You made camp a reality when it seemed impossible

Auralia went to Camp Kindle for the first time in 2019. She spent the next year regaling her parents with stories of her camp adventures and questions about when she would go again. But as 2020 unfolded it became clear that camp would not be a reality this year. Instead, 2020 has become the year of the pandemic and her parents had to tell her that, sadly, she would not be able to attend Camp Kindle this summer. 

But then she did! 

Thanks to you and the dedication and ingenuity of our hardworking staff, Auralia and her parents are one of 44 families, totalling 198 individuals, who will enjoy Camp Kindle this summer.

Glamp Kindle: Family VayCay 2020 has been an enormous pivot this year. After temporarily shutting down Camp Kindle in the early days of the pandemic and laying off most of our camp staff, those who remained got creative, envisioning a safe way to still provide cancer camp to kids and families. Collaborating with Alberta Health Services to ensure all pandemic safety protocols were in place, we welcomed our first two families to Camp Kindle on June 5.

With your support, each week, four different families will spend three days each at Camp Kindle in one of our two self-contained family units. They have the run of camp and are provided with welcome baskets full of ideas, activities and snacks like s’mores to keep them busy and having fun. Kids get to show their parents around, introducing them to all their favourite spots and sharing memories of past summers. Parents finally get to spend time at their children’s home away from home. 

And Camp Kindle really is a home away from home for Auralia. Her world turned upside down on November 14^th, 2018, when she was diagnosed with B-cell acute lymphoblastic leukemia. Treatment started immediately and her mom Trinda said the trauma and PTSD of diagnosis and early months of treatment really cannot be understood if you haven’t lived it. 

Auralia quickly became disconnected from friends, spending all of her time at home or hospital with just mom, dad and her pets to keep her company. The family of avid hikers lost that activity too, as Auralia went from tackling 12-kilometre hikes to barely being able to walk a kilometre. Returning to school did not go well for her either. Despite everyone’s efforts, Trinda did not feel there was an adequate level of cleanliness to protect Auralia’s health. 

Thanks to your generosity, summer 2019 marked a turning point for Auralia. She attended Camp Kindle and had the time of her life. She found a new school to attend that fall and began the hard work of regaining her strength and endurance. That year, Kids Cancer Care’s PEER exercise program became a highlight of her week and she made a new friend at school. Despite the ongoing treatment, less than a year in to a two-and-a-half-year schedule, her family felt like they were starting to get the hang of things. 

But winter 2020 and the Covid-19 pandemic returned them to a heightened state of fear for Auralia’s health. Locked back into intense isolation, Auralia became distanced from her friends again as virtual conversations proved very challenging for her. Trinda and her husband Ryan returned to the roles of playmate, teacher and besties to their daughter and they spent the spring trying to figure out a new dynamic.  

When they heard about Glamp Kindle: VayCay 2020 they were quick to say, “Yes, please!” An opportunity to get out of their home to a safe place and spend time outdoors was exactly what they needed. It would be the perfect little pick-me-up. Auralia was so excited to share Camp Kindle and all her memories with her parents. Her family could not believe their luck to have a few days of retreat in the Foothills. After months of isolation at home, you gave them a family vacation in the only place safe for them. 

They made the most of their time at Camp Kindle, fitting in as much activity as possible. They tried out the archery range and discovered Trinda had a knack for it, hitting the bulls-eye while Auralia and her dad Ryan struggled to match Mom’s skill. They had so much fun they went back to the archery range a second time to try their luck again!

They watched the wildlife in the pond – beavers, muskrats and geese – and tried to figure out why in the middle of a beautiful thunderstorm, the mother goose brought her goslings outside their cute little island house to brave the elements.

With camp at their disposal, Ryan, Trinda and Auralia were quick to get out hiking again. They headed up to the Reflection Garden where they took some time to be quiet, thinking about the important people in their lives. Sensing the serenity of the place, they found not only a four-leaf clover, but also a five-leaf clover! These are now preserved in books at home as memories of their time together at Camp Kindle. 

Also to be treasured, are the art projects provided in their welcome baskets including Ryan’s beautiful painting of the Remington Barn on a wood cookie and their Scrabble name collage. 

Glamp Kindle is giving families a break from isolation and treatment this summer and opportunities to celebrate important milestones such as the end of treatment. If there’s one thing Trinda would love friends of families going through childhood cancer to understand, it’s that they don’t have the capacity to keep asking for help when they need it. The journey is too long and too overwhelming to keep making requests. They simply cannot keep reaching out, but they never stop needing support – they just need their friends to be the ones to keep reaching out to them.  

That is the beauty of Kids Cancer Care. It exists to meet the needs of families and anticipate the needs some may not even know they have yet. Thanks to you, we can reach out to them over and over again with new opportunities for their kids, the family and parents, so that when they are ready, they can participate in ways that meet their unique needs. Summer camp, family camp, tutoring, ski days, parent cooking class date nights, therapeutic supports like the PEER exercise program and child life to manage fears and anxieties are just some of the opportunities available to them when they are ready. 

This is only possible because of you. Thank you for your ongoing, generous support, brightening the lives of children with cancer and their families.

“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/.

Photo gallery

Our cancer journey began like many families whose children are diagnosed with leukemia – with symptoms and signs that we initially discounted as common, normal ailments of childhood. There were no red flags, no reason for cancer to even be a blip on our mind. But looking back now, we can pinpoint the start of Foster’s cancer journey.

The Holiday Curse

When Foster was three years old in November 2015, we took him to a pediatrician for leg pain. It was only in his left leg, the leg he’d broken about six months earlier. As a precaution, we had X-rays done. Everything came back perfect, so the doctor thought it was just growing pains.

Fast forward a few weeks. December 25, 2015, Christmas morning. There was no 5 am wake up call to see if Santa had visited. In fact, we had to wake Foster up and bring him downstairs because he was so tired, feverish and nauseous. He spent the whole day on the couch barely able to open more than a couple of presents. It was sad to see him like that on Christmas Day, especially since only eight months earlier he had broken his leg at Eastertime. Two major holidays and Foster was out for the count, unable to enjoy these special occasions!

On January 6, 2016, Foster turned four years old. There was cake, balloons, presents and sickness again. What we thought was just the flu, seemed to come and go since Christmas. It wasn’t too concerning at the time. Tylenol would bring the fever down. He would have a bad day or two, but then he’d bounce back to his regular self. Illnesses always seemed to hit Foster the harder and he took longer to recover, so it wasn’t out of the ordinary for him. We started to think he had the holiday curse!

A short while later we booked a family vacation. We didn’t want the holiday curse to continue, so we decided to take Foster to the doctor for a check-up to make sure he was clear to travel. The doctor checked him over and seemed to think he was at the tail end of the flu. It was safe to go on our vacation. Whew!

We headed off on our vacation and arrived with two bouncing excited kids. The first few days were absolutely amazing, though Foster seemed tired and irritable. Then it happened, Foster got ill again. Fever. Cough. Headache. Runny nose. Nothing serious we thought. Just another cold from travelling and being run down from the first few days of vacation. He spent the next couple of days in the hotel room. Timing just wasn’t great for this little guy. First Easter, then Christmas, then his birthday, and now vacation was a bust.

It seemed like he might have a sinus infection, so we took him to a clinic to make sure he would be alright to fly back home. They assessed Foster and asked the questions we got all the time: “Is he always this pale?” “Does he bruise like this all the time?”  You see, Foster has oculocutaneous albinism, which means he has lower levels of melanin. Among other things, this means he has pale skin, which means his bruises are more pronounced and noticeable. The doctor came to the same conclusion. It was a sinus infection and we left with antibiotics. As soon as he had the antibiotics, he instantly looked and felt better. We were ecstatic to see him enjoying a day or two of fun, before leaving for home.

The Unbelievable

After a long flight, we arrived home the morning of January 26, 2016. Both kids were exhausted, but Foster seemed to be feeling much better, until the next day. He woke up complaining about his leg again. We just wrote it off as growing pains again because he just had a clear X-ray a couple of months earlier and there were no visible signs of anything wrong. No redness. No swelling. No bruises. Nothing.

This is where a date, January 28, 2016, becomes permanently etched in my mind. I remember every moment of that day – dropping the kids off at school and preschool, picking them up, taking our daughter Kaidence to skating lessons, Foster and me watching her from the stands. Though, that night was different. Foster’s leg pain seemed to be getting worse. He could barely walk on it. During the skating lesson, my husband picked Foster up and took him to the Alberta Children’s Hospital. We thought, “It must just be a complication from when he broke his leg. What else could it be?”

What else could it be? That question will haunt me forever. My husband and Foster arrived at the hospital around 7 pm. Brian sent a cute picture of Foster waiting in the ER, then an update, “We’re just waiting for X-rays.” Then, Brian got those horrible words first. I can’t even imagine what he was going through by himself in the ER when he heard those words, “Foster has leukemia.” When Brian phoned, I thought he was joking around when he told me to sit down. You see Brian is the family jokester. He is always making us smile, even with his lame daddy humour. But I quickly realized from the crack in his voice that this was serious. I will always remember that moment, when I could hear the pain in his voice, telling me that Foster has leukemia. My brain, my heart, still wouldn’t process it though. I must have told him multiple times, “This is not funny. This can’t be true. This cannot be the ‘what else.’”

The New Us

“What else” turned out to be high-risk B-cell acute lymphoblastic leukemia. Leukemia is a cancer of the blood that starts in the bone marrow. The leukemia cells invade the blood quickly (acute) and if not treated, they could be fatal within a few months. These leukemia cells were overcrowding Foster’s blood system and his blood just couldn’t function or develop properly.

When Foster was admitted that night, his immune system was non-existent. His little body had no defense. That leg pain? An infection in the joints of his foot. Those bruises? Low platelets. The fatigue? Low hemoglobin. All of those flus and sinus infections? Illnesses that he couldn’t fight off adequately. My little one was going through so much and we had no clue.

Within a week, Foster had three surgeries, MRIs, ultrasounds, ECHO and EKG exams, two blood transfusions, IV antibiotics, a bone marrow aspirate and his first IV chemotherapy. His leg, or actually, his foot was getting worse. The antibiotics weren’t helping and they needed to flush out the joint to remove as much infection as possible, before it moved into the bone and into his whole system.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

It seemed ridiculous to me, that we were going to start treatment when he was still fighting the infection in his foot, but now I get it. Now I realize that every day that we didn’t start killing off the leukemia cells was another day that Foster might not respond to treatment. The infection in his foot was now physically visible. It was red, swollen and hot, it was real. The leukemia we couldn’t see, but it was worse. Time was of the essence.

February 1, 2016, the first day of treatment – the first day of what will be over three years of treatment. In walk two nurses, although they looked more like blue aliens. They were wearing what looked like blue hazmat suits – gowns, masks, eye protection, gloves. One carried a small plastic pouch. The pouch looked innocent enough, like antibiotics or something, but it contained volatile poison. They checked and double checked the ID bands. They hooked up this “medicine” to Foster and it broke my heart. Our 30-pound little boy was getting chemotherapy. This doesn’t happen to little kids. This is now our new normal.

It was possible we were too late, that Foster just wouldn’t be able to fight this off. The guilt is still with us to this day. How did we miss the signs? Why didn’t we do more?

The Frontline

Our new normal included hospital admissions, febrile neutropenia (fever and low immune system), lumbar punctures, chemotherapy port placement, tests, scans, blood transfusions, antibiotics, steroids, IV chemotherapy, intrathecal chemotherapy, oral chemotherapy, bone marrow aspirates, physical therapy, occupational therapy, neuropsychological evaluations….

Our new normal meant being isolated most of the time. Isolation in the hospital and isolation at home. There was no school, no play dates, no events, no parties, no playgrounds for Foster. There were lots of disappointments, cancellations, fear, loneliness for Kaidence. We couldn’t plan anything because we never knew when we would end up in the hospital with a fever or infection. We couldn’t run errands or have friends over because the risk of infection was too great when Foster was neutropenic (extremely low immune system).

We now have anti-bacterial gel in every room of our home. A suitcase pre-packed and ready to go at a moment’s notice for admissions to the hospital. The first sign of a cough or runny nose and that person is isolated in a room until there are no more symptoms. Our family is strong, but more often than not, we weren’t able to be all together at the same time. One parent was always at the hospital with Foster and the other at home with Kaidence.

The frontline is intense. For us, it lasted about ten months. Every day felt like we were walking in a field of land mines and we were doing our best avoid them. In those ten months, Foster had multiple infections, which required IV antibiotics and hospital admissions. Each one just as scary as the next. The possibility of having to delay chemotherapy was real, as was the possibility that he may never recover from the infection. If the leukemia itself didn’t take Foster, the infection could. Every day felt like we were walking in a field of land mines and we were doing our best avoid them.

The Future

We made it though. Foster is now in maintenance, which consists of 12 cycles (each about three months long). We reached the maintenance milestone on November 10^th, 2016. For the first four cycles of maintenance Foster takes oral chemotherapy every day, a steroid pulse for one week each month, intrathecal chemotherapy via lumbar punctures once every two months, IV chemotherapy once a month and IV antibiotics once a month. We reach cycle five this October, where everything is the same except he has intrathecal therapy by lumbar puncture only once each cycle.

Foster was able to return to school during maintenance. Now we’re able to venture outside the house without worrying so much about the land mines. They are still there, but not as many. But Foster has still missed more than 50 per cent of school days due to hospital appointments, illness and infections. Now, the hospital visits are less about the chemotherapy and more about the effects of chemotherapy on his body and mind.

The future is scary. The survival rates and relapse rates for his type of leukemia are scary. The late effects of chemotherapy are scary. Everything is now scary to us, be it a bruise, a low fever, a runny nose, a bump, a rash, a cough. Anything can send us into panic mode.

But the future is also brilliant. We have two wonderful, amazing little kids who you can’t but smile and be happy around. Their inner happiness and brightness just radiates and it is contagious. I can handle that kind of contagion. Every day is a day we are grateful for having our children with us. I know the future holds great things for both of them. They are going to do great things. They are the future.

Thank you

Brian and I, our family and our friends had no previous experience with childhood cancer. It was like we were suddenly on a lifeboat, drifting in the ocean, trying to find a place to land. We were isolated. When you have two very social and extroverted children, this is heartbreaking.

Even in Foster’s current phase of treatment, maintenance, there are still many birthday parties, play dates, school days, events that have vanished. But that is where Kids Cancer Care comes in. Both Foster and Kaidence went to Camp Kindle this year for the first time. Seeing and hearing them connect with other children and siblings is something I will never forget – and neither will they. Kaidence cried on the bus ride home from Camp Kindle because she didn’t want to leave!

As you can imagine, I have struggled with anxiety since diagnosis. Both Foster and Kaidence have been next to me, or next to someone I absolutely trust, every second of every day. There is no way I would even consider sending Foster or Kaidence to any other camp. Camp Kindle is our family’s island where we dock. Knowing that both kids were in amazing hands at Camp Kindle helped me to let go. Just a little. Well, maybe just a millimeter. And that is thanks to the many generous people who support Kids Cancer Care.

No one wants to be a member of the kids’ cancer club, but I have to say the members are the most wonderful, caring, generous, heartfelt people I have ever met. From the cyclists in Tour for Kids, to the staff and volunteers, to the families, the businesses and donors, you are beautiful. Without you, we would still feel isolated. But because of you, we feel and experience understanding and inclusion. From isolation to embracement, all because of you. Thank you.

~ Candace, Foster’s mom

Foster’s photo gallery

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

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

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

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

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

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

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

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

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

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

That was round one.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~ Kate

Kate’s photo gallery

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’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

It all started with extreme pain in my back and knees. What I thought was just an injury from playing volleyball turned out to be a tumour in my abdomen. The tumour was massive. It was 20 by 10 cm—about the size of a cantaloupe. I was 15 and had to quickly come to terms with the fact that, not only was I dealing with cancer; I was carrying around a 15-pound tumour in my abdomen that I hadn’t even noticed growing.

They called it neuroblastoma, a type of cancer that forms in nerve tissue. In the beginning, I had no clue what neuroblastoma is but, over the past three years, I’ve learned all about that and more.

My doctors at the Alberta Children’s Hospital had to come up with a plan of attack and that meant I had to go through four rounds of chemotherapy. But after four rounds of chemo, the tumour still wasn’t shrinking. That was bad news.

Fortunately, surgery was still an option. But the tumour was wrapped around my aorta, so that was extremely bad news.

But my surgeons fought for me and they didn’t give up. They put their heads together and decided they would try surgery in the hopes of getting as much of the tumour as possible—even if that meant removing only a portion of it.

I honestly can’t imagine how they felt going into surgery that day. I mean, I was gonna’ sleep through the whole thing. They had the hard part.

Well, if you can believe it, after 14 hours, my amazing surgery team was able to get the whole thing!! Imagine the skills and patience it took to do that. No one could believe they got the entire tumour. It was incredible news and a TOTAL game-changer!

Before surgery, I had asked them to take pictures of my tumour for me. And they did! Not like a selfie or anything. I can assure you it was all very professional.

Following surgery, I had to spend five days in ICU. Believe it or not, one of the hardest parts of my entire treatment was lying in bed with a breathing tube down my throat and not being able to talk for FOUR days! It was agony. It was the quietest I have ever been!

Even though, today, my cancer is gone and I am cured, I made friends who didn’t survive. And, that is why supporting pediatric cancer research through organizations like Kids Cancer Care is so important. It’s about saving EVERY kid. And making sure they survive with fewer side-effects from the very treatments that saved them.

So I survived cancer and people call me brave. I guess so. But imagine how daunting it must have been for my surgeons to go into that operating room. Imagine the skill it took to take out the entire tumour and not damage my aorta.

Imagine the pressure.

And the surgery is successful! But their job’s not done. Now, they have to ask me if they can have my tumour for research—to help other kids.

They did ask me. And I have to be honest. I hesitated, just for a moment, only because I kinda’ wanted to keep it myself. Like maybe get a shadow box for it and keep it in my room. That might have been cool. But then I realized my tumour would do more good in the hands of world-class researchers, so of course, I said they could have it.

I was given the opportunity to visit my surgeon Dr. Paul Beaudry in his research lab. He is studying my tumour to invent new treatments that will help kids like me in the future.

Dr. Beaudry is what they call a clinician-researcher and is part of the Experimental and Applied Therapeutics research initiative, which Kids Cancer Care helps fund, at the Alberta Children’s Hospital Research Institute and the University of Calgary.

What’s cool is that what he learns from my tumour can be applied by cancer researchers, not just here in Calgary, but all over the world.

So basically my tumour is famous!

In all seriousness, these amazing people helped me. They accomplished the near impossible and they gave me my life back. I am alive today because of medical research and modern health care.

Since surgery, I have been recovering and getting back to doing the things I love to do. I’ve have had to alter my life in more ways than one since my diagnosis. I stopped playing volleyball, which I never thought I would have to do, but that missing piece from my life has now been replaced with things like going to Camp Kindle!

I was told all about camp while going through treatment. Every time I went to the hospital, my nurses would tell me: “You have to try it! At least go for one weekend and give it a go.” I was very hesitant to go though because I would know no one.

I finally decided I would go to Teen Camp and try it out. My mom signed me up and next thing I knew I was on a school bus heading out to Camp Kindle. Everyone had friends; they were all really close and I didn’t know anyone. Not knowing anyone at camp is like walking into school as the new kid. But soon enough I was a part of everything going on. They made me feel as if I had been going to camp for a long time! It’s hard to express exactly how they made me feel included or what they did to make me feel welcome, but they just did. Everyone is so kind and cares about each other. There wasn’t just one thing they did to make me feel a part of camp; it was the many little things they did throughout the weekend, like hanging out with me, sharing stories, laughing, showing me around and sharing camp traditions with me. By the end of that weekend I didn’t even want to go home!

Since that first weekend of camp I have continued to go! I have met so many amazing people who I have stayed connected with outside of camp too. These people mean so much to me, because we can connect in a way that I am not able to with other friends. We have all been through similar situations and we have all changed because of it. I can tell my friends from camp anything and I know that, no matter what, they won’t judge me. Even if I do something really funny and embarrass myself, because I’m good at that, I know they are there for me. They all have such big hearts, great personalities. They are hilarious and that is only the beginning of the long list of things they are. I can’t imagine my life without them anymore because they mean so much to me.

I am so thankful for the opportunity to go to camp because it is a place where cancer doesn’t define me. I can just go and be with people who are now my best friends. Camp Kindle is a place where you can feel comfortable and you are able to forget about what is going on and just have fun! It doesn’t matter what stage of your cancer journey you’re in, you are always welcome and accepted no matter what! It doesn’t matter if your family can’t afford it because you don’t have to pay for it, which is all thanks to people in the community who donate or raise money, so kids like me can go to camp.

Camp also opens up so many doors for everyone and it has opened many doors for me. For instance, the Teen Leadership Program, where we volunteer at many events such as Kids Cancer Care’s Dad and Daughter Gala and Parents’ Quest for a Cure gala. I’ve been involved in Teen Leadership for the two years. We get to work on our fundraising skills and raise funds to travel over spring break to help impoverished communities in developing nations. I have been incredibly lucky to have gone to El Salvador on spring break of 2015 and the Dominican Republic this past spring break. These trips are so eye-opening and have made me grow so much. They are such an amazing experience and I am beyond lucky to have been able to participate on them.

It’s not only through research and camp that Kids Cancer Care helps families like mine.

1. For starters,PEER This is an exercise and physiotherapy program for childhood cancer patients that helps us regain our strength and get back to doing the things we love.

2. Through their Cooking and Caring program, Kids Cancer Care also delivered home-cooked meals to our family, so my mom didn’t have to worry about cooking for a while. Imagine a freezer full of food. That was us.

3. And I was fortunate enough to receive a scholarship from Kids Cancer Care in June 2016, so I can further my education and achieve my goal of becoming a psychologist. I started university this fall.

Being part of Kids Cancer Care and everyone involved is truly an amazing community to be part of. They all support you and make sure you are doing well in a hard time—and even AFTER the hard time.

We should all be grateful to be a part of a community that gives us a sense of warmth. It makes everyone’s journey so much easier to deal with and no one is ever alone.

Kids Cancer Care is a big family and we all have one common end goal—to make sure everyone has a sense of belonging when going through cancer. I don’t know what I would do without Kids Cancer Care because they have done so much for my family and opened so many doors for me.

When I was sick, there were fundraisers held in my honour, but that’s because people knew me and knew about my cancer journey. They were my friends and family.

The fact that people in the community choose to help kids like me, doctors and researchers by supporting Kids Cancer Care—so many people you don’t even know—means so much to me. It’s truly amazing. I can’t thank you enough.

Thank you!

Maddie

View Maddie’s digital story here

Maddie’s photo gallery

Jack was a normal 10-year-old boy. He enjoyed playing hockey, downhill skiing, riding his scooter, swimming, camping, hiking and playing with his friends. In the summer of 2014, we realized a long-time dream and relocated our family to Canmore, Alberta. It was a bit of an adjustment for our sweet Jack, but over time, we thought he was settling in fine.
In the spring of 2015, Jack started to seem different. He was experiencing unexplained pains and was very sad and tired. We organized an appointment for him with Alberta Mental Health, but couldn’t get in until early August. He finished his school year and in an effort to boost his mood, we kicked off the summer with a celebratory mountain bike ride on one of our local trails. This ride was followed by trail-hikes with friends and more mountain-biking as we headed into the holidays. Jack finished each outing but seemed more tired as the days progressed and each activity became more of a challenge for him to complete.

Shortly after Jack’s 11^th birthday in July 2015, we ventured off on our annual summer camping trip, which included travel down to Montana and Idaho. Soon after we left Canada, Jack developed massive pain in his back. We debated turning around and going home, but felt the pains were related to his mental health. We tried to manage the pain and kept encouraging him to be active in an effort to help manage his mood. He persevered but we knew he was struggling.

After two weeks away, we arrived back in Canmore to find that Jack’s back pain was not going away. We arranged a doctor’s appointment for the next day. The doctor checked Jack over and then sent him for a back X-ray and bloodwork at the Canmore Hospital. Meanwhile, we waited for the results but suspected the pain was more related to his mental health. That evening Jack said to us, “I hope they find out what it is, but at the same time, I hope they don’t because I think it might be something serious.”

The next day, the phone rang and our lives were changed forever.

Jack’s X-ray showed a collapsed vertebrae and the results of his bloodwork were also concerning. The doctor had already contacted the Alberta Children’s Hospital as he suspected it might be leukemia and we were told to take Jack there right away. It was so difficult pretending that things were fine so as not to alarm Jack, while at same time, feeling like your whole world was falling apart.

Jack was admitted into emergency at the ACH and eventually we met with the hospital’s oncology team. They told us that based on his symptoms they suspected Jack was battling leukemia, but they wouldn’t know definitively until they had the results from a bone marrow test scheduled for the following day. Jack was terrified of cancer and had fainted earlier that year at school at the Terry Fox Day presentation. We knew we had to be cautious with how much information we shared with Jack and how we shared it with him.

It was a terrible 24 hours before the bone marrow biopsy. I stayed with Jack in his room and Mark was able to get a bed at the hospital since the Ronald Macdonald House was full. Our friends graciously brought us food and arranged care for our dog back at our home in Canmore. We tried to keep a positive outlook, but Jack was scared and tired and it was so very difficult not knowing what was to come. They prepared Jack for the biopsy and he was terrified. It is so hard to see your child wheeled away from you, and as special as our health care workers are, they were still strangers to him. The oncologist came to see us during the biopsy and explained that it was challenging to get a bone marrow sample, so they were pretty sure that it was leukemia. Eventually they were able to confirm that evening that our precious boy was in fact battling acute lymphoblastic leukemia.

We were all in a daze and Jack was definitely upset. The days following were filled with questions, surgeries and the start of chemotherapy treatment. Jack didn’t want to hear anything about what was going on with him and we watched as he began to sink into depression. The nurses, doctors and other health care professionals were amazing and they tried hard to lift his spirits but nothing seemed to work. He struggled to move as the collapsed vertebrae caused him so much pain. We were terrified to bring him home, as we didn’t know how we were going to move him through our stair-filled house. We were terrified as we learned this new cancer language and tried to figure out our new normal. We were all so scared and didn’t know how we would get through all of this.

But we did get through. And Jack’s spirits rose when he finally was able to come home.

It’s been a year of ups and downs though. As the initial shock of the diagnosis wore off, there were many days filled with anger, sadness and loneliness. We felt like we were either at the hospital, on the road driving to or from Calgary, or at the gas station filling the car up. It was not the life we envisioned for our 11-year-old boy. He desperately missed going to school, going to a movie or playing with friends. He wanted to play hockey and go swimming. All of this now had to be put on hold.

We tried our best to keep things as normal as we could for Jack. His school enrolled him in online classes, so we started teaching him at home. We took him to hockey practice and his dad held on to him, while he finally gained the strength to skate on his own again. And we took him skiing. We pointed out all of the adaptive skiers on the hill and we told him, “Look at those people with no legs and arms. It’s not stopping them. Cancer doesn’t have to stop you.” And it didn’t stop him. He skied 35 days over the winter, even though at times, he was receiving chemotherapy four days a week! It was the perfect place to be because we could manage his contact with other people —a big concern when your immune system is compromised by chemotherapy. He loved the freedom of being on the mountain and racing down the hill. Skiing was our lifeline.

Our other lifelines were the activities Jack was able to do and the celebrities he was able to meet because of organizations like Kids Cancer Care. Just when we were finding that his mood was low, an activity seemed to present itself, which would completely boost his spirits. The biggest night of his life happened on October 30^th, 2015. It was the only day that Jack’s beloved Montreal Canadiens would be playing in Calgary for the season. We contacted Kids Cancer Care, and through their contacts, they were able to facilitate a meeting with Jack’s favourite players from the team. As we were leaving the Saddledome after the game, Jack said, “I’m kind of glad I got leukemia, because if I hadn’t, I would never have met the Canadiens!”

It’s truly amazing and inspiring to see and meet so many wonderful people dedicated to providing these wonderful opportunities to children like Jack. We have gone to a night at the theatre, ridden the Polar Express, learned to snowboard and cheered on our local hockey and football teams.

And then there is Camp Kindle. Amazing Camp Kindle. Jack’s first camp experience was this past summer, about a year after his initial diagnosis. It was his first sleepover camp and it was nothing short of amazing. After we picked him up, we heard stories continuously for two hours and I don’t think the smile has gone away from his face since! It’s a magical place where childhood cancer warriors can go and be kids and their parents can rest easy, knowing their precious children are safe.

To date, Jack has had over 80 chemotherapy injections and has taken well in excess of 300 pills. Jack’s cancer treatment will be complete in December 2018. It is a long time to be on treatment. He can’t swim in the ocean or lakes and we always have to be aware of his environment. We’re also unsure of what the long-term effects will be on him — how the medications will impact his physical and intellectual growth and his interactions with others. But Jack knows that it’s important to keep fighting and try to raise awareness of childhood cancer. He likes to say, “Cancer. You messed with the wrong guy!” His words are so true. Cancer has not stopped our kid. Cancer has not stopped our hero, Jack.

–Cheryl, Jack’s mother

Jack’s photo gallery

Levi was diagnosed on June 8, 2007 with high-risk acute lymphoblastic leukemia. This was shortly after Levi turned 1 ½ years old, a baby in diapers. It was revealed by a simple blood test. This was the start of a hellish journey through childhood cancer.

Levi was diagnosed on a Friday and by Saturday morning he was going in for surgery to get a central line put in. A central line, or Broviac, was surgically placed in Levi’s artery in his chest and the other end came out of his chest. This allowed the hospital staff to draw blood from Levi and administer chemotherapy without poking him with needles every time.

Levi started the first of 5 phases of chemotherapy that Monday. The nurse came into the room with what looked like a Hazmat suit on. The chemo was so toxic she had to protect herself. I could not believe that this toxic cocktail was going to be put into my baby. I was told that I would need to wear protective gloves when I changed his diapers.

We were in the hospital for most of this phase, which lasted about 1 month. During this time Levi went through so much. He had an ultrasound of his heart, to establish a baseline of his current heart condition, because one of chemo drugs can affect the child’s heart. He had a couple bone marrow aspirations. This procedure involves inserting a needle into Levi’s hipbone at the back to extract bone marrow to test for leukemia cells. He endured many blood tests.

Levi started losing his hair about 2 weeks into treatment, so we decided to shave it off, as it was getting twisted around his fingers at night when he slept. He was crying the whole time we were shaving him and, when it was done, I cried too. Now he was bald and looked like a child with cancer; it was real. To this day, Levi likes to wear his hair long, or maybe it’s me. Long hair is the opposite of cancer.

Over the next 9 months treatment was intense. Levi started to feel the effects of the chemo; he got mouth sores, had trouble sleeping, had trouble peeing and pooping. He developed a fever, a rash, lost his appetite, threw up a lot, and became quite lethargic.

The goal of the first phase of chemo was to get the patient into remission and within the first month Levi was in remission, but treatment was far from over. This was barely the beginning. He still had 3 years to go. They said this long treatment plan has the best outcome. It was the only hope we had. We needed him to survive the treatment that was now killing his cancer.

Very early in treatment we had to call an ambulance because Levi woke up quite despondent. He was a rag doll and we could not get him to respond to us. It turned out it his blood sugar was too low; it was at 1.2, which is very low and not far from being in a coma or going into seizure. His doctors thought this was an effect of one of the chemo drugs and not a normal side effect. From that point on, I had to check his blood sugar morning and night, as well as at 3 am, each time having to do a finger poke on Levi. Thankfully we only had to do this for a couple of months. But it turned out not to be our last ride in an ambulance.

One thing we always had to watch was Levi’s blood counts. In particular, his white blood count. If this number fell too low, it would impede his ability to fight infections.To check this, they had to take blood or what we came to call a ‘pokey poke’ and test it in the lab. If the white count fell below 500, he would be what they called neutropenic and would need to go into protective isolation, which meant we would have to avoid contact with others more than we already were. Sometimes Levi’s red blood cells would be low too and he would need a blood transfusion. I always knew when he needed a blood transfusion, as he looked pale and wanted more Mommy hugs. This is one of the major effects of chemotherapy. While it is killing the cancer cells, it is also killing the immune system and therefore putting Levi’s life in danger. A very delicate balance needed to be maintained to be successful. It is a miracle that it works.

With Levi being immune-comprised all the time, he had to miss out on a lot of fun and all the things that kids should be able to experience. This is the saddest part of all for kids who have to go through cancer treatment. They miss out on so much. Levi missed important developmental milestones and because he was so young when he started treatment, I wouldn’t see the effects of the treatment until he was older and in school. And this is quite common.

My only focus as a parent at the time was to keep Levi alive and protected. The only thing I could control was his environment and to keep him as healthy and happy as I could under the circumstances. To keep him strong and healthy, I wanted to feed him, but the chemo made him throw up and not want to eat. It was a full time job getting breakfast, lunch and supper into him, only to have him throw it up sometimes. With each new phase of treatment, came a set of new chemo drugs. This meant that any strategies we had developed before to manage, may no longer work, so we had to come up with a whole new set of tricks. Most kids need to be put on a feeding tube because they lose too much weight. We were on the verge of that a couple of times, but Levi managed to avoid it.

While on chemo, they tested Levi’s heart, liver, kidneys routinely and if he ever got a fever, it was an immediate trip to the emergency room, where they did not leave us in the waiting room. We were taken into a room immediately and they took blood to test for infection and he was put on IV antibiotics. Kids have died because of blood infections, while being immune-compromised.

Even though we were not in the hospital full time, we had to go 4 or 5 times per week. Once we were in the maintenance phase of treatment, we were down to 2 or 3 times a month. We called these trips to the hospital for treatment clinic days. Sometimes they had some trouble getting blood out of his central line, so they had to ‘TPA’ it, which means they had to put some blood thinner into his line and we had to wait a couple of hours before they were able to get blood out. This happened to Levi with some regularity and added extra time to the treatments. After the blood work, came the chemo, the steroids, the intravenous antibiotics, the anti-nausea medication and, sometimes, other procedures.

One of the scariest procedures Levi had to go through was the lumbar puncture, or better known as a spinal tap. Levi was given ‘sleepy milk’ (anesthetic they gave him in his line) for this procedure. They would then take some fluid out of his spine to test to see if there were cancer cells hiding in there and in its place they would inject intrathecal Methotrexate (a chemo drug) into his spinal fluid. This got harder and harder for both Levi and I. He really fought the ‘sleepy milk’ and I would stay with him until he fell asleep. Every time, I would say a prayer and give the person doing the procedure a squeeze and say, “Have a good procedure.” Spinal taps are routine for leukemia patients, but they are a very serious procedure. He had a spinal tap about 30 times during his treatment. It never became routine for me.

By the time Levi was finished treatment in September 2010, he was 4 years old. He had spent more of his life on chemo, than he had off chemo. Levi was on chemotherapy for over 1,200 days, longer than some marriages! It is amazing these kids survive. I am still in awe of it.

Along with fighting for his life from leukemia, Levi survived H1N1, numerous viruses (RSV, HMV), numerous bouts of croup and loads of colds. He endured a couple of nose aspirations, many trips to the emergency room, blood transfusions, bone marrow aspirations, a couple of surgeries, lumbar punctures and a bronchoscopy. He’s seen pulmonary specialists, respiratory specialists, speech pathologists and sleep specialists. We did not go to malls, supermarkets, public playgrounds, public swimming pools, indoor public events or play dates. We avoided sick people. Levi had to bathe wrapped in Saran wrap and we used hand sanitizers at every turn. He had a helicopter parent. But he survived. It is a miracle.

I have not experienced such despair in my life. I was scared sleepless most of the time. It was Levi’s courage and the kindness of our friends, family, co-workers, Jamie’s Preschool, Kids Cancer Care and the staff at Alberta Children’s Hospital that carried us through. People have been incredibly generous and thoughtful to us. We have made new friends whose strength in their own struggles with cancer gave us courage and optimism to carry on. We have learned to live life one day at a time. I learned to live in the moment and learned that control is an illusion. I learned to celebrate the small victories. I would be lying if I said I am not scared. Life without chemo to keep the ‘bad’ cells away is like being a tight rope walker without a net, but we have faith that all will be as it should be and we pray for the strength to face what we need to going forward.

Childhood cancer is like war. You struggle through it and miraculously you survive. When it’s over you get up, dust yourself off and assess the damage around you. There is often a lot of collateral damage with childhood cancer. Giving chemo to a child as young as Levi can affect their brain development and their emotional well-being.

We’ve had psycho-educational and neuro-psychological testing done on Levi and they revealed deficits in Levi’s executive functioning, the region of the brain that regulates and controls cognitive processes, such as our working memory, reasoning, problem solving, planning and execution. As a result, Levi is struggling with math and spelling at school — not to mention pretty intense anxiety. It seems so unfair for a child to have to go through all of this and then have other problems afterwards.

When Bryan and I first broached the possibility of tutoring with him, Levi flat-out rejected the idea. But when we broached the idea of tutoring through Kids Cancer Care, he said, “That would be okay.” So he is now seeing a tutor Monday evenings through Kids Cancer Care’s new Education Support Program and we’re already seeing big improvements.

Levi feels comfortable challenging himself during his tutoring sessions at Kids Cancer Care because he associates it with Camp Kindle. This is a safe, friendly place for Levi to push himself and learn, without all the stigma of a regular tutoring service for him. I knew we were on the right track right away. After his first tutoring session, on the drive home, Levi turned to me and said, “I think it’s gonna’ be okay now, mom.”

Levi is 10-years-old now and has been going to Kids Cancer Care camps since he was able – around 3 years old. He has always loved SunRise day camp and is an outgoing kid – you may have noticed!

In 2014, Levi decided to give SunMaker camp at Camp Kindle a try. He had not been to overnight camp anywhere and had barely been overnight with anyone. Things started off really well. I didn’t hear anything from Levi for the first 2 days, but when I called Wednesday night, his counsellor said he’d had a rough day and he was experiencing some diarrhea. I was able to talk to Levi and he was distraught and very anxious, so I did go and pick him up Wednesday night.

Once home and having had a good night sleep and no more diarrhea issues, Levi wanted to go back to camp. At this point, we had concluded that this was not a virus, but rather Levi not going to the bathroom for a couple of days and then everything broke “loose” so to speak. They call this “camp belly.”  “OK”, we said, thinking he would be able to make it the last couple of days of camp and not let this negative experience affect him.

Well Thursday night we get a call from Levi saying, “I can’t do it anymore,” and really crying and upset and wanting to come home. This really is not like Levi to be so emotionally distraught. I knew there was a bit more than homesickness going on. He has had some mild anxiety since he was little, mostly things we noticed at home and, of course, having to do blood work and different procedures. But over the past year, he had really started to become super conscious of his body and his health. Unfortunately this bout of diarrhea was so frightening and, not being in the comfort of his home, really affected Levi to the point of not wanting to go back to camp again.

This experience in 2014 seemed to be the catalyst to more serious anxiety. He worried about any different sensations in his body. This carried over into the new school year and we decided he needed some help so we got him started with a psychologist. He has been doing well and has developed more coping skills and is very aware of his situation. In fact, he is hyper aware and this, in part, is what causes his anxiety.The psychologist believes he has PTSD (Post Traumatic Stress Disorder) from all the years of invasive treatment, and so needs to process all of his experiences.

He has been handling things well so we encouraged Levi to give camp another chance in 2015 and he reluctantly agreed. I talked with the camp personnel (Jenna, Mary and Janessa) and told them all that was going on with Levi and I asked them to let him call home if he needed to. I knew this would help him to have some control over his situation. He was having anxiety that he might have the diarrhea again and have the same experience as last year. He was having anxiety that he might have anxiety, if you know what I mean.

So August 10, 2015, Levi went to Camp Kindle. The first night I get a call, he is crying and more homesick than anxious. I walked him through it and said, “Let’s stay overnight and see how you are in the morning.”  Morning came and Levi is in the clinic trying to convince the nurses that he has a cough and a fever and needs to go home. Orli, the nurse, called and said Levi wanted to talk to me. He is trying to convince me he needs to go home. I try different strategies and let him know that, “If you were sick, they would be calling me to come and pick you up and you don’t need to worry about that.”  After a lot of coercing, he agreed to stay and went to the activities.

I talked with Orli again and asked her if I could get Levi some extra support, especially in the evenings. About an hour later I got a call from Lexi, the head counsellor, and Sophie, Levi’s counsellor, asking me what they could do to support Levi. We talked about all the things I thought would help and they were willing to try it all and said they would be in touch. I felt good that they were really on board and working hard to help Levi. This is awesome support.

That night I got a call from Levi, crying hard and begging me to pick him up. He said “Mom please, please come and pick me up, I can’t do it. I’m a wimp.”  I talked him through this and he said, “Mom tomorrow is Wednesday and that is when I had diarrhea last year.” The anticipation of Wednesday coming and the experience from last year put his anxiety into overdrive and I thought, “If we can get him through tomorrow, he would be able to stay the rest of the week.”  I talked with him intensely and I explained that last year he wasn’t paying attention to bathroom routine, but this year he was and that there should be no issues tomorrow. We talked at length. I am thankful there were no time restrictions on the call. He reluctantly said he would stay the night and that we would talk in the morning.

After my conversation with Levi, I was able to talk with Sophie again and she explained everything that had happened that day and pointed out a few opportunities that she gave Levi to decide things for myself, ex., “Do you want to call your Mom now or wait until after lunch?” So Levi chose to call later, small steps but effective. Sophie said she was trying all the ideas we talked about and thought it was helping. Other than the phone call to me, he did seem better than the day before. He’d had a sad period after lunch, but bounced back and got involved with activities whole-heartedly with the support of Sophie. Just so you know, I was completely struggling at this point as well, because I didn’t want to traumatize Levi with this camp experience. But I knew he needed to conquer this huge fear to move on. If I didn’t feel Levi was supported on the other end, I would not have been able to leave him at camp.

So Next morning came, no call; after lunch, no call; Wednesday evening, no call. So of course I am thinking, “Great! This is a good sign, right?” I decided to call Sophie and she said Levi had a great day. In the morning when he woke up he said to her, “I didn’t miss home and I didn’t miss you.” She said it was funny how he said it. He also said, “I think I can make it to the end of the week.” He got involved in all the activities that day and loved archery and was really getting into the day. Later that evening Levi did call home. This is part of that conversation:

Levi: “Hi Mom, I had a great day today!”

Me: “Wow that’s AWESOME Levi.”

Levi: “I didn’t cry today and I didn’t have diarrhea.”

Me: “Good for you hon, we are so proud of you for hanging in there. I knew you could do it.”

Levi: “Guess what, I did the flying squirrel today and tomorrow I am going to do the wall climb and when you get to the top, you jump off….”

(YIKES, OK Levi. Mommy just wants to know if you are having fun, not all the details ha ha.)

There must have been about 5 more “Mom and guess what…”  I could hear joy and confidence in his voice. He was proud of himself!! He had FUN and was finally enjoying himself. What a huge relief I felt for him and for us. It was so important that he make this turn and get this huge psychological demon off his back.This is big. This is a game changer for Levi. He has gained so much in this week that will give him the confidence he needs to know that he can manage his anxiety and that he can be safe in the world.

We would not have been able to make this breakthrough without the support of your staff and volunteers at Camp Kindle and, of course, the staff in the office, who we regularly talk to. I want them to know they are changing lives at Camp Kindle. Kids can develop and grow with their encouragement, commitment and support.There are small wins and big wins that will help change the trajectory of a child’s life forever. I believe this for Levi.

Thank you for this experience. We are so grateful and “Guess what?” Levi says “I want to go to camp next year!” That is a miracle!

–Cheryl Hamm, Levi’s mom

On this first day of school, my niece’s 15^th birthday, a week from the 2-year mark in this dedicated month, I sit here in my office, tears streaming down my face, just wanting my girl back.We were a happy family that loved being together, laughing, dancing, travelling, living life to the fullest and then our 11-year-old daughter Edyn was diagnosed with a GBM, a glioblastoma multiforme. This is an incurable brain tumour typically found in adults, extremely uncommon in children and in that instant our lives changed forever. How do we take that step out of the consultation room toward Edyn and her younger brother Simon? How, and what, do we tell them? At that moment Michael and I made a pact that this wasn’t going to tear us apart, that the four of us were and always will be a team. The next step was the first step of the rest of our lives.

Initially, we told Edyn and Simon that there was a mass in her brain that was causing the pain and double vision she had been experiencing over the past 3 weeks. Edyn would have to have surgery to remove the majority of the tumour to release the pressure. That was all we knew at that point, so we said no more. We didn’t know what type of tumour it was; we didn’t have any other facts to share other than that this was the start of Edyn’s journey. At that time, Edyn didn’t ask for more information, she just wanted to take steps toward to feeling better.

Thirty-six hours later, Edyn was prepped and transported for surgery. Outside the operating theatre, the surgical team reviewed their surgical prep list. Once the team was satisfied with the preparations, the head neurosurgeon asked Edyn if she had any questions. To the team’s surprise Edyn replied, “Let’s just do this.” She gave Michael and I a kiss, we shared our love and off she went. It was the longest 9 hours of our lives. Once in the recovery room, the head paediatrician in the PICU checked on Edyn as she was waking up from the anaesthetic. The doctor knew everything had gone well when she asked Edyn how she was doing. Edyn answered with an abrupt, “I feel like s*@#!”

The next stage of the journey was about to start. Life in intensive care with your child is a moment-to-moment experience. “With big problems come big complications,” one nurse told me. Edyn had a bit of a roller coaster ride over the next couple of weeks before her health stabilized and she could come home for a visit. The first visit home was Christmas day. Simon and I went to the hospital first thing that morning with a picnic breakfast and a suitcase full of gifts to celebrate with Edyn and Michael. When we finished our mini-celebration, we bundled Edyn up and took her home for a few hours in between medication doses. It was so great to have her home, all four of us together. We spent the next week making these daily visits until Edyn could be fully discharged on her 12^th birthday. Oh did we celebrate that day!

Next, we focused on Edyn getting back to school. We all agreed that it was the best for her. Edyn wanted to be a regular kid, doing regular things. She didn’t want a pity party or to play “the cancer card.” After a bit of coaching from the oncology social work team; the school and Edyn’s class were as ready for her return as we were. The idea was to try to start the day with everyone else and come home when she had had enough. Even though Edyn began an intensive 6-week radiation and chemotherapy program at the same time, she managed to attend school almost every day until the end of the school year. Once the 6-week treatment program was complete there was a 2-week break before the regular chemo schedule started. We had already booked a trip to Hawaii, which happened to fall within these 2 weeks, so off we went. More than anything Edyn wanted to surf. It was an amazing time together, a holiday we all cherish. Over the next months there were trips to Fernie, Lake O’Hara, New York City, Ontario to visit family, camp for Edyn and cottage time.

We returned to Calgary in mid-August. It was clear at this time that Edyn’s health was in decline. We all wanted to believe it was just another phase in the battle, but within a week we were moved into the Rotary Flames House, which was the beginning of our last month together. The care for our whole family was so amazing that we didn’t have anything to do other than be together. We continued to live life as we knew it as best we could. As Edyn slipped further away the three of us joined forces even stronger. Peacefully, on September 13, in my arms, the four of us said goodbye to our life as we knew it.

Edyn was wise beyond her years. There was a calm about her, sometimes so calm that it seemed like nothing was urgent. Edyn taught us to live in the moment, to be present. Even throughout her cancer journey Edyn accepted all that had to be done to help her: the surgery, the countless pokes (needles), the specialized medical teams that would take up the mornings examining her, living in-hospital for a month, radiation, chemotherapy and so much more.

Although I am convinced Edyn knew more than anyone what was happening to her, she didn’t feel sorry for herself. She never gave up and never felt like a victim. At a family dinner one night she quietly told her Nana that she accepted her fate.

Every day with Edyn was filled with joy and laughter. Our house was a happy place filled with joy, whether it was making her brother laugh; dancing around the house; posting goofy videos or simply loving life. Edyn recognized the good in everyone she met and stood up for those who needed help. Edyn knew how to treat people kindly and she had incredible empathy. There was a lightness to life with Edyn. I’ve never met anyone who was so comfortable in her own skin, so real. In her much too short life, Edyn touched so many people so deeply.

Most of our network lives far away so we do things that everyone can participate in on social media or with themselves at home. One of the first events in Edyn’s name was the Shave Your Lid for a Kid^® at Bishop Pinkham School. It was one of the biggest shave events in Kids Cancer Care history. We participate in an annual fundraising walk for the camp Edyn went to for kids with cancer; we plan silly activities to honour Edyn’s birthday; we have planted numerous trees in her honour; we light a candle and look to the stars on September 13. We continue to support the research fund we have in Edyn’s name at ACH throughout the year to recognize special occasions. Most importantly, we have infused #wwed (what would Edyn do) into our daily lives. In difficult moments #wwed helps us focus on the positive and brings us back to the present.

So here we are 2 years after Edyn’s death and we manage to keep moving forward. We are managing our life filled with grief and sadness. We do find the joy and laughter more and more. Our life will never be the same but we are eternally grateful and feel privileged for having had Edyn in our lives. Her energy is all around, her presence almost tangible at times. It’s healing. The memories become more valuable than ever. I cherish the visits from butterflies and the sightings of rainbows and the stream of green traffic lights when we have to get to soccer practice. When I’m sitting on the dock, watching the loon family, feeling the warmth of the late summer sun on my face, squinting from the reflections on the water, I know Edyn is holding my hand. In these things I find peace. In our love for one another we three find peace.

–Kristyn, Edyn’s Mom

Edyn’s photo gallery