Education

Building kids up
through education

When Carol Fowler’s grandson Steven was diagnosed with a brain tumour in 1998, there were very few programs to help children with cancer stay engaged with school and learning. A retired teacher, Carol took on the challenge of helping her grandson in his desire to keep up with his studies. Now, with a three-year gift to our Education Support Program, Carol is ensuring that other children receive the support they need both during and after cancer.

Carol and her son Charles (Chuck) first noticed something was wrong with Steven while on a family vacation in Hawaii. Steven was in grade four and his brother Bryan was in grade one.

“Being a teacher, I had the boys writing in their journals,” says Carol. “We noticed that Steven’s handwriting was regressing. He was dropping things and was quite clumsy.” This was unusual for the 10-year-old boy, whose fine and gross motor skill development had always been strong.

Steven was assessed, and within a short time, he was diagnosed with a brain cancer. Unfortunately, the surgery didn’t get all the cancer and Steven was left partially paralyzed on his right side. This meant he could no longer do the things he loved, such as swimming, cross-country skiing, curling and playing baseball and soccer.

Months of chemotherapy compromised Steven’s immune system, so he could no longer attend school or be with his friends.

Cut off from school, sports and friends, Steven asked for a laptop when he was given the opportunity to make a wish through the Children’s Wish Foundation. This was in the ‘90s when laptops were still a rarity, but the 10-year-old boy quickly mastered the art of email and many games of the day. He even designed and printed his very own line of greeting cards, which gave him great pleasure.

“The laptop was fantastic for Steven,” says Carol. “It opened up a whole new world for him.”

Steven’s family registered him for homeschooling through Alberta Education, so he could continue with grades four and five.

As a former teacher, Carol understood the importance of Steven keeping up with school. “Part of a child’s identity is being a good student. It’s so important for children to keep up with their studies. Falling behind can have long-term effects on a child’s self-esteem.”

It took some convincing, but Steven’s father eventually returned to work at CIBC. Every morning, his grandmother Carol arrived at their home to care for and teach Steven.

Sadly, the cancer would not relent and after 18 months of treatment, Steven passed away at the age of 11. Those who knew Steven, remember him as a kind and sensitive boy, but it was his courage and determination in facing cancer that inspired so many.

“It is painful to remember that time, so we try to remember the good times with Steven,” says Carol. “You kind of have to push the hurt to the back of your mind because it is too painful. The best thing to do was to make a tribute to him.”

As Steven’s grandmother, Carol understands the pain and suffering that a diagnosis of childhood cancer brings to families. She knows first-hand how difficult it is for parents to juggle work, childcare, medical appointments and household duties, while also caring for and schooling a child with cancer.

Carol’s gift to the Education Support Program will help lighten the load of parents and give children like Steven a chance to keep up with school. The three-year investment will enable Kids Cancer Care to expand and build capacity in the Education Support Program, evaluate and analyze program outcomes, and deliver a more robust program that will help more children.

“This gift is helping us to realize the full potential of this program,” says Karin Schlegel, a former teacher who specialized in early childhood literacy and now works as a part-time education support specialist at Kids Cancer Care. “We are so grateful to the Fowler family for believing in this program and for making such an important investment in the education and future of children affected by cancer.”

Carol couldn’t be more pleased with the progress of the program: “I’m pleased to see the growth and the passion and dedication to make education easier and more cohesive for children with cancer.”

Thank you, Carol and the whole Fowler Family, for believing in Kids Cancer Care and generously investing in the lives and futures of children affected by cancer.

camp

Finding healing in
unexpected places

Marie Howell and her three sons have been isolating since April 2017 when Jaxon was diagnosed with high-risk acute lymphoblastic leukemia (ALL). As Jaxon was nearing the end of his four-year treatment, the boys were just starting to get a taste of freedom again when the pandemic hit. Back into isolation once more. Thankfully, you were there for Marie and her sons, offering them their first family vacation and an opportunity to heal at Camp Kindle.

“Camp Kindle is a magical place,” says Marie. “It still feels healing even though no one is there right now. You roll up and come in and it feels like a hug from a dear friend.”

When COVID-19 forced Kids Cancer Care to cancel summer camp programs in 2020, the team at Camp Kindle immediately got busy and creative. It wasn’t long before they’d designed a whole new camp program that was fun and unique, but most importantly, pandemic proof. Glamp Kindle gives Alberta families facing cancer a chance to get out of the city for a three-day vacation at Camp Kindle.

Only two or three families are on site at a time. The families stay in different areas of the camp and are on different schedules, so there’s no chance they will run into each other.

For families like Marie’s, who have been isolating for years due to a child’s cancer, Camp Kindle is the only place outside home that is safe and hygienic for children with compromised immune systems.

“We worked closely with Alberta Health Services to develop our COVID-19 infection, prevention and control measures to be able to offer Glamp Kindle safely,” says Leighana Shockey, director of Camp Kindle operations. “When a family leaves, our cleaners come in and disinfect the entire place before the next family arrives.”

When families arrive at their lodge, they are greeted with a basket of goodies—s’more kits, crafts, games and activities—for their holiday. Each basket is lovingly and thoughtfully prepared by Camp Kindle staff.

“The space was so huge and clean,” says Marie. “The first thing the boys did was run to their rooms and pick their beds.”

Four plush Linus blankets were also waiting for the Howell family. “The boys love the blankets,” says Marie. “They wore them all the time in the house. They wore them when we were gathered around the table, playing games and making crafts. And now they wear them all the time when we’re back at home.”

While at camp, Jaxon and his twin brother Ryan (8) and their older brother Ethan (11) played street hockey with their mom in the large parking lot outside the Ranch House where they stayed. They played Carpet Ball for hours and finished the scavenger hunt set out by Camp Kindle staff. Taking Marie around to the climbing wall, ropes course and zip line, the boys literally showed Mom the ropes at Camp Kindle.

Although the weather was snowy and cold, they completed a couple of hikes together. Only Mom made it all the way up to the Reflection Garden, where she said a prayer for the families who have lost children and for those whose children have relapsed this year.

But the single most healing and restorative moment of their Glamp Kindle experience was when they found themselves huddled in the Pisces Fort. The Pisces Fort was designed by Leanne Bunnell Interiors and built by Unique Projects for Camp Kindle as part of the 2019 Barley and Smoke fundraising event.

“We sat in the fort together and talked about how Jaxon’s cancer changed our family for the better,” says Marie. “They all opened up and talked about how his treatment affected them. Ethan’s been to Camp Kindle a couple of times and he’s learned it’s safe to talk about cancer. We probably needed to have that conversation and it happened organically there at Camp Kindle. It was a safe space where we opened up and left with the feeling that this is behind us now—an endnote to his treatment.”

As a single mother, Marie is especially grateful for the educational, therapeutic and recreational programs that you make possible with your generous gifts. Marie is grateful for the tutoring sessions, the PEER exercise classes and the many camp and outreach programs that offer her family a healing community to renew and rebuild their lives.

“I don’t think our mental health would be as strong without Kids Cancer Care,” says Marie. “The fear and isolation take a toll on the kids and the family as a whole – the boys sanitizing their hands the minute they get into the car when I pick them up from school, showering before they can play in the house, the trauma of your child coding as a crisis team of nurses and doctors yell orders. I never want to experience that again.”

While traditional summer camp is cancelled due to COVID-19 again this year, families like the Howells are still looking forward to a much-needed family vacation at Camp Kindle this summer.

“Yes, they miss camp! Absolutely!” says Marie. “But we are so grateful to have this magical camp experience that is still safe for us and all the families in our community. Every family should have this experience. Every family who’s been through cancer needs this experience. The isolation, the fear, the toll it takes on families is unbelievably difficult. Camp Kindle is calming and restorative. Every family needs this.”

Thank you for making a healing and restorative get-away possible for families like the Howells.

Fundraising

Weighty decisions
lifting big burdens

It was a decision five years in the making, but it was a decision that would pay off—in more ways than one. When Amy Stevens first considered cutting her hair for Kids Cancer Care, she imagined she would donate it for cancer wigs for children.

Then she realized she could do more.

When Amy was married in August 2015, she had been growing her hair out for some time. Knowing she would one day chop it all off for cancer wigs, Amy continued to grow her hair and resisted the urge to colour it. To donate your hair for cancer wigs, the hair must be at least eight inches long and be untreated. No chemicals. No colour. No highlights. No bleach.

“The idea of shaving it popped up,” says Amy. And the idea kept nagging at her. “It took a while to convince myself, to work up the courage.”

When she finally did commit, Amy was all in. “Go big or go home!” Amy laughs good-naturedly about her tendency to delay decision-making. But once she commits, it's no holds barred. “I can be kind of an all or nothing person.”

Amy chose the perfect time to support Kids Cancer Care, raising much-needed funds when fundraising efforts were hampered due to the pandemic.

What began as a $3,000 fundraising goal quickly jumped to $7,500, but Amy was secretly hoping to raise $10,000. In the end, she exceeded all her goals and her wildest imagination, raising $23,000.

“When I first decided to do it, I wondered about the effect of COVID-19 on fundraising,” says Amy. “I thought, ‘Maybe I could raise $10,000.’ I needed to be realistic, especially in a pandemic.”

Amy was pleasantly surprised. Her friends, family and colleagues stepped up in droves and supported her courageous decision. She was well on her way to hitting her $10,000 goal when a $15,000 donation from the Bob Collier Foundation pushed her total well over the top. The Bob Collier Foundation provides financial awards to farming and agricultural students at Olds College who exhibit innovation, creativity and an entrepreneurial spirit in reaching their goals. The foundation also gives to individuals and charities that demonstrate a similar aptitude for innovation. Both Amy and Kids Cancer Care fit the bill.

Amy was emotional on shave day, but it wasn’t the shaving or the fundraising success that touched her at the deepest level: “The hair part was not as big a deal as I thought it would be. I was more emotional about all the support of my friends and family.”

The Big Brave Community Event was live streamed at Great Clips by Megan Gough, our marketing and communication specialist, who just happens to be Amy’s best friend from childhood. “Megan was there, moderating and reading all the comments coming in. I was only allowed one person at the event, so I chose my husband. Connor had my family on a group call and I could hear everyone cheering me on. I felt really loved and grateful.”

For Amy, sacrificing her hair was “absolutely worth it! To be a catalyst for something so great, feels amazing. I get to go through all the different hairstyles as my hair grows out. Every time, I look in the mirror I am reminded that I chose to stand in solidarity for children who have no choice in losing their hair. Every time someone notices or checks in with me about my hair growth, it’s awareness for this amazing cause and organization. I am so happy I gave in this way.”

Thank you, Amy and all the generous donors and brave souls who chose to cut, colour or shave their lids (moustaches or beards) for the kids in 2020.

Thank you Trico Homes, Great Clips, Virgin Radio, CJAY 92 and Funny 1060 for generously supporting our Big Brave program.

Outreach

A single act of kindness
goes a long way

When the World Health Organization declared COVID-19 a pandemic in March 2020, the teens in our Teen Leadership Program (TLP) were more than a little disappointed. After a year of fundraising and planning, their service trip to Mexico to help low-income families would be cancelled. Now, they faced some important decisions. What would they do with the funds they’d raised? And how would they continue to give back during a global pandemic?

The pandemic presented the teens with valuable life lessons in resilience and social responsibility. Together, they would decide whether to save the funds they’d raised for their next service trip or donate it to Homes for Hope and allow another group to build the home they were scheduled to build.

It was a unanimous decision. The teens chose to donate the funds, so the house could be built without them. The closest they would get to the home-building project was a few photos and the knowledge that they had helped provide a home for a family in need.

“I am so proud of them. It was an important lesson in being flexible and socially responsible. They transformed a difficult situation into a life-affirming gift, and they gave without fanfare,” says Nikki Lamarche, who oversaw the travel project in 2020.

But the decisions and life lessons didn’t end there.

TLP offers teens affected by childhood cancer important life lessons that build character, resilience and transferrable life skills. It does this by creating an inclusive and supportive group of teens who can grow and learn from each other.

Some of the life skills the teens take away are resumé writing, applying for post-secondary scholarships, budgeting, fundraising, working and planning projects as a team, giving back to and raising awareness for causes they are passionate about.

Despite the pandemic, it has been an extremely busy, productive year for the teens.

Maeve Balmer is one of 10 teens who would have graduated from the program if her final year hadn’t been interrupted by the pandemic. TLP program coordinator Kaity Doiron invited Maeve and the others to come back and make up the year.

“This year, I really wanted to join back in because I really like TLP and I found that once I graduated high school, everything I had that was fun, ended, and I was like, ‘What do I do now?’ So, I was really happy when Kaity said I could come back to hang out and volunteer.”

Now 18, Maeve is a third year TLP youth who has really stepped up, while completing her first year of animal biological studies online at the University of Calgary. She put together a scholarship presentation to help the teens navigate the application process for post-secondary scholarships.

Maeve was also a part of a panel of young women who presented in a webinar on how to prepare for post-secondary studies. The webinar addressed a range of questions including how to apply to schools, how to apply for scholarships, where to live while studying, how to join athletic teams and student clubs and more.

While Maeve is giving back, she is finding that she is also benefitting: “With university moving online, I haven’t really had the chance to make any friends yet, so it’s been really nice to be able to talk to everyone in TLP,” she says.

Jack Godefroy, a teen in the TLP program, also appreciates the dual focus of the program: “TLP is a good chance to work on leadership skills and make some friends while doing it,” he says. “Having some fun, but also learning some key things that I might need in the future like public speaking and fundraising.”

Jack lives in Canmore and would normally have to drive into Calgary to attend TLP meetings. While he doesn’t mind the drive, he likes the accessibility of the online sessions.

“People from all around the province could join TLP,” says Jack. “Now that we’ve figured out how to use online platforms, even if it goes back to in-person, you could still have some people participating at a distance online.”

Diagnosed with high-risk acute lymphoblastic leukemia at the end of grade five, Jack was on treatment, with limited social contact, for all of grade six, all of grade seven, all of grade eight and half of grade nine. When COVID-19 hit, Jack would need to isolate for grades 11 and 12.

“This past year, the game nights have been my favorite part of TLP,” says Jack. “That’s where we make up for the social thing that we’re missing in the online TLP meetings.”

While Jack appreciates the social aspect of TLP, he recognizes that the online version of TLP has its limits: “Some people have their cameras turned off, so it’s kind of hard to interact and meet people online, but I like the fact that we’re still able to get together, even though we can’t meet in person.”

Recognizing that teenagers are particularly vulnerable to the mental and emotional toll of prolonged isolation, Kaity incorporated a mental health component in the program. During the Bell Let’s Talk campaign, the teens took over Kids Cancer Care’s social media channels, posting about the importance of reaching out and sharing openly about mental health. Kaity also amped up the social part of TLP. One of the new social games she introduced was an online escape room, generously sponsored by Mobile Escape. It was a huge hit.

“The escape room was a good way to actually motivate interaction,” says Jack. “If you're in a small breakout group, you can work together with your team. It’s good to have some more interaction.”

In addition to socializing and developing life skills at TLP, the teens and their parents are noticing increased confidence levels and a boost in their moods. “It is definitely a good confidence boost,” says Jocelyn Pricca who is in her second year of TLP. “Just meeting other kids my age who have been through the same stuff is great and we're all working together to give back and help others.”

Josh Stalker’s mom couldn’t agree more: “The big difference I've noticed with Josh is his confidence in talking to people and being able to approach someone,” says Victoria. “He's been taken out of that bubble and they've coaxed him to do a variety of things, interacting with unfamiliar people, which was unheard of before. It's just been great for Josh in so many ways and it trickles down into everyday life.”

Thank you for empowering our teens by supporting our Teen Leadership Program.

Volunteering

Big hearts with
big commitments

“Volunteers do not necessarily have the time; they just have the heart.”—Elizabeth Andrew.

As a fulltime biomedical sciences student with her sights on med school, Shaelene Standing has anything but time. Juggling work as a bioinformatics pediatric cancer researcher and multiple volunteer positions, Shaelene doesn’t have the time, but she does have the heart. Fortunately for us, she shares her generous heart and creative spirit each week at our PEER exercise program.

A year into the pandemic, PEER relies on innovative and energetic volunteers who can think outside the box to deliver online and outdoor exercise classes that help kids stay active and social while managing the isolating and deconditioning effects of cancer treatments.

“I am so fortunate to cross paths with such amazing volunteers at PEER,” says Dr. Carolina Chamorro Vina, who runs the research-based exercise program developed by cancer clinicians and researchers at the University of Calgary and Alberta Children’s Hospital. “Shaelene is one of those volunteers. She is curious and creative, always thinking outside the box. She constantly asks questions about each child’s cancer diagnosis and how she can adapt activities to better support the child and improve their quality of life. It’s really amazing to have her on our team.”

Shaelene arrived at the perfect time. Joining PEER in the fall of 2019, she had just enough time to get to know the kids in person before the pandemic was declared in March 2020. When the world shut down, Shaelene was there to help re-imagine the program for virtual platforms.

Every Wednesday, Shaelene meets kids and teens on Zoom for two different exercise sessions, leading them in fun and engaging physical activities.

The Zoom sessions are just the tip of the iceberg in terms of time and effort. Before going live on Zoom, Shaelene helps plan exercise units that involve circuit training, games that are both socially and physically engaging (e.g., physical Hangman, scavenger hunts) and activities that build physical literacy skills, strength, balance, flexibility and endurance. Each activity includes special modifications, unique to each child for their specific challenges.

But delivering therapeutic exercise classes online is not without its challenges. “You just don’t get quite the same special connection between the kids online,” Shaelene says. “You don’t have the same ability to be hands-on when demonstrating modifications and it’s harder to describe the exercise or game.”

While Shaelene acknowledges its challenges, she is the first to recognize the benefits of online sessions: “We are reaching more kids online, especially kids outside the Calgary zone, and we are reaching more new children. We’re also reaching kids at the hospital and those who previously couldn’t attend in-person because of treatment or immunity issues. Now we are reaching these kids.”

Shaelene has also taken the initiative to further support families during the pandemic by donating her handmade masks, leading the development of the PEER website and developing a new program to foster connection between newly diagnosed and off-treatment families.

But what inspires Shaelene the most is seeing the kids at PEER grow and develop over time. “It’s amazing to see kids jumping rope or dribbling in the beginning and to see how far they have come now,” she says. “There are definitely some teens, who are a bit shy, which is something you would expect in this age group. At first, they kept their cameras off, but over time, they started turning them on. This may seem minor, but it is huge. It highlights how accepted and supported they feel at PEER. Knowing that we are leading these kids in movement and exercise in a space where they are excited to try new things and are willing to be vulnerable is a huge reminder of how important this program is.”

Thank you to the Flames Foundation and our amazing PEER volunteers for making this essential program possible for children affected by cancer.

Research

Making big changes
for the tiniest people

While advances in medicine are saving more children with embryonal tumours, they often do so at a cost. Your support is helping to change this. Drs. Lafay-Cousin and Fay-McClymont are leading an international study to understand the impact of current drug therapies on the development of these children and how the therapies affect their performance and quality of life. Your support is making this vital research possible and offering children hope for a better future.

Embryonal tumours are rare and aggressive brain tumours that develop in very young children. Because their brains are still developing, infants and toddlers are especially vulnerable to treatment-related toxicity, which can cause a lifetime of serious health issues including hearing loss and neurocognitive issues.

Collaborating with researchers around the world, Dr. Lucie Lafay-Cousin, a pediatric neurooncologist at the Alberta Children’s Hospital (ACH) and University of Calgary (U of C), and Dr. Taryn Fay-McClymont, a pediatric neuropsychologist at ACH and U of C, are assessing the long-term survival outcomes of children treated for embryonal tumours as infants or toddlers.

The ultimate goal of the study is to create an extensive database on the neurocognitive outcomes, ototoxicity profiles (adverse reactions to drug therapies that affect the inner ear or auditory nerve), and the quality of life of these children.

Information gathered in the study will provide vital information that will help health care professionals and parents make more informed decisions about treatment options that cause fewer long-term side effects. This information is currently very limited as embryonal tumors are so rare. Most pediatric oncologists may only see a handful of children like this over an entire career. Thanks to you, this research study will ensure the information is collected and made available around the world, benefitting children everywhere.

The study comes at a critical time as clinician researchers are investigating new medications to prevent or reduce treatment-related toxicity. Currently these medications are being investigated for use in older children or in post-radiation treatment scenarios. The findings will lead to a better understanding of the treatment-related deficits in younger children and create a case for investigating the use of such drugs in younger children too. The information could significantly improve the long-term outcomes and quality of life for these children.

Childhood cancer receives only 5% of government awarded research funding in Canada. Thank you for creating better lives for children with cancer by choosing to support pediatric cancer research.