Eddie’s journey

Susanne and Peter Glanville noticed that their two-year-old son regressed to crawling suddenly. They knew something wasn’t right. With his recent temper tantrums and fussy eating, they thought he was just going through his terrible twos. But when Eddie started vomiting in the mornings, their doctor became concerned.

On Jan 11, 2018, Eddie was taken to an emergency at the Alberta Children’s Hospital and went for a CT scan. The scan gave the parents an absolute shock when it revealed that Eddie had a brain tumour. As Susanne and Peter scrambled to absorb the news, their baby boy went in for emergency brain surgery. The parents at that time relied on faith, family members, and staff at the Children’s Hospital.

That surgery would change everything. Post-surgery, Eddie experienced posterior fossa syndrome — a condition that affects balance and coordination and the ability to swallow, speak, and walk. Eddie needed immense care and his parents would take turns living at the hospital. Eddie’s older brother Luke was 6 years old at that time.

There was a lot of stress during the initial days of the diagnosis and surgery. Family was a big support for parents to take care of Luke, while Eddie was away at the hospital. After months of chemotherapy and two stem cell transplants, the cancer was finally eradicated. But they had a long recovery journey ahead of them.  

The Glanville family was introduced to Kids Cancer Care during their time at the hospital. Thanks to generous donors like you, we were able to support them every step of the way: “We were able to connect with volunteers and other families at Pizza Nights in the hospital, and over time, we started taking in more resources. Kids Cancer Care was always front and center — not just in the critical stage but as we came into a better place.”

When they left the hospital, they didn’t know how their lives were going to be. The first 8 months were the most for difficult Eddie and his family. They started with Eddie’s recovery journey. Eddie is an eager, independent, determined, fun child who loves to laugh. Through all this Eddie maintained his childhood ability to keep going. His day-to-day tasks require a lot of support and logistics but he is a determined child with a lot of potential. He is not the one to give up.

Eddy shares a special bond with his older brother Luke. And, for both the brothers, there’s no better place than camp. With the support of generous donors, the camp was able to give the boys a magical camp experience in 2019 and 2022. Now, they’re counting down the days to summer camp again.

“More than anything, they just need to be kids,” says Susanne.

Although Eddie can now swallow food, he still needs to sip his drinks through a Gtube (gastrostomy tube). He’s unable to walk or stand without support and he uses a wheelchair. While his speech is impaired, Eddie’s a great little reader and speller. If people can’t understand him, he spells out the words.

“We’re so grateful to Kids Cancer Care,” says Susanne. “The staff put so much thought and care into setting up the right resources for Eddie at Camp SunRise. It’s not often that someone can be his one-to-one aide all day, but Kids Cancer Care arranged it, so Eddie could experience camp just like the other kids.”

With your support, we are able to make our programs fully inclusive for all children. Knowing their son could experience the joys of childhood after so much pain and suffering was healing for Susanne and Peter.

“Kids Cancer Care recognizes that siblings need support too, says Susanne. “The whole family needs to heal. It’s such a lifelong journey — spiritually, socially, and mentally. When bad things happen, you have to look for the light. Kids Cancer Care is that light. All the support makes the impossible, possible.”

Thank you for making summer camp possible for Eddie and his brother Luke and the hundreds of children in Alberta impacted by cancer.

“Why did you wish for something that you knew would never come true? Isn’t that a waste of a wish?”

“Well,” smiled Arya, “because there’s always a chance.”  

This is the story of strong and resilient Arya who definitely lived up to the strength of her name. Arya means lioness and one could always see the determination in her eyes. She was lion-hearted, five years old, fighting a deadly disease with all her might. In March 2017, Arya was diagnosed with infratentorial anaplastic ependymoma type A – an aggressive brain cancer – shortly after her third birthday. When Arya’s cancer recurred 14 months after her initial diagnosis, it was considered terminal.

We were devastated by the news and wanted to do the best for our daughter in whatever time was left. With Arya’s terminal diagnosis, there were only two things that helped us to sleep at night. Firstly, to make Arya’s short life the best it could possibly be. We wanted her life to be full of adventure, love, excitement, friends, and inspiration. We tried to do as many things as possible on Arya’s bucket list, and we began prioritizing family time and adventures over careers and college savings. Secondly, to try novel treatments (many in the form of clinical trials) to maintain Arya’s quality of life for as long as possible and hopefully contribute to finding quality treatments for others who will walk the same path as Arya. I spent many late nights reading the latest academic research papers on cancer immunotherapy and brain tumors and trying to qualify Arya for clinical trials that might offer her a bit of stability.  

What does it mean to have a good life? For Arya, it meant having a chance to try new things. She was always excited at the prospect of any new adventure and the first to yell “yeah!” when we proposed an outing. We worked around her treatment schedule to plan as many fun adventures as we could. In 2019, Arya’s goal was to spend 50 nights in a tent! If you would like to read about her adventures, check out her blog here.

When a child is diagnosed with cancer, it affects the entire family, and our family was no different. Aeo and Zephyr, Arya’s older twin brothers, were often without a mom, as I spent most days with Arya at her appointments. And there were several occasions when we traveled for clinical trials and had to leave Aeo and Zephyr behind with relatives. They grew up early and started handling responsibilities without any guidance. They learned to get themselves ready for school and walk to school on their own whenever Arya and I weren’t home. I often struggle with how much of their lives I missed out on in the three and a half years that Arya battled cancer. The sibling experience is just as important to acknowledge and I’m so grateful to see how Aeo and Zephyr are now becoming more helpful, knowledgeable, kind, and capable young men every year.

During this tough phase, there were many communities and organizations that helped and supported us. One of them is the Kids Cancer Care Foundation of Alberta. Arya was one of the first kids to take advantage of the newly expanded PEER exercise program. Working one-to-one with the Ph.D. PEER exercise specialist, Arya engaged regularly in yoga, sports, exercise games, and gymnastics. The increased physical activity helped Arya counter radiation’s side effects by rebuilding her gross motor skills; building bone density to reduce her chances of bone degeneration; and restoring brain neuroplasticity to prevent cognitive delays. Arya regained most of her gross motor skills, balance, and coordination. She was almost back in the normal range and loved PEER.

On June 20th, 2018, we were looking forward to celebrating one-year cancer-free with Arya.  Unfortunately, we didn’t receive the happy news we were hoping for. Arya’s one-year MRI scan revealed a mass on her spine at T11, that was indicative of metastatic disease. Regardless of this upsetting news, we chose to continue with our family holiday that had been planned, and we were determined to make sure that the kids had a fun summer.

2020 was especially challenging for Arya. She dealt with a huge number of health issues, a very intensive period of treatment, and more emotional struggles than in the past. We were very concerned that this quick decline meant that we might be nearing the end, but just as the rest of Arya’s stories have had its ups and downs, Arya surprised us with a dramatic improvement overall.

Swallowing — the most concerning factor during her treatment — took center stage during recovery. We worked with an SLP (speech/language pathologist) to try some strategies to help Arya to get down small amounts of food safely and to help her breathe at night. After a week of no improvement, discussions around feeding tubes started, as Arya was weak and had dropped a lot of weight. Then, 10 days after surgery, Arya suddenly ate a bowl of oatmeal without coughing, and we were optimistic that recovery was on its way!

On July 20th, Arya finished her 5th course of radiation! She had now undergone radiation treatment at the ages of 3, 4, and 5, and now, another course at age 6. The next day, July 21st, Arya finished her 7-day course of trial chemotherapy. She was now off all the meds she’d used so frequently in the previous 4 weeks. She had completed an intense period of daily treatments, dealt with severe nerve pain and drug side effects, and attended a ridiculous number of follow-up appointments (vision, hearing, PT/OT, check-ups, etc.). She earned herself many new Beads of Courage in the last two months, including 40 new beads in the last 28 days. Kids Cancer Care funds the Beads of Courage program, which helps children understand their cancer experience. Each colourful bead represents a medical treatment or milestone along the way, offering kids a tangible marker of the treatments they have endured.

In 2019, Arya, and her three brothers (and mama, papa) attended Camp Kindle’s Spring Family Camp. Camp Kindle is run by Kids Cancer Care and is offered to families impacted by cancer. They also offer summer camps for young children with a parent battling cancer, as well as for bereaved siblings. This is a fantastic organization that has supported us greatly. Arya had an amazing time during her weekend at the camp, she tried archery, and went on a little hike to a challenge course with us! Her brothers had a lot of fun experience too and we’re very grateful to the staff and volunteers for it!

Over the course of Arya’s journey, she participated in 4 (almost 5) clinical trials, as well as 3 investigational treatments off-trial. Arya previously had 2 tumour samples banked for research. We also donated her tumour and brain after her death to help advance knowledge and research into brain cancer. We hope that her journey will contribute greatly to what is known about pediatric cancer and immunotherapy, and we hope that these contributions eventually save other families from a similar tragedy.

For the most part, her quality of life was great, right up to her last 36 hours. She was still attending school the week before Thanksgiving, playing with friends, and hanging out on the playground. She even went out to McDonalds to have her favourite Chicken Nuggets for dinner on her last day. She came home to a slice of pumpkin pie, and asked for seconds of ice cream! She was braver than any 6-year-old should ever have to be. She smiled in the face of adversity, right up to her last day.  

Arya passed away peacefully the next morning at home in her parents’ arms, just steps from where she was born. She was just 8 weeks away from her 7^th birthday. She always had a big smile and was known for wanting to do everything again!

On the weekend of Bereaved Mother’s Day, our family was also treated to a special retreat at Camp Kindle. Kids Cancer Care offers a Spring Family Camp weekend, and a Bereaved Family Camp weekend. Though it felt uncomfortable arriving there without Arya, it was a weekend of family time and Arya was well included in our time there. We created a family rock portrait and painted and hid some rocks outside for Arya. We all enjoyed some archery, rock climbing, ropes course fun, hiking, camp games, and crafts. And in typical Alberta fashion, we had all four seasons and every type of weather during our 48 hours there!

Arya departed this world on October 15^th, 2020. Her absence has left a void in our family that is beyond our ability to comprehend. Yet, her life has taught us so much, and we are incredibly grateful for the gift she has given us. In Arya’s passing, I have found that living a quality life and improving treatment options still drives me forward each day. 

— Petra McDougall, Arya’s mother

P.S. Wasting Wishes is an illustrated children’s book, co-authored by sweet Arya! The story is a true conversation between Arya and her mother Petra. Fantasy, reality, and hope weave together a heart-warming story in this true account of a day in the life of a 5-year-old child living with a terminal disease. Purchase the book here. Proceeds from the book will be donated to Kids Cancer Care.

July 11-13, 2025 – Registration opens January 15
Water Valley, Alberta

Join us for the premier all-inclusive cycling event of the summer with 3 cycling options to choose from: 3-day Group Ride, single day Sunday Ride or virtual Flex Ride. No matter how you choose to participate, every dollar you raise will go directly to sending kids to camp!

Raise a minimum of $1500 and send a kid to Camp Kindle!

SEE CYCLING OPTIONS AND REGISTER NOW

Check out Ride of Courage 2024 photos below!

2

3000

Thank you to our cycle challenge sponsors

We are the Haggas family. 

Parents: Mark and Sue, children: eight-year-old Meghan and eleven-year-old big brother Ryan. Pets: Edalynn the Beta Fish, Toothless the Leopard Gecko, and beloved family dog Nurse Treasure. This is our story of childhood cancer during the COVID-19 pandemic.

On February 11, 2020, our lives changed the day our five-year-old daughter Meghan was diagnosed with high-risk pre-B acute lymphoblastic leukemia (ALL).

The day after our son Ryan’s birthday in early February, Meghan developed a bad cold. We thought nothing of it until 10 days and a few nosebleeds later, the cold showed no signs of letting up. We took Meghan to a walk-in clinic, thinking it was tonsillitis. The doctor put her on some antibiotics, but she wasn’t getting any better. 

The morning of February 11, 2020, I was at home running my daycare business, with Meghan keeping me company. She was sad to have missed out on her kindergarten field trip to the Red Deer Hospital that day due to her cold. My husband had just dropped Ryan off at school. No sooner had he done that than I was calling to ask him to come home as Meghan was having another nosebleed. On the advice of HealthLink, my husband took Meghan to the emergency centre at the Red Deer Hospital. I contacted my day home family to inform them I was closing for the day and drove to the Red Deer Hospital to meet up with Mark. Meghan was sent for a chest X-ray and blood work. Mark left the hospital to pick up Ryan from school as we figured it would take a while to receive the test results. We would meet them at home probably with a prescription of antibiotics for Meghan.

I was alone in the hospital room of the ER ward with Meghan when the doctor came in. Closing the door behind him, he sat down across from us. He said the chest X-ray results were clear, but the blood work was abnormal. Then he immediately told me it was cancer, blood cancer, leukemia. The doctor calmly went on to say the oncology team in Calgary at the Alberta Children’s Hospital would further determine the details of the diagnosis, but there was no doubt, with the levels in her blood, that this was leukemia. I then heard the phrases…”life-threatening…blood transfusion to begin immediately along with cancer treatment.” The doctor told me I had time to call my husband to ask him to drop off an overnight bag for us. They had already arranged to have an ambulance take us to Calgary. The doctor opened the hospital room door and left.

I gave Meghan (or Muffin as we call her) a kiss on her head and told her I had to go into the hallway for a minute. I slowly closed the door, watching her scribble in a coloring book I’d packed that morning when she’d left with Mark for the hospital. The minute-to-minute business of the ER continued rushing around me as I collapsed to my knees, going over in my head what I was about to tell my husband.

When I called him, Mark was in the hallway of our children’s elementary school, chatting and laughing with the school’s admin, picking up Ryan after a fun full day of grade three. I then called my parents in Newfoundland who immediately booked a cross-Canada flight to be with us. I then went back to Meghan’s hospital room and sat with her.

What is anyone thinking at a moment like this? What goes through your mind when you think of a childhood cancer diagnosis? Do you think of years of watching your child suffer through painful procedures and possible gut-wrenching outcomes? Do you think of your support systems? Do you think of your other children and how it may affect them to see a sibling go through treatment? Do you wonder who will take care of them if you are at the hospital?

The oncology team at the Alberta Children’s Hospital gave us the heartbreaking news of Meghan’s diagnosis and a glimpse of the long road ahead. It would include two and half years of treatment for her high-risk leukemia.

Our first 10 days in the oncology unit were emotionally difficult. The pediatric oncology social worker made a referral for a room at the Calgary Ronald McDonald House (RMH). She also gave us information about Kids Cancer Care and Fostership.

My husband and I took turns walking across the sidewalk to RMH for naps or a warm meal in the middle of the night, while the other parent slept beside Meghan in her hospital bed, holding her hand. My sister came from Yellowknife and stayed at a hotel in Calgary for those first three days. Visiting back and forth with Meghan, bringing her PJs and stuffies, making her laugh, as my sister and I stole glances of disbelief at the journey ahead for our family.   

Our son Ryan went home to Red Deer. His grandparents took care of him, while we dealt with Meghan’s first hospital stay, first blood transfusions, first surgery (chest port implantation), and first IV and oral chemotherapies. 

Five-year-old Meghan was scared. 

For Meghan, the fear of never getting out of the hospital and never getting better was very real. She went from being a little five-year-old, enjoying her first few months of kindergarten, dancing in ballet concerts, and playing soccer with her buddies to being a pediatric cancer patient.

We learned from the oncology team that after 10 days our family would be discharged until our next visit. Being able to tell Meghan this news was amazing! We were staying at RMH for a few more days before heading home to Red Deer with her numerous daily medications. In those dark moments of fear, describing the RMH craft room, the big cozy beds, and the other children there, gave Meghan light, gave us hope. The playroom at RMH was open. We met other medical families and their littles in the dining room. During that first week at the Alberta Children’s Hospital, we met other families going through the initial diagnosis like us, families going through treatment and a parent’s worst nightmare, relapse.  

We settled at home in Red Deer with our medical journals and numerous medications. We absorbed a ton of information that first week. The oncology team taught us how to keep a pediatric cancer patient safe from bacterial infections. This is necessary as the chemotherapy literally takes their immune system to zero. We ordered wall-mounted hand sanitizers for both the front and back entrances of our home. We kept Meghan home from school, and barred anyone who may have a cold from visiting our home. These were all logical steps in this new reality for our family.

Friends dropped off meals, Ryan went back to school and Meghan rested in bed with the family dog napping beside her. The dog was especially wonderful during at-home medication time. We would say meds and the dog would run to wherever Meghan was, so she could snuggle him while she took her numerous yucky-tasting oral chemotherapies. Meghan and Ryan video-chatted with their auntie and cousins up in Yellowknife and were excited for her to fly down again soon for a visit.

At home, we read through pamphlets from the oncology team and social worker. Mark and I soon learned about Camp Kindle, a summer camp where Ryan could meet siblings like him, and Meghan could make friendships with children like her. During weekly visits to the oncology out-patient clinic, we passed Kids Cancer Care posters of smiling bald-headed children at camp. “Well,” we thought, “thank goodness our kids will have this support system as they go through this nightmare.”

After a few weeks, we said goodbye to the grandparents and thanked them for their support. Big hugs as they left for the airport with a promise for them to hop on a plane at a moment’s notice should we need them. It was around this time that we received news that a child of one of the cancer families we connected with at Alberta Children’s Hospital had passed away. I visited in person with a few close friends, sharing coffees, tears, and laughter as the healing strength of a hug is so important when dealing with such unbelievable stress as a medical family.

I bet you can figure out what world event shook us and many other medical families next—the COVID-19 virus.

The COVID-19 virus and connecting with Kids Cancer Care resources.

We talked with Meghan about the back and chest pokes that were planned to occur once a week, then once a month. She was scared. She was tired of the process. It was hard. Five months into treatment, Meghan’s hair completely fell out. She told us no one looked like her. I contacted Kids Cancer Care and discovered some amazing staff working on innovative Zoom programs to encourage social connection between pediatric cancer families.

We connected with the PEER program through Zoom once a week. This allowed Meghan and her brother to talk to kids like them while playing fun online games and participating in Zoom-based exercise and physiotherapy sessions. Kids Cancer Care also offered weekly Zoom programs with craft activities. I signed up too and loved the Zoom aerobics classes with other Kids Cancer Care Moms! 

Why the emphasis on creative Zoom-based cancer support for families? You guessed it! The risk of COVID-19. Kids Cancer Care had moved programs online to support families, while protecting medically vulnerable children like our six-year-old medically fragile, immune-compromised little Leukemia Warrior Princess Meghan. That COVID-19 virus was now a global phenomenon.

• Schools closed
• Recreation centers closed
• Playgrounds were roped off with yellow police tape
• Family members could no longer fly in to visit
• For a time, my husband was the only member of the household allowed to go out in public to do grocery shopping
• Seeing friends in person to hug was too risky
• Common areas and playrooms at Ronald McDonald House closed
• Summer camp at Camp Kindle closed
• Siblings were no longer permitted in the out-patient clinic of the oncology ward at the hospital
• Only one parent at a time was permitted in the oncology out-patient unit of the Alberta Children’s Hospital

Long periods of time between 2020 and 2022 passed when the only other people my children saw were Kids Cancer Care children and staff on Zoom and Meghan’s oncology team. I stopped working those two and half years to take care of Meghan. We switched from online school after two months to begin homeschooling to better accommodate Meghan’s medical appointments and energy levels. 

As much as other well-meaning bystanders or friends tried, we felt that Kids Cancer Care staff and families were the only people who could truly understand and relate to the journey we were on.

In August 2020, we had our first of three experiences as a family at Camp Kindle. Meghan was well enough to travel but she was feeling nauseated and crummy most of the time. Kids Cancer Care provided us, for free of charge, three-night accommodations at Camp Kindle and full use of the facilities.  We took them up on their offer, packed our food, packed all of Meghan’s medications, and away we went! This place must be seen to be believed. The scenery is amazing, but the sheer amount of effort Kids Cancer Care staff and volunteers go through to give cancer families the opportunity to enjoy the great outdoors together while keeping in mind that pediatric cancer patients need access to cozy beds, bathrooms, and living rooms is fantastic! Often during our first stay, my husband and son would enjoy a cozy campfire outside while I read a book inside, watching over Meghan as she slept off the nauseating side effects of oral steroids and chemotherapy. Meghan would then wake up and sit outside on my lap listening to the nearby brook and the birds in the rustling trees. 

Fast forward to August 2021. Seven-year-old Meghan had moved into the maintenance phase of treatment and was now receiving spinal and IV chemotherapies at the Alberta Children’s Hospital only once a month, as opposed to every weekend. She continued with her daily oral chemotherapies at home but had more good days than bad and her immune system was slowly growing stronger as the IV chemotherapy decreased. In discussion with our oncology team, we decided to return to in-person school for both of our children in September 2021. 

Another wonderful program for Kids Cancer Care families is their Cancer in the Classroom presentation. Meghan had left school halfway through kindergarten and was now returning to grade two. How would we navigate this transition? Our family worked with Kids Cancer Care staff to develop a customized presentation, on which Megan took the lead. The presentation explained to her grade-two classmates why she had been away from school for so long, why she would still be missing school for medical appointments (Meghan was still on a 30-day cycle of IV chemotherapies, oral steroids and at-home chemotherapies) and anything else she wanted to share with the class.

This was a surreal moment!! My husband and I sat in the back of the grade-two classroom in the tiny chairs (our son Ryan was just down the hall in his grade-five class), colorful math and learning posters covering the walls of the room, as our seven-year-old girl sat in front of her peers and proudly told them all about her cancer journey. Ms. Kimberly Zoomed in from the Kids Cancer Care office in Calgary as Meghan walked the class through the presentation. Kids Cancer Care also gave Meghan a Monkey in My Chair stuffy, which the teacher would place in Meghan’s seat on the days she could not be there. What a fantastic way to promote empathy and compassion in classrooms for medical children.

On Meghan’s two-year cancer diagnosis anniversary, her elementary school completed a social justice project and collected toy donations for Kids Cancer Care programs. Meghan and I were able to deliver this huge amount of gifts to Kids Cancer Care on our way to one of Meghan’s monthly IV chemo appointments at the hospital.

Eight-year-old Meghan completed her two and half years of active treatment on June 19, 2022. We were pleased that the surgery on June 20^th to remove her chest port was a success as this allowed time for her to recover before attending her first Camp Kindle summer camp with her brother Ryan from July 4^th to July 8th.

Our children were finally able to meet in person the other cancer children and siblings they had been Zooming with for the past two and half years!!

We take things one day at a time because sometimes the future possibilities can seem overwhelming. Having the Kids Cancer Care support network has helped us cope with the never-ending ups and downs of a childhood cancer diagnosis, active treatment, and long-term treatment.

Thank you, Kids Cancer Care.

Love,

Meghan and family

XOX

When I was two and half years old, I was busy playing dress up with her older sister Allison. I squeezed into a shirt that was way too small. When my mother finally rolled it off my arms and head, she noticed it had left little dark spots. Mom immediately booked an appointment with the pediatrician, thinking I should be eating more of those vegetables I hated and still hate today.

The appointment was scheduled for Friday afternoon, March 30, 2007 at 4:45 pm. By 5:30 pm that same day, I had my first blood draw. In less than 24 hours I was admitted to our local children’s hospital in Spokane for further testing. Five days later, they received the results. I was diagnosed with MDS (myelodysplastic syndrome) and AML (acute myeloid leukemia), both are types of blood cancers. Those little dark spots?  Petechiae. The first of many visible signs that I had cancer.

I had only one treatment option — a bone marrow transplant. We didn’t have to look far for a donor as my four-year-old sister Allison was a six out of six match. My treatment regime included total body irradiation. In my opinion, this is similar to having your entire body placed in a microwave oven. As I was too small for the machine, I was placed on a gurney against the wall with a radiation beam concentrated on her entire body. Combined with high doses of chemotherapy, this would kill all the cancer cells and all the healthy cells in my body.

I became very sick from the treatment. I had painful blisters in her mouth and throughout my GI tract, making eating nearly impossible. My skin was burnt bright red and my gorgeous blonde hair began to fall out in chunks. I was receiving blood transfusions daily and platelets every three days. I spent most of my days in isolation as her immune system was depleted, putting me at risk if I was exposed to something. The purpose of the protocol was to take my immune system to ground zero, so my body was less likely to reject the donor cells. I spent the next five months in a hospital room.

Once I was cleared to go home, I was excited to see my bedroom, toys, and dogs. I was scheduled to start pre-school in the fall of 2008. That was all put on hold when I relapsed.  I would spend my fourth birthday in the hospital, waiting for another bone marrow transplant. This hospital stay was much longer. I had more complications and a thirty per cent chance of survival.

My second transplant would be in Calgary at the Alberta Children’s Hospital with a life-saving donation of a stranger’s cord blood. At this time, my family was introduced to Kids Cancer Care. My sisters Allison and Annaka were able to attend Kids Cancer Care programs as siblings, but I was too sick. One of the first programs I attended was the Halloween Howler. It was hosted in the gym at the hospital, but I was in isolation, so the volunteers, dressed in their costumes, came to my hospital room, and waved through the window. The following summer, I attended SunRise, a weeklong day camp that included one night at the big camp. I only remember that night by a picture of myself standing on the dance floor with my blanket, watching the big kids dance.

I may look like an ordinary kid, but my 4′ 11″ stature tells another story. I had cataracts at age five and have artificial lenses. They will need to be replaced in a couple of years once I reach adulthood. The high-dose chemotherapy and total body irradiation damaged the development of my teeth, so I will need dental impants. Before I am able to have dental implants, I will need reconstructive jaw surgery, which involves taking a bone graft from my hip. I have 70 per cent lung capacity and my bones are extremely brittle. The list of my long-term side effects is endless. Some are known, while others are yet to be discovered. I will see specialists multiple times a year for the rest of my life.

Through the years I have participated in many Kids Cancer Care programs and events. I have taken part in the High Hopes Challenge at Camp Kindle, helping to raise much-needed funds for kids like me. I participate in the PEER exercise program, which helps reduce long-term side effects and makes movement fun.

I am also in the Teen Leadership Program, known as TLP. The TLP program helps teens build leadership skills while having opportunities to give back. One of my first TLP events was volunteering at Halloween Howler, the very same event I had experienced through my hospital window when I was four. I had come full circle.

All of these programs would not be possible without the support of generous donors. Thank you for your continued support.

~ Amanda

I was 14 years old and halfway through my grade eight finals when I was diagnosed with high-risk leukemia. That was when my life changed forever. I went from being an annoying little teenager to a “mature” one in a matter of minutes. To be very honest, I don’t actually remember being diagnosed.…Sounds weird right? I know. It was like that for most of my treatment actually. I guess it’s my brain’s way of protecting me, which I am extremely grateful for. I have had to rely on the memory of my parents for some of this.

As you can imagine, the news was devastating. None of us knew what to do or what to think. We were told that my treatment plan would consist of two and a half years of chemotherapy. Going into treatment, I had a sense of how intense it can be from hearing about others or seeing cancer patients on TV, but truly having it was a completely different thing. It was more than I could have ever imagined. It rapidly became one of those things you can only know when you have it.  

Mom and Dad stopped working straight away and decided it would be best to focus on the situation until I was stable and okay. My little sister Kya went to visit family in Winnipeg for a while.

I’m really happy she was away, because exactly one month after diagnosis, I ended up having a really rare side effect to the chemo.  Paralysis. It is expected when on treatment to feel numbness or tingling in the limbs, but definitely not actual paralysis. It was getting harder and harder to move until one day I actually couldn’t move at all. It was like a wave. Starting with my toes, moving up to my ankles, then my knees, and my hips. I couldn’t even reposition myself on the couch.   Because it was spreading so quickly, my oncologist told us to call an ambulance right away. I ended up spending a few nights in the ICU as a precaution. They were worried it would spread to my lungs, in which case I would need ventilators to breathe. Thankfully it stopped mid-stomach, so I didn’t need them after all.

After gaining my feeling back, I had lost nearly all of my muscle mass and literally couldn’t even move on my own. But this time, instead of not being able to move my legs, I couldn’t move anything. I had to be spoon fed—as a teenager! It was terrible.  I was in so much pain in my muscles, my nerves, and especially my joints. Let me tell you, literally learning how to stand on my own again took six weeks of in-hospital rehab. Walking and getting upstairs took way longer and it was A struggle. The pain was excruciating, but I still pushed through and eventually was able to do those normal things again. It was a HUGE accomplishment. 

Thankfully, I had Kids Cancer Care’s PEER exercise program a few times a week, which helped me TONS with my recovery. PEER is basically a personalised rehabilitation exercise and stretching program  depending on what you need it for. PEER was developed by researchers at the University of Calgary and health care professionals at the Alberta Children’s Hospital. The goal of the program is to keep kids moving and make sure they don’t become too weak because of treatment. This is incredible and if you know anyone with cancer, you know that it is much needed! It’s basically fun physiotherapy. It helps reduce the immediate and long-term side effects of cancer treatments. And so, I participated a couple times a week and got better. I still participate in it today.

A couple months after that horrible time, I experienced yet again another rare side effect. Unfortunately, this was the one and only thing that I remember every moment of. Brain swelling is not fun at all. I couldn’t speak. I couldn’t move. I could barely breathe, and I was choking. They thought I was having a stroke. Not being able to control a single muscle in your body is terrifying. Not even being able to blink or breathe is something I was never prepared for. All I wanted to do was tell my parents I love them, because I thought I was dying, but I couldn’t say it. 

Again, my body was all pain. Everything hurt so badly but there was no way for me to communicate that to anyone. I won’t talk too much about this experience because I really don’t feel like breaking down in front of everyone right now. It was honestly the most traumatising thing I have ever experienced, and it still gives me PTSD to this day. I don’t think I’ll ever get over it.

The last two and a half years haven’t been an easy road, lots of gravel, with occasional boulders if you know what I mean. So, as you can tell, treatment has been pretty rough. Thankfully I am now finished. (I finished in October!!). But I am now dealing with the long-term side effects. In my case, it is a severe case of avascular necrosis. Basically, this happens when there’s not enough blood flow in the bones.  They deteriorate and die, which means I am the equivalent of a piece of glass right now. It causes a lot of pain, like, A LOT of pain, but I have had it for a couple of years and so I am kind of used to it. It does prevent me from doing some of the things I used to love, for example volleyball. Jumping is risky, dangerous, and extremely painful.  

My takeaways from treatment are that when you have the opportunity to do something, go and do it before it’s too late, before you can’t anymore, because you never know when that will be. Being sick also taught me to live in the moment and to not take things for granted.

Like I said earlier, I only remember a handful of things that have happened throughout those two and a half years. What a lot of people don’t think about are the after-effects of treatment, when the hair grows back… I still have monthly visits to the hospital because of my bone condition, and so I’ve been hearing a lot of stories about what happened to me throughout my journey. Although my cancer treatment has ended, as I stand here before you today, my truth is that I am struggling mentally to process all that has happened…

Now, this is where Kids Cancer Care comes in… Throughout the entirety of my treatment they have been there for me and my family whether it was Pizza Night at the hospital, or some of their programs that they provide for kids and families. I have been part of so many of their programs, like PEER and Teen Leadership, both of which I am still in. The staff have been there for me the whole time and were a great support to my family.

One of my family’s favourite things is Camp Kindle. Since I was diagnosed, I have been isolating to prevent any sickness, and then Covid hit, so it just amplified the isolation. Our family isolated completely for two and half years, like we literally went nowhere, not even to the grocery store.  Camp was the one and only place we felt safe and comfortable visiting, because we know Kids Cancer Care does not risk anything when it comes to the health and safety of the kids. We always look forward to the time we will spend there next and it has become one of my family’s happy places! It truly means more to us than we could ever tell.

As an older sister, I worry about my little sister Kya a lot. Having cancer and not being able to explain to her what is going on or trying to “be okay” to stay strong for her was extremely difficult. I was always in and out of the hospital, and sometimes she wasn’t allowed to come visit me. During the pandemic, Kids Cancer Care had little Zoom calls with princesses, or activities for her to do, which made me feel so much more comfortable being away from her. Knowing that she had fun and wasn’t worrying about me in that moment, most importantly, meant a lot to me. Kya is also part of the PEER exercise program because she does have a lot of pain and problems herself, and it’s also a great way for her to meet other cancer siblings her age.  

Thanks to Kids Cancer Care, I have made so many new friends that truly understand me. I can tell others the crazy things I’ve been through, but they will never understand. It feels so amazing to be connected with others my age who I can have real conversations with, some of whom I’m sure we’ll be friends for a long time! Most of them I met through the Teen Leadership Program which is a program directed for older teens to learn leadership and life skills. One example would be learning how to apply for university and all the tools and tricks we’ll need to know when the time comes. We also organise and participate in fundraising events and volunteer at local non-profit organisations. It’s a lot of fun! 

Another thing Kids Cancer Care has provided is a tutor… Treatment causes this thing called “brain fog”. It slows down your thought process and makes it difficult to remember things. I was majorly affected in this area, as I wasn’t able to fully comprehend the school material. I have had my tutor for a year, and we actually became friends. I think of her as a friend that is just helping me out, because again we really understand each other in ways not many people can (because she too had childhood cancer). Fun fact! She was also a spokeskid for Kids Cancer Care at one point. It’s nice because we share a lot of the same interests as well! 

One day I hope to become an optometrist, I just love everything about optometry, and since it is a very pricey schooling program, I will definitely be applying for the Kids Cancer Care scholarship!

Of course, all that happened absolutely sucked. The uncertainty of what the next day, of what the next hour, would hold for me was absolutely terrifying.  With that being said, it’s nothing like it would have been without the support that Kids Cancer Care has provided for me and my family…the support, the fun, and most importantly the distractions. I honestly cannot imagine what these past two and a half years would have looked like without them.

Honestly this, this right here, me writing this for you, is an opportunity that I will forever be grateful for.

Thank you so much for reading my story, and for your time. Thank you for supporting Kids Cancer Care.        

~ Mikah, Kids Cancer Care spokeskid, cancer survivor, future optometrist and superhero

Sam’s battle with cancer started in October 2015. Sam jumped on his brother and got a bump on his face that just wouldn’t go away. We were fortunate that our family physician was suspicious, did some blood work, and diagnosed it as Leukemia.

This was such a scary time for us, made worse as it comes with such an overwhelming feeling of helplessness. As parents, we all would fight any battle on behalf of our children if we could, but with cancer, they are forced to fight. And they must endure all the terrible side effects of the strong medications and treatments necessary to save their life. Still completely in the depths of shock and fear we were told to check into the oncology department at the children’s hospital.

It is amazing to think back and realize that Kids Cancer Care was with us through our entire journey. We first met volunteers from this amazing organization in week one of living at the hospital. They provide pizza to the kids and parents who are forced to be in the hospital for long stretches. This gives the families something to look forward to, but also provided an opportunity to connect with other parents at the hospital.

Another of the amazing programs that Kids Cancer Care provides is Child Life specialists, who help kids deal with the anxiety and fear of having to face difficult surgeries and procedures. They provide dolls that kids can play perform the procedures on, like having a semi-permanent Intravenous access device (IVAD) installed because the kids will be connected to IV machines so many times during their treatment.

Also, while we were in the hospital for our first couple of weeks, the team from Kids Cancer Care sent volunteers to our house to fill the freezer with delicious and nutritious meals as part of a program called Cooking and Caring. It was so appreciated and exactly what our divided family needed with us parents switching in and out of the hospital every two days to have one parent at the hospital and the other at home with our other two kids. (Which we did for 200 days).

Most battles with cancer have similar themes of alternating low points, some days suffering the consequences of the cure are very difficult and then there are periods between harsher treatments where feelings of relief and hope are more prevalent. This was so very true when the oncology doctors explained that Sam had Acute Lymphoblastic Leukemia (ALL). If you have to get the unimaginable bad news that your child has cancer, this is the better kind. The oncology doctors and researchers have figured out how to cure ALL will few long-term side effects, 85% or more of the time.  This knowledge helped with our fear of the unknown immensely.

The first treatment phase is called induction where they try to get ahead of the cancer with some high-dose steroids and chemotherapies. After the worst of the negative effects from the steroids wore off, Sam was feeling okay and able to enjoy some of the programming that Kids Cancer Care provides.

This feeling did not last long. Cancer is a mutation to healthy cells and the aggressiveness of the cancer can be studied by testing the DNA of the cancer cells. Sam went from low risk, straightforward treatment to extremely high risk, very poor prognosis with this single test. This meant that the doctors had to abandon the established protocols and choose a more aggressive treatment to fight against this rare leukemia. Sam needed a bone marrow transplant. This constant roller coaster of increased fear started to take its toll, and this news was a horrible shock.

The science around the bone marrow transplant has been steadily improving for the last number of years, and we caught a break that Sam’s older brother William was a match and could be his donor. So, after the doctors at the children’s hospital, in comes our next hero!

Here is where the pattern of good news followed by bad news really starts to take on deeper and darker consequences. In the period leading up to the bone marrow transplant, children are extremely immune compromised. Sam contracted a severe cellulitis skin infection. It got so bad they were starting to test and treat it as if it was flesh eating disease. We have learned over the years, the more doctors present means the worse the situation is. Daily meetings between Oncology, Infectious Disease, and plastic surgery doctors is not a situation any family wants to be in. The pain from this infection was so horrible for Sam, that he was put on a morphine drip just to try to have a tolerable existence. He would cry and scream in pain with every diaper change which was made worse because the strong antibiotics he was on were causing him major stomach issues.

In order to get ready for the bone marrow transplant, the doctors have to zero out Sam’s old immune system which involves some very serious chemotherapies and two doses of full body radiation. Sam got to ride in ambulance to the Tom Baker Cancer Center (he liked that part). We as parents had to suffer watching him be sedated and packed into what was eerily similar to a coffin. Visually and mentally it was one of the hardest days of the process. This is also the day we had moved into the children’s hospital for what would be our longest continuous stretch. Every bone marrow transplant comes with a minimum stay of 45 days while the child’s new immune system hopefully takes hold and begins to function.

Thankfully Sam was so strong and he was more worried about his poor brother having to get a needle and small surgical procedure to enable the stem cell donation. As they wheeled William away for this process Sam brought us and some of the nurses to tears when he yelled after him down the hallway, “Be brave William, I’m so proud of you!”  Five hours of Scooby Do movies later the collection from William was complete, and super successful.

Infusion day was symbolic of the final road to recovery, but was quiet and calm. This was much needed as the effects of the bridging treatment to get to transplant were about to set in with the full force of their terrible side effects.

Day nine post-transplant mouth sores from one of the chemotherapies appeared, making it so painful for Sam that he couldn’t swallow or talk for four days. He was still able to show his inner strength with the odd smile, even through tears of pain.

After the mouth sores started to heal there was another short break of calm, and Sammy the Soldier had enough strength and will to finally sit up and paint. It was a simple thing, but after watching him suffer so much in literal silence, it was very meaningful and memorable. For the next little while, Sam started to heal.

That was until the worst April Fools Day we could ever imagine. On the night of March 31st, Sam developed breathing difficulties that got so severe he was admitted to the Intensive Care Unit. He had a lung infection so bad that he had to be intubated, restrained, and put into essentially a medical coma so he wouldn’t try to pull out the tube supplying his oxygen. This was the first time we had to seriously reflect on the fact he might not make it. Our oncologist was so supportive and amazing, but he also had to be honest. When we asked him what we were up against, he said “oncology patients in the ICU is not good. I hate that I have to tell you that there is a chance of mortality.”

For seven days Sammy fought for his life. He would regain a small amount of consciousness from time to time, so we could tell him how much we loved him, and he would reach for one of his favorite things, then the ICU nurse would push more sedation to get him back to sleep. This was a dark time. It is often the side effects of treatment, like compromised immunity to fight infection, that often takes cancer patients, before cancer does.

Thankfully his fledgling immune system and the medications were able to get him through the infection. Good news…. Immediately followed by bad news. Another life-threatening risk to bone marrow transplant patients is Post Transplant Lymphoma Disease. Which developed in Sam the same day they removed the breathing tube. The treatment for this involves an infusion that completely kills all the patient’s B-cells. These are the cells that develop the body’s immunity. To this day, they still haven’t recovered for him, resulting in the need for monthly infusions to support his immune system.

Sammy the Soldier’s fight against cancer was long and arduous, with periods of hope and optimism followed quickly by pain, suffering, and fear of the worst. Sam’s story is one of hope, perseverance, and strength. He made it. We are so lucky. Not all kids do.

Now Sam is healthy, happy, and doing Grade Four things. He is looking forward to his second stay at Kids Cancer Care’s Camp Kindle this summer! During the long phases in the hospital, having things to look forward to are so important. Camp Kindle was for sure one of these for Sam. There were others: Yoga and craft nights, Mother’s Day events, the Polar Express, Cool Yule theater tickets, and tutoring are all different ways that this amazing organization has supported our family through this ordeal. It is outstanding how they think of so many ways to support Alberta’s oncology community. Having subsequently learned of Kids Cancer Care’s investment in the research labs attached to the University of Calgary and ongoing donations to research to help save kids’ lives, it is with our whole hearts we would like to thank Kids Cancer Care for their ongoing work and unwavering efforts to support families like ours and the kids that have to face this horrible disease.

Thank you Kids Cancer Care!
Dean and Kelli Duffin

The Duffin family was featured in Leaving Thomas’ music video for “We Got This”, an original song inspired by Kids Cancer Care’s families.

Quinn Laudersmith was diagnosed with Wilms tumour at a young age, and he’s proud to say he’s a survivor. His cancer journey presented him with many challenges that he has overcome. Quinn also maintains a positive attitude and continuously thrives to improve as a person. 

His close contacts describe him as thoughtful, courteous, and mature for his age, but he is also kind, good natured and has a great sense of humour. Quinn has given back to the community in countless ways — raising $70,000 for Kids Cancer Care, helping seniors, serving as a cadet, and canvassing for the Heart and Stroke Foundation. He enjoys everything to do with avant-garde fashion. Historically, avant-garde in the French military referred to a small military group that scouted ahead of the main force. Quinn hopes to create a business in the men’s fashion industry that does just that — stays a head of the industry. He’s jump starting his career with a degree in business administration at Mount Royal University.

Where do I even begin? CANCER – it knocked the wind right out of me! My sweet baby boy forced to battle something so early on in his precious life seemed so unfair. But there we were and battle it we did.

Along the way, we were embraced by Kids Cancer Care who showed our son how to celebrate ‘Magical Moments’ at their SunRise day camp – those extra special beautiful experiences that light you up from the inside out. Even now, Sebastian (Bash) ends off each day by sharing his Magical Moments with us.

It’s little things like this that saved us and got us through our darkest days. Now, I’d like to share some of our Magical Moments with you, so you can see how much your support matters to families like ours.

In December of 2016, my husband Nate and I travelled to Saskatchewan with our 6-month-old son Bash. We were eager to celebrate Bash’s milestone ‘First Christmas’ together with family. What began as a joyful holiday, quickly turned into a fight for Bash’s life.

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On December 30, Bash was fussy, unable to settle, and I noticed his abdomen was hard, but only on his left side. That seemed very odd as it wasn’t noticeable that morning and being a nurse, I knew something wasn’t right. We rushed him to the emergency where the doctors ran tests. At around 3:00 am on December 31, after what seemed like eons waiting, doctors came to the bedside and asked us to come to a quieter area to talk. My heart sank. At that very moment I knew I was about to hear terrible news. They said, “We are sorry, but it looks like your son has Leukemia.” We were devastated.

Bash was diagnosed with high-risk infant B-cell acute lymphoblastic leukemia (ALL). It was the worst day of my life. I have never felt so helpless, so overwhelmed, or so much heartache all at once. It was a horrible, ugly day. We were suddenly faced with a tragedy and our tumultuous cancer journey began.

Bash was airlifted home to Calgary 3 days later once he had stabilized enough to travel. We then met with the care team and discussed his diagnosis and treatment plan. They said infant ALL is curable, with a 40%-50% survival rate at 5 years post diagnosis – and that was a tough blow.

In his first year of treatment, Bash spent 152 days in hospital. His first-time home after diagnosis was on January 14 for 1 hour. His first overnight pass home was on January 21. He had 57 days of IV chemotherapy, 49 dressing changes on his central line, more than 640 injections of blood thinner for his blood clot and central line, 6 bone marrow biopsies, 10 trips to the operating room for lumbar punctures and line changes, 27 blood transfusions, 50 outpatient clinic visits, and multiple additional tests and procedures.

I’ll never forget how the child life specialists always made sure that Bash had a balloon to help him through his treatments. Bash loved those balloons!

• On March 30, 2017, we found out that Bash needed a bone marrow transplant (BMT). It wasn’t the news we were hoping for. We had hoped that the chemo was working, and it would put him into remission. It was another kick in the gut.
• On July 7, 2017, Bash underwent a bone marrow transplant. He was the first leukemia patient in Canada to receive a new treatment that had been used in Europe since 2007 with really great results. I was terrified that we had to do it, that something could go wrong, and that we could lose our baby.
• We learned on October 18th that Sebastian was cancer free and in remission!!! 

I had to work on trying to let go and enjoy the moment, trying not to worry about the future and what it held. I had to work on being ok without cancer – which was wonderful, but cancer really changed me, changed us, and it was tough to accept that.

Bash is still at risk for GvHD, a serious condition where the donor’s bone marrow attacks the patient’s body. And because he had chemotherapy, he is also still at risk for secondary cancers later in life, as well as a host of other side effects that may or may not rear up later. He will most likely be infertile. He still has a blood clot in his leg which he will likely have for the rest of his life, and which may affect his ability to participate in sports.

Throughout Bash’s cancer journey, the waiting was hard, and the not knowing was even harder. But this quote really spoke to me, “Sometimes when you are in a dark place you think you’ve been buried, but actually you have been planted.” It was quite a journey and every day we are grateful for the people who were behind us helping to get through.

Kids Cancer Care was there for us at the beginning of our journey during our lengthy stay at the hospital. Wednesday pizza night became an opportunity for us to enjoy a bit of normalcy while surrounded by other families enduring similar situations.

Kids Cancer Care has been supporting us through every stage of Bash’s cancer journey since. And their support hasn’t stopped just because his treatment has.

• Bash loved attending SunRise Daycamp in the summer of 2019.  He was able to play, explore and connect with other children affected by childhood cancer. He can’t wait to attend camp again once COVID restrictions are lifted! He learned to appreciate and share the Magical Moments of each day with his camp friends. 
• Due to the long-term aftereffects of chemotherapy, Bash has been attending Kids Cancer Care’s PEER exercise classes. It’s been helping him develop strength, endurance, coordination, and flexibility while improving his physical and mental well-being.
• Our family spent a unique weekend experience at Camp Kindle’s Glamp Kindle program for Bash’s 4^th birthday. We spent quality time together in a beautiful, peaceful, and safe setting while reflecting on the difficult path we’ve travelled, appreciating the blessings in our lives, and focusing on the future that lies ahead. Bash’s Magical Moments at camp included rock climbing, hiking, and playing with the 3 camp dogs.
• Our family has also participated in many of Kids Cancer Care’s outreach programs such as the Halloween Howler, Polar Express Train Ride and Mother’s Day Brunch. These events provided us with an opportunity to come together as a family, and as a larger childhood cancer community in a safe and understanding environment.
• Bash is eligible to participate in Camp, Outreach, tutoring, and Teen Mentorship programs and will be eligible for a post-secondary scholarship when he’s ready.

There were a lot of tears and feelings of how unfair it had been. Then there were memories of all the Magical Moments; the first crawl, first words, the first steps, Bash’s ability to light up a room and send his visitors away with smiles, birthdays, laughter – so much laughter! Through everything he went through he still managed to make those milestones and show those around him what a fighter he is. To look at him is to love him, you would never have known he was sick.

We couldn’t have been prouder of him and the accomplishments he made throughout his cancer journey. Not just in treatments, but in growing up with all these roadblocks. His resilience is astounding, his strength and courage not only amazed us but also helped Nate and I get through it. Our goofy, sensitive, and light-hearted baby boy was sunshine even during the darkest days.

Cancer robbed us of many things. I was angry for a long time, I am still angry, but it also taught me to be grateful, to cherish every moment, to love with all your being, to not sweat the small stuff, and that family is everything. It showed us how strong we are, how much love surrounds us, what the important things in life are, and it taught me how to be humble.

And the quote that speaks to me the most in this moment, “Always pray to have eyes that see the best, a heart that forgives the worst, a mind that forgets the bad, and a soul that never loses faith”.

Never lose faith in the strength and courage of childhood cancer patients and their families. Together, we can change the course of childhood cancer and create more Magical Moments for children with cancer.

Gratefully,

Terra Carnie (proud Mom to Bash and Jackson)

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On Tuesday, November 30, 2021, five-year-old Sebastian (Bash) stepped up to help his parents Terra Carnie and Nathan Knutson raise much-needed funds and awareness for Kids Cancer Care. The Knutson family shared their childhood cancer journey for Giving Tuesday to raise funds, so other families can receive the support they need too. Six generous philanthropists stepped up to over $200,000. Special thanks to the Knutson family and generous philanthropists Gary Nissen, Fire and Flood Emergency Services, Steven and Lorna Collicutt, Rodney and Karen McCann, PBA Group of Companies and Enerplus.

Check out some of the media coverage:

CTV
CHQR
Calgary Citizen
CTV Digital

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