You helped bring Carter’s football dream to life

Carter Thompson isn’t your average Stampeders fan. He’s an extreme fan. Knowing what a tough year it’s been for Carter, we approached former Stampeder Stu Laird about getting some apparel for him. Little did we know, this simple request would assume epic proportions and become the stuff of dreams.

Carter is a nine-year-old boy who is one of the biggest Calgary Stampeders fans you’ll ever meet. He was born with a hereditary heart condition — the same condition that took his father’s life about year ago. As a newborn, Carter went into heart failure and his organs started shutting down. Carter received a heart transplant and for many years he was strong and healthy, but last summer, he began experiencing stomach and back pain. After a trip to the hospital, Carter was diagnosed with stage 3 non-Hodgkin lymphoma, a cancer that sometimes develops after transplant.

What followed for Carter were months of intense chemotherapy and isolation. Now in remission, Carter undergoes regular monitoring and follow-up with CT Scans, PET scans and oncology appointments. It’s been a rough road for Carter, but he’s true champion and approaches things with his usual good humour and sunny disposition.

Last December, Deb Osiowy of Kids Cancer Care approached her neighbour Stu Laird, who just happens to be a former Stamps player and one of the biggest-hearted persons you’ll ever meet.

“I told Stu about this sweet little boy named Carter and what he was going through,” says Deb, chief financial officer at Kids Cancer Care. “I told him how Carter was the biggest Stamps fan and asked Stu if he could help us get some Stamps apparel for Carter. It was Stu who took the ball and ran with it from there. I had no idea it would ever become so big.”

Although 2018 was a tough year for Carter, it was an auspicious year too, because in November, his favourite football team would win the Grey Cup. As a former Stampeder and community leader, Stu was granted access to the Grey Cup for a narrow window of time. When Deb approached him in December, he decided then and there to share that time with Carter.

“I really just wanted to make a little boy smile,” said Stu. “I never imagined it would become such a big event, but everyone wanted to do more, so we just ran with it.”

Working with people from Kids Cancer Care, the Calgary Stampeders, Carter’s mom and teachers at École Olds Elementary School, Stu arranged to deliver the Grey Cup to Carter’s school on one of the stormiest days of the year. Although there was a slight delay on the Grey Cup handoff in Calgary, because of weather, a convoy of vehicles left Calgary for Olds in the early morning of February 11. All for Carter.

The school gymnasium and hallways were plastered with red and black banners, sporting words of hope and encouragement for Carter: “Grey Cup Party for Carter.” “We’re on Team Carter!” “Fight for Carter.”

Five hundred and thirty two children cheered as the procession filed into the gym — Carter Thompson, Ryan Sceviour, Jay McNeil and Stu Laird of the Calgary Stampeders and Deb Osiowy of Kids Cancer Care. Finally, two Royal Canadian Mounted Police officers, dressed in full regalia, carried in the Grey Cup. Carter was smiling from head to toe. The students thundered their applause and support.

While the Stampeders and Grey Cup were certainly worth celebrating, it was Carter who stole the day.

“Carter, do have some good news to share with us?” asked Randy Kish, Carter’s gym teacher and a key organizer of the event.

“I’m on probation?” Carter looked up at his teacher quizzically, unable to retrieve the correct word amid all the excitement.

“Well, it’s kind of like probation,” Randy responded. “But I think you mean remission, right?”

Carter agreed, all smiles and nods. The crowd went wild, storming their cheers and applause.

Carter’s mother Tracy Thompson couldn’t be prouder of her son: “I asked Carter how he felt the other night about the Grey Cup coming and he said, ‘Mom, it reminds me of cancer. There’s a lot of battles. It’s like that game that you have to play so hard. Knowing I’m in remission is like winning the Grey Cup.'”

Hosting the Grey Cup at their school was a once-in-a-lifetime moment. It was one brutally cold morning when Albertans came together to show a little boy they care. It took a groundswell of community support and a bunch of big-hearted individuals who dared to do more – for Carter.

Thank you to the Calgary Stampeders and École Olds Elementary School for creating this magical day for Carter!

Hi, I’m Ryane. I know I may look like a normal, active 15-year-old, but I am not.

When I was only three years old I was diagnosed with Wilms tumor — that’s a type of kidney cancer. My mom had started noticing about seven or eight weeks earlier that something was wrong. I had stopped eating and was lying on the couch all the time. We had been to the hospital nine times during those seven to eight weeks. By the time I was diagnosed, I had dropped down to 30 pounds. For a point of reference, I weighed 26 pounds on my first birthday. Everyone knew there was something wrong, but we never expected cancer. When we received the diagnoses, my family was in disbelief. A three-year-old child doesn’t just get cancer.

The next day, I was put through a battery of tests and admitted into the hospital. I don’t remember everything, but one of the things I do remember was getting an IV. It took both my parents and two nurses to hold me down. By the time it was done, EVERYONE in the room was crying. They had given me the IV for an MRI, instead of sedating me. My mom and another nurse held my hand while singing, “You are my sunshine,” to calm me down during the MRI.

My mom remembers it was a Wednesday night when we first encountered Kids Cancer Care. Their volunteers were doing a Pizza Night on the oncology unit. We didn’t know we would have to stay so long at the hospital, so my dad had gone home to get my pajamas and my Teddy blanket. I was sleeping in the room and one of the volunteers offered to stay with me, so my mom could go and grab dinner. Mom refused to leave me alone for a second.

We stayed in hospital for a little over a month. During that time, Kids Cancer Care volunteers came in and played games with me because I couldn’t have visitors. Believe it or not, I was one of the lucky ones. I had nine rounds of radiation and 10 months of constant chemotherapy. Our life changed drastically over those months. My parents and I were constantly together, because I wasn’t allowed to go anywhere. Being exposed to other diseases or germs can be life-threatening for a child on cancer treatment. I had lost almost all my hair and I probably looked like a baby orangutan, but I refused to let my mom shave my head. I said, “Mom, what princess doesn’t have hair?”

The following spring I was excited to go to our first ever Family Camp with Kids Cancer Care. In the parking lot of camp, I met my best friend Maddie. We became instant best friends and were like two peas in a pod. At nighttime, we talked through a little hole in the wall and kept our parents up all night long. Maddie and I are still great friends today and we continue to go to Camp Kindle together every summer. Thanks to people like you, this summer is my 11^th year of going to Camp Kindle.

Because I was so young, the cancer treatments interfered with my growth and development. The chemotherapy caused the wall of my left ventricle to thin. This caused a serious heart condition.

I also have a pretty serious learning disability. My mom started noticing this when I was in grade three. We used to read together at night before bed. What my mom didn’t know was that I was reading only by memory. When we started a new book, she could see that I didn’t actually have the skills to read and that I was just memorizing it. That’s when I went for testing and was later diagnosed with a learning disability. I was in grade three and the test showed that I was at a kindergarten level in math and a grade one level in reading. My mental processing speed is also a lot slower. These are some of the classic learning issues of many childhood cancer survivors. While I was in the room doing the testing, my mom was sharing her concerns with the counsellor. The counsellor looked at my mom and said,“You don’t really think she’ll ever graduate, do you?” My mom stood up and, without a word, left the room. My mom says, “We didn’t fight all that time to give you a future, just to give up on your future now.”

I’ve been facing these kinds of situations my whole life. In grade six, when I told my gym teacher I couldn’t participate in wrestling, she didn’t believe me. She insisted I join in. My mom had to come in with a two-page letter, detailing my medical history. This finally convinced my teacher that participating in contact sports could be life-threatening for me. I honestly don’t think my teacher was being mean. She just didn’t understand.

I now go to a school for kids with learning disabilities. There’s more testing to be done, but my parents just can’t afford it. It cost a lot to go to Foothills Academy — over $15,000 a year. But it is helping. We’ve learned that I need a lot of repetition to grasp a concept. It’s a lot of hard work and I stay after school every day for homework help. I’m also on the waiting list for a tutor with Kids Cancer Care and I’m sure that will help too.

I’m 11 years off treatment and considered cancer-free, but I live with the side effects of cancer every single day. I still go for regular Echo tests and ECGs for my heart. I also go for regular follow-up at the Long-Term Survival Clinic. Like 75 per cent of childhood cancer survivors, I will live with these conditions the rest of my life. These conditions grow worse with age and without any apparent plateau.

My cancer doesn’t just affect me. It affects my parents as well. My mom has been diagnosed with PTSD. She no longer works full-time because she wants to be there for me. My dad works two jobs — as a carpenter and firefighter — to make ends meet.

Cancer has had a big impact on all our lives, but that doesn’t keep me from doing the things I love and enjoy. One of the things I love doing is going to camp every summer. The best part of camp is that everyone understands. Everyone knows what cancer is without having to explain a thing. If there is a kid who is bald, or missing a limb, or someone with a feeding tube, it doesn’t really phase anyone. We all just get it. We’ve all been there. There is complete acceptance and you’re just free to be yourself.

Another thing I love doing is the Teen Leadership Program through Kids Cancer Care. This year, I helped raise $54,000 so the teens could do a service trip to Mexico. While there, we visited a children’s cancer center, a shelter, a hospital with kids on treatment and helped out with a construction project. At home, in Calgary, we volunteer at the Ronald the McDonald House and at Kids Cancer Care programs and events.

I have also volunteered as a Kid Coach for the High Hopes Challenge. This year, I am Kids Cancer Care’s spokeskid and I am looking forward to sharing my story with people like you from across Alberta. My hope is to raise more awareness about this disease to inspire people like you to get involved to help kids like me and their families.

Helping kids with cancer helps me to make sense of my own cancer and it gives me hope for all of us. The motto I live by is: “Cancer may have started the fight, but I’m finishing it!” Thank you. It’s people like you that help me to live by this motto.

~ Ryane Nethery

My photo album

When Michael was 20 months old, something changed. Suddenly he was not himself. He became fussy, seemed to be sick constantly and was not eating and sleeping like he used to. After weeks of this, I got a phone call from our day home provider, saying Michael would not get off the couch and that he had a fever. I took him to a walk-in clinic, thinking “We’d better make sure everything was okay.” The doctor looked him over and said he seemed to “Maybe have an ear infection.” At home, Michael was lethargic and I suddenly noticed that his unusual clinginess seemed to be related to the fact that he couldn’t withstand any weight on his legs. The next morning, we had an appointment with our family doctor. At this point, Michael seemed to have stiffened up much more and I was very concerned. The doctor did not even look at him. He told us to go straight to our local hospital.

At the hospital, they did blood work and told us he was anaemic, which could explain his fatigue. The leg pain was attributed to his last cold and that the viral infection had inflamed his joints. We left the hospital…still not feeling great about this.

By this time, I had called my mother. She is a nurse and so I asked her what she thought. I wasn’t sure if I was overreacting or if I should be listening to my gut instincts. She told me she wanted us to have him checked out at the Alberta Children’s Hospital. She too had noticed his downward spiral and didn’t like the fact that he was getting worse instead of better. It was already quite late, so I decided to see how the night went and would decide in the morning. My mom instincts were firing like crazy, but I didn’t want to be blowing things out of proportion either.

We had a terrible night with little sleep and further development of his symptoms. It seemed that just touching him caused pain and he would not bend or use his legs. When I went in to comfort him, he was soaked in sweat. As soon as morning came, we were off to the Alberta Children’s Hospital. Little did we know we would not be coming home for a very long time.

In the emergency room we were put to the top of the triage list and taken right back. They were very concerned. “Is he always this pale?” “When did he stand/walk last?” “How long has he been sick?” “Is he usually a sweaty baby?” I remember comments about his veins collapsing for no apparent reason, enlarged lymph nodes and a lot of bruising. He became a human pin cushion that day with seven IV attempts until one finally stayed. I was trying to remain calm. While he was sick, his symptoms were progressing quite quickly. After about 10 hours in the emergency room, we were moved up to a unit to wait for an MRI. We were told he would not be going home until he was walking again. While I didn’t like the idea of being admitted, I was finally starting to feel like everything would be okay in a day or so.

Once situated on the unit, many tests were run. Pain medication was given. Fluids administered. Blood drawn…constantly. Sometimes three or four times a day. An MRI was done and we were told there was a lot of inflammation around his knees. They did not know the cause. Finally, morphine was given to see if we could start getting the pain under control. On the fourth day, we still had not seen improvement. There was no sign of home and I was growing weary of the hospital and lack of sleep.

Suddenly a team of about five doctors entered the room. They asked us to sit down and told us they had found blasts in Michael’s recent blood work. As soon as I heard the word blasts I knew. The word cancer had not been said until this point. With all the knee problems, the idea hadn’t even crossed my mind. It turns out that the blasts were overfilling his bone marrow, creating pressure on his bones. The pain must have been excruciating for him. Unfortunately, this news came on a long weekend. We had a long three-day wait to confirm this diagnosis and to find out what type of leukemia Michael had. On Tuesday, July 3^rd, his diagnosis was confirmed – acute myeloid leukemia (AML). I have no words for this day. Put simply, our world shattered.

Michael was scheduled the next morning for surgery to have a double lumen Broviac placed in his chest. This central line would allow his medical team to administer all the chemotherapy, blood transfusions, anti-nauseants and antibiotics. It would also enable them to perform regular blood draws for testing. We were very excited about this since we were starting to understand that the chemotherapy would make him better and having the central line meant no more needle pokes. The constant pokes, the isolation gowns, and of course the pain, had taken its toll on Michael. Now to add to his symptoms, he had become non-verbal. We were hopeful that the central line would decrease Michael’s discomfort and would make this experience more tolerable for him. In addition to the central line placement, we were told that they would do a lumbar puncture to test his spinal fluid for leukemia as well as a bone marrow biopsy to test the genetics of his leukemia.

The night was not good. It was our scariest night yet. His vital signs began to decrease. Oxygen saturation had decreased, heart rate had increased and his blood pressure was low. There was suspicion that pneumonia had set in. He was placed on antibiotics and chest X-rays were done. Add to this the pain and lack of sleep. I was becoming a pile of nerves. The next afternoon, my husband and I walked him down to surgery. Unfortunately, the progression of his illness caused him to code blue as soon as the anaesthetic was administered. He was placed on life support and sent to the Pediatric Intensive Care Unit (PICU).

I can remember sitting in the cafeteria and hearing “code blue” come over the intercom. I shuddered and said we needed to get back to his room. I did not know that the code was for Michael; but once again, my mom instincts were firing, and I felt that something wasn’t right.  About 30 minutes after returning, the anaesthesiologist came back…without Michael. We were told what had happened and were brought to the Pediatric Intensive Care Unit.

And there was my baby. He had been placed under sedation and was on a respirator. He now had pneumonia and his lungs needed a break to heal and recover. The sedation meant he wouldn’t fight the respirator and would not be in pain. The respirator was breathing for him, so his could lungs get the break they needed. The bone marrow biopsy and lumbar puncture were done in the PICU, so he could get the chemotherapy immediately.  In the darkness of the PICU, without windows and natural light, night became day and day became night as we waited for his lungs to heal and the chemotherapy to do its job. Time was meaningless to us.

After three days, he was showing signs of being able to breathe for himself. The strength of the respirator was gradually turned down over 24 hours until they were sure he could breathe on his own and be extubated. Two days after coming off sedation and off the respirator. we were sent back to the unit — our new home for the next seven months.

Things only got better after this. After his first round of chemotherapy, Michael went into remission. His body responded extremely well to the chemotherapy. Because of this, Michael did not need a stem cell transplant and he would be treated with five rounds of high-dose chemotherapy. After two months of physiotherapy and speech therapy, he began to walk and talk again. We managed to make it through five rounds of chemotherapy and seven months as an inpatient without any infection or further visits to the PICU. This was not to say our time was easy. Nausea, mucositis, fatigue and neutropenia took its toll on Michael. Neutropenia is low neutrophils, a type of white blood cell, which means his immune system was dangerously low and the simplest infection could be life-threatening. With each round of chemotherapy, the recovery became more difficult.

Our first introduction to Kids Cancer Care was during their weekly Pizza Nights at the hospital.  Every Wednesday they would bring in delicious pizza for families on the oncology unit. This became tradition for us. It was our family night. My husband would bring my other son and we’d eat our pizza and watch a movie. It gave us the family time we so badly missed and NEEDED. It was on a Pizza Night that Michael walked again, on his own, for the first time since the ordeal had begun. I remember being beside myself with happiness and the Kids Cancer Care volunteers joined us as we celebrated.

Once Michael was off treatment, Kids Cancer Care gave us experiences we otherwise would not have been able to have. For the first year, Michael would have very low immunity. Even though we got to go home, public places were off limits for a certain period. In this time, Kids Cancer Care allowed us to partake in a morning at the Calgary Zoo to see the pandas. Everything was disinfected and we were allowed in before the public to decrease the risk to the children. We also participated in a wonderful Mother’s Day gathering at Camp Kindle.  A day of skiing in February.  The list goes on.

And then there is camp.

I will admit, I wasn’t totally sold at first. My oldest son Henry was four at the time and I didn’t see the need for him to attend since he did not have cancer and Michael was done his treatment. How wrong I was.

When going through an experience such as this, we all need our “tribe.” For me, it was my very close friends and family and my husband. I had incredible support from all of them. For my husband, it was our family and his friends. After the first day of camp, I saw that Henry had finally found his tribe. I had not realized how much coping he had left to do. This was a place where things started to make sense without there having to be a conversation. He was surrounded by this world of children fighting cancer and children who had fought cancer. Siblings of children who had fought cancer, were fighting cancer, or were bereaved. Despite everyone’s stories being different, they were making it. They were having fun.  They were supported.  The cancer world is filled with fear and instability. For Henry to be surrounded by this allowed him to finally find stability in the cancer world. We noticed a huge change in him after camp.

Our world will never be the same. We will never be the same. We do not know what lies ahead in the future. The risk has decreased with time; however, relapse is still a possibility for our future. This type of leukemia carries a very high chance of relapse. The incredibly high doses of chemotherapy that Michael received could have negative effects on his heart health as he gets older. We have been told that his eyes and hearing should be checked regularly. His heart will be checked for defects annually for the rest of his life. His risk of secondary cancer is also very high.

I have learned over the months that living in fear of the what-ifs, while necessary, is also a step backwards for our family. We almost lost Michael once. The what-ifs force us to lose him in our minds over and over again. So, for now, we focus on today. Michael is meeting his milestones and brings us happiness and joy every single day. We now have a three-year-old who has more empathy and love than I could have ever thought was possible. We know this has come from the love that was shown to him from family, friends and health care providers during his treatment.

My favorite thing that has come from this experience is meeting organizations like Kids Cancer Care.  Knowing that there are organizations that fight for our kids, fund research and provide support is so important. Thank you for supporting this incredible organization.

~ Michelle Connor, Michael’s mother

Michael’s Photo Album

At the age of just three and a half months, my son Carter was put on the list for a heart transplant and, at five and a half months, he received a new heart. We were overjoyed. But then this past August, at the age of nine, Carter was diagnosed with non-Hodgkins lymphoma – a cancer that can arise in transplant recipients. His cancer was diagnosed at stage 3 – and tumours were found on his kidneys and bowels. It has been a tricky process for the doctors to treat his cancer because they do not want to add any more damage to Carter’s kidneys or heart. Despite all that he has gone through, he is the sweetest guy you will ever meet.

I was recently laid off from work and I am now collecting Employment Insurance benefits – Compassionate Care. While I am grateful to receive this financial help, it’s still very difficult to make ends meet each month. The children’s Dad and I divorced in 2013 and he wasn’t really a part of their lives. Last year he passed away with the same heart condition as Carter.

We are facing one of the biggest struggles our family has ever faced, but I feel blessed to have such wonderful children: Olivia is 11 and Carter is nine. I also have two adult children Jack, who is 21 and Alyssa who is 20, who have been with us every step of the way. They have been the backbone holding us all together.

We are sincerely thankful for everything that Kids Cancer Care has done for our family. Pizza Night at the hospital has been a favourite of ours over the past many months. We don’t have the proper words for all the support we’ve received, but it has definitely not gone unnoticed or unappreciated. Thank you Kids Cancer Care.

~ Tracy Thompson

Carter’s photo album

Diagnosed with laryngeal cancer at the age of 18, Julie Deleemans remembers the psychological toll of cancer more than its physical hardship. They removed the cancer with a total laryngectomy — a surgical procedure that removed her larynx (voice box), thyroid and surrounding lymph nodes. 

Julie then underwent three rounds of high-dose chemotherapy combined with 30 rounds of high-dose targeted radiation. Although the cancer treatments lasted only three months, the aftermath will last forever. Julie was left with a permanent tracheotomy — a hole in her throat for breathing. The radiation caused extremely painful inflammation and ulceration in her throat and ultimately damaged the tissue, causing her body to reject the TEP valve — a tracheoesophageal voice prosthesis to help her to speak.

“I was left with a tiny whisper of a voice and permanently disfigured by the surgery,” says Julie. “I could no longer speak normally, so I lost my jobs. I lost friends. Travel plans were cancelled. My life was shattered. I had no idea where I fit in anymore or what I was supposed to do.”

With a health care team singularly focused on her physical survival, Julie struggled without the social support of her friendships and without the professional support of a trained psychologist. It was an extremely isolating and painful experience.

Unable to pursue her university plans or land a job, Julie was forced to go on social assistance and continue living with her family. Instead of diving into a newfound independence, which normally comes with young adulthood, Julie was becoming more dependent.

Permanently disfigured by surgery, Julie struggled with her body image. She struggled with severe depression and anxiety and was later diagnosed with post-traumatic stress disorder. For a few years, Julie was suicidal.

After suffering for several years and trying unsuccessfully to get help, Julie decided she needed to make a change and started an undergraduate program in psychology at the University of Western Ontario. “I was looking for answers to questions that others could not seem to give me,” says Julie. “I was searching for a way to heal myself.”

With the help of a Kids Cancer Care Derek Wandzura Memorial Scholarship, Julie is pursuing a PhD in psychosocial oncology at the University of Calgary Cumming School of Medicine. She is investigating the effects of chemotherapy on the gut microbiome to understand how changes in the gut may affect the survivor’s physical and psychological wellbeing.

With this research, Julie hopes to arm researchers and health care professionals with the knowledge they need to develop targeted interventions to prevent or reverse the long-term effects of cancer treatments.

Julie is interested in putting her research into action by developing the interventions herself. She sees a day when cancer treatments may be supplemented by proper nutritional support (i.e., a healthy diet rich in pre- and probiotics), regular exercise and complementary therapies such as mindfulness and yoga. Patients would also receive social and psychological support throughout the cancer journey.

“After nearly a decade I feel I have finally come full circle — from patient to advocate and now researcher,” says Julie. “My experience with cancer is why I do the work that I do. For many years I wondered why I had survived cancer and what my purpose in life is. Now I understand. I firmly believe the reason I survived and endured such challenges was to prepare me for the opportunity to help others navigate the cancer journey.”

Julie draws strength from her research work and from the words of Carl Jung, the Swiss psychiatrist and psychoanalyst, who famously said, “I am not what happened to me. I am what I choose to become.”

My son Jaxon was just four years old in 2017 when he was diagnosed with medium to high risk acute lymphoblastic leukemia. It was a shock to me. What I initially assumed to be growing pains was actually deteriorating bone marrow density and a spinal compression fracture. Whoever heard of a preschooler with a broken back? I had no idea what lay ahead. I was terrified.

The turning point for Jaxon happened within the first month of treatment, which they call remission induction, where they attempt to destroy all the leukemia cells in the patient’s blood and bone marrow. During this time, Jaxon rapidly put on weight due to the steroids. Not only did his skin itch and his body ache, but he was also dragging around all this extra weight. He was on painkillers that didn’t minimize the pain, but made him feel lethargic. This was quite a change from the active boy we knew. As his mother, this was the hardest thing for me to see, such a drastic change in behaviour. I still struggle with this.

Sometimes I worry that I will never get that boy back. I continue to learn more about the immediate and long-term effects of treatment, as we move through the journey of battling cancer. I’ve learned that chemo injections into the spine causes personality and behavioural changes. It also causes learning difficulties. I tried to prepare myself and my other two children for Jaxon’s eventual weight loss, loss of hair, nausea and mood swings, but I’m not sure anything could have prepared us for the personality changes we saw. How do you mourn the loss of the personality and life we knew as Jaxon? This disease greatly alters and rearranges the lives of a family.

Cancer effects our whole family. Although we all rallied around Jaxon and the well-being of my other sons Ethan and Ryan, my marriage dissolved quickly under the pressure of our new reality. I think Jaxon’s father just wasn’t prepared to see the effects that cancer had on his child. He still has zero interest in dealing with Jaxon’s cancer and the treatments. He even refuses to take the other boys, while Jaxon and I are at the hospital.

My children have shown amazing strength and resilience throughout all of this. Jaxon’s brothers have bonded together to help get us through this in really incredible ways. Jaxon’s twin brother Ryan has become Jaxon’s voice and confidant, while his older brother Ethan takes on a more protective role. When Jaxon’s hair started falling out, Ethan was always there to tell him he looked cool or to stop others from drawing attention to it. As a single mother, I continue to be inspired by how my sons have dealt with the changes Jaxon is going through. They have all played an important role.

Jaxon is still actively fighting this battle and will continue to do so until July 2020. At that time, he will be seven years old and will have battled cancer for most of his life to date. Battling leukemia is long and arduous and even when the treatments are over the battle is not. The treatments can cause depression in kids, which is something Jaxon battles with regularly, saying things like, “Just let me die” and “Aren’t I better yet?” Not surprisingly, he usually says things like this after an extended hospital stay. It’s difficult for Jaxon’s brothers to truly understand just how long treatment is. For most kids, an illness is usually over within a week or two. Being on treatment for three and half years is difficult for children to comprehend.

At this point in Jaxon’s cancer journey, my boys are just grateful for his improved health. We are now more focused on paying what we can forward. We are grateful for the amazing people and organizations who have helped us get through the first very tumultuous year.

I don’t think we would have done as well without the support of Kids Cancer Care. I don’t know how I would give the kids the foundation for emotional healing that Kids Cancer Care provides.

For me, the best decision I made, as a single unemployed parent of three boys, was to focus on my son’s recovery and make sure he was not alone. The support Kids Cancer Care provides our family allowed me to do that. They have been there for me and Jaxon and his brothers through every step of this journey. I know the foundation is there for people just like me, facing the same family crisis that we have faced together. They know the struggles. They know next steps. They have the empathy and the experience of interacting with parents in shock and then throughout recovery. That allowed me to breath, during a time when I felt I was drowning.

I am grateful for my children every day, but as we draw closer to Christmas, I feel even more blessed. I cherish the love of my children and all the love we have in our lives. May you be blessed with health, love, peace and joy this holiday season and everyday of the year.

~ Marie Howell, Jaxon’s mom

Jaxon’s photo gallery

“I woke up at 4 am to hear wolves yapping. I was still pretty groggy, but then suddenly I shot up: ‘They’re yapping because they’re circling me.’ I ran out of the tent to see five sets of eyes in the dark — three on the left and two on the right.”~ Dan Stourac

Dan was 19 years old when he took his first job as a big game hunting guide. He joined his two older brothers Ben and Lorne on a 500-kilometre trek through the Yukon and Northwest Territories. One of the world’s longest trail rides, it would be one of the loneliest and toughest trips he’d ever make, testing his physical and mental stamina in ways that hadn’t been tested in years.

It was their second season up north and, unlike the first season, the weather was unseasonably warm that fall. When Lorne was flown out to do a backpack hunt and Ben and the hunter left to take advantage of the late caribou migration, Dan stayed behind. He was alone with six horses and a promise that they would return in three days.

“Three days! Three days!” says Dan. “They promised they’d be back in three days.”

Horses are essential to the trip, carrying loads of gear and supplies from one campsite to the next. Dan stayed behind to tend to the remaining horses. On the second day, Dan was cooking sheep steaks on the fire when a bear started coming toward him. The bear was about 20 feet away on the other side of the river, jerking his snout in the air, sniffing out his next meal. Dan stood there dumbfounded with a couple of steaks in his hands.

“I started yelling and taunting the bear,” says Dan. “‘Do something! Me or you! Give me a reason!’ I had my shotgun nearby and as I stood there waving and yelling, the bear casually walked on by. I knew he would come back at night, after I untied the horses to graze.”

Sleep didn’t come easily for Dan that night. He eventually dosed off at about 2 am, but was roused from his sleep a couple of hours later.

“I woke up at about 4 am to hear wolves yapping,” recalls Dan. “I was still pretty groggy, but then suddenly I shot up: ‘They’re yapping because they’re circling me.’ I ran out of the tent to see five sets of eyes in the dark – three on the left and two on the right.”

He fired a shot into the night and five sets of eyes disappeared. Losing any hope of sleeping that night, Dan built a large fire and waited for the sun to rise. When the sun did come up, Dan set out to gather the horses. It was a bit unnerving for Dan as he tracked the horses’ hooves, which were overlaid with fresh wolf tracks. He brought back all six horses. They were a bit edgy and nervous, but untouched by the wolves.

“When Ben and the hunter didn’t return after three days, my head went to a bad place,” says Dan. “I wondered if they were hurt. I couldn’t go look for them because you can’t pack and trail six horses on your own. I couldn’t leave the campsite because the wildlife would destroy our gear, rummaging for food. I was pinned down and assuming the worse.”

No strangers to adversity, Dan and his family had already battled their worst nightmare, when at age four, he was diagnosed with leukemia. At the age of seven, still on treatment, Dan and his brothers went to their first summer camp through Kids Cancer Care. The boys grew up going to cancer camp and Dan credits camp with building the strength and resilience he needed to survive his experience in the Northwest Territories.

“Camp is so much more than putting a smile on a kid’s face,” he says. “A smiling face is just a small glimpse into the impact you’re having as a donor. You’re building a foundation for growth. You’re building character. You’re building courage and resilience. Camp is showing kids, who will grow up and show others, that life is amazing. It isn’t just fueling an environment where kids can rest and have fun. It’s fueling an environment of human potential and growth, showing kids how to believe in themselves and how to become better people. That’s what camp was for me.”

Alone in the wilderness with little more than his thoughts, Dan started missing cancer camp badly that September. “My head space was really bad,” he says. “That summer was the first time I hadn’t been to summer camp and I missed it. I missed my friends. I missed the counsellors. I missed everything about it. I decided that if I couldn’t be at summer camp, I would bring it to me. I was trying to keep my head straight, so I started writing to divert my thoughts. For days, all I did was eat and write in my journal. I knew if I got out of there alive, this would be my first novel and I would dedicate proceeds to Kids Cancer Care.”

On the seventh day, Ben and the hunter returned, all smiles and swagger, showing Dan the sheep and caribou they harvested.

Eventually, Dan’s cancer-related health issues would force him to quit guiding for a living. With a bad heart and Raynaud’s syndrome, his body struggled to tolerate the shock of subzero temperatures.

“We were tenting in minus 20 overnight,” recalls Dan. “I started having really bad heart palpitations that third season. My heart was beating 230 beats per minute. You could see my chest vibrating. I lost 23 pounds of muscle and had to cut my third season short. I had to pick a different path in life.”

Eliminating the possibility of ever guiding again, Dan returned home, taking on odd jobs, while finishing and self-publishing his first novel, Grim’s Prodigies, under the penname Remmy Stourac. Facing his own mortality on more than one occasion, in his first novel, Dan takes on death once again — this time on his own terms.

Grim’s Prodigies is the first book in a fantasy series called The Reaper’s Inception. Dan’s playful spirit and love of language are evident from the start. Its lively energy and easy humour stand in stark contrast to its serious subject matter.

The Grim Reaper in Dan’s story is no static character. He struggles and grows over the course of the book. He transforms from a soulless demigod, ruthlessly taking the lives of his victims, into a being who cares about the people he takes.

“I wanted to change the perception of death,” says Dan. “Death changes the perception of himself in the book. He’s trying to make these kids, the four prodigies, appreciate life and keep the world going even with all its pain and suffering.”

Cancer and the chance to go to camp each summer similarly changed Dan’s perspective on life and death. “Camp totally transformed me. It gave me a new appreciation for life and a willingness to totally embrace life and all its setbacks.”

Later, as a counsellor and volunteer at Camp Kindle, Dan saw the transformative power of cancer camp in the lives of young campers. But this time he was able to see it as an adult.

“Camp Kindle has this challenge-by-choice philosophy and it is incredible to see how this seemingly insignificant thing is so meaningful and life-changing for kids,” Dan says. “The summer I was a counsellor, there was this little girl who was terrified of heights. She must have been about 10 or 11. She’d lost her brother to cancer and it was super terrifying for her to go on the giant swing. There was a lot of talking with her, when suddenly she decided: ‘I’m gonna’ do it for my brother.’ She went right to the top. That moment on the giant swing literally became a choice for her and it was a life-defining moment. Tears were streaming down her face when she came down. She was so happy: ‘My brother and family are sure going to be proud of me.’”

Dan believes you need to give young people a chance to choose and then wait to see what they do. If you give them a choice and a chance to step outside their fear, they may not be so afraid to stand on their own when the peer pressure sets in later in life. This is what camp did for Dan and why he is dedicating a percentage of the proceeds from his first book to Kids Cancer Care.

“Camp will always be my home,” says Dan. “I will always take the opportunity to give back to Kids Cancer Care. Everyone should have the chance to see camp in action and watch these kids grow.”

If you’re looking for a Christmas gift for that person who has everything, why not order a copy of Grim’s Prodigies? Ten per cent of the proceeds will go to Kids Cancer Care and you’ll be opening a door to an epic new world of monsters and mortals and a refreshing and authentic new voice in sci-fi fantasy. To order your copy or for a full book review, visit http://remmystourac.com/.

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Your gifts helped build an innovative research space that is pushing the bounds of laboratory design and scientific collaboration

It took leadership and a few design risks, but pediatric cancer researchers in Calgary now have a modern, open-concept collaborative research space to call home — thanks to you.

The new laboratory space provides the perfect environment for researchers, grad students and postdoctoral scholars to investigate the biology of childhood cancer and blood disorders.

Challenging how we think about lab design: modifiable workspace 

Guided by her vision for a transformative lab, Dr. Jennifer Chan, the Kids Cancer Care Chair in Pediatric Cancer Research, worked with IBI Group Calgary and the University of Calgary Facilities team of architects and planners to push boundaries and challenge traditional notions of laboratory design.

The result is an open-concept lab with shared workspaces equipped with fully configurable benches, specialized research rooms, student workspaces accessible through sliding glass doors and glass-walled supervisor offices along the outer edges to create an unbroken sight line across the facility.

“Our new space is very different than any other on campus,” says Chan. “The lab design allows for easy reconfiguration to accommodate future technology or new equipment — it’s like Lego. That’s the beauty of it. We’re working as we intended in a modifiable space. Although complete future-proofing is a challenge, we can still anticipate that change will happen.”

Jane Ferrabee, the U of C architect, and the U of C Facilities team that designed and built the space pushed themselves to think about their standards more critically to provide a space that allows researchers to work more efficiently and collaboratively.

“We saw this as an opportunity to explore innovation and go to new places in lab design,” says Ferrabee. “It challenged everyone involved — from electrical, IT and lighting to the lock shop and furniture — to think differently about the way we do things.”

Lab design fosters environment for improved teaching and learning

With the new research facility, Chan saw an opportunity to create an improved team environment, to cultivate new ways of teaching and learning in the lab and to strengthen the connection between medicine and basic science.

“We’re changing the culture of how we work — any time there’s a change, there’s an opportunity to improve the work culture,” says Chan. “We’re promoting the culture of the group with our decisions.”

Chan explains how the new lab set-up fosters collaboration: With the old lab space, it was like “sitting at a bar, facing forward with your food in front of you — you’re in your own compartment. This new approach is like a dinner setting, where everyone is facing each other with food in the middle, and everyone is communicating and collaborating around the table. We took our then-current notion of open concept and looped it into a circle.”

With private spaces on the outer edge, common spaces in the middle and sliding glass doors connecting everything together, students can get their work done in the quiet workspaces, while still keeping an eye on what’s happening in the lab. This spatial layering means students are close to their group, their work and their supervisors’ offices, allowing for close-knit interactions and mentorship between student and supervisor. The set-up also facilitates passive supervision, which is important for safety and productivity.

“It builds a sense of community,” says Chan. “You see someone working and it inspires and motivates you to work.”

Jennifer Chan, MD, is an associate professor in the departments of Pathology and Laboratory Medicine, Oncology and Clinical Neurosciences at the Cumming School of Medicine. She is the Kids Cancer Care Chair in Pediatric Cancer Research, a member of the Terry Fox PROFYLE initiative, Alberta Children’s Hospital Research Institute, the Arnie Charbonneau Cancer Institute and the Hotchkiss Brain Institute.

The new research space was made possible by generous donations from you through the Alberta Children’s Hospital Foundation, Kids Cancer Care Foundation of Alberta and the Alberta Cancer Foundation.

— Revised with permission from the University of Calgary

The speed of the car picks up and they enter what racers call the 100-mile-an-hour club. It is at that moment that Connor’s whole face lights up.

Sitting in a coffee shop in Calgary’s inner city on a chilly February afternoon, Brent Thorkelson describes one of his most memorable days.

In the sunny Okanagan on a gorgeous May long weekend, Brent is behind the wheel of his 2007 GT3 Porsche. A Porsche lover since he was five-years-old, Brent knows this car well.

His passenger is a young man named Connor. Earlier that day, Brent had met the shy preteen. Brent says, “Connor seemed so sad, he was quiet, almost depressed” as he climbed into his race suit, put on his helmet and was strapped into the five-point harness.

And he had every reason to be. This weekend was a rare break from his childhood cancer treatments.

Brent and Connor are driving up Knox Mountain as part of the Knox Mountain Climb, an annual event in Kelowna. Trees blur past them and the road winds. In just two minutes they have travelled 5km and climbed 800 feet. They’ve hit most of the ten turns on the route. The speed of the car picks up and they enter what racers call the 100-mile-an-hour club.

It is at that moment that Connor’s whole face lights up.

Brent can’t help but smile. It’s not the first or the last time he will venture up Knox Mountain. In fact, he does it every year.

Hands Together for a Cure is a passion project for Brent, his wife Lenora and their son Ben. Brent has always been involved in motorsport and wanted to use his passion to give back.

As an Advanced Care Paramedic for over 28 years, Brent finds himself on the scene of countless “accidents.” But he doesn’t love the word: “The term accident infers that nothing contributed to the event. More importantly, that the event was not preventable. As a practitioner, we see numerous incidents, but very few accidents. You can’t get a truer definition of this word than a child being afflicted with cancer. He or she did nothing what so ever to be “saddled” with this unforgiving disease.” The Thorkelsons wanted to do something to bring joy and laughter into these children’s lives.

That’s where the Knox Mountain Hill Climb comes in. Brent has been going to the Knox Mountain Climb since he was five. The event includes a beer garden, car show and the competitive climb. His dad, now 88, still joins him every year. He knew that something that brought him so much joy could also bring some happiness to these kids, if even just for a day between treatments.

Brent and his Porsche do about 12 to 13 drives up the hill through Hands Together for a Cure each year. The ride is unique in that it gives children an experience they wouldn’t otherwise get and at the same time it is a fundraiser. The kids ride for free, thanks to year-round fundraising through Hands Together for a Cure and donations from other drivers in the Knox Mountain Hill Climb. Brent sells the remaining spots at $500, with all the proceeds going to childhood cancer research, including Kids Cancer Care.

Humbly, Brent shares what goes into making the event a success: a website to maintain, pounding the pavement to sell rider spots, coordinating the kid spots with charities in British Columbia and Alberta, organizing transportation for the families (thanks to CanWest Air Charters), silent auctions, appearances, picking up cheques from donors. That doesn’t even touch upon the upkeep of the car, which is covered in handprints of children who have had cancer – a constant reminder for Brent and those involved as to why they do this every year.

And it’s all worth it.

Last year, Hands Together for a Cure broke $115,000 total raised in 6 years.

Connor and Brent are at the top of the course and start heading back down the hill. The other drivers unbuckle (no easy task) and get out of the cars. Marshalls line the route and give a standing ovation.

And on the way down, all Connor could say was, “Wow!” Brent can still hear the words clearly in his mind, like it was yesterday.

All the funds raised from Hands Together for a Cure are making a difference in the lives of children affected by cancer. The funds donated to Kids Cancer Care research to change the course of childhood cancer for the approximately 1,400 children diagnosed in Canada every year.

Brent smiles as he shares that Connor is cancer-free today, something he hopes for every child fighting cancer. And that is no accident.

To book your ride with Hands Together for a Cure at The 2018 Knox Mountain Climb, click here.

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For the first time in Canadian history, more than 30 pediatric cancer research and funding groups have joined forces through the Terry Fox PROFYLE initiative, a pan-Canadian project that will give young people with high-risk cancers a fighting chance.

Short for PRecision Oncology For Young People and spearheaded by the Terry Fox Research Institute (TFRI) in Vancouver, PROFYLE is providing $16.4 million to date to establish molecular profiles of patients’ tumours, which have resisted conventional therapies, in order to identify potential new avenues for treatment.

Thanks to your support, Kids Cancer Care is a partner in this national research effort that is pooling resources and bringing together research and clinical expertise to give kids with no more treatment options hope.

PROFYLE was developed with kids like Joel Zukowski in mind. Joel was 10 years old when he was diagnosed with medulloblastoma, a type of brain cancer. He relapsed at the age of 15 and exhausted all treatment options. Sadly, Joel passed away in October 2015 at the age of 16, after a long courageous battle with the disease.

One of the hardest days in Ed Zukowski’s life was telling his 16-year-old son there was no hope left in his battle with cancer. “It’s one of the most difficult discussions I had with Joel, figuring out how to tell him there was no more hope. He didn’t give up. He kept trying. That’s why research is important. You can’t give up.”

“We think about the day Joel was first diagnosed,” says his mother Dale Zukowski. “What if there was no understanding of chemotherapy, or radiation or surgery. If they didn’t do research, Joel may not have made it more than six months after being diagnosed.”

Project lead Dr. David Malkin, based at The Hospital for Sick Children (SickKids) in Toronto, says PROFYLE is bringing together the entire pediatric and young adult national clinical and research expertise to offer precision medicine in a way that has never before been offered in Canada.

University of Calgary clinician-researchers Dr. Victor Lewis and Dr. Jennifer Chan will co-lead the research project in Calgary. Lewis will help identify and treat patients, who may benefit from being enrolled in PROFYLE. Chan will ensure the collection of and access to the right kind of tissue and fluid samples for research into treatment options. The nationwide bio-specimen collection protocols are being developed by Chan, as is the associated clinical data repository, which will be facilitated by the Clinical Research Unit at the Cumming School of Medicine.

“We now know brain cancers in adults are not the same cancers that develop in children,” says Chan, who holds the Kids Cancer Care Chair in Pediatric Oncology Research. “We’ve learned that while the tumours may appear the same to the naked eye, and even under the microscope, at the molecular level, they are very different, and that means we need to develop new treatment protocols for kids.”

Chan’s lab is supported by investments from the Alberta Children’s Hospital Foundation and the Kids Cancer Care Foundation of Alberta made possible by you.

“We are thrilled to see the Terry Fox PROFYLE initiative come to life,” says Christine McIver, Founder and Chief Executive Officer of Kids Cancer Care. “If we are going to make any progress in treating incurable children’s cancers, we need collaboration at all levels of society – government, industry, universities, hospitals, charitable organizations, individual and corporate philanthropists. PROFYLE is that collaboration and will bring hope to Canadian families who currently have no hope for a cure. We’re so grateful to our generous community for making this possible.”

“It’s generous support from the community that makes innovations and advancements for kids possible,” says Saifa Koonar, President and CEO, Alberta Children’s Hospital Foundation. “Working alongside partners like Terry Fox PROFYLE and Kids Cancer Care helps us keep kids’ health a research priority.”

While there has been dramatic improvement in treatments and outcomes for many pediatric cancers over the last three decades, for the 20 per cent of young people whose cancers continue to spread, return, or resist treatment, outcomes remain grim.

“Maybe in 20 years a child with the same cancer as our Joel-Bear survives. I wish that was my kid, but Joel lived six years longer than a kid 20 years ago and we’re very grateful for that,” says Joel’s mom.

Thank you for bringing hope to children by supporting research.

Jennifer Chan, MD, is an associate professor in the departments of Pathology and Laboratory Medicine, Oncology and Clinical Neurosciences at the Cumming School of Medicine and is a member of the Alberta Children’s Hospital Research Institute, the Arnie Charbonneau Cancer Institute and the Hotchkiss Brain Institute.

 Victor Lewis, MD is an associate professor in the departments of Oncology and Pediatrics at the Cumming School of Medicine and a member of the Alberta Children’s Hospital Research Institute and the Arnie Charbonneau Cancer Institute.