialized care at the Stollery Children’s Hospital, and a look at some Stollery kids who’ve made the trip:

4

5 3,614

8 7 739

10 1

2

12

890 916 1,012

4,815

432 7

23

64

72

11

923

13 14

9

20

2,864

16

1,639

2 1 Muskaan

Vancouver, BC Age: 7 Diagnosis: Dilated cardiomyopathy

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Brendan

Kelowna, BC Age: 6 Diagnosis: Idiopathic pulmonary arterial hypertension

3 Peyton

Buffalo Head Prairie, AB Age: 3 Diagnosis: Gastrochisis

4 Mackenzie Peace River, AB Age: 2 Diagnosis: Subglottic circumferential hemangioma

5 Jacob

Grande Prairie, AB Age: 7 Diagnosis: Hydrocephalus

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6 Boston

Fort McMurray, AB Age: 5 Diagnosis: A large ASD, pulmonary hypertension and coronary artery fistulas

7 Parker

Whitecourt, AB Age: 4 Diagnosis: Esophageal atresia tracheal fistula

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8

Evanna

Elias

Edmonton, AB Age: 3 Diagnosis: Hypoplastic left heart syndrome (HLHS)

Calgary, AB Age: 1 Diagnosis: DiGeorge syndrome, tetralogy of fallot with pulmonary artresia, VSD and MAPCAs

9 Dysen

Consort, AB Age: 6 months Diagnosis: Seizures

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12

13

14

15

Neala

Dillan

Keaton

Marissa 393

Scout

Lethbridge, AB Age: 8 Diagnosis: Biliary atresia

Lloydminster, SK Age: 6 Diagnosis: Hirschprungs disease

Prince Albert, SK Age: 5 Diagnosis: Restrictive cardiomyopathy with secondary pulmonary hypertension

Saskatoon, SK Age: 19 Diagnosis: Potts syndrome

Oxbow, SK Age: 4 Diagnosis: Transposition of the great arteries and chylothorax

17 Maverick 16 Carson

Rapid City, MB Age: 10 Diagnosis: Transposition of the great arteries 16 2,864

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18

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Carman, MB Age: 2 Diagnosis: Taussig bing, double outlet right ventricle, transposition of the great arteries, coarctation of the aorta, narrowing of the aorta, ASD, VSD, and left and right shot gun coronary arteries.

Sophie

Winnipeg, MB Age: 8 Diagnosis: Acute myeloid leukemia, dilated cardiomyopathy secondary to chemotherapy

368

25 26 10

3 35

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Connect the Dots: This dot cluster graphic illustrates the number of patient

visits to the Stollery Children’s Hospital from different regions and areas across Canada. If you want to share your Stollery story and become a member of our family network, please call 780-433-5437 or visit stollerykids.com.

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youth PHILANTHROPY

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Stephie’s

RIDE BY Jen Janzen

PHOTOS: COURTESY THE GAGNON FAMILY

A rare autoimmune disease proves no match for a philanthropic Alberta pre-teen, her family and their close-knit community

THE WHEEL DEAL: Over its four years, Stephie’s Bike Tour raised more than $180,000 for the Stollery Children’s Hospital Foundation.

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OU COULD SAY STEPHIE’S RARE AUTOIMMUNE They expected to wait three months for a pediatrician appointment disease sneaked up on the Gagnon family. to open up, but once Stephie’s blood work came in, the pediatrician Stephie was six-and-a-half years old when her mom, wanted to see her right away. Sheila, and dad, Richard, started noticing that she was more The word luck comes up a lot when you talk to Sheila about tired than usual. But Stephie, the youngest of three kids, had just start- Stephie’s rare disease. Among other things, they consider themed first grade and was probably just adjusting to a full day of school, selves lucky to be referred by their doctor to a pediatrician who they thought: nothing to be concerned about. Stephie was also losing recognized that Stephie required immediate examination from a weight, but her parents put that rheumatologist. down to her little body shedding When the pediatrician called “You really hope you’ve got a doctor its baby fat. No big deal. the Stollery’s rheumatology dewith experience with this who can This was all happening in the partment, Stephie lucked out guide you in the right direction,” fall of 2009, near the height of the again: Dr. Claire LeBlanc could says Sheila Gagnon. “That was a H1N1 (influenza) scare. Schools see Stephie right away. The all over the country were recomStollery’s outpatient clinic was huge plus for the Stollery.” mending lots of hand washing, packed – parents were jumping at and St. John XXIII School in Fort Saskatchewan was no exception. So their child’s every sniffle and cough, fearful of H1N1. Sheila was when Stephie developed a rash on her hands, her parents thought it dismayed when she saw the crowded waiting room. “I remember just was a reaction to all of the soap. thinking ‘we’re going to be waiting for hours,’ ” she says, but within “Back then we had an answer for everything,” Sheila recalls. She took 10 minutes a nurse came out and escorted Stephie to see Dr. LeStephie to her family doctor for the hand rash to rule out warts. Stephie Blanc. After a two-hour assessment, Stephie had a diagnosis: juvenwas given hand cream but despite using it for about six weeks, her fin- ile dermatomyositis (JDM). The disease is so rare that it could have ger and toe joints swelled up painfully. Sheila took Stephie back to the easily gone undetected for a few more months, and so potentially doctor, who ordered blood work and referred Stephie to a pediatrician. fast-moving that any delay could have been deadly. Treatment need“That’s when the ball started rolling so fast it was incredible,” Sheila says. ed to start immediately.

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BEST BUDS: Foundation mascot Dr. PatchUp and Stephie Gagnon at one of the young philanthropist’s fundraising events in Fort Saskatchewan.

OCCURRING IN ABOUT TWO OR THREE CHILDREN PER MILLION,

around her. When a nurse came to take Stephie’s vitals – every 10 minjuvenile dermatomyositis is an autoimmune disease in which the utes – Stephie would simply lift her arm out of the blanket. body’s immune system attacks its own blood vessels. Initially it causes JDM starts by attacking the body’s joints and muscles before movinflammation, which appears as a rash, and muscle weakness appears ing onto the organs. It moves quickly, and a few weeks can signifia few weeks or months later. The progression of the disease is variable, cantly increase the damage done to the body, increase difficulty for but it can be life-threatening, especially if the lungs and heart become treatment and lower the odds for remission. Luckily, Stephie’s organs inflamed and weakened. were still okay, but the disease had a major effect on her legs. She You’ll never hear Sheila complain about Alberta’s healthcare sys- was still able to walk, with difficulty. “Getting up from the floor was tem. Stephie’s treatment required her to spend 11 days at the Stol- a struggle, sitting down was a struggle, opening doors was a struglery, during which time she had every vital organ tested as soon gle,” Sheila says. “She couldn’t put socks on her feet.” At the hospital, as she was admitted in order to when they saw their little girl try to gauge the damage that JDM had When planning the 12-kilometre race, get up, Sheila says she and Richard already wrought on her little were shocked. “How did we not the Gagnons were hoping for 30 people see it before?” she asks. “We just albody. “Everything moved so fast,” to enter. They ended up with 88 riders. ways had a reason for everything.” Sheila recalls. The disease is, in fact, so rare Stephie weighed 45 pounds that treatments for it vary around the world. “You really hope you’ve at the start of her treatment, down from her previous weight of 50 got a doctor with experience with this who can guide you in the right pounds. She was a tiny child, taken around the hospital in a wheeldirection,” says Sheila. “That was a huge plus for the Stollery.” chair because she had trouble walking by herself. Treatment for Stephie meant four days of intravenous medicine including prednisone, a steroid, and methotrexate, a drug usually used THE MEDICINE DID ITS JOB, AND WITHIN A MONTH, THANKS for chemotherapy but also effective in rheumatological conditions. to physiotherapy (“And lots of yoga,” recalls Sheila), Stephie was reThe doses were high, and it was hard for Sheila to watch her daughter gaining most of her strength and flexibility. But the prednisone she absorb such vast amounts of medicine. “I just remember her crying continued to take at home had side effects. “It plays on their emobecause she could taste the chemical, even though it was going into tions,” Sheila explains, describing Stephie’s anger, crying and emoher arm. We were giving her food to try to get the taste of the chemical tional outbursts. Through the Stollery, the Gagnons had access to a out,” Sheila says. Stephie started to shake and Sheila put a blanket psychologist, and Sheila said it helped the whole family. “You don’t 18

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know how to react to certain things. It’s the medicine, it’s not your child, and you want to parent correctly,” Sheila says, adding that part of the benefit of the Stollery is that it makes sure the whole family is coping. “The Stollery makes sure everyone’s okay, that parents are getting help, her brothers and sisters were also getting help, and Stephie was helped because you can’t stop the medicine.” The medicine also caused abrupt changes in Stephie’s growth. She went from 45 to 75 pounds in just five weeks and stayed there for four years. The medicine is also known to halt growth for up to two years. The effects are lasting: Sheila says the doctors predict Stephie will be about two inches shorter than she would have otherwise been. Another side effect was a weakened immune system to the point where even a simple cold could have made Stephie very sick. Two weeks after her treatment started, when she decided she was ready to go back to school, a care team made sure that every surface was disinfected in the rooms Stephie was going to be in, wiping down surfaces with antibacterial wipes. If a child in Stephie’s class had a fever, the school would call Sheila at work to let her know. “We could send her to school knowing they would do everything they could to keep her safe,” Sheila says. “It was a huge relief on our end.” This diligence went on for four years. Each new teacher was just as careful as the last, Stephie’s classmates remaining considerate of her weakened immune system. Thanks to this careful attention, it was more than four years before Stephie ever got a fever.

NOW 11 YEARS OLD, STEPHIE IS IN REMISSION FROM JDM. She’s active, happy and, by all accounts, a normal pre-teen. But JDM S TO L L E RY K I D S. C O M

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never goes away for good, and Stephie will always need to be cautious about preventing a flare-up. The three things that can cause the disease to return are sun exposure, stress and high fevers. In fact, Stephie has had two flare-ups since 2009. One was in the middle of December after she was outside for 20 minutes with no sunblock. The telltale rash started to appear on her joints, and her medicine was scaled up for a brief time. To keep the disease dormant, Stephie needs to be extremely cautious around the sun, applying sunblock every day, whether it’s warm or cold, cloudy or sunny. And physical activity is a must to keep her stress levels down and maintain flexibility and strength in her muscles and joints. “When they were explaining that we need to be healthy, low stress and keep our activity up, my husband and I are thinking, ‘This is great news,’ ” Sheila says. “When your child has a life-threatening disease and what you do to help it is what you should be doing anyway, it’s fantastic.” Swimming and biking were two of the best activities: lots of exercise but very low-impact. Thanks to the excellent care provided by the entire rheumatology team, Sheila and Richard wanted to give back to the Stollery. “When your child is sick, all you want to do is get them healthy again,” says Sheila. “When you see the work and effort from everyone at the Stollery, how kind everyone is from the person booking the appointment to the person giving the needle to your child, you just want to give back.” Her parents had two criteria for their event: they wanted it to have a family focus to reflect the Stollery and be something that Stephie could participate in. They chose a bike tour around Fort Saskatchewan and Strathcona County. Always hosted in their community, the first-ever Stephie’s Bike Tour happened in 2011, and the event grew every year. Initially the event started with a 30-kilometre adult bike tour with a five-kilometre Family Fun Tour. As the event grew over four years, it developed 12-kilometre, 45-kilometre and 85-kilometre routes, in addition to the five-kilometre. The success of this event in attracting community support for the Stollery really showed last year. When planning the 12-kilometre race, the Gagnons were hoping for 30 people to enter. They ended up with 88 riders. The Fort Saskatchewan community rallied around the cause with local businesses challenging each other to donate funds, elementary schools holding bake sales, and even a special pub night, hosted by a local ladies hockey team, which raised $15,000. “The Stollery is in our community,” Sheila says. “To be a 45-minute drive from a children’s hospital that specializes in everything is amazing.” Over its four years, Stephie’s Bike Tour raised $180,000 for the Stollery Children’s Hospital Foundation. It was a rewarding event that truly helped the Gagnon family feel like they were giving back to the hospital that did so much for Stephie’s health. At the end of last year, Sheila and Richard knew they couldn’t do a 2015 event. “It was a hard decision,” Sheila says. “It was really, really hard.” But, she adds, all three Gagnon children are healthy and busy, which is “the best news we could ever have,” but there are only so many hours in each day, and Sheila says their final decision came down to their family’s increased needs. Stephie hasn’t required any medication for two years, but she will be a Stollery kid until she’s 17, returning every six months for an assessment. But the Gagnons know that if she ever gets another JDM flare-up, the Stollery team will swoop in to help. “The confidence you get as a parent, knowing you’ve got that support system even when she’s in remission, that’s amazing. They’re always there for you.” S P R I N G 2 0 1 5 | HEROES

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ON THE PULSE: (Clockwise from top) Pediatric cardiologist Dr. Jeffrey Smallhorn, who is among a rotating group that makes up the Stollery’s cardiac outreach team, checks child cardiac patient Alyssa Butler’s heart; RN Pat Aldridge puts a smile on Alyssa’s face; and a tiny patient, Blair Schimke, waits her turn for her examination by the outreach team.

PHOTOS: NICKI WOHLAND

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From the

HEART BY Robbie Jeffrey

The Stollery’s cardiology outreach program takes its expertise to communities across the province – and to families like Alyssa’s

PHOTOS: NICKI WOHLAND

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OU CAN’T TELL SHE HAS A CONDITION,”

says Ian Butler of his two-and-a-half-year-old daughter, Alyssa. She’s giggling and sticking her tongue out at him from across the room as Dr. Jeffrey Smallhorn, a pediatric cardiologist, listens to her heartbeat, and her unbridled enthusiasm proves his point. Alyssa has a heart block; the nerve impulses that control her heartbeat are irregular causing her atria and ventricles to beat out of sync. Once every six months, for 24 hours at a time, Alyssa wears a Holter monitor, a portable recording device that reads heart activity. Her average heart rate is 68 beats per minute, which is slow but not dangerous. But over the course of a day, it varies wildly. A diary that Alyssa’s parents use to keep track of her heart beat reveals a range from 54 to 120. For the moment, however, her condition is invisible as she bounces around the doctor’s office. “She has a six-year-old sister she can keep up with,” Ian says. “She likes to build snowmen and go ice-fishing too, and last time she even caught more fish than I did!” Alyssa’s mom Samantha MacDonald is there too, and as a nurse helps Alyssa onto a scale, Samantha reflects on her daughter’s condition. “Alyssa was so small when she was born,” she remembers, as her daughter clocks in on the scale at a healthy 26 pounds. “She’ll get a pacemaker at some point; we just don’t know when.” Samantha has lupus. Some components called antibodies crossed through the placenta during pregnancy and damaged the electrical system of Alyssa’s heart, and doctors have been monitoring Alyssa’s heart since she was in the womb. Alyssa needs a checkup every six months, but Dr. Smallhorn says she may be able to go for years before needing a pacemaker. Sporting an ear-to-ear smile, Alyssa gives him a high-five. Ian and Samantha live in Bentley, Alberta, and drive 42 kilometres to the Red Deer Regional Hospital Centre for their biannual checkup, waiting to see the doctor. But when Alyssa was born, Samantha had to drive to hospitals in Edmonton once a week for a special ultrasound – almost 300 kilometres each trip and hours spent waiting. And with Ian working farther north, near Cold Lake, she had to make the trips unaccompanied. S TO L L E RY K I D S. C O M

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After a while, however, the family was able to work with the Stollery Children’s Hospital’s outreach team – a team of registered nurses, cardiologists and echo sonographers who travel across Alberta and the Northwest Territories to underserved or hard-to-reach communities. Both Dr. Smallhorn and Pat Aldridge – the nurse helping Alyssa onto the scale – are with the outreach team, though they seem right at home when treating a child from Bentley in a Red Deer hospital. Samantha had already developed an immense respect for the Stollery, from her visits just after Alyssa was born. “The staff is amazing – they’re very informative, genuine and patient,” she says. “They help you understand, and they encourage you to ask questions.” But her appreciation goes even further than that now. The challenges of raising a child are enough on their own, and even more so when that child has a condition like a heart block. Compounding factors like travel and unexpected expenses can tug at the seams of relationships until they fray. The goal of the outreach program is to ultimately ease these burdens on the children’s families, and to deliver to them the care they deserve without the added stress. Ian, for one, can actually accompany Samantha to the hospital visits now. And as Alyssa playfully sticks her tongue out at him again, the outreach team’s impact on this family is evident.

THE STOLLERY’S OUTREACH TEAM FIRST CAME TOGETHER in the mid-1980s. Today, each visit requires a team of three, including an RN like Pat, and an echo sonographer, a technician who specializes in ultrasound testing of the heart. But the team of three or four rotates among eight or nine pediatric cardiologists and two nurses. The team also graciously accepts the assistance of pediatric cardiology residents or fellows – trainees who are hungry for experience. This program is willing to use all the help it can get – the Stollery treats the second-highest number of pediatric surgical cardiac cases in Canada, and the outreach team treats the equivalent of nearly 15 per cent of the pediatric cardiology program’s volume, totalling between 800 and 1,000 patients per year. The team visits Yellowknife, High Level, Fort McMurray, Red Deer and Grande Prairie. The largest clinics are in the S P R I N G 2 0 1 5 | HEROES

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PHOTO: NICKI WOHLAND

Dr. Dyck credits much of the program’s success to his colleague, Edie Ungstad, a nurse who has been part of the outreach program for 20 years. She negotiates with the participating health centres to prepare for the team’s visits. “We draw up a schedule about six months in advance and co-ordinate with the hospitals that we’re visiting to make sure they can accommodate us,” Edie says, before explaining how the team works with the host clinic to ensure proper use of space, time and resources. “When we actually get there, we run an outpatient clinic, so we only see ambulatory patients, similar to what we do [in Edmonton] but at higher volumes. If we’re going the distance, we want to see as many patients as we can.” The outreach team also tries to establish a long-lasting, personal connection with the people they serve. “If we see the same people consistently, they’ll be more forthcoming with their concerns,” she says. The biggest change has been the increase in volume, partly in tandem with the province’s population growth but also due to the growing awareness of the outreach team, which increases the number of referrals. The team has looked into technologies that could assist them, such as remote stethoscopes and video conferencing, but found that ultimately, there is no replacement for human contact. The team works with local hospitals to offer a well-rounded range of services, including social workers and dietitians, as it does in Edmonton. “We often have to communicate with the local dietitian and physiotherapist and make arrangements – and those guys are stretched too,” Dr. Dyck adds. There are still physical obstacles, as well, such as travelling with and operating equipment. While the outreach team is able to use the DAY TRIPPER: RN Pat Aldridge checks Alyssa’s height during her host centre’s equipment, often it’s not as specialized as what the team examination by the team in Red Deer. brings with them. Among these items is the Vivid E9, a cardiovascular ultrasound system built specifically for 2-D imaging, a purchase made latter two cities, which the team visits at least once a month, while possible through money raised by the Stollery Children’s Hospital the frequency of visits to the other regions depends on the demand. Foundation. Yellowknife, for example, gets nine visits; High Level gets four. But in And to make sure as many people as possible receive their required every community, the demand is growing. ultrasound, technicians like Samad Khan, lead sonographer in the “The outreach team began with the desire to make sure patients Stollery’s pediatric echo lab, squeeze in nearly twice as many patients with complicated conditions who live in other communities can get in an outreach trip as they would at the Stollery. Speaking about Sagood care,” says Dr. John Dyck, an outreach regular. “In Yellowknife, mad, Edie says, “If we had the resources to send two people with his for example, 95 per cent of the skill and expertise, we’d need to people we see are First Nations and send two machines.” “We get to know the families Inuit, and there’s just no other way Samad laughs, and explains because we follow the children year for them to access care,” he says. how expensive the ultrasound after year. You build a relationship,” Eighty per cent of the patients are machines are and why this would says nurse Edie Ungstad. kids, but the team also sees many be difficult if it wasn’t for the help young adults with congenital heart of the Foundation and its donors. problems. In Yellowknife, the team continues to see a large number of “These days, they cost around $170,000, excluding the probes (transolder adults. “By the time they get to see us, many people have already ducers), which each cost between $10,000 and $15,000.” The team flown from Cambridge Bay to Yellowknife,” Dr. Dyck says. “A lot of has three transducers. them – for cultural reasons or otherwise – don’t want to come to EdBut the challenges pale in comparison to the overall benefits. “It’s monton. So there are adults we’ll see on an ongoing basis.” an enjoyable day – it’s always busy and long, but we like visiting the Before the team was formed, Dr. Dyck explains that pediatric cardi- other centres and having a change from the normal workday,” says ologist Dr. Ruth Collins-Nakai conducted a cost analysis on the im- Edie. “And we get to know the families because we follow the chilpact an outreach team would have on families who need to travel dren year after year. You build a relationship.” Even Samad, whose exorbitant distances for proper care. “It was so outrageously cost- outreach day-trips essentially require two days of work, doesn’t mind. effective that it didn’t make sense not to do it,” he says. The cities “Patients always say, ‘I have three children – I can’t come all the way to that the outreach team visits are selected based on demographics: Fort Edmonton, leaving my job and my kids,’ ” he says. “So it’s a great help McMurray has a large transient population due to the fly-in-fly-out for those who cannot afford to come all this way.” workers employed in the oil sands; Red Deer’s population is skyrockDr. Dyck agrees. “We’re really trying to deliver the same standard eting; and Grande Prairie services people travelling from northern of care to them, out there, as they get here, in Edmonton, and build B.C. for health care. Meanwhile, patients in Yellowknife would have relationships with people in those communities. Health care is not to drive almost 1,500 kilometres for a standard pediatric checkup just about cardiology – it’s about talking to people in their own in Edmonton. communities and helping them live in their own communities.” 22

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BY Shelley Williamson

WHY I donate

For the Kids Monthly Stollery donors are moved to give after hearing stories of impressive care and first-class treatment not to have spent any significant time at the Stollery Children’s Hospital with a child of his own, but he says the stories of care and compassion that come out of the Edmonton facility from people he’s met have had a huge impact on his family. Over the years, Bill and his wife Judy have seen their friends with children experience everything from cancer treatment to major surgery at the Stollery. He has always been impressed by the care that all family members, not just the sick or injured child, receive. “A friend of my daughter’s, when their daughter was born, she needed a liver transplant. The Stollery looked after not only her, but her whole family,” he explains. “In the end, they took part of the father’s liver and transplanted it in her. It’s got to be eight or 10 years ago now since that happened – and she’s fine.” Another friend’s granddaughter was diagnosed with cancer and underwent her chemotherapy at the Stollery Children’s Hospital. “It was the treatment, not just of the child but of the whole family, and the care that they found there,” Bill says. “When you are going through a very scary time in a child’s life, they make it fun as well. They looked after her, and her mother. Again, fortunately she recovered.” A retired elementary teacher with 32 years of experience in classrooms from Marwayne to Clandonald, Alberta, Bill has seen many of his students frequent the Stollery’s halls. “When I was a teacher, there were different times when the kids would have to go to the Stollery for something – and again, it was always such great care they were given,” he says. Everyone has a Stollery story. Bill says it’s these personal accounts from kids and their families he’s witnessed year after year during the Stollery Children’s Hospital Foundation’s Corus Radiothon that finally moved him and Judy to donate – a practice they have repeated every month since 2002. “They said ‘you can be a monthly giver.’ So I just decided, hey, I can afford that. They were looking for $25 a month so I called up and gave that. Then the next year, I think I gave $50 a month. Being the only children’s hospital in northern Alberta, it’s definitely important to give,” he says. This year, donations like the Carters’ will go toward a necessary and important goal: the Stollery’s operating room expansion and redevelopment campaign. Every dollar gets the hospital closer to making this needed growth a reality, says Cyndi Matthews, manager of annual giving at the Stollery Children’s Hospital Foundation. “We count on those donations every month to help us meet our budget goals all S TO L L E RY K I D S. C O M

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PHOTO: COURTESY BILL CARTER

BILL CARTER CONSIDERS HIMSELF FORTUNATE

GIVING BACK: Judy and Bill Carter have been giving a heart-felt donation to the Stollery Children’s Hospital Foundation every month for more than a decade. year long, so they are very important to us.” Cyndi notes that proceeds from just 100 monthly donors that give $25 a month quickly adds up to $30,000 a year, and “if we look at that in terms of equipment, or our campaign, it really makes an impact on children’s health.” It’s nice for donors like Bill and Judy to see where their hard-earned dollars are going, says Cyndi, adding that they are making a permanent contribution to the Stollery’s dedication to excellence through the expansion plans, which are slated to take three years. “We are going from five existing, very outdated operating theatres and we are expanding to 10. We will build five new ones – and that’s what their money will fund. Then once we move into the five new ones, the others will be redeveloped, and updated. ” Now a grandfather to twin seven-year-old boys, Bill is grateful they have managed to stay out of the hospital, although one just broke his arm. “Luckily, they are healthy except for the occasional slip and fall,” he says, crediting the mishap to boys being boys. Should anything more serious happen, he’s delighted to have, in his home province, a facility like the Stollery, which he will continue to support regularly. Bill, who now spends some of his retirement time as a volunteer in Victim Services, humbly admits he comes by his philanthropic pursuits honestly. “As part of my Christian service I believe in supporting worthwhile charities and, having been a teacher, I have always had a thing in my heart for kids,” he says.

#THEDONORDIFFERENCE: When you include this hashtag in your Twitter or Instagram posts about donors like the Carters, TheDonorDifference.ca will re-post them for all to read and enjoy. For more information visit TheDonorDifference.ca S P R I N G 2 0 1 5 | HEROES

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S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

2015-04-27 12:57 PM

PHOTO: VINSON LIM

LEADING THE PACK: Dr. Lawrence Richer, seen here with the Medoc Pathway for Contact Heat Evoked Potentials (CHEPs), which was funded by the Stollery Children’s Hospital Foundation, is among the first specialists to look into possible relief for persistent migraines in children.


one TO WATCH

Headache

HELPER BY Séamus Smyth

A pediatric neurologist helps ease the ache of migraines in children

PHOTO: VINSON LIM

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OU COULD TAKE AN ADVIL, YOU COULD TAKE A

Tylenol, or you could visit Edmonton’s Dr. Lawrence Richer. Simply put, the researcher quells the aches of the mighty melon. Richer isn’t afraid to point out that he is one of the first in the country to specialize in helping children with headaches, an unchartered and frustrating matter that he has been focused on since 2001. Like every small town Canadian boy, Lawrence Richer was supposed to play in the National Hockey League. And just like almost every Canadian kid, a career as a professional athlete never materialized. It was when he had the chance to travel from his home in St. Paul to a relative’s place in Bonnyville that he first learned what profession would ultimately fulfill him. A relative of his was a quirky doctor with his own office, his own practice and above all, the ability to make pain dissipate. “It was sort of that notion that I could help others,” he says. “I was already into science and I thought it was a good blend.” He has been associated with the Women and Children’s Health Research Institute (WCHRI) at the University of Alberta since its inception in 2007. At that time, there was a movement to have support for research data management. Soon, Dr. Richer was placed in charge of the data management core and he has been at the forefront of various research initiatives geared at improving the health of women and children ever since. To say that WCHRI was a new and improved version of some prior institute would be a major overstatement. “There was no institute prior. There was just nothing. You fought for the same pot of funding that everyone else did, and you fought at a disadvantage in that generally children and women’s issues are under-represented in medicine,” says Dr. Richer. “Children are literally and figuratively small so it became difficult to make a stand, and women are often ignored in research, so this became a fantastic opportunity to support women and children’s health,” he says. He is proud to be a member of the U of A team, who he calls national leaders not only in medicine but also in recognizing the needs of women and children. Dr. Richer’s research focuses predominantly on three interrelated areas: functional changes in the autonomic nervous system (ANS) in children with migraines, brain injuries and pediatric autonomic S TO L L E RY K I D S. C O M

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disorders in relation to clinical outcomes and novel therapeutic targets; evaluation of therapeutic strategies for the same disorders; and the integration of clinical and research informatics to support translational science, clinical trials and health outcomes research. A pediatric neurologist by training, Dr. Richer is most often referred his patients for headaches. A third of his referrals are for headaches in children. Generally, hydrating the body, an over-the-counter pain medicine and a good night’s sleep with the blinds closed should solve this common conundrum, but there remains a small portion of the child population that have migraines which refuse to be dismissed that easily. “They are struggling to get to school, struggling to stay in school. We can take MRIs and look, but there is really no test to show what is wrong and yet they live with the pain,” says Dr. Richer. The suggestion of drinking lots of water is a wise one, founded in fact, at least for most. Dr. Richer conducted a study, funded by the Stollery Children’s Hospital Foundation through WCHRI, in which he found that a headache can be relieved through hydration. But for those suffering migraines two or three times a week, it is a complex issue that goes beyond just guzzling a couple of litres of water. He admits that the work can be frustrating in that it sometimes feels that nothing will work. But it’s his dedication and perseverance that helps him through the struggle. “Families and the kids are happy you are sticking with them. I don’t say to them ‘I can’t find anything, you must be making this up,’ – they are happy that I am willing to listen,” he says.  Yes, there are over-the-counter painkillers, but Richer says very little exploration was done to see if anything else could work. After years of research, there are now a number of medications proven to work in adults that can also help children. “I have developed a comfort with using other medicines that work,” he explains. With a growing need for more specialists, Dr. Richer is grateful that there are new doctors heading down the same path as him, spreading their expertise across the nation. With knowledge that there is help on the way, Dr. Richer is at ease. To completely relieve himself of stress, he spends time with his family in Edmonton and exerts himself in a new passion: CrossFit. He feels stronger and fitter but promises that, despite his first-class medical reputation, he has modest expectations for his new activity. “You won’t be seeing me on TV anytime soon,” he muses. S P R I N G 2 0 1 5 | HEROES

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team WORK

A Lot to

SWALLOW Stollery’s speech and audiology department helps children with eating and hearing issues BY Séamus Smyth

M

ELISSA AND CORY PITTENDREIGH’S THIRD CHILD the moment it goes in their mouth to when they swallow,” she explains. was born without an ear. This alone would be a big ob“There are times when we may be eating, socializing and talking, stacle for any family to overcome, but for the now three- and then we start coughing and choking, and people will sometimes year-old Koby, it was only the beginning. say, ‘Oh, it went down the wrong way.’ This is exactly what is happen“When he was born, we thought that his ear would be his biggest ing. Most of the kids we see don’t always respond the same as we do issue. It turned out that was peanuts compared to his swallowing because they have become so used to that sensation that they do not problems,” says Melissa. cough – this is why we do the swallow X-ray,” Wendy says. Like many kids, Koby was a noisy eater. During a routine After the diagnosis, it was determined that Koby was aspirating checkup on his ear, a physician at the food and fluid into his lungs. To combat Stollery Children’s Hospital noticed that, Despite his decrease in visits to this, thickeners were added to his food when Koby was eating, the crunching and liquids to prevent them from taking a the Stollery, Koby’s relationship and grinding sounds he made seemed abnorwrong turn when he swallowed. His food with his contacts in audiology was converted into what was essentially mal. It was shortly after this observation and speech language pathology a consistency as thick as pudding to that Koby was referred to another clinic at the Stollery to examine his breathing. help the swallowing process. Although teams remain close. Here the Pittendreighs met Wendy this helped, Koby eventually caught Johannsen, a speech language pathologist with the Stollery’s speech pneumonia due to his aspiration and required a nasogastric feeding and audiology department. One of Wendy’s primary roles is to detect tube, a device that ran from his nose down into his stomach. He would feeding and swallowing disorders. have to wear the tube for nine months. “When you and I swallow food, it goes into our stomachs; with His mom Melissa played an important role in his care; she stayed at many of the kids that I see, the food goes into their lungs and, as a the Stollery Hospital for a week to learn about the tube functions and result, they may cough and choke while swallowing and can get fre- how to insert it properly. If the tube came out, it was her responsibility quent colds, illnesses or pneumonia. We are making sure that when to place it back in correctly. What made the process slightly smoother they swallow it goes down the right tube,” explains Wendy. was the relationship the family developed with Wendy. To determine the severity of Koby’s complications, he was put “She just knows what she is doing and she is very honest,” says through a clinical feeding and swallowing assessment followed by a Melissa. “When we asked her opinion when we had the option to go swallow X-ray or video fluoroscopic swallow study (VFSS). “It is a dy- through with the surgery and she said that if it was her child then she namic study. It allows us to see where the food and liquid is going, from would do it because then they are able to see more inside of Koby.” 26

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PHOTO: BUFFY GOODMAN

DYNAMIC DUO: Julie Kremer, left, and Wendy Johannsen, part of the Stollery’s audiology and speech language pathology department, are key players in helping kids with hearing and swallowing difficulties. Koby underwent surgery in the spring of 2014. As a result, he no longer has issues swallowing and no longer requires the tube. He is now only required to visit the Stollery Children’s Hospital twice a year.

ear, BAHD can increase hearing in noisy situations and help localize sounds,” Julie explains. “A soft band houses the device worn usually behind the ear and placed on the skull. The soft band may be replaced by a surgical procedure to implant the device behind the ear under the skin. This surgical procedure is not an option until the child is older, KOBY CONTINUES TO USE A HEARING AID AND WILL REQUIRE usually around nine years of age.” Koby is followed by the Institute for one for the rest of his life. He currently uses a BAHD, or bone-anchored Reconstructive Sciences in Medicine (iRSM) for his BAHD management hearing device, that Julie Kremer, at the Stollery. the team lead of the speech and Despite his decrease in visits to It was determined that Koby was audiology department at the the Stollery, Koby’s relationship aspirating food and fluid into his Stollery Children’s Hospital, with his contacts in audiology and lungs. To combat this, thickeners explains is a type of the device speech language pathology teams were added to his food and liquids based on bone conduction. remain close. This is especially true to prevent them from taking a wrong The BAHD hearing aid, she of Wendy. says, is primarily suited for people “Koby loves her and is very much turn when he swallowed. who have conductive hearing at ease with Wendy. He was just a losses, single-sided deafness or mixed hearing losses and who cannot one-year-old when he met her, but now we are just going to see Wendy. otherwise wear in-the-ear or behind-the-ear hearing aids. He doesn’t like when we say ‘We are going to the hospital’; he likes As Koby does not have an ear, “by bypassing the outer or middle when we say ‘We are going to see Wendy,’ ” says Melissa. S TO L L E RY K I D S. C O M

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MEET THE specialists

LIFE

BLOOD BY Matt Beauchamp

Pediatric thrombosis and hematology nurse practitioners make the course of sick children’s lives easier

T

HE STOLLERY CHILDREN’S HOSPITAL IS FULL OF

continues to increase. The most commonly used drug is warfarin dedicated professionals working to improve the lives (Coumadin). Successful warfarin management is complex, requiring of their patients. In this issue of Heroes, we focus on two frequent international normalized ratio (INR) blood testing and dose pediatric nurse practitioners who provide care and com- adjustments. This frequent testing can be a burden on the children as fort to make the day-to-day lives of their patients and their families well as their families. more manageable. “Home INR meters provide a safe, effective and convenient Mary Bauman and Mary Anne Venner are nurse practitioners who method of performing their blood tests at home using a finger independently conduct patient assessments, manage disease, order poke blood sample,” says Mary. “Learning from patients and and interpret diagnostic tests, make referrals, prescribe medications understanding their challenges motivated KIDCLOT to develop and perform specific procedures, working as colleagues rather than a program where children receive home INR meters for Warfarin under supervision of a physician. management. The program has supported over 400 children and Mary Bauman works in the KIDCLOT program, which cares for chil- their families across Western Canada to use this technology to dren with, or at increased risk for, blood clots (pediatric thrombosis). manage their warfarin therapy.” “My role provides me the opportunity to consult, assess and treat KIDCLOT targets child-focused interventions which seek patients in the acute care setting then follow them through to dis- to improve patient health-related quality of life as it relates to charge home and long term,” says thrombosis and antithrombotic Mary. “Within this role I manage therapy. This has included varied The hematology program at the and oversee the outpatient pediatmodels for use of home INR Stollery Children’s Hospital works ric anticoagulation program.” monitors, testing and warfarin with children with diseases of the Mary treats children with acute management. The program is and chronic health conditions reconstantly being modified as a blood and bone marrow. quiring anticoagulation for varied result of patient feedback which durations. Many children born with heart defects require long-term provides evaluation of educational tools and strategies in addition to anticoagulation (the use of blood thinners), as a result of surgical or evaluation of patient clinical outcomes. Warfarin self management is medical interventions to correct their heart defect. now our standard as it improves patient outcomes and minimizes the The Stollery Children’s Hospital is the largest pediatric cardio- effect of antithrombotic therapy on day-to-day life. surgical centre in Western Canada, providing care to children across The Stollery Children’s Hospital Foundation supported the the four most western provinces and territories. purchase of a number of home INR meters that are provided to “What I love most is the interactions with children and their fam- patients. “The number of meters provided to children in Alberta, ilies, and learning from them,” says Mary. “These interactions pro- Manitoba, Saskatchewan and northern B.C. has expanded vide the basis for clinical and research questions evaluating patient exponentially over the past decade to over 400,” says Mary. “These outcomes with resulting practice and policy change to improve for meters provide the foundation of outpatient anticoagulation children locally and internationally.” information at Stollery Children’s Hospital which now hosts the The number of children who require long-term anticoagulation largest most developed home monitoring program internationally.”

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2015-04-27 12:55 PM


PHOTO: KELLY REDINGER

HEALING HANDS: Nurse practitioners Mary Anne Venner, left, and Mary Bauman work with children with acute and chronic blood and bone marrow issues at the Stollery Children’s Hospital.

MARY ANNE VENNER IS A NURSE PRACTITIONER AND AN integral part of a clinical team that includes pediatric hematologists. Hematology program goals include excellence in patient outcomes, family-centred care, education and research. The program’s patient population is increasing significantly. The hematology program at the Stollery Children’s Hospital works with children with diseases of the blood and bone marrow: thalassemia, diamond blackfan anemia (DBA), aplastic anemia, bleeding disorders, children with abnormal hemoglobin, platelets or white cells, and children with sickle cell disease. As part of her role, Mary Anne helped develop a comprehensive sickle cell clinic and inpatient/ outpatient program at the Stollery. Blood transfusions are a part of some children’s treatment in the hematology program, but frequent red cell transfusions can result in the child receiving extra iron from the transfused blood. Over time this iron can accumulate in the liver, heart, pancreas and kidneys, and even impair these organs’ function. If left untreated, iron overload can cause mortality. Children who require frequent blood transfusions, whether due to disease or as part of undergoing a stem cell transplant, usually require chelation medications to remove iron and reduce organ damage. To this end, the hematology program has developed an outpatient CRONO pump chelation program. Mary Anne organizes the program and educates families about this specialized treatment so that the daily chelating infusions can be given at home by the parent using the S TO L L E RY K I D S. C O M

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pump (usually at night), rather than in frequent visits to the hospital. “The blood products from the Canadian Blood Services are vital and life saving for these children,” says Mary Anne. “These children undergo frequent trips to the hospital and require close clinical monitoring with significant patient and family commitment. “Without equipment like the Crono pump that is small, portable and encourages strong adherence to a chelation program, there is risk of iron overload. Such complications can significantly affect quality of life, increase hospitalizations and shorten life expectancy. It is important that children and teens receive excellent chelation treatment in childhood to become healthier adults,” Mary Anne adds. When the Hematology Program wanted to initiate this new mode of treatment, there was no formalized program. “The Stollery Children’s Hospital Foundation was attentive to this need identified by the hospital and provided a grant to assist in purchasing a small number of the pumps for loan, in a timely way to help bridge the funding,” says Mary Anne. “We greatly appreciate the Foundation’s support of pediatric hematology program patients.”

ROLL UP YOUR SLEEVES: June 14 is World Blood Donor Day so if you can, give generously. Your donation can help children in the hematology program – amongst many others – have a healthier, fun-filled summer. S P R I N G 2 0 1 5 | HEROES

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alumni FILES

BY Cory Schachtel

Stollery Success Story Young woman’s hospital history reflects on an adolescence that almost never was

PHOTO: CHAD MOVOLD, VIEWPOINT PHOTOGRAPHY

THANKFUL: Jillian Pineau and her fiancé Blake are grateful for the excellent care the Stollery Children’s Hospital provided Jillian after learning she had leukemia at age 11.

WHEN JILLIAN PINEAU LOOKS BACK AT THE beginning of her life growing up in Fort McMurray, what stands out most in her mind is her family. As the middle child between two brothers, there were typical trips to swimming pools, soccer fields and skating rinks, and years of developing friendships within the idyllic neighbourhoods where she lived. Always active and never shy, Jillian swam, ran and skated with anyone who would join her, a contagious smile beaming from her face, sparking many lifelong relationships. The warm feeling of “I look back at the Stollery as a family only intensified the birth of her positive place, even though it’s with younger brother: “I where I went through something wanted to be his mom,” so horrible. It’s because of Jillian says. “I wanted the people who are there, the to raise him as my own, environment, and my family and which can be tough for a five-year-old.” friends,” says Jillian Pineau. Jillian liked school but did not excel, she says, in large part due to her birthday being late in the year, which made it difficult for her to keep up with her age group. She credits repeating the sixth grade and developing a strong connection with multiple English teachers over the years, with sustaining her love of learning. “They allowed 30

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you to think about the subject more, beyond reading the texts,” she says. “I actually enjoyed Shakespeare because of them, which I don’t think most students do.” Still, she was more athletic than bookish. “I loved running, and was on the track team in Grade 6. I loved being active outside, playing soccer and basketball. I’ve always been outgoing – I don’t think I’ve had a shy moment in my life. I like being with people.” Her parents were born in Halifax, and have relatives in Prince Edward Island and New Brunswick, so most summer vacations were spent in the East, visiting with her extended family. That familial connection, regardless of location or even blood relation, quickly became a big part of Jillian’s character and served her well during her darkest moments, when serious illness challenged her ever-chipper spirit.

THE PINEAU FAMILY MOVED TO ST. ALBERT when Jillian was 11 years old, about to begin Grade 6. While a major change, it was no surprise that Jillian, outgoing and athletic as ever, and her brothers transitioned seamlessly into their new social environment. For the first year, things went well. Jillian was more comfortable in school, loving literature more each day – until another family trip, this time to Canmore, changed everything. “I had been really tired for a couple weeks,” Jillian S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTO: CHAD MOVOLD, VIEWPOINT PHOTOGRAPHY

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PHOTO: COURTESY JILLIAN PINEAU

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says. “I love skiing, but that weekend I was so tired I wasn’t able to ski at all. When we got home, I was very pale, and my parents thought I had mono (mononucleosis).” Her family doctor thought the same until she sent Jillian for blood work. The results came back and her mother answered the late-night call that parents dread. “My mom woke me up at 3 a.m., saying we needed to get to the hospital. At that point, my mom knew that they thought I had cancer but she just woke me up and said I need to get more testing. So we left immediately because my platelets were so low that if I bumped my arm, I could have started bleeding internally. We went straight to the Stollery.” In the emergency room, a doctor asked Jillian what she knew. After repeating what her mom had told her – that she needed more testing – he said while that was true, he was almost positive that she had acute lymphoblastic leukemia or ALL. Her mom stayed with her while her dad went home to tell her brothers, and doctors performed the final, conclusive test the next morning, which confirmed the diagnosis. At that time Jillian turned to her parents, trying to absorb the shock. “When the doctor left the room I asked my parents, ‘What did he just say? Did he really just say what I think he said?’ ” Throughout her battle, Jillian’s positive attitude remained resolute. “To be honest, I don’t remember crying about it, not when it was happening,” she says. “Now, after I have these moments of time where I’ve recovered, and I look back, then I cry. But at the time, even when I went through a small depression, I didn’t get so upset that I cried. Maybe from pain, but I never cried about me, myself, having cancer.” Doctors began work immediately. Treatment rounds came in stages of varying intensity – some she could do at home, while others required a hospital stay – and none of which she tolerated very well. Nausea, dehydration and more than 20 pounds of weight loss meant Jillian would spend more time at the Stollery than most in her condition. She woke one night with extreme pain in her knees. An MRI revealed that steroids had affected her bones, deteriorating them to the point where she’ll need knee replacements by the time she’s 30. She missed Grade 8 entirely, which is when her depression started. Maintaining the positive attitude that served Jillian so well had, itself, become a burden. The constant support from family, friends and doctors made her feel like she couldn’t be upset, even when she wanted to. Her slow, lengthy recovery was beginning to take an emotional toll. “I got into a bit of a funk and kind of shut down,” she remembers. “There was a part where I got – quiet. I didn’t want to talk to people. It was not so much anger, but I just had the feeling of, ‘I don’t want to always be positive.’ I needed my time to be upset. Some time to sulk.” Medication helped, as did the upbeat attitude of the Stollery staff. But it was the Teen Room where patients meet and talk, play games and watch television that kept the darkness at bay. It’s where she developed two of the most important relationships of her recovery, and her life. “I met Jessica just as I was coming out of my depression, and Alora, a bit later,” Jillian says. As often as her St. Albert friends visited her in the hospital, the bond was simply different with fellow patients, especially Jessica. “We were able to just talk, and not really think about our treatment. I’ll always remember sitting in my hospital bed with her, as she would do my nails. It was crucial to relate with someone of the same age, going through something similar. We could just be girls and be friends.” Tragically, Alora passed away last year, just a month after her wedding, and Jessica died when Jillian was in Grade 9 and still going through treatment. The cancer in Jessica’s leg had spread to her lungs. “Her family loved Maui, so they took her for one last trip, and she got really sick while

LONG JOURNEY: A young Jillian poses with her Journey Beads, which are representative of the multitude of procedures and treatments she received at the Stollery. she was there. On the flight back, her lung collapsed, and when they were back, she passed away at home,” Pineau says. “It was the only time I cried during treatment.” Painful as it was, Jillian feels lucky to have spent time with such wonderful people and finds happiness in knowing they’re no longer suffering. To this day, all of the Pineaus feel a close connection with Jessica’s mother and her family.

AFTER TWO-AND-A-HALF YEARS OF CHEMOTHERAPY, radiation treatment and Stollery visits, Jillian recovered, ready to start her high school years uninterrupted by disease. She rekindled friendships, began new ones and had plenty of Shakespeare to read. At 19, she met 20-year-old Blake through a mutual friend. They began dating before she went to Red Deer for college, where he joined her in her first year away from home. In step with her earliest maternal instincts, and partially sparked by her time at the Stollery surrounded by kids, she’s now about to complete the Early Learning and Child Care program at MacEwan University in Edmonton. “Just like when my brother was born and I wanted to mother him, I always knew that I wanted to be a preschool teacher,” Jillian says. Last August the Pineaus took another trip to the East, celebrating Jillian’s fifth year of being cancer-free, and Blake met her family. In March 2015, he proposed. They look forward to a life together, only a few years removed from the cancer that almost snuffed hers out. “When I think about it now, it seems like something bigger than I could have accomplished, and I feel proud,” she says. “I look back at the Stollery as a positive place, even though it’s where I went through something so horrible. It’s because of the people who are there, the environment, and my family and friends.” S P R I N G 2 0 1 5 | HEROES

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milestone

EPIC

Engagement BY Martin Dover

ATCO’s employee-led fundraising program is making a difference in the community

2006/07 TOTAL

$43,309.73 2007/08 TOTAL

$47,807.88 2008/09 TOTAL

$138,501.78

DOLLARS RAISED PER YEAR In less than a decade, the ATCO EPIC program has contributed more than $1.026 million to the Stollery Children’s Hospital Foundation through its seven divisions:

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ATCO ELECTRIC

 TCO ENERGY A SOLUTIONS

ATCO GAS

ATCO I-TEK

ATCO PIPELINES

ATCO POWER

 TCO STRUCTURES & A LOGISTICS

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2009/10 TOTAL

$58,980.11 2010/11 TOTAL

$83,375.20 2011/12 TOTAL

$124,184.80 2012/13 TOTAL

$157,127.83 2013/14 TOTAL

$163,446.34 2014/15 TOTAL

$209,476.42 GRAND TOTAL

$1,026,210.09

O

VER THE PAST NINE YEARS, THE STOLLERY

Children’s Hospital Foundation has received significant support for its key foundation initiatives through the ATCO EPIC (Employees Participating in Communities) program, led and supported by ATCO and its people. ATCO, one of Alberta’s longest serving companies, has been supporting communities for more than 100 years. In 2006, it launched ATCO EPIC, to bring together the company’s fundraising efforts under a single banner and make a more meaningful impact in the community. ATCO enhances its employees’ generosity by matching donations made to human health and wellness charities, covering all administration costs and ensuring that the charities benefit from 100 per cent of the donation. Since the program began, the Stollery Children’s Hospital Foundation has received a total of $1.026 million through ATCO EPIC events, volunteerism and employee donations. “We are very proud of the fact that these individuals at ATCO care so much about our organization that they want to help us see our mission through, but also that ATCO gives them that opportunity to do so and matches their donations, doubling the impact of their employee’s generosity,” says Lori Finck, senior development officer with the Foundation. “To us, it’s a pure example of how companies can help make a difference in their communities, while having fun, building a great corporate brand, and also building wonderful employee retention and engagement opportunities.” Every year, ATCO employees establish committees to plan and implement engaging fundraising events in support of a feature charity they select within each ATCO company. The biggest difference between this and other corporate donation campaigns is allowing employees to donate to the charities that mean the most to them. In 2011, ATCO Power employees in Edmonton chose the Stollery Children’s Hospital Foundation as their feature charity. As a result, all of the funds raised from events ranging from auctions to bake sales, held during the company’s fall fundraising campaign benefitted the Foundation. Last year, ATCO Pipelines also selected the Foundation as S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTOS: COURTESY ATCO

beneficiary of funds raised through the company’s golf tournament. In total, $31,318 was donated through this event, and when combined with annual employee donations and the ATCO match made through the ATCO EPIC fundraising campaigns, the total exceeded $200,000. In addition to funds raised through events, feature charities also benefit from increased awareness of their mission among ATCO employees, resulting in increased individual employee donations made through the course of the year and subsequent years to follow. “An important part of our relationship with the ATCO EPIC program, is making sure ATCO employees know how their donations are making a difference at the Foundation,” says Lori. “We are so fortunate to have them be a part of the Stollery family and look forward to continuing our partnership in the future.” In 2014, ATCO employees raised a record $4.3 million for community charities around the world. Collectively, since the program’s inception, ATCO EPIC has raised more than $28 million for more than 500 charities, while also facilitating hundreds of thousands of employee volunteer hours. The ATCO EPIC program was recently awarded the Association of Fundraising Professionals’ 2014 International Award for Outstanding Corporation for the company’s many extraordinary contributions to philanthropy and to the charitable sector. Money raised through ATCO EPIC goes a long way to funding priority needs at the Stollery Children’s Hospital, including influential research via the Women and Children’s Health Research Institute (WCHRI). Learn more about Dr. Lawrence Richer’s research through WCHRI on page 24.

#THEDONORDIFFERENCE: When you include the hashtag in your Twitter or Instagram posts about donors like ATCO, TheDonorDifference.ca will re-post them for all to read and enjoy. For more information visit TheDonorDifference.ca

Give our kids every chance to get better.

PUT YOUR MONEY WHERE THE MIRACLES ARE. JENNIFER LOPEZ ACTRESS, MUSICIAN, TV PERSONALITY, MOM

Like all moms, I’m always concerned about my children’s well-being. But sometimes they get sick. Sometimes they get hurt. That’s why I’m so grateful we have children’s hospitals. If any child needs a miracle, they’ll do everything in their power to make one happen. Please join me in giving sick and injured children every chance to get better. Put Your Money Where the Miracles Are. Give to your Children’s Miracle Network member hospital. Children’s Miracle Network® raises funds and awareness for 170 member hospitals, 14 of which are in Canada. Donations stay local to fund critical treatments and healthcare services, pediatric medical equipment and research. Its various fundraising partners and programs support the nonprofit’s mission to save and improve the lives of as many children as possible. Find out why children’s hospitals need community support, identify your member hospital and learn how you can Put Your Money Where the Miracles Are, at childrensmiraclenetwork.ca and facebook.com/CMNHospitals.

Give Today ChildrensMiracleNetwork.ca

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to The Stollery Children’s Hospital Foundation

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corporate HERO

POWER

to the People BY Jacqueline Louie

Edmonton Valve & Fitting has raised $500K for the Stollery Children’s Hospital Foundation in the past 15 years

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EITH JOHNS AND HIS TEAM AT EDMONTON VALVE & have an impact on wanting to make a difference later in life,” Keith says. Fitting Inc. are corporate heroes with big, big hearts. Since Today, he adds, “It’s so comforting to know that if children need some 2000, they’ve raised more than $500,000 for the Stollery Chil- unique medical attention, that right here in Edmonton we have a redren’s Hospital Foundation through their annual golf tourna- nowned children’s hospital.” ment at the Edmonton Petroleum Golf and Country Club. Edmonton Valve & Fitting has hosted its annual golf fundraising According to Keith, Edmonton Valve & Fitting’s president, the real event for the past decade and a half to benefit the Stollery Children’s story isn’t about Edmonton Valve & Fitting – it’s about all the people Hospital Foundation. The event is in collaboration with suppliers, who dedicate their time, effort and money to support this and the other customers, and representatives from Swagelok – the product brand charitable events that the company gets behind. that Edmonton Valve & Fitting represents. “We have been rewarded in so many ways by our association with Staff do all of the organization and administration for the tournathe Stollery Children’s Hospital Foundation. It really is a relation- ment, which takes place each June with more than 140 golfers parship that is very special and gives us an opportunity to engage with ticipating and supported by approximately 40 volunteers. This year’s so many people who want to support this wonderful, wonderful or- event will take place on June 24. ganization,” Keith says. “All of this “It’s a unique event in that it would not have happened withhas taken on a life of its own,” “It’s so comforting to know that out the support of so many people Keith says. “Our customers come if children need some unique working together both inside and because they want to support medical attention, that right here outside our organization, stepping the Stollery Children’s Hospital in Edmonton we have a renowned up to make it happen.” Foundation.” A supplier of fluid system comA number of Edmonton Valve children’s hospital,” says corporate ponents used in the oil and gas, & Fitting customers will hold their donor Keith Johns. petrochemical and power indusown fundraising events before the tries, the company’s relationship with the Stollery Children’s Hospital golf tournament takes place, and then bring in the money they raise Foundation began in 2000, when Keith and his team were looking for in their own organization as a donation during the golf tournament. an opportunity to get more involved in philanthropic efforts. As he puts Some of Edmonton Valve & Fitting associates also take on special it: “We wanted to hold an event that allowed us to do something special fundraising initiatives of their own, in addition to the event. for the community. It just seemed like the right thing to do. A lot of that One of Keith’s favourite stories is about an associate who, as part stems from the Alberta way of doing business: Alberta has a culture of of his leadership development, decided to bring the team together to ‘those that can, help others.’ ” hold a fundraising car wash at Edmonton Valve & Fitting’s headquarEdmonton Valve & Fitting chose to support the Stollery Children’s ters. Everyone pitched in: associates, their children, family members Hospital Foundation because it’s an organization that resonated with and friends. Organizers emailed everyone they knew, asking them to everyone on staff. And for Keith, it’s also personal. When he was growing come out and support the event and they also put up signs. up, his family had to drive five hours from northern Ontario to Toronto, They were so successful at getting the word out that there were cars once a month for a year-and-a-half, so that his sister could get the medical lined up a block away. “The idea of the car wash was pretty cool,” care she needed for her eyes. “It is amazing how childhood memories can Keith says. “What we didn’t realize, was how busy we were going to 34

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PHOTOS: COURTESY OF EDMONTON VALVE & FITTING

FORE A GOOD CAUSE: One of the major fundraisers Keith Johns, shown second from right and below, holds for the Foundation is a company and customer golf tournament every June.

be. We washed all the cars by hand, from the rims and the rinse, to detailing the inside. At the end of the car wash we were laying on the ground – we had no idea what we were getting ourselves into, but to see the fulfillment on the faces of the volunteers as we rallied and took a picture with the cheque for the Stollery Children’s Hospital Foundation, made it all so complete.” The four-hour car wash raised nearly $10,000 for the Stollery Children’s Hospital Foundation. On top of the funds raised during the actual event, an additional $600 came in leading up to the car wash, brought in by Edmonton Valve & Fitting customers who weren’t able to make it to the car wash, but still wanted to contribute. “That says a lot about our customers and the community,” Keith says. “Those were individuals taking money out of their own pocket and on their own time to donate to the Foundation.” Edmonton Valve & Fitting also supports the Foundation’s annual Tee Up For Tots Golf Invitational and annual Snowflake Gala. “It’s so easy to support this organization,” Keith says. “They strive for excellence – and that includes having the best doctors, the best research, discovering new treatments and advancing clinical care; they have available the newest, most specialized equipment, while at the same time enhancing patients’ and families’ experience of going to the hospital. The fact that all this is happening right here in Edmonton is a pretty awesome story.” The Stollery Children’s Hospital and the Stollery Children’s Hospital Foundation have been able to touch many lives across Alberta and throughout Western Canada. Foundations like this one rely heavily on community donors, and corporations in particular are very powerful supporters, notes Foundation president and CEO Mike House. “Corporate support is important, not only for the funds we receive, but also for the connectivity to the community,” he says. “That connectivity to the community ultimately translates back to parents, children and families who rely on the Stollery Children’s Hospital for the best care possible.” What Keith and Edmonton Valve & Fitting have done, is “a reflection of the leader and his family, and their passion for making sure S TO L L E RY K I D S. C O M

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our community has a great children’s hospital to rely on it if you need it,” Mike says. “Keith demonstrates that, by marrying his business interests and care for his clients, with the care he has for children. They are such generous people. They want to make the world a better place, and that makes it special.”

IN GOOD COMPANY: If your company would like to organize an event to benefit the Stollery Children’s Hospital Foundation, visit stollerykids.com to learn how. S P R I N G 2 0 1 5 | HEROES

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volunteer HERO

BY Christy Nich

Grin and Bear It

WHO CAN PUT A NUMBER ON THE PATIENTS that Dr. PatchUp has come into contact with in the community, if only for a moment or two? He’s a favourite of young and old at every Stollery Children’s Hospital Foundation event that he attends. The answer to anyone who has imagined that their own teddy bear could come to life, the man behind the giant teddy bear is no less fantastic. Thomas McIntyre has been happily donning the mascot costume since the summer of 2013, making the Dr. PatchUp character his own. He answered the call to be “a very friendly bear with a very busy schedule,” with the guarantee of a fun “They have a few moments to way to be imaginative, just be a kid and basically feel outgoing and energetic, a great excuse for that there’s a big teddy bear and clowning around. that loves them.” “I went for a meeting, and they let me try it out,” says Thomas. “It went well, so I stayed as the mascot.” At 28, he doesn’t have his own children yet, but he says it’s his dream for the future. In the meantime, he looks forward to bringing a smile to young faces, to help them forget the unfair hardships they may have to face. Many of the children in the community don’t understand why their friends are at the Stollery, but they know their friends are cared for with the same compassion that they 36

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see from Dr. PatchUp when they meet him. “Being a mascot is a way to give back to the kids, and give them a chance to brush aside all of their medical issues. They have a few moments to just be a kid and basically feel that there’s a big teddy bear that loves them,” says Thomas. “You can see how happy they are. It’s like their teddy bear is coming alive, so I have a dance routine for them and everything,” he adds. He cites this year’s Snowflake Gala as one of his best times as mascot, especially when the kids joined him in Dora the Explorer’s party dance. He’s a volunteer who goes the extra mile, according to Shelley Borowski, volunteer co-ordinator at the Stollery Children’s Hospital Foundation. “Thomas actually put together a playlist of different kids’ songs – he’s got YMCA , he has rap songs and there are a few other kids’ songs thrown in there. Kids are drawn to him, to Dr. PatchUp,” she says, adding that’s in large part due to Thomas’s love and care for the youngsters, and how he makes the character come alive with his contagious enthusiasm. Shelley also cites Snowflake Gala as one of her favourite moments to watch Dr. PatchUp in action. She recalls him getting down on his knees to be with the kids, giving hugs and high fives, and dancing with them. Even with so much going on at the annual family-centred event, the little people seem to gravitate to Dr. PatchUp, like bees to honey. “I think people just feel the magic,” she says. Another memorable event was last year’s volunteer appreciation party, Gala in Blue Jeans, where three types of dance lessons were offered – salsa, Bollywood and Ukrainian. “He was hilarious, on the floor mixing it up with the kids. All the kids wanted to dance by him,” Shelley says, describing how he performed a male Ukrainian dance step, resting on his paws and kicking his feet out. “He got so into it. I think they felt that energy, too.” Every chance he gets, Thomas brings Dr. PatchUp to life through the magic, excitement and the interaction with the youngest members of the Stollery community. Shelley believes that is the stuff of the best mascots. “He’s real; he’s a real teddy bear in their eyes.” She says the Foundation is lucky to have this caring volunteer who, when not sporting his cuddly persona, works at the University of Alberta pursuing research into MRI methods. Thomas has his master’s degree in biomedical engineering and hopes to volunteer overseas in the medical field, because, “Not everyone has access to our world-class hospitals and research facilities,” he says. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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PHOTO: ANTHONY HOULE

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

The man behind Dr. PatchUp finds laughter to be the best medicine for children


BY Lyndsie Bourgon

HOSPITAL portrait

Like Mother, Like Daughter PHOTO: ANTHONY HOULE

A Stollery NICU social worker comes by her interest in the helping professions honestly

AMANDA SCHROEDER HAS BEEN INFLUENCED BY THE HEALTH care environment throughout her life, as both her mom and aunt are respiratory therapists. And although she was unsure what career path she would eventually take, she always knew that she was drawn to what she calls the “helping professions.” Amanda is now a social worker in the neonatal intensive care unit (NICU) at the Stollery Children’s Hospital. After high school, she found herself captivated by the University of Alberta’s psychology and sociology courses, and a friend recommended later that she look into the University of Calgary’s social work program at the Edmonton campus. “I learned the field was really diverse and that a career in social work could take many different paths,” she says. Amanda set out to work casual shifts at the Stollery Children’s Hospital and the University of Alberta Hospital. While she hadn’t done any of her practicum work at a hospital, she was drawn to the hospital environment because of its multi-disciplinary work. “As soon as I started providing coverage at the Stollery, I just really fell in love with the teams and the work that they do,” she says. She took a six-month placement in pediatric cardiology, which, “really confirmed for me that I love working with children and families. The NICU position came up in October 2007, and I’ve been here since then.” Her mother Dallas Schroeder – who works in adult critical care at the S TO L L E RY K I D S. C O M

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University of Alberta Hospital – says Amanda has always had a caring nature. “She is an older sister to a much younger brother, and she helped look after him,” she says. “She was an only child for nearly eight years and sometimes when you’re an only child you grow up a little faster. She was young when she committed herself to this career, and she’s conscientious and cares about people.” No two days look alike for Amanda; every day, she aims to connect with her current patients and new families that have come in overnight. Every family that visits the NICU sees Amanda or her colleague, and they do a social work assessment of their psycho-social situation, that helps determine how to best help a family in their time of need. “After that initial assessment we provide ongoing support to the families here, connecting with families at the bedside and providing day-to-day-support.” That support includes the antenatal consultation program – which supports a family after their baby has been diagnosed with a surgical condition before it’s been born. “It can be overwhelming, and they are coming to terms with the fact that the delivery and what comes afterwards isn’t going to be what they imagined,” says Amanda. Her assessments take into consideration a family’s needs and she gives them information ahead of time and helps them with relocation plans if the family lives outside of the Edmonton area. She also helps run a weekly informal parent coffee hour, with parent volunteers and a hospital chaplain, for families in the NICU and pediatric intensive care units. “The main goal is to foster peer-to-peer support and connect families with each other,” she says. “When one family meets another, they can often relate in a unique way and gain support from each other.” And through the hospital, Amanda has thrived on the multi-disciplinary experience she was so drawn to. She is a part of the NICU Family Advisory Care Team (FACT) committee, a group of physicians, staff and Stollery families that work together to improve the neonatal intensive care unit experience. It’s almost a given that Amanda’s job is challenging. She is often faced with ethical dilemmas, like when families have beliefs or values that are very different from her own. “But I’m here to support them despite that. I have to put my own values and judgments aside and ensure their voice is heard among the team.” She keeps herself healthy and active outside of work too: she runs a popular cooking and baking blog, participates in Boys and Girls Clubs Big Brothers Big Sisters (BGCBigs) programs and spends time with her golden lab, Bella. “She started her career young, so she was in her early 20s and dealing with very difficult situations,” says Dallas. It’s hard and emotional work, but Amanda says the positive aspects of it are worth it. “One of the biggest things I’ve learned over the years is how resilient human beings are, the strength of the babies and families that I work with is amazing,” Amanda says, acknowledging “those families are the ones that keep me going. When they bring their babies back to us in a few months, or a couple years, and we get to see the evidence of the good work we do, it makes this a very rewarding place to work.” S P R I N G 2 0 1 5 | HEROES

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THE LAST word

BY Lily Pinchuk

A Special Thank You Letter

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ILLUSTRATION: LILY PINCHUK

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HI. I’M LILY AND I’M 10 YEARS OLD. YOU could say that I’m lucky. I have two brothers and one sister. My big brother Jack is three years older than me. From as far back as I Apparently, there are only a can remember Jack’s and eyes had a few hundred people in the skin yellow tinge. Mom and world who have Jack’s rare Dad were always taking genetic liver disorder. Jack to appointments at the Stollery Children’s Hospital. Sometimes, I tag along. Not only does Child Life make everything more fun, but Jack’s doctors and medical team at the Stollery are always nice. They are always explaining Jack’s condition to me. I like knowing what is going on. Apparently, there are only a few hundred people in the world who have Jack’s rare genetic liver disorder. Mom says that because she and Dad are carriers for the disorder, there was a good chance that one of us kids would have it. 38

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Until last year, Jack always slept under special lights to help stop his skin and eyes from turning yellow. Now, he doesn’t need to worry about the lights because my Uncle Dave saved my brother’s life. The doctors found out that my mom’s brother was a perfect match. They took a piece of Uncle Dave’s liver and put it in Jack. It only took three weeks for Jack to feel good enough to go home. It usually takes five to eight weeks for that to happen. Mom says it’s remarkable. It’s a big deal. Last summer, Uncle Dave and Jack liked walking around without shirts. They said it’s because they’re proud of their scars. Jack’s life has changed forever. No more glowing lights at night. My brothers and sister are really thankful to the hard workers at the Stollery. After all, they fixed Jack. It’s a good thing we have confidence in the Stollery. Now, when I go to bed under the huge glowing lights, I know that my medical team will do its best to fix me one day too. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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Thank you volunteers! The Stollery Children’s Hospital Foundation would like to thank all of our amazing volunteers for their hard work, time and dedication in helping children and families in our community.

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Thank you to our participants, volunteers, salons, donors and sponsors! On behalf of Hair Massacure founders, the MacDonald family, our supporting charities and the thousands of kids with life threatening illnesses, thank you for helping us raise more than $1.2 million for:

CORPORATE PARTNERS CORPORATE SUPPORTERS

PM 40012957

MEDIA SPONSORS

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HEROES - Spring 2015  

HEROES magazine is the quarterly publication of the Stollery Children's Hospital Foundation.

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