Transforming lives: building a volunteer legacy

“I want them to know they are changing lives at Camp Kindle. Kids can develop and grow with all that encouragement, support and commitment. There are small wins and big wins that will change the course of a child’s life forever. I believe this for Levi!”— Levi’s mom Cheryl

Jack Perraton was known as the ultimate volunteer, and among his many volunteer roles was his nine-year term as chair of the Kids Cancer Care Board of Directors. During Jack’s term, the foundation experienced tremendous growth, and the crowning achievement of those years was the purchase and planned renovation of Camp Kindle.

When Jack passed away in February 2012, after his second battle with cancer, his good friend JR Shaw of Shaw Communications decided to do something special in his memory — something that would honour Jack and the life he lived. Jack had passed away before the renovation of Camp Kindle could be completed, and JR felt that completing it in his name would be a lasting tribute to Jack’s spirit and generosity.

“Jack was the ultimate giver, the ultimate volunteer,” JR said during a 2013 reception to honour his friend and celebrate the opening of the Jack Perraton Volunteer Lodge at Camp Kindle. “He set an example for all of us and his footprints, I’m sure, are everywhere here. He would be so proud to have his name on this volunteer lodge.”

Along with Jack’s footprints will be those of countless volunteers to come — volunteers who will also leave a lasting impression in the lives of children with cancer. With a charitable contribution to our 2017 volunteer program, Shaw Communications is helping keep the volunteer legacy alive by providing the necessary resources to attract and maintain the best volunteers at Kids Cancer Care.

“Volunteers are the heart and soul of Kids Cancer Care,” says Christine McIver, who started the foundation over 20 years ago as a volunteer. “We are so grateful for this gift from Shaw Communications. It is the perfect way to keep Jack’s volunteer spirit and legacy alive, while helping us to recruit, train and retain volunteers for tomorrow.”

Eleven-year-old Levi is one of many kids to experience the lasting influence of volunteers in his life. Diagnosed with high-risk leukemia at 18 months, Levi endured repeated rounds of chemotherapy that lasted until he was five years old. Although Levi is cancer-free today, survival came at a cost. He suffers from high levels of anxiety and neurocognitive issues that are affecting his ability to learn and function at optimal levels. Levi’s psychologist believes he suffers from post-traumatic stress disorder due to the invasive medical procedures he received as an infant.

For years, staying overnight at Camp Kindle was out of the question for Levi. The thought of being away from home for a whole week was just too stressful. Each time he tried, his anxiety got the best of him and he came home from camp mid-week. With energetic coaxing from his parents, Levi decided to give Camp Kindle another try.

After a couple of rough patches on Monday and Tuesday, and repeated telephone conversations with his mother, Levi reluctantly agreed to stay on until Wednesday. Meanwhile, his mother Cheryl and Levi’s counsellors met by telephone each night to explore ways to help him manage his anxiety. When Cheryl spoke with Levi on Wednesday evening, she couldn’t believe the transformation in her son.

“I could hear joy and confidence in his voice. He was proud of himself!” she says.

Levi’s victory at Camp Kindle is now spilling over into other parts of his life. “Getting that psychological demon off his back was huge,” Cheryl says. “It’s a total game-changer. He gained so much that week at Camp Kindle that he’s riding off now to face other fears.”

Finding the perfect complement of volunteers at Camp Kindle is essential to a child’s camp experience, and the nature of the role requires rigorous screening and intense training.

“The time and resources dedicated to recruiting and training these volunteers is significant, so retention is also a huge focus for us,” says Tracey Stahn, who oversees the volunteer program at Kids Cancer Care. “Shaw’s support will go a long way to helping us achieve these complementary goals.”

Thanks to companies like Shaw Communications, kids with cancer will continue to feel the lasting impact of volunteers at camp and at every stage in the cancer journey. Volunteers are active on all fronts of the foundation, from volunteer cooks who prepare home-cooked meals for newly diagnosed families, to one-to-one camper aides who provide extra support at camp, and specialized tutors who support children struggling at school. Shaw’s gift to the volunteer program will leave a legacy of giving in the hearts of children with cancer.

A proudly Canadian company, Shaw is committed to improving the lives of Canadian kids and youth through the Shaw Kids Investment Program (SKIP). To learn more about SKIP, visit Shaw.ca/SKIP.

Volunteers in action at Kids Cancer Care
On the frontlines at camp or behind the scenes at our fundraising events, 300+ volunteers are active at all levels of the foundation. They are the heart and soul of our work, giving over 16,000 hours each year.

Years ago, when I was a small child, I received a new cancer treatment that saved my life. Right now here in Alberta there are children who need new treatments because current therapies are not working. To show you how important these treatments are I’d like to share my story.

It starts way back in September of 2001 when I was four and my Mom and Dad noticed that I was unusually crabby and irritable. I wasn’t myself at all. Normally I was a happy and energetic kid. But, at that time, I was so tired I used to curl up on the couch and have a nap after breakfast. Sometimes, climbing the stairs was just too much. I would wait at the bottom of the stairs for my mom or dad to carry me up to my room. My parents thought my change in behavior was due to the recent changes in our life. I had just begun pre-school and my mom had just started working again.

Eventually, my skin became so pale and my eyes, so puffy, that my parents took me to the doctor. In the beginning, the doctors thought my symptoms were from allergies. Then I started having these high fevers, so we took a trip to the emergency, where they finally did blood work.

Although my family wanted answers, no one was prepared for the shocking news and the terrifying statistics that came with the results of my blood work.

At first it looked good. Doctors originally thought I had acute lymphoblastic leukemia (A-L-L), a leukemia with high survival rates in children. But when I went in for a test the next day to confirm the diagnosis, the doctors hit us with even worse news. With sinking hearts, my Mom and Dad learned that I didn’t have A-L-L. I had a cancer that was very aggressive and not often found in children. Acute myeloid leukemia. My long-term survival rate was suddenly cut in half.

Knowing that 25% of children with A-M-L don’t survive the first phase of chemo, the doctors offered my parents a new treatment protocol. I was one of the first patients at the Alberta Children’s Hospital to ever receive this treatment.

And so I began my first of four rounds of chemotherapy. Strangely, instead of making me sick, at first, the chemo made me feel better. My body wasn’t producing red blood cells or platelets and I had just received my first of many, life-saving blood transfusions. I was coming back to life again.

I finished the first half of that round of chemo and had a three-day break. I looked better than I had in months and we were excited to get our family pictures done.

But by the ninth day of treatment, I had zero white blood cells and the fevers began. They were relentless, hovering between 38 and 41. The drugs that once made me feel better were now making me sick. When I finished that first round of chemotherapy, they put me on the strongest antibiotics possible. Without any white blood cells, my body had nothing to fight infection on its own. Even the strongest antibiotics didn’t work.

Those hours you spend with or without white blood cells can make all the difference. It can determine whether or not you live. But the antibiotics can only do so much without help from your body. It was critical to get my white blood cells back up…so I began daily injections. After 48 hours in ICU, new blood work brought some good news. My white blood cells were coming back and, after a bone marrow biopsy, they discovered I was in remission!

That was round one.

Due to the complications I experienced during the first round of chemo, the doctors changed my second round. Despite the changes, the second round hit me hard. My weight dropped dangerously low. I wasn’t eating and I had excruciating pain in my chest. When the pain in my chest grew, they did some tests and found I had fluid around my heart and scar tissue in my lungs. I was four years old and I had suffered a heart attack! They did a laparoscopic lung biopsy to remove the fluid around my heart. But it wouldn’t budge. Finally they used a much larger needle and extracted the fluid.

After the chest tube was removed, I finally took a turn for the better. I wanted to eat for the first time in months. When I found out that Santa was coming to the hospital, I got super excited. And, for the first time since I’d gone into the hospital, my mom believed I would be home for Christmas.

She was right. I got a two-hour pass to go home on Christmas Eve. Although I spent most of the evening in my father’s arms, it was amazing to finally be out of the hospital.

I began my third round of chemo in the New Year and then my fourth. During my fourth round of chemo, I had a fever for 28 days! I ended up with another fungal infection in my lungs. By the end of the last round of chemo and, after 7 months in the hospital, my parents couldn’t believe they were finally taking me home.

Mom tells me that the shock of hearing the words, “Your child has cancer,” cannot be explained. The fear and uncertainty ran so deep, she felt like her world had stopped.

How does a child survive cancer? How do you take care of such a sick child and still care for your children at home? How do manage to go to work each day, when you’ve been sleeping on a cot next to your daughter’s hospital bed?

My bothers and I became my mom and dad’s total focus. Their daily routines were filled up with us, constantly spelling each other off for work or hospital shifts. My mom had only been back to work for three months when I was diagnosed. Needless to say she quit her job and I became her new daytime focus. My brothers were in school, so my mom would get them off to school in the morning and then come to the hospital to relieve my dad who spent every night with me — either on a cot or in a Lazy Boy. My dad would head to work for a few hours and then pick up my brothers from school and have dinner with them. Then around seven o’clock, my dad would come back to the hospital, relieve my mom, who spent every day with me.

They did this for seven months! They had very little time together and carried around an enormous amount of stress and anxiety.

My brothers Owen and Evan were only six and seven and they were feeling really lost during this time. With only one parent around at any given time and a sister in the hospital, they were forced to grow up too quickly. They had to answer questions that no child should have to answer. Questions about cancer, chemo, hair loss, even worse, death.

That’s where Kids Cancer Care came in. They scooped us off that summer and gave us the magic of camp! They connected us with kids who knew exactly what we were feeling. They gave us a place where no one stares and where no one has to answer questions or feel like they need to hide.

After that week at camp, we started feeling like kids again and, my parents had time to regroup. It was then that they realized we were going to be alright. We were all okay. Finally.

But really it wasn’t until Christmas 2002, more than a year after my cancer diagnoses, that the cancer-focus of our family finally started settling into the background — not our of our minds completely, but moving to the sidelines.

My mom says sometimes she doesn’t know how we all survived it. But somehow we did. She says you find the strength and courage you need and you learn that you have inner reserves you never knew you had.

Seeing me go through this was terrifying for my parents. The intense schedule they had to keep was physically demanding and emotionally exhausting. Cancer is tough on kids but sometimes I think it’s harder on the parents.

I wouldn’t be here today if not for that new treatment protocol. It was tough on my body, but it saved me. That treatment would not have been possible without research. It seems almost miraculous when I think about it.

I hope you realize now why I am so grateful for people who support Kids Cancer Care’s research program. Thank you. Please remember that the research you are supporting today could save a child’s life.

~ Kate

Kate’s photo gallery

A cross-country runner, Irish dancer and self-described science nerd, Colette was just a normal 13-year old kid. But there was nothing normal about the pain she was experiencing in her stomach. Due to the pain and an accompanying virus, Colette visited her doctor. The doctor ordered scans which revealed a mass in her stomach.

Colette and her family were hopeful that the mango-sized tumour removed from her abdomen would test benign.

On July 24, 2014, Colette and her parents received the results.

Before the mass in her stomach was discovered, Colette loved to dance. She had been an Irish dancer since grade one. It was a major part of who she was. During surgery, the tumour was found to be wrapped around a femoral nerve, which meant they had to cut some of the nerve to remove the tumour. A 12-cm gap was left in her nervous system’s electrical circuit. Now, messages from her brain that tell her leg to move no longer get there.

Colette could no longer use her knee properly for walking, dancing, running or jumping. Once a cross-country runner, she was now using a walker just to move around a room.

But that wasn’t all that Colette was facing in those first days after surgery. Unfortunately, the tumour was not benign. Colette was diagnosed with synovial sarcoma.

“I didn’t know what to think, which I guess, begs the question: What do you think when you are first diagnosed with cancer? Maybe treatment options? At least something. Well, I thought of nothing. For the first time in my life, I drew a complete blank. I didn’t know what to think.”—Colette.

On the second day of her grade-9 school year, Colette had her first chemo treatment. She describes it as having the worst stomach flu, over and over again. She couldn’t attend school due to feeling ill or her compromised immune system. She began to feel isolated from her friends. Would she ever feel like a “normal teenager” again?

While on treatment, Colette was registered for a weekend camp at Kids Cancer Care’s Camp Kindle. Colette and her parents were nervous. Leaving home in Calgary, where she was visiting the hospital every other day, to head out to Camp Kindle in rural Alberta, was unnerving. But Camp Kindle is unique – the facilities are tailor made for kids on and off treatment. The ReKindle Clinic on site takes care of everything. Nurses ensure medications are double-checked. And Colette no longer felt isolated. “At camp, there is an unspoken understanding that brings everyone together. I could just be me, not the girl with cancer, because there, I wasn’t different.”

After multiple surgeries, chemotherapy and 28 days of radiation, Colette finished treatment in January 2015. Life will always be a little different for Colette. She has undergone nerve transfer surgery in the hopes of gaining some function in her quad, but for now, it is a waiting game and she is grateful for even the slightest improvements.

“I like to think that my doctors and surgeons saved my life and Kids Cancer Care helped put me back together,” says Colette. “Kids Cancer Care has been with me every step of the way”

Colette has experienced all Kids Cancer Care has to offer for kids affected by childhood cancer – she’s been a part of the Teen Leadership Program, PEER Program, and more.

Kids on treatment aren’t the only ones who feel isolated. Colette’s parents have also been on the Kids Cancer Care Dragon Boat Parent Team and to parent activities like yoga and cooking class, where they can meet parents who have been through the same worries, anguish and pressure.

“I’m setting my sights on new sports and experiences. Today, I feel like I am back to being a typical teenager,”—Colette.

But there’s more to Colette’s story.

Last summer, Colette was able to expand some research for a science fair she had done during her cancer battle and joined Kids Cancer Care researcher Dr. Aru Narendran in his lab as a Kids Cancer Care summer research student. Colette was able to see firsthand, research that may one day change the course of childhood cancer forever. Colette studied a unique new drug against three types of neuroblastoma and found that it inhibited growth in all three by stopping the action of a protein called EZH2, which is involved in blocking tumour suppressor genes. Colette’s findings seem to suggest that the drug may not only be inhibiting cancer growth; they may actually be inducing cellular death in the neuroblastoma cells. Another promising attribute of the drug is it doesn’t seem to attack regular cells, which could mean fewer side-effects for patients.

Colette’s life was greatly impacted by childhood cancer, but Colette has set her sights on being part of the quest for a cure. She plans to pursue a Bachelor of Health Sciences at the University of Calgary and follow that with post-graduate work in pediatric cancer research.

Colette believes that “one day with further research, cancer treatment will be less harsh or hopefully, someday, there may be no cancer at all!”

“Tundra is the ideal community partner.” – Jill Miller

When you think of tundra, you typically think: “Vast rocky terrain in the frozen hinterlands—cold winds and permafrost.” But there’s another kind of Tundra in North America that’s a whole lot warmer, a lot more fun and definitely a lot more charitable.

Tundra Process Solutions Ltd. joined Kids Cancer Care in 2010 as a community fundraising partner and has given with gusto ever since. Specializing in industrial equipment solutions for companies across western Canada, Tundra manages to build fun and friendship into everything they do. Their work-hard, play-hard attitude has seen the company grow 50 per cent every year for the past decade. They are the seventh fastest growing company in Canada today.

Fortunately for Kids Cancer Care, successful fundraising seems to come as naturally to Tundra as hard work and serious play.

“We’ve always been a community-minded company,” says Iggy Domagalski, partner and chief operating officer at Tundra. “And a few years ago, we were looking for a charity to support. It had to be a local children’s charity that could really engage our staff and give them a chance to make a meaningful contribution. Kids Cancer Care was a perfect choice.”

Since then, Tundra has become a major fundraising force for children with cancer. They annually host ugly sweater days, curling bonspiels, indoor rock climbing events and Stampede ho-downs. With matching gifts from the company, Tundra’s 200-strong team has raised $100,000 for Kids Cancer Care.

Tundra has also donated significant amounts of time and equipment to a large heating project at Camp Kindle. Valued at $25,000, the new heating and ventilation systems will ensure our campers stay warm at night and provide a safe and warm indoor space where they can play all year long.

Their philanthropic spirit has not gone unnoticed. Giving at least one per cent of their profits to charity, Tundra is an official Imagine Caring Company.

“Tundra is an ideal community partner,” says Jill Miller, manager of community and signature fundraising events at Kids Cancer Care. “They have literally given across all areas of the foundation. And they’re amazing to work with.”

Tundra even manages to help Kids Cancer Care, while building up Tundra employees. They rented Camp Kindle for their 2015 staff teambuilding retreat, where any profit generated from the rental goes toward our cancer camp programs.

But that’s not all.

Iggy took part in the 2015 High Hopes Challenge, raising over $20,700 doubling his $10,000 fundraising goal, before he and the other challengers headed for Camp Kindle to master the challenge course with their kid coaches.

Iggy is also an active member of the Kids Cancer Care Board of Directors, where he is the volunteer chair of our fundraising committee. As a member of the board, Iggy and the other board members are responsible for the financial oversight and strategic direction of the foundation.

“When we came to Kids Cancer Care in 2010, we were looking for a partnership, something where we could be fully integrated with the charity’s mission,” says Iggy. “We originally chose Kids Cancer Care because they met certain criteria, but we stay because of who they are as an organization. We share the same culture of fun and our staff has really identified with their work and cause.”

Indeed, even children of Tundra staff are getting involved. In 2014, eight-year-old Kaydence asked her friends to donate money to Kids Cancer Care in lieu of birthday gifts. The daughter of Casi Simcoe, an accountant at Tundra, little Kaydence raised $110 to help kids with cancer.

And, of course, Tundra matched every dollar she raised.

Mason’s journey began in December of 2013 when a large lump appeared on the right side of his neck. I will never forget how my stomach dropped when I saw this mass. It instantly scared me. I contacted my husband Diego at work, right away he could hear the fear in my voice so he dropped everything and we rushed Mason to the Children’s Hospital. They did a few tests, concluded it was simply an enlarged lymph node and sent us home with antibiotics. The next day, the hospital called with test results telling us he had strep throat, so they changed his antibiotics to something stronger. We thought this was a little odd as he had no strep throat symptoms, but we followed the doctor’s instructions.

The pharmacy had only half of the antibiotics we needed, so four days later we went back to pick up the rest. The pharmacist saw Mason’s lump, and alarmed at the mass, she first asked, “Is that what the antibiotics are for?” We nodded yes and she asked if it had gotten smaller. We responded, “No, it is getting a little bigger.” She directed us back to the hospital, because the antibiotics should have started to decrease the lump by then.

Back at emergency, we were told to finish the antibiotics as some take longer than others to take effect. We went home growing more and more anxious. That evening, Mason spiked a high fever and spent the night getting sick. In the morning, the lump was even bigger. We went back to the hospital for a third time that week wanting answers. Something was obviously wrong.

The medical staff at the hospital were stumped. All of Mason’s tests were coming back normal and he was feeling fine. We were referred to an ear, nose and throat specialist who eased our worry by telling us it was not the big bad ‘C’, but simply a swollen lymph node full of clear fluid. Because it was just before Christmas break, it was decided to re-evaluate the lump in the New Year. As we were putting our jackets on to leave, the doctor called us back into the room, offering to give us some peace of mind over the holidays. He offered to prove the lump was just clear fluid by putting a needle in the lump and extracting what was in the lump. So, four of us held Mason down. The needle went into his neck, and again but the doctor could not extract a thing. The room instantly went cold and tense. The doctor quietly walked me back to reception and gave us his fist appointment after the holiday break, while Diego snuggled with Mason, trying to calm him down.

Christmas was cautious. I know that may sound funny; we all tried hard to make the best of the holidays, but in the back of our minds we were terrified. That lump continued to grow and, as parents, you simply fear the worst.

January 8^th, 2014 we met with the ear, nose and throat specialist again. He took one look at Mason’s neck and said it had to be taken out ASAP.

Two days later, on the 10^th of January, Mason had the lump removed in day surgery, a procedure that felt like it took forever. At 2:41 pm we were asked to come into a little office where we were told they had performed a freeze screen test in the operating room and confirmed it was lymphoma cancer.

Mason was six that day in January. Telling a six-year-old he has cancer, what cancer is and what could possibly happen to him was an out of body experience for me. He’s six. How is this possible? He is only six. Our world spiraled out of control. The next eight hours were filled with meeting the oncology team, answering a lot of questions, hearing a lot of information I could not possibly understand and a lot of disbelief.

We were able to go home for a couple of days after that first surgery and before being admitted to the oncology unit. Mason had a lot of questions; we did our best to answer them. But mostly, we snuggled, cried and did our best to prepare for the battle ahead.

The next week, all the tests necessary to determine his complete diagnosis were done: bone marrow, CT scans, ultrasounds, X-rays, countless blood tests and a lymph node biopsy from a slightly larger node on the other side of his neck.

We finally received his complete diagnosis on Wednesday, January 16^th.  Mason had stage 4 Burkitt’s lymphoma. He tested positive for Burkitt’s on both sides of his neck and 5 per cent in his bone marrow. Of course, we jumped on the computer and googled Burkitt’s. Pictures for Burkitt’s are shocking. Researching what our son had and what the treatment might entail kept us up all night. We cried harder and longer that night than any other time; not our son, not our six-year-old baby.

The next morning brought a new determination; there were no options in this journey. We had to win. And with that determination, Team Mason was born. Our family of four, our extended family and our incredible friends all became part of that team.

Mason went through five rounds of extremely intense chemotherapy. Each round brought on different challenges, but Mason never ever quit. He didn’t want to do it for one more second, but he never quit. He was aMazing. He is the bravest person I know.

The Alberta Children’s Hospital is such an amazing place. Not a place any family wants to know well, but we are so lucky to have it here in Calgary. We met many incredible people on unit one: doctors, nurses, families, volunteers and organizations. Being on that unit was humbling to say the least. It really grounded us and made us realize how fortunate we really were. When we first arrived, we thought our world was crashing down; however, when we found out Mason’s complete diagnosis and treatment plan, we were certain Mason was going to beat his cancer. We met so many other families who did not know their future. I can not possibly imagine their fear and pain.

We spent 60 nights at the hospital in unit one. It became our home away from home.

On May 14th, we heard the magical words every oncology family dreams of hearing: “Mason is in remission.”  He then went through his last round of chemo, like a champ. He strolled into that unit, said “Hi” to all the ladies in the nurses’ station, walked into his room and started to set up his bed and room the way he likes it. Through that week, he showed everyone his magic tricks and told them all his jokes, something he never did in the previous rounds. He was in a good space and knew what to expect.

On May 21, 10 days before his seventh birthday, he had his broviac line removed. Forty eight hours later, he was able to lay down in a bath for the first time in months. He lay in that tub until the water went cold. I will never forget the look on his face that day. There was so much peace.

We have spent our days since then trying to find our new normal, finding joy in every day. Although that year was the worst year ever for us, we really are the lucky ones. Our family is whole and we count our blessings every day for that.

One of our normals includes being part of the Kids Cancer Care Foundation of Alberta, an organization we are so lucky to be part of. They include us in so many amazing activities and events, but the very best one of them all is Camp Kindle. This past summer our boys were able to go to camp again. Bennett and Mason LOVE camp. They meet kids who know exactly what life with, during, and after cancer is like. They meet lots of kids and quickly make life-long friends. They swim, hike, sing, laugh and have genuine fun.

Diego and I have also been to Camp Kindle ourselves, once for Family Camp and once for Survivor Day. What a magical place. The peaceful environment overtakes any stress or outside noise in your head. If you ever get a chance to visit, go. You’ll know exactly what I’m talking about.

Kids Cancer Care isn’t just about the delicious pizza they deliver every Wednesday on the unit at the hospital and camp though. This incredible organization has done so much for our family. They filled our freezer with delicious food when Mason was in treatment. They include families in so many awesome Kids Cancer Care events — theatre tickets, sporting events, going to the North Pole on the Polar Express, galas, even golf tournaments.

Meeting other families who have experienced a lot of what we have gone through is also something we truly cherish. We have become part of this incredible family none of us really wanted to join, but we all feel so lucky to be part of. Kids Cancer Care also always include siblings, which is so very important because brothers and sisters go through the horrors of the cancer journey too. They witness many things kids shouldn’t see. Bennett was with his little brother every step of the way, holding his hand and encouraging him every day. Bennett was Mason’s biggest fan. Mason is lucky to have such an amazing big brother.

Another reason we love Kids Cancer Care so much is that they continue to keep us part of the programs and activities even after treatment is over. They know that even when chemotherapy, radiation or transplants are done, our journey along the medical path is far from over.

Hopefully there will be a day in the near future when pediatric cancer is extinct, but until then, organizations like Kids Cancer Care need your support to help families like ours to find peace, joy and love again during and after the horrific diagnosis of childhood cancer. We truly don’t know where we would be without their incredible support system.

We will never be able to thank Kids Cancer Care enough, or be able to express how much gratitude we have for Kids Cancer Care. Thank you Kids Cancer Care for all you do for us and all of the families you take care of.

~Jennifer Rodriguez, Mason’s Mom

“I ask myself sometimes in difficult moments: ‘What would Edyn do? How would Edyn handle this?’ I believe this is what Edyn would do. She would reach out and help others. To remember Edyn is to keep her spirit alive and this head shave in her name for other kids with cancer is the perfect way to do it.”

Those were the words of thirteen-year-old Cole Pederson, before the kickoff event for the Bishop Pinkham Junior High Shave Your Lid for a Kid® event in memory of one of his best friends, Edyn. In the coming weeks, our staff would find themselves both blown away by the fundraising support for Kids Cancer Care and overwhelmed by the sheer number of students whose heads we had to shave. We were given a window of two hours to shave or cut the hair of 100 students, teachers and parents. And we had to keep a gymnasium full of junior high students engaged in the event. The largest school event previous to this had less than half the participants. How were we going to make this happen?

Shave Your Lid for a Kid® show children facing cancer that they are not alone, all while raising vital funds for initiatives like research to change the course of the disease. “Shavees” as we call them come together in a community of support.

Our presenting sponsor of Shave Your Lid for a Kid®, Trico Homes, is very familiar with building communities. Founder Wayne Chiu has always known that his company is more than building the physical structure of a house.

Trico believes in building community. “When you build with us you quickly become part of the Trico family. We keep in touch with our homeowners and try to provide great incentives and opportunities for them to move up within Trico – from condos to semi-estate homes.” says Wanda Palmer, Vice President of Marketing for Trico Homes. “We also want to create housing options to meet the needs of all Calgarians. Trico recently broke ground on a new project that will provide new affordable and accessible living options in an inner city community. Social entrepreneurship is one of Wayne’s passions and this thinking has contributed to shaping the culture of Trico Homes.”

It was this passion that brought Wayne into his first meeting with Kids Cancer Care founder and CEO Christine McIver in 1999. After finding out that the children of two of his business contacts had been diagnosed with cancer, he knew he had to do something.

“Wayne wanted no fanfare. He just wanted to help,” says Christine. “One of his employees suggested doing a motorcycle ride to raise money. In the inaugural year of Ride for a Lifetime, Wayne sponsored every rider for $1000.” A Kids Cancer Care signature event for 10 years and now a third party fundraising initiative, the Ride for a Lifetime has since raised over $2.6 million for pediatric cancer research programs.

For almost two decades, Trico has been heavily involved behind the scenes in Kids Cancer Care’s growth. Trico Homes has been the presenting sponsor of the Shave Your Lid for a Kid® since its inception in 1999. After sponsoring Ride for a Lifetime for a number of years, when Kids Cancer Care began supporting childhood cancer research, Wayne committed to giving $100,000 a year to research. Trico then became the presenting sponsor of the Don, Joanne and the Coach Golf a Kid to Camp tournament. When Kids Cancer Care began exploring the possibility of running Camp Kindle as a social enterprise, the Trico Foundation gave Camp Kindle its first grant.

Christine says, “They gave us the courage to add the pillar of research to our organization, they gave us the courage to embark on a new signature event, Ride for a Lifetime, and the courage to start a social enterprise with Camp Kindle rentals. The impact of Trico Homes on Kids Cancer Care far surpasses their financial commitments. You don’t get a community without family and Trico is definitely a part of our family.”

You can always count on family to be there for you at every major milestone and event.

“Our staff really appreciate going out to volunteer at head shaves and the golf tournament,” says Wanda Palmer. “I send an email and almost immediately, the volunteer spots are filled.”

Wanda herself is one of these volunteers. Wanda volunteered to represent Trico Homes at a High Hopes Challenge, raising over $10,500 for Kids Cancer Care, and being paired with a bereaved sibling to experience a week of camp in one day.

Everyone at Trico Homes is given the chance to volunteer and participate. They mandate sending different staff, from all departments and seniority levels, to the Don, Joanne and the Coach Golf a Kid to Camp tournament each year. Everyone is given the chance to experience the Kids Cancer Care community.

So in April 2015, in the Bishop Pinkham gymnasium, when faced with the largest event in the 17-years of Shave Your Lid for a Kid®, there were some familiar faces in the crowd. As they always were, no matter the size of the event, Trico employees were there to help. We put them to work handing out goodies to all the shavees and we even encouraged them to partake in the flash mob!

Trico Homes knows how important volunteering and seeing the return on their social investment has on their employees. Kids Cancer Care is so grateful to Wayne, Wanda and the entire team at Trico Homes for their continued dedication to families affected by childhood cancer!

Trey Elkins has always wanted to do more.

Growing up in Mississippi without a father, Trey wished he had a dad to take him fishing. He wanted a dad to teach him new things and take him to new places, but that wasn’t possible because cancer had taken his father away when Trey was five.

After losing their home to Hurricane Katrina and moving to Alberta, Trey found himself battling the same disease that took his father’s life. Stuck at the hospital, Trey longed to be outside, hanging with his friends. He wanted to be anywhere, but the hospital. Again, that wasn’t possible because Trey needed 29 rounds of chemotherapy and eight surgeries to survive.

After treatment, as he grew stronger and healthier, Trey still longed to do more. That’s when he made a promise that he would do more, for himself and others, with the life he was given.

Thanks to you, this time, it’s possible for Trey to do more.

With the help of a Kids Cancer Care Derek Wandzura Memorial Scholarship, Trey studied Advanced Care Paramedics at SAIT. He now works at Advanced Paramedic Ltd., a company that provides air ambulance EMT and paramedic services to remote areas for Alberta Health Services.

“I’m pretty fortunate to land this job,” says Trey. “A big part of me getting it was the scholarship and volunteer work I’ve done with Kids Cancer Care.”

Trey also credits his mother Kim for his success. He recalls one night at the hospital when he was having a particularly tough time – the inevitable “Why me?” moment. “My mom looked at me and said, ‘Trey, you’ve been through a lot. This whole family has, but there is always someone worse off. Don’t you forget that.’” He didn’t forget.

Trey’s mother wasn’t exaggerating for effect. They had faced unthinkable adversity. After losing her husband Bill to cancer, Kim and her boys lost their beautiful waterfront property in the aftermath of Hurricane Katrina. This was the home she had struggled for years to keep through refinancing, foreclosure notices and living pay cheque to pay cheque. Flooded in seven feet of Mississippi mud and water.

After losing everything in the flood, Kim moved her family to Alberta, seeking a new start and an end to hardship. Not long after settling in Airdrie, Trey was diagnosed with stage four osteosarcoma. He was 14.

By the time Trey was ready for college, the family was experiencing a serious financial setback. As an American citizen, Trey was also facing hefty international student fees and tuitions to attend a Canadian post-secondary school.

The Kids Cancer Care scholarship that you made possible could not have come at a better time.

“My oldest brother had given me all the money he could,” says Trey. “My mom was paying most of my bills. Even my girlfriend’s parents loaned me some money. I was broke. If it were not for the scholarship I received and the generous amount that it was, I would have had to drop out of school.”

Thanks to you, in his last year of school, Trey had a Kids Cancer Care scholarship in the bank, a mother’s wisdom in his heart and a powerful desire to do more with his life.

“My story isn’t exceptional,” says Trey. “Anyone who endured what I have would emerge from their struggle with a new outlook on life. I kept my resilience by recognizing that people around me were suffering and I began to focus on relieving the suffering of those around me.”

That’s why Trey was in Fort McMurray, providing medical support to victims of the wildfires in 2016 and why he volunteers as a trainer for a high school football team. And that’s why Trey volunteers as a medic and spokesperson for charities such as Kids Cancer Care, the Alberta Children’s Hospital and the Alberta Cancer Foundation. He’s determined to do more.

“It has been amazing to be recognized nationally for this research but more important, is knowing that the research may actually have potential in the real world.” ~ Colette Benko

Colette Benko isn’t your average 15-year-old. Not because she’s already conquered cancer once, but because of her scientific mind and insatiable curiosity. If Colette has it her way, she’ll be conquering cancer the rest of her life, but this time, it will be from the inside of a research lab.

Thanks to you, Colette was able to start feeding her curiosity while working as a summer research student in Dr. Aru Narendran’s laboratory at the University of Calgary. But this wasn’t the first time Colette had been in a research lab.

For the past two years, Colette has been enjoying a rewarding and successful mentorship with Dr. Narendran, a pediatric oncologist at the Alberta Children’s Hospital and an Experimental and Applied Therapeutics (ExpAT) researcher in the Childhood Cancer Research Program at the University of Calgary.

Colette first met Dr. Narendran at the Alberta Children’s Hospital when she was being treated for synovial sarcoma, a cancer of the joints and soft tissue.

“I’ve always been a science nerd, but I had never done a medical science research project,” says Colette. “When Dr. Narendran found out that I love science so much, he agreed to mentor me. He’s been a great mentor. He’s so kind and patient and he’s so committed.”

“When Colette talked to me about wanting to do research in our laboratory I was impressed by her extraordinary self-assurance, energy and keenness,” says Dr. Narendran. “She reminded me of that Ivern Ball quote, ‘Knowledge is power, but enthusiasm pulls the switch.’”

The outcome of that enthusiasm has been two award-winning research projects for Colette.

Last spring, she won a silver medal for excellence in the 2016 Canada-Wide Youth Science Fair and a $2,000 scholarship for her research into a potential new therapy for neuroblastoma, a cancer of the sympathetic nervous system often found in infants and young children. In 2014, her research into an extremely rare and aggressive brain cancer in infants called ATRT won gold in the Calgary Youth Science Fair.

“It’s so incredible to work in a lab,” she says. “To actually experience and see results, not just read about it, is so satisfying.”

Colette is especially excited about the results of the neuroblastoma research, because it may actually have practical application in the world of pediatric cancer one day.

“It has been amazing to be recognized nationally for this research, but more important, is knowing that the research may actually have potential in the real world,” Colette says.

Working with students in Dr. Narendran’s lab, Colette was studying a unique new drug against three types of neuroblastoma and found that it inhibited growth in all three by stopping the action of a protein called EZH2, which is involved in blocking tumour suppressor genes.

“Normally, our cells rely on a group of molecules called tumour suppressor genes, which constantly act to prevent malignant changes in cells, by causing them to self-destruct,” she says. “But some tumour cells overproduce a protein that actually turns off tumour suppressor molecules, so the cancer cells continue to grow. The drugs we’re studying, known as the EZH2 inhibitors, aim to block this abnormal mechanism in neuroblastoma cells.”

When Colette presented her findings at the 2016 Canada-Wide Youth Science Fair, researchers investigating similar ideas were excited to see her data, as this drug has also shown effectiveness against pediatric brain tumours.

Still in the early stages, Colette’s findings seem to suggest that the drug may not only be inhibiting cancer growth; they may actually be inducing cellular death in the neuroblastoma cells. Another promising attribute of the drug is it doesn’t seem to attack regular cells, which could mean fewer side-effects for patients.

Working as a summer research student in Dr. Narendran’s lab this year, Colette was able learn more about the necessary processes involved in conducting cancer research, while also developing her understanding of the biology of various pediatric cancers.

Colette also continued generating data on her neuroblastoma project, testing whether the drugs are actually capable of inducing death in neuroblastoma cells and assessing what effect, if any, they may have on non-cancerous cells.

After graduating from high school, Colette plans to take her quest for a cure even further. She plans to pursue a Bachelor of Health Sciences at the University of Calgary and follow that with post-graduate work in pediatric cancer research.

Thank you for making our summer student research program possible. While providing scientists with much-needed help in the lab, the program helps ensure that promising young research talent is nurtured for tomorrow.

I’ve often thought that someday I should go back to the beginning and read and print all the saved emails, print out all the stories I’ve shared on the blog I started to keep friends and family in the loop when Macey was diagnosed with cancer. Writing this piece for Childhood Cancer Awareness Month seemed like the perfect opportunity to start this project. So I printed 176 pages of the blog and then started reading over emails. It brought me to tears. And it brought me back to the beginning. The beginning of what seemed a nightmare.

The little tidbits I read were enough. I’m not ready yet. I will be someday, but not now. I’m not ready to read every word yet. It feels like a long time ago that we were at the beginning, but reading back in time, it also feels fresh—that time of sinking heart, amazing love and the start of a great, big, awful battle.

My ‘give-chemo’ alarm just went off. It’s become so normal, but I do remember the thought striking me many months ago that not every mom has alarms to remind her to go upstairs and administer oral chemo medicine to their now three-year old daughter. I also remember how quickly I went from feeling lost and new to the cancer journey, to feeling like I should somehow comfort others who had just received the horrific news that their baby or child has cancer.

The worst night of our lives was Monday, December 1, 2014. On that night we arrived at the Alberta Children’s Hospital in Calgary with our daughter Macey, who was 21-months old. She had slept the entire day. She also had bruising on her face and body that wouldn’t go away and, over the weekend, she’d had some mild nose-bleeds. For three months prior, she had also had a series of illnesses that wouldn’t let up — an extended hospital stay for what they thought was dehydration/infection, a lymph node infection that landed us in emergency. Macey had stopped crawling and did not like to be put down, probably because of bone pain we were unaware of.

When we arrived at the hospital, Macey was the pale colour of the hospital walls and she was lying over our shoulder like a rag doll. She was limp and lifeless. The triage nurse ushered us in immediately to see a doctor and our hearts felt the impending doom of something serious.

That night of tests was excruciatingly long. It was so difficult to get blood samples. Macey ended up looking like a pin cushion and was poked in every possible location multiple times — feet, hands, elbows, head. They had many people and specialized teams attempting. There were X-rays and tests with names I cannot even remember now. We walked her and rocked her and tried to soothe her.

A lovely doctor came in around midnight and suggested we sit down. I cannot even write this without reliving that life-altering moment and the emotion that came with it. She told us, with tears in her eyes, that our daughter had leukemia. Cancer. Our baby. They don’t belong together. We were devastated.

We didn’t sleep that night and were transferred to the ICU because Macey was having some complications, including pneumonia. It took a few days to isolate what type of leukemia she had and to start treatment. She was so sick that they couldn’t administer chemo until her health had improved. It is possible that if we hadn’t taken Macey in on December 1^st she may not have woken up the following morning. That is how low her red blood cell count was at that point. She was diagnosed with high-risk acute lymphoblastic leukemia and she received her first dose of chemo on December 4, 2014, which was my birthday—one I will never forget.

Not only are those initial days a blur, but also the last year and half. There are some things I remember, such as when she lost her first tuft of hair. I remember the generosity and kindness of family, friends, and strangers. My husband Josh’s office created The Macey Project and showered us with support in practical, financial and emotional capacities. They continue their support today and really seem to understand that the burden of childhood cancer is carried for much longer than at the front end of diagnosis.

Macey spent the entire month of December in the hospital and, later, at a friend’s home in Calgary, so we could be closer to the hospital (a total of seven weeks).We have two boys, Hudson and Sawyer, who were five and four years old at the time. It was difficult for them to have their mom and baby sister gone for such a long time. Even harder than that first month, were the many months to follow where, at any given moment, Macey and Mom were off to the hospital.

Fevers and illness came often and came at inopportune times. The logistical nightmare of childhood cancer is something so real for families. Having to pull yourself away from your boys, who are clinging to your leg in tears, to take your sick daughter to the hospital, is heartbreaking. Missing fun things or planned things or things the boys would have enjoyed became par for the course. For example, in May 2015, I wrote in our blog: “Today Hudson (my oldest) turns 6. And, sadly, we are doing present-opening over FaceTime because Macey ended up at the hospital with a fever.”

After six months of treatment, I wrote: “It has been 6 months now since Macey was diagnosed on December 1, 2014. I cannot believe that amount of time has gone by. If one way of measuring life’s success is based on accomplishments, travel, fun adventures, books read, or miles run, we don’t have too many successes to speak of. But, our yardstick has changed. And, if you measure our success in smiles and strength from Macey, milestones that she has newly reached, and pure survival of our family unit, then I think we are successful. Praise God for getting us to this point.”

We attended the Kids Cancer Care Parents’ Quest for the Cure gala in March 2015 (and we had the privilege of attending again in 2016). At the gala, they played a video — the sad and touching kind of video that makes you wonder why the injustice of kids having cancer exists. It was in that moment that I realized I was living that. We were one of those stories. We had lived a blurry three months of holding a bald baby and watching her suffer and fight. And fight she did. Her strength is inspirational. At that gala one of the speakers was talking to us at the end of the evening and encouraged us several times to not overlook the impact this was having and could have on our boys. That stuck with us and from that moment on we took advantage of all the Kids Cancer Care opportunities we could.

Kids Cancer Care gave my boys a reason to smile, while their parents lived a distracted life. Acquaintances and friends did that too — taking our boys for a day or a night or for a fun activity. They’ve been able to attend many fun things courtesy of Kids Cancer Care, such as camp, Family Ski Day, the Polar Express adventure, and more. Macey even got to experience two days of camp this summer, 2016!

Sawyer and Hudson joined Kids Cancer Care for a week at our SunRise day camp this summer. Macey was sick, so she could only join us for two days.

“Two days with Macey gave me enough magical moments to fill an entire year,” says Jenna Schwanke, childlife specialist at Kids Cancer Care. “Macey’s mom hadn’t planned on her going, because she’d just fractured her leg the night before, but we assured Mom that we had the support to care for her and, if Macey was up for it, we were definitely up for it.”

In her purple tutu and orange cast, Macey was carried in the arms of one volunteer after another. She later joined in on the activities as best she could.

“Amid the pain, she giggled and laughed and became our little hero of the day on Friday,” says Jenna. “I was blown away by the support of her big brothers. No distance was far enough to prevent these little guys from hearing Macey call their names, to which, they came a running and rushed to her side. The three Bangsund kids make up one incredible team and we can’t wait for Macey and her brothers to return for a full week of camp next year.”

There are Beads of Courage that Macey has been collecting since the beginning. This is also a Kids Cancer Care initiative and it is an amazing way to tell her story. It is a visual representation of all that she has endured. There is more treatment left for Macey and yet she already has 500 beads. These beads are different colours and shapes, each representing a medical procedure or milestone such as blood transfusions, needle pokes, surgery, chemo, hospital overnights, hair loss, lumbar punctures, X-rays, MRIs, birthdays, isolation, clinic visits, and more. One day, when she is older, Macey will learn all about her strength, represented by these beautiful beads.

The unpredictability and disruptiveness of life with childhood cancer has been a lesson in disguise for our family. In the very early days we learned that our plans are not our own. We are not in control and the strength we need to brave this journey would be provided in small doses by a force much greater than the strength we could ever muster on our own. We learned to live in the moment in a way that only something like this can teach. Joy could be found in heartache and hope was hidden in the darkness. The support around us bolstered us and helped us crawl through the unknown life-territory we had been forced to travel.

The sensitivity and love of Macey’s brothers is something truly beautiful. I’ve heard her oldest brother Hudson say a couple of times, “I wish it was I who was sick instead of Macey.” I wrote in the blog in September of 2015: “They are learning compassion and patience in a way that no 5- or 6-year-old should have to. I am learning the same. My daughter is learning strength and resilience, while teaching the same to me. She shows the doctors and nurses and strangers love, because somehow she has love to share.”

There were many hospital stays, scares, and dark times. Even with all the support it can feel like a lonely journey. Sometimes hospital stays would be reminiscent of the beginning, her being so sick. She lost her hair, it grew, and she lost it again. Now it is amazing and beautiful and has grown so much! It is almost time for a ponytail. I still remember the day her immune-fighting cells were of a count high enough that I could take Macey to Walmart or Costco and the joy that filled my heart. Oh, to show off my beautiful daughter and not have her isolated from the world! This is a mundane activity that became a great pleasure. Contrast that activity with Macey being on a morphine infusion (through IV) to manage pain, along with IV nutrition to give nourishment, and you see how amazing these small victories are!

This year, we saw Macey take her first steps, which was very exciting. She also climbed our stairs for the first time in July, 2016. Her words are coming now and it is the cutest thing to hear: Music to our ears. She has a mind of her own and lets us know what she needs and wants. Any mess she makes in our home is welcome because it means she is home and healthy and making a mess, like a regular toddler. We are thankful for the messes and we are thankful for how far she has come and the battle she has most valiantly fought so far.

You don’t come through this and remain the same person you were. Things change — perspective, priorities, friendships and more. As I wrote in my blog on July 15, 2016, “Sometimes the joy gets overshadowed, but writing this snapshot today, celebrating Macey, reminds me of all of the good — of how far Macey has come. There was a time not long ago, where there wasn’t a toddler trail of toys all over the house and where hospital stays were more prevalent than milestones. Watching Macey trouble-make, mess-make and noise-make is what dreams are made of. My prayer is to not lose sight of that. Some days the gloom overshadows the joy, but the real miracle is Macey and watching her develop into a delightful, beautiful and loving child.”

Caitlin Joyce, Macey’s Mom

You can view Caitlin’s complete blog on Macey’s journey here

Macey’s photo gallery

On September 15, 2016, the Pediatric Oncology Experimental Therapeutics Investigators Consortium (POETIC) and CorMedix Inc., announced a powerful new partnership in the fight against childhood cancer. With the new partnership agreement, POETIC and CorMedix will work together to develop a promising drug called CRMD-005 as a potential treatment for rare children’s tumours, including neuroblastoma and osteosarcoma.

CRMD-005 is a proprietary form of Taurolidine, an anti-microbial currently used to prevent infections in catheters. A safe product that causes very few side-effects, Taurolidine is also being studied as a treatment for cancer.

The new research effort will begin with pre-clinical studies to demonstrating its role in immunotherapy on pediatric cancer models in the laboratory. Laboratory studies show that Taurolidine is capable of inhibiting the growth of cancer cells at concentrations of 100 times lower that that which is needed for the drug’s antibiotic activity, suggesting the drug’s high tolerability (the degree to which overt adverse effects of a drug can be tolerated by a patient).

Working with POETIC physicians and scientists, Dr. Aru Narendran will lead the pre-clinical efforts, which will involve further defining Taurolidine’s potential role in treating pediatric cancers, especially in relapsed and drug-resistant cancers. It will also involve identifying the best drugs to combine with Taurolidine to plan for and test in future clinical trials.

“Our goals are to better elucidate Taurolidine’s mechanism effects and leverage its history of safety to maximize its anti-neoplastic potential in an intelligent and efficient manner,” said Dr. Narendran, a Kids Cancer Care-funded researcher in the Experimental and Applied Therapeutics Research effort at the Children’s Cancer Research Program at the Alberta Children’s Hospital and University of Calgary.

The program will involve collaboration with several National Cancer Institute centers that are part of the POETIC group, including Memorial Sloan Kettering Cancer Center (MSK), Weill Cornell Medical Center, Alberta Children’s Hospital, and other top tier cancer centers of excellence.

To read more about this research effort, visit CorMedix Inc.

POETIC is a network of pediatric oncologists and researchers from 10 top-tier academic medical research centers, who are collaborating across institutions to bring promising new therapies into phase one and phase two clinical trials for children with cancer.

CorMedix is a bio-pharmaceutical company that develops and brings to market therapeutic agents to prevent and treat infectious and inflammatory disease.

POETIC recognizes Kids Cancer Care with Partner of Distinction Award

POETIC recently recognized Kids Cancer Care’s contribution to childhood cancer research with a prestigious POETIC Partner of Distinction Award. The award recognizes our ongoing support of Dr. Aru Narendran and his research team at the Alberta Children’s Hospital Research Institute and the University of Calgary. Dr. Narendran is an Experimental and Applied Therapeutics researcher at the Childhood Cancer Research Program. The only Canadian member of POETIC, Dr. Narendran is currently the lead investigator in three phase one POETIC clinical trials.