“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.

The Cancer Knowledge Network, an online cancer resource, asked writers and editors to share with readers what September means to them. Here’s what Trisha Paul, a medical student at the University of Michigan Medical School, had to say:

Painting wooden figures is an all-time favorite craft for kids at C.S. Mott Children’s Hospital. Five years ago, a little boy with no hair sat beside me, splotching gobs of glittery paint atop a dragon made of wood. I don’t remember the boy’s name, but I remember his face, his kind eyes. When his mom came to get him from the playroom after he had been discharged, he turned to me. “This is for you,” he said. And before I could respond, he had bolted out of the playroom and was halfway down the hall, his left arm reaching up with little fingers curled tight around his mother’s hand.

I will never forget how moving it was for me, how touched I was by his altruism. This little boy, genuinely selfless, didn’t think twice about giving me his carefully crafted creation. He wanted a complete stranger to have it. Children like him inspire me.

September may be over, but not a day went by that I didn’t think about Childhood Cancer Awareness Month. Throughout my journey in medicine, although childhood cancer has been a cause that I’ve been passionate about for many years now, I have tried to keep an open mind about my career selection. But I’m the kind of person who has always known what I’ve wanted. This is who I am, and this is what I am about. I am determined, now more than ever before, to pursue a career in pediatric oncology and palliative care. I want nothing more than to dedicate myself to improving the lives of these children and their families in any way that I can.

But September is not about me. September is about all the children around the world diagnosed with cancer. All the loving parents devastated by the news. The siblings struggling to understand. The families that suffer so deeply. September is just one month, and 30 days is not nearly enough.

“Let’s face it. It’s not ok. It’s not ok that so many children, instead of starting school in September, are being diagnosed with cancer. So many children are spending their days in and out of hospitals instead of in classrooms and outside playing tag at recess.”

September reminds me just how important the cause of childhood cancer is to me, and how important it should be to all of us. Childhood Cancer Awareness Month celebrates the great strides that we have made in caring for children with cancer and, at the same time, looks ahead at the great challenges that remain. This month calls for reflection about how the landscapes of awareness, research, policy, and clinical care have all evolved with time. And, how much farther we still have to go.

The dragon sits atop my bookshelf. It reminds me every day of the little boy who taught me how to be selfless, who showed me the meaning of altruism even if he didn’t know what the word means.

So many of these young patients and their families have touched me over the years. I hope that I can someday return the favor, that I can touch the lives of those affected by childhood cancer with my own version of “glittery dragons.”

~ Trisha Paul

What does September mean to you? Tell us by clicking the Share Your Story button below!

Ms. Paul’s post is part of larger series by the Cancer Knowledge Network called What September means to me. To view more posts about from this series, please click here. 

Trisha Paul is medical student at the University of Michigan Medical School with a B.S. in Honors English, who aspires to become a pediatric oncologist and pediatric palliative care physician. She recently published the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer and she chronicles her explorations in learning, researching and teaching about illness narratives at illnessnarratives.com.

“When Erik relapsed three years ago with AML, a bone marrow transplant was his only hope for survival. Brent was a perfect match and the stem cells they extracted from his bone marrow saved Erik’s life. We are so filled with gratitude for Brent and his kind, generous heart. We are thrilled to finally find him; it’s like our families have been matched now.” ~ Carol Gracia

Although Paul and Carol have never met Brent Lewelling before, the young man from Beaumont, Texas saved their son Erik’s life in 2012 when he was battling acute myeloid leukemia (AML), a high-risk cancer of the blood not often found in children.

“It was critical that we find a donor,” says Erik’s father Paul Gracia. “If we hadn’t found the perfect match, Erik wouldn’t have survived.”

A 20-year-old college student at the time, Brent was Erik’s perfect match. He underwent surgery to have stem cells harvested from his bone marrow to donate to Erik.

“They told me there was a little boy who needed my stem cells and asked me if I was still interested in donating,” said the now 23-year-old Lewelling, who is a father himself today. “I immediately felt this pull and felt like I needed and wanted to do this, so of course, I said, ‘Yes! When do you need me?’”

Originally diagnosed with AML when he was two years old, Erik underwent months of intense chemotherapy before going into remission. He enjoyed two cancer-free years and just as the Gracias were beginning to feel that he was out of harm’s way, he relapsed. This time, his only hope for survival was a stem cell transplant, which Brent made possible.

The bone marrow transplant was a life-saving, game-changer for Erik, who has been healthy ever since.

“When the agency called to say the boy’s family wanted to make contact, they said it may take over six months to actually hear from them; the Gracias called two days later,” Brent laughs. “It was so great to get that call. My mother has never stopped asking if I’d heard from that little boy and his family. It is such a blessing and joy to know that Erik is so strong and healthy today. Mom says I’ve always had such a strong immune system, because I never get sick; now Erik has my immunity too.”

Apparently, Brent Lewelling was an ideal donor. Studies show that donations from healthy young men like Brent, between the ages of 17 and 35, lead to improved overall survival in patients and lower rates of graft versus host disease (GvHD) for patients, so they are more likely to be chosen to donate by transplant physicians. GvHD is a condition where donor-derived blood cells see the patient’s body as foreign and so triggers an immune response, leading to serious complications.

Erik was fortunate to experience no complications or rejection issues after the transplant and, today, he is a healthy, active nine-year-old boy who loves sports. He and Brent experienced an instant bond and, during the five-day visit last July, the Gracia and Lewelling families enjoyed site-seeing tours around the province, including a trip to Banff and a backstage tour of the Grandstand Show at the Calgary Stampede. Erik was glued to Brent’s side during the entire visit. He calls Brent Superman Bone Marrow.

“Brent has shown me how to make a difference in the lives of others,” says Erik. “He’s also shown me how to give love to others who need it. Brent is part of our family now.”

“It is wonderful to see Erik and his family bonding with Brent and his family,” says Dr. Faisal Khan, an associate professor in the departments of pediatrics, and pathology and laboratory medicine at the University of Calgary’s Cumming School of Medicine investigating donor matching systems to improve outcomes for patients. “But the foundation of this bonding was actually laid in 2012, when Erik welcomed Brent’s stem cells into his body and Brent’s stem cells helped Erik to get rid of the unwanted cancer cells. This strong bond between the two of them, that we in the outside world are seeing today, has in fact, existed inside Erik’s body for the past three years. This fact itself speaks to the importance of donor matching.”

“Reunions like this are rare and they inspire us to continue to build a stem cell registry that reflects the needs of patients in Canada and all over the world,” says Dr. Dana Devine, chief medical and scientific officer, Canadian Blood Services. “This reunion is a testament to the collaborative relationships that exist with our international partners and with our Canadian transplant and research communities to ultimately improve patient outcomes.”

To that end, Canadian Blood Services focuses on recruiting young men between the ages of 17 and 35 to their adult stem cell registry and expectant mothers through the Canadian Blood Services’ Cord Blood Bank.

To register with Canadian Blood Services’ One Match Stem Cell and Marrow Network visit blood.ca. Registrants must be in good health and be 17 to 35 years old. They must be willing to donate to any patient in need anywhere in the world and have Canadian health care coverage.

For most girls, the high school prom is about the dress. What colour? What length? What cut? What style? Not for Gizelle de Guzman. For Gizelle, the occasion of her high school prom was the perfect moment to take a stand and make a statement that very few of us would have the hutzpah or charisma to pull off.

And so, dressed in a vintage-style ball gown, befitting a princess, Gizelle arrived at her prom totally bald.

Her reasons for going bald are perfectly simple.

“I have been affected by cancer in so many ways,” Gizelle explains. “I lost my mom to cancer when I was nine and then my stepmother followed six years later.”

Gizelle also has friends, of all ages, who have a history of cancer.

“Three years ago I met this girl, she was the most beautiful girl ever and she had cancer and her boyfriend broke up with her because of cancer: No hair,” Gizelle says. “It was her graduation and no one was asking her to prom.”

Shortly after, Gizelle had a dream that inspired her to show solidarity for young people with cancer. She’d dreamt about a bald girl in a beautiful grown on prom night. “How would it feel to go to prom without hair?” she wondered.

Gizelle couldn’t shake the memory of that dream and, three years later, she found herself registering her online profile for a Shave Your Lid for a Kid® event scheduled for June 23, 2016—just two days before her high school prom.

“I wanted to be able to say that someone is there for you and that the presence of your hair should not control how you feel walking across that stage,” says Gizelle. “I know I’ll be judged. It’s human nature, but that’s kind of the point.”

Gizelle’s courageous move didn’t only raise a few eyebrows at the prom; it raised a lot of awareness and attention locally and farther afield. Several local media outlets ran stories on Gizelle and people now stop her on the street to talk.

“Since I shaved my head, at least 10 strangers have asked me why my head is shaved, or if I have cancer, or just simply if I’m doing better,” says Gizelle. “It’s crazy how this simple change in my appearance can bring out sympathy in others.” This is precisely the response she was hoping to get. For Gizelle, shaving her head was all about the buzz it would create.

“I’ve wanted to do this for a long time,” she says. “I needed to do this.”

Originally from the Philippines, Gizelle and her family moved to Cremona, Alberta when she was 12. Fitting in was tough and she became the victim of small-town schoolyard bullies. She started to withdraw and became increasingly isolated and depressed.

Gizelle still struggles with post traumatic stress related to the extensive trauma and loss she’s experienced, but she is determined to get through it and, right now, she’s thriving.

Thanks to your support, Gizelle was able to find friendship and support at SunHaven, a camp program for young people who have a parent with a history of cancer.

“All of my friends, I met at Camp Kindle,” says Gizelle. “I met Melanie, my best friend, my first year at camp and we’ve been through thick and thin together. She’s honestly my sister now and her mom—well, she’s mine too. I have so many friends that I’ve kept in touch with from camp and it’s definitely kept me mentally strong. It’s a huge gigantic support system.”

Gizelle’s experiences at SunHaven inspired her to make Kids Cancer Care the recipient of her shave fundraising event.

“The first year, I was very frightened,” says Gizelle, recalling her first SunHaven camp experience. “I had all these negative thoughts that people were going to judge me, that I wouldn’t be accepted at camp, but it only took a couple hours to feel at home and now I look forward to it throughout the year. I’m honestly heartbroken knowing that it was my last year at camp, but I’m going to try and be a counsellor there one day. Camp’s taught me to see the good in people.”

In addition to raising more than $1,700 for Kids Cancer Care, Gizelle is hopeful that she may find some personal resolution through her courageous and compassionate decision to shave her head for prom night.

“Maybe it will provide some closure around my mother,” she says. “I like to think that by doing this, it was like she was there with me on prom night.”

Either way, the 17-year-old singer-songwriter is looking forward to a fresh start this fall at Dalhousie University, when she begins studies in accounting.

Thank you Gizelle! You are an inspiration and role model for so many. Thank you for holding your head high and taking a stand for young people with cancer.

Gizelle’s photo gallery