The Gossen Family and the magic of camp

In 2017, Ciara and Chris Gossen were ‘floored’ when their sweet little boy Jude was diagnosed with acute lymphocytic leukemia (ALL) at the tender age of three. In a heartbeat, their world was turned upside down, including the world of Jude’s sister Aoife, age 6, and brother Joaquin, age 10.

The family was soon introduced to Kids Cancer Care and discovered that our programs are open to every member of the family, including our camp programs at Camp Kindle.

Camp Kindle is a magical place nestled in the beautiful foothills of the Canadian Rockies. Kids are everywhere – playing, laughing and running. You look a little closer and notice kids without hair, kids in wheelchairs or wearing prosthetics and others helping a friend. They’re having fun with each other, enjoying one of the best weeks of their young lives. This is a place where mental and physical limitations become gateways of possibility, where empathy is celebrated and understanding is the norm. For siblings, parents, children on treatment and children off treatment.

Together, the entire Gossen family first experienced Camp Kindle through our Family Camp program in June 2018. They enjoyed a relaxing weekend family getaway with the chance to make connections with other families in similar circumstances. They were amazed at the beauty of Camp Kindle and the multitude of activities it offered.

The following summer, Ciara arranged for Joaquin and Aoife to spend an amazing week at Camp Kindle’s summer camp. Although Jude was still too young to go to camp that year, it gave Chris and Ciara the opportunity to focus their attention solely on Jude for a whole week. And it started Joaquin on a path of healing.

Before camp, “Joaquin was an anxious child who was reluctant to attend,” says Ciara. Thankfully, the Gossen’s experience at Family Camp helped reassure them that Joaquin would be safe and in good hands. “He absolutely loves and adores his little brother Jude and worries about Jude’s needs when he isn’t by his side.” Understanding Joaquin’s anxieties, Kids Cancer Care partnered him with a fellow camper and peer guide during camp who regularly checked in with him to ensure he was feeling okay and that his own needs were being met.

For a tween who previously struggled with peer issues, Joaquin surprised his parents by not only thriving at camp, but also making deep connections with two new friends. Both friends were in remission from cancer and he remains in touch with them today. Ciara believes that these new relationships “provided Joaquin with hope.” He saw with his own eyes “that remission is possible and that there can be light at the end of the tunnel for his brother Jude. This experience helped build up Joaquin’s resilience” and being surrounded by kids at camp who were experiencing similar journeys helped, “normalize Joaquin’s situation.”

When asked today, Joaquin says his favourite thing about camp is ”the companionship I received from kids who were going through the same thing.” And the worst thing about camp is, ”having to say goodbye to my friends.“

Aoife’s summer camp experience was equally great but in a different way. Aoife’s focus at camp was gaining independence and enjoying the simple pleasures of camp activities: singing songs around the campfire while making s’mores, swimming in the pool and participating in crafts such as painting.

Ciara recalls that as the school bus pulled up upon returning from camp, Aoife yelled through the window at her, “I didn’t miss you at all!”

Camp Kindle is a special experience for every child because it is an intentional summer camp. We use activities and equipment such as our climbing wall, zipline and giant swing as tools to encourage teamwork, cooperation and caring among the kids. Kids develop life skills through cooperation and competition and build resilience by facing their fears and showing each other empathy and understanding. A challenge by choice philosophy informs our activities. We try to gently push kids outside of their comfort zone in encouraging and positive ways, so they learn to challenge themselves. And kids often accomplish things they otherwise thought impossible, which increases their self confidence and self-esteem.

Each child arrives at Camp Kindle with their own unique experience of cancer. And what they take from camp is just as unique. Camp helps to strengthen the body, mind and spirit. It offers kids affected by cancer an opportunity to be with their peers who completely accept them as they are- NG tubes, prosthetic limbs, surgery scars and all. Thanks to our incredible donors, sponsors and partners, kids are given a chance to build friendships with kids who are experiencing similar situations. They understand one another and bond over their similarities and their differences. They gain confidence in themselves and learn important life lessons. They leave camp with a newfound sense of belonging and hope.

Camp provided Joaquin and Aoife with their own adventures where, for one week, they could focus entirely on themselves. Both Joaquin and Aoife can’t wait to attend Camp Kindle’s summer camp again once it can reopen safely.

And Jude is now in remission. He is 7 years old and is making great strides in Grade 1. He is catching up on milestones. Even though kids’ camps are on hold due to COVID-19, Jude and his family experienced a magical private 3-day getaway at Camp Kindle’s COVID-19 compliant Glamp Kindle program this past March. It offered each of them the best of Camp Kindle — rest, adventure and new opportunities.

Ciara says that, ”there’s not enough words to express our gratitude” to Kids Cancer Care. Her family, ”feels very lucky in spite of it all.“

At 12 years old, mature beyond his years, Joaquin wrote such an impactful thank you card. To our donors and supporters, it gives you some insight into the truly deep impact your gifts have on the families and children we serve.

COVID has put a temporary hold on Camp Kindle’s traditional summer camp programs but not on the needs of our kids and families. Kids Cancer Care has adapted to continue bringing respite and joy to families at Camp Kindle. We’ve pivoted to single family weekend getaways and outdoor family camp days.

You can help kids like Jude, Joaquin and Aoife survive and thrive with a donation today.

Mikey’s story is a bit of a long one, and likely a bit unusual to most. Mikey is three years old and was diagnosed with retinoblastoma when he was two and a half. That is not really where his story starts though. It starts when he was born. You see, Mikey is adopted. His story starts with the things he survived even before cancer. So, let’s start at the beginning….

Mikey was born in 2017. At nine months he was taken into foster care. He stayed with his same foster family until he came home to us.

We were matched for adoption with Mikey in late March 2020. After all the information sharing meetings and everything else was done and ready, we finally got to meet our little boy on May 20, 2020. Even though we had never seen him, we were already in love.

When we went to the foster family’s home to begin Mikey’s transition to our home (a four-day process) we noticed several things about his left eye within minutes of meeting him. The iris of his left eye was a different colour than his right eye. The right was a light, clear blue and the left darker and foggier. The white of his left eye was dark, shadowy, and very veiny. His left pupil had a very noticeable white cat eye like sheen over it anytime the smallest bit of light hit it. He also had a bit of strabismus (when the eyes do not properly align with each other).

When we asked the foster parents about his eye, they informed us that the iris had changed colour overnight over three months prior to us meeting Mikey but that they had not ever noticed the rest. They hadn’t taken him to the doctor to have the eye looked at. If they had, his cancer may have been diagnosed much sooner and his eye may have been saved.

We completed transition and brought Mikey home on the evening of May 24^th. The morning of May 25^th we took Mikey to the walk in to have his eye looked at and to ask for a referral to an Ophthalmologist, we already had an ophthalmologist we knew and trusted from working with our daughter, so we asked for a referral to him, Dr. Chacon.

Sadly, referrals take time, and it was July 7^th by the time we saw Dr. Chacon. He confirmed what we had suspected, Mikey had gone blind in his left eye. He could not get a clear look at what was happening as things were so cloudy in the eye, but he was concerned enough to call ACH (Alberta Children’s Hospital) then and there to have us transferred to their care.

July 15^th, we had our appointment at ACH where we met Dr. Astle. He again confirmed Mikey had no vision in his left eye. He also told us that Mikey’s retina was completely detached, he had severe glaucoma, and large masses in his eye. He requested we come back the following morning for a sedated CT scan and MRI so he could confirm if it was Coats disease or retinoblastoma. He told us he had surgeries all morning but to pop up to the clinic after lunch and he would squeeze us in.

So, the morning of the 16^th we went back to Calgary and had the CT and MRI done. We took a groggy Mikey for some lunch, then headed back to ACH to see Dr. Astle for the results. To say we were nervous was an understatement. Keep in mind this all happened during COVID-19, so only one parent could go in. I was with Mikey in the hospital and relaying everything via text to John who waited outside.

When Mikey and I got to the clinic Dr. Astle was waiting for us already. Never a good sign. He pulled us into a hallway and confirmed the worst. Mikey had cancer. Retinoblastoma. Far more advanced than most cases they see in first world countries.

The glaucoma was causing the pressure in his eye to be over three times the norm. They did not know how he was not in constant major pain. The abuse and neglect Mickey endured as a baby has made him very resilient to pain.

Dr. Astle recommended the eye be enucleated (eye removal) as soon as possible before the cancer had a chance to spread, if it had not already. They asked me to wait while they made plans with Dr. Gallie, a retinoblastoma specialist in Toronto. I remember Dr. Astle asked what my plans for the weekend were, I told him it was one of my other sons’ birthday. His reply was if you have other plans, cancel them, and get ready to fly to Toronto.

At this point, Mikey and I were put in an exam room and had to wait for a few hours while they got plans in place. I felt sick, like I could not breathe. I called John to tell him, as well as Mikey’s social worker. They needed to be in the loop through everything until the adoption was finalized.

By the end of the day, I had spoken to several specialist, hospital social workers, and so many other staff. They were all amazing, but it was all a blur. By the time I left the hospital that afternoon we had flights booked, clinic dates and surgery dates for in Toronto. That Sunday, July 20^th, John, and the kids dropped Mikey and I off at the airport in Calgary and it was off to Toronto.

On Monday we had clinic at Sick Kids where we would meet our new team for the stay. They could look at Mikey’s eye, do a COVID-19 test on Mikey and get prepped for the enucleation surgery on Tuesday.

They wound up admitting us on Monday while we were there as Mikey required several doses of medication to bring the pressure down in his eye to allow for safe removal during surgery. It was also decided that while Mikey was under for surgery that they would also do a lumbar puncture and bilateral bone marrow aspirations to check for cancer spread.

Tuesday morning came far too fast. Time for surgery. This baby boy that we had only had with us just under two months but loved so much had to have his eye removed. That was the first time it all really hit me, and I broke down a bit in front of the doctor while they were getting ready to take him to surgery. I was able to get it together before Mikey could pick up on it though, I did not want him to see me scared or upset when he was facing so much.

Thankfully, my husband is amazing and him and the kids were ready for video calls, phone calls, texts whenever Mikey and I needed.

Mikey was eventually taken into surgery and I was left to wait. During the wait Dr. Gallie had me fill in consent for testing on the eye and tumor to further retinoblastoma research and treatment, of course we were happy to consent to this. Pathology would also be done to look for genetic components.

A few hours later, Dr. Gallie came and told me that the surgery had gone well, they had to take part of the optic nerve as well as the cancer has visibly spread to the nerve.

When I first saw Mikey, he was still sleeping, he hadn’t woken up from the anesthetic yet. My tiny boy had a golf ball sized pressure bandage over his eye socket, bandages all over his back, he looked so tiny and helpless. My heart broke then and there. Mikey managed well the first night as they were right on top of his pain meds.

The following few days were hard though, Mikey was in so much pain he could hardly move, could not lift his head, and just cried and cried until he would fall asleep from exhaustion.

I had to fight for stronger pain meds. The retinoblastoma team did not understand why he was in so much pain as the enucleation surgery does not cause much pain at all. They did not take into consideration that he had a LP (lumbar puncture) and bilateral bone marrow aspirations as well until they consulted with the oncologist.

The oncologist said with the LP and aspirations cause severe headaches as well as pain at the site, and to think of the areas they took bone marrow from as bone breaks. Slowly over the next couple days his pain subsided a bit. He was able to move and play a bit more.

After five days in the hospital we were discharged to our hotel, and if no problems arose, we could go home to await the pathology results and next steps. We made it home that Sunday.

A few weeks later we got the news that yes, the cancer had choroid involvement as well as optic nerve involvement. Two places that cancer can spread to the bone marrow or brain from. Mikey’s LP and aspirations were clear, but they could not rule out there was no spread, and were pretty certain there was at minimum some microscopic spread in his socket or surrounding areas so Mikey would require chemo.

For many kids who have an enucleation due to retinoblastoma the cancer is contained in the eye and once the eye is gone, they are cancer free. No such luck for Mikey. He would require having an IVAD port placed and four cycles of chemotherapy. We also found out that Mikey has the sporadic, unilateral type of Retinoblastoma, and likely not the genetic type. Although there was some uncertainty about this. If Mikey ever has children, they do want them to be tested as well.

Time to start chemo was soon upon us. Mikey had surgery to place his port and we were admitted to unit one to begin chemo the next day as well as for a crash course in all thing’s cancer from the amazing nurses.

We were told Mikey would be given three different types of chemo, Vincristine, Carboplatin, and Etoposide. We were given the huge list of side effects that can happen with each type and learned that chemo side effects can show up YEARS after treatment. We were informed that Mikey would require seven days of GCSF (granulocyte colony-stimulating factor) injections at home after each chemo cycle too. He would have an insuflon placed and we would inject the GCSF through that.

The next morning it was time for chemo. Watching them hang bags of medication labelled toxic and fatal, knowing the nurses must wear protective gear and used specific tubing so the toxic meds cannot leech through and get on their skin, and that very toxic stuff was being pumped pretty much into our son’s heart through his port was not easy for John or me, he was allowed in with us this time.

The Vincristine and Carbo went well, then came the Etoposide. They had given us a heads up that Etoposide is quite reactive and can cause allergic reactions quickly…. they were not kidding. Not even 30 seconds into his Etoposide he had a small cough. Nothing I would have even thought much about, but the nurse knew better.

Lightening fast, she hit the stop button on the pump and was checking Mikey, who was already going into a full anaphylactic reaction. His face and tongue swelled up so quickly, and his oxygen SAT’s dropped.

They gave him a big dose of Benadryl to stop the reaction and within two minutes he was out cold asleep. Slowly the swelling went down. The nurse was so on the ball and fast that the Benadryl was enough.

The next day his Etoposide was switched to Etoposide Phosphate, given at a slower rate over a longer time and that did the trick.

When we were discharged, we were given a port care pack, extra insuflons, swabs, tegaderm patches, syringes, three different anti-nausea meds, his GCSF injections, and so much else. Our own mini medical office.

Mikey was a champ with the GCSF for the first two chemo cycles, but eventually started fighting it. He required blood draws as often as once a week to track his counts. He lost all his hair, and some of his eyebrows between his first and second cycles. He got sicker and sicker after each cycle as well.

Mikey required several platelet transfusions throughout treatment, lost much of his sense of taste, was constantly pale and tired and so much more. Each treatment was harder than the last. His marrow was getting worn out and the GCSF was not helping as much. But he was such a strong trooper through it all. He was amazing. The strongest person I know.

In September while he was undergoing treatment, he was also fitted with his first custom prosthetic eye. It was not an easy process and is still a challenge when his eye turns the wrong way or comes out. He is not a fan of having it put in or rotated. Hopefully in time he will adjust. He has trauma issues from his early days, as well as some developmental delays so sometimes it is hard for him.

Mikey had his IVAD port removed in December and moved to short term survivor status. He is still seen by oncology every three months, along with blood draws. Through his chemo and surgeries, a lovely surgery nurse we were introduced to Fostership, an amazing organization that provides care packages and support to families with a child fighting cancer.

They are an amazing resource run by a mom who has a child with cancer herself. If I recall correctly, it was her who passed our info along to Kids Cancer Care!

Kids Cancer Care got in touch and has been such a wonderful organization to work with. Everyone is so kind, helpful, and understanding. There are so many programs, support, and fun stuff! We were extremely fortunate to be able take part in camp Kindle; it was a wonderful couple of days to just get away from everything in a beautiful setting.

We also receive OT services from Carolina for Mikey, she is so amazing with him and makes the sessions so much fun! We are so grateful for Kids Cancer Care, Fostership, KAM (a Facebook page for moms who have kids with cancer attending ACH), and all Mikey’s doctors and nurses along the way. Cancer sucks, but the friendships and connections made we will always cherish.

Mikey’s adoption has also now been finalized. It was finalized on March 15th. He’s legally a Crawford and ours to love forever now.

~ Mikey’s mother Tannis

At Kids Cancer Care the Teen Leadership Program (TLP) has been busy over the past year adapting to online based sessions where teens can continue to develop themselves and have fun during COVID-19. 

The focus of TLP is to create a supportive and inclusive group that develops life skills, such as writing resumes, applying for post-secondary education and scholarships, budgeting and finances, volunteering and creating a digital story about their cancer journey. TLP is a safe place where teens affected by cancer can go to be a part of a group who have gone through similar situations.  

Typically, TLP includes a volunteer service trip to a low-income region where the teens build homes for families in need. Last year’s annual trip was cancelled because of the pandemic. The teens had a very important decision to make because of that.  

The teens had to decide to either save the money they raised for the next trip, or have the home they were going to build, built without them. With lots of grace they chose to have the house built without them. They were sent pictures of the process and of the family receiving the house they helped to support.  

“This year I really wanted to join back in because I really like TLP,” says Maeve a former TLP teen who is now volunteering for the program. 

Maeve is now 18 and in her first year of post-secondary education, studying animal biological sciences.  

“I found once I graduated high school everything that I had, that was fun ended, and I was like, ‘What do I do now?’ So, I was really happy when Kaity said I could come back and volunteer,” says Maeve. 

Maeve has helped out by putting together a scholarship presentation for the other teens in TLP to help them navigate how to get scholarships for post-secondary education. She was also part of a group of young women who held a webinar on preparing for post-secondary studies. 

“With university online, I haven’t really had the chance to make any friends yet, so it was really nice to be able to talk to everyone in TLP,” says Maeve. 

Jack agrees that it is great to have the privilege to continue these programs online, but it is not the same as meeting in-person.  

“Some people have cameras turned off so it’s kind of hard to interact with team members and meet people online, but I like the fact that we’re still able to get together, even though we can’t meet in person,” says Jack.  

Jack lives in Canmore and would normally have to drive in to Calgary to get to the in-person meetings. While he doesn’t mind the drive, he likes the accessibility of the online sessions.  

“People from all around the province could probably join TLP,” says Jack “Now that we’ve figured out how to use online resources, even if it goes back to in-person, you can still have some people participating at a distance. They can connect and incorporate ideas while not having to travel to Calgary.” 

TLP has also started a game night since COVID-19 started to provide dedicated time to having fun outside of the goal-focused meetings.  

“This past year, the game nights have been my favorite part of TLP,” says Jack. “I think that’s where we make up for the social stuff that we were missing in the online TLP meetings. Having the meetings in Calgary was just having fun and seeing everyone, and participating with each other, but with online we need this time specifically dedicated to playing games.”  

Game nights have included an online escape room generously sponsored by Mobile Escape and a night of playing the virtual game Among Us.  

“The escape room was a good way to actually motivate interaction,” says Jack. “When you’re in a small breakout group, you can work together with some of your team members and have more social interaction.” 

There are teens like Joshua who enjoy the easy access to online sessions. He says they are more time-efficient because there is no driving time.  

Joshua first became involved with TLP by recommendation and Victoria, Joshua’s mom, appreciates how committed the Kids Cancer Care staff is. 

“Nikki Lamarche (former staff lead of TLP) looked at me and said, ‘Josh needs to sign up for teen leadership, because he’s been doing PEER exercise and PEER has really helped him with his social skills,” says Victoria. “I think that this will really help him come out of his shell and he can hang out with some of his older friends.”  

Victoria loves seeing Joshua after a TLP meeting because he is always pumped and excited.  

“A big difference I’ve noticed with Josh is his confidence and talking to people and being able to approach someone,” says Victoria. “He’s been taken out of that bubble, and they’ve coaxed him to do a variety of things like interacting with unknown people which was unheard of before.” 

All these kids have remarked on their confidence levels going up, and how TLP has boosted their moods and created a place where they feel safe, heard and accepted.  

“It was definitely a good confidence boost and then just meeting other kids my age who had been through the same stuff, and we’re all working to try and give back and help others,” says Jocelyn Pricca, who has been in TLP for two years.  

“It’s been great for Joshua in a lot of ways and it trickles down into everyday life,” says Victoria.  

Without a doubt the teen leadership program is amazing, but what makes it amazing, are the people in the program, the people who lead the program, and those who make the programs possible. Thank you for supporting Kids Cancer Care’s Teen Leadership Program.  

B“If you ever want to experience a life-altering journey with a child who has been afflicted with a horrific disease, you absolutely need to become a challenger. It will open your eyes to a world that you may not have known existed, or at least not to the depths of what it is, so do yourself a favor, do Kids Cancer Care a favor and get involved.” – Carol Oxtoby

The High Hopes Challenge sees Calgary business leaders test their physical and mental stamina in a day long challenge at Camp Kindle to raise funds for children affected by cancer. These brave challengers are not alone in that challenge; they are paired up with a kid coach, who are childhood cancer patients or survivors.

Kids Cancer Care has been hosting this fundraiser since 2013. This event has become a staple in the Kids Cancer Care community and will be continuing in 2021.

“First and foremost, Calgary is such an entrepreneurial city with a great zest for philanthropy and doing the right thing when it comes to the less fortunate,” says Carol Oxtoby, a 2013 challenger. “I just thought it was a great initiative because I knew that by encouraging business leaders to partake in the event that it would definitely raise the bar in fundraising.”

Carol has been part of the Kids Cancer Care community as a philanthropist for quite some time and is excited to share her experiences with the High Hopes Challenge.

“What made my particular venture even more exciting and emotional was that my kid coach’s mother was also struggling with cancer and she was a single mother,” says Carol. “I felt very blessed that I not only had the privilege of working with this young lady, but we also had her mother by our side and unfortunately, we’ve since lost her,” says Carol.

Each team is challenged with raising between $10,000 and $15,000 for Kids Cancer Care. Carol and Kayla raised $43,000.

“Kayla was my kid coach and her mother’s name was Shannon and during the time we spent together fundraising for the High Hopes Challenge her mother Shannon and I became very, very close so it was devastating when we lost her,” says Carol.

“Shannon and I went and got tattoos before she passed, which I didn’t think I would ever do. The tattoo is ‘carpe diem,’ which is Latin for seize the day,” says Carol. “Every time I look at it, I think not only of Shannon, and of course Kayla, but I’ve lost about four girlfriends to cancer now, so it’s a tribute to the courageous battle they have all fought.”

Kayla has since survived and beaten cancer and is now doing really well. Kayla has plans to be a psychologist and studied psychology at the University of Lethbridge with the help of a Derek Wandzura Memorial Scholarship from Kids Cancer Care.

“Ever since I’ve become involved it makes me look at life through a different lens,” says Carol “It makes me very, very grateful for the good health that myself, my family and my good friends enjoy.”

Carol, Kayla and Shannon named their team Girl Power and showed just how powerful they could be.

“We took a very tragic situation and made it into a beautiful bond we created together,” says Carol. “My take-away from that experience is the wonderful time that I had with Kayla and Shannon, I also got to see the generosity of my friends and family while raising the money.”

Carol points out that cancer affects all ages, and it is awful no matter who gets it, but when childhoods are taken away, it makes the experience seem more horrific.

“I really struggled with what I was witnessing with this tragic illness and how it impacts young children their families, but I was also emboldened, with how the families and these young children are dealing with their tragedy. I mean it was, uplifting,” says Carol.

The 2021 High Hopes Challenge will be held at the Kids Cancer Care office for a second year due to the pandemic. But make no mistake, Kids Cancer Care’s program team create a perfectly challenging set of obstacles for the challengers and kid coaches. To learn more about the Hight Hopes Challenge contact Genine Neufeld.

While she cannot remember how she first heard of Kids Cancer Care, Shellen will never forget the day she took that first step to get involved. Little did she know she would be dedicating the next 20 years and counting to Kids Cancer Care. An amazing commitment and contribution we greatly appreciate.

“I was an athlete participating in the sport of bobsleigh,” recalls Shellen. “I had done other sports before. I decided to shave my head because I felt, and still feel today, that as an athlete, I am very fortunate and privileged to be able to compete in the sport of my choice. Due to isolation and the after-effects of treatments, many kids affected by cancer do not get that chance. I wanted to do something to help, so on February 9, 2001, in -25 weather, I shaved my head at the World Championships for Women’s Bobsleigh.”

Shellen didn’t only brave the cold when she shaved her that bitter day in February; she also raised $2,000 for Kids Cancer Care.

When Kids Cancer Care later discovered that Shellen studied photography at university, we invited her to volunteer that summer. “I came to my first camp as the camp photographer with FILM if you can believe it,” she laughs. “I was the camp photographer for a few years and taught photography to the campers before becoming a counsellor.”

Shellen has been volunteering ever since.

A gold medalist in the 2017 World Masters Games, Shellen is an NCCP-certified level one weightlifting coach and former competitive bobsledder and track and field hammer thrower. Given her athletic accomplishments, Shellen is refreshingly humble about her volunteer contribution, maintaining that she gets far more than she gives at Kids Cancer Care.

“You go in thinking that you are going to change a child’s life, but they change you,” says Shellen. “I remember arriving at camp one summer, and all of a sudden, I hear ‘HEDGEHOOOOGGGGG!!!’ and was swarmed by tiny people full of joy to see me. I don’t get the same reaction from the teens. (Ha! Ha!) I know this is a wee bit selfish, but that much joy shared with me was so precious and I was so honored. I truly believe I would not have been so successful as an athlete and as a person, if Kids Cancer Care wasn’t in my life.”

Over the years, Shellen has worn just about every hat (and cape) imaginable at Kids Cancer Care, giving her time at fundraising events, teen camps, summer camps, leadership camps and at the office. While she loves all of it, she admits that camp is her favourite.

Shellen fully appreciates the need for fun and laughter in the lives of these kids, facing cancer or treatment-related health problems. “Children deserve to be kids for a while,” she says. “They deserve a break from all the treatments and all the pain. If we can be goofy and silly as volunteers and make them forget for even a few hours, we have succeeded.” 

While Shellen can be as goofy as the next volunteer, she understands the gravity of the situation facing these kids and the fragility of their health. She is grateful for all of it—their smiles, their silly memories and their growth as individuals, but at the end of the day, Shellen is most grateful for the chance to see these kids grow up.

“I am a late bloomer,” she says, “so as Kids Cancer Care grew, I grew up too with volunteering. Seeing campers turn into nurses and other accomplished adults is so rewarding. I have met amazing people and have been so blessed to watch these kids grow up over the past 20 years.”

This year, we recognize Shellen’s 20-year milestone as a Kids Cancer Care volunteer. Thank you Shellen, and all volunteers, for your amazing contribution. People like you provide joy and hope to kids during a very dark time. Shellen, you are a shining example of what it means to give and to commit yourself to children whose lives have been interrupted by cancer. Thank you for an amazing 20 years Shellen. Here’s to 20 more!

It all started in December of 2018 when I was 13 and suddenly started having migraines. It went on for a long time before we thought anything of it, so I just took Tylenol. Eventually, I went to the hospital. My family and I spoke with the resident doctor and he said it was nothing. But the migraines were getting exponentially worse, and I couldn’t take it anymore. At midnight, a couple days later, we went back. The doctor did a Cat Scan and saw something, so they did an MRI and told us that I had a buildup of fluid and a tumour in my brain. It was the size of a ping pong ball near my ocular nerve in the dead centre of my brain.  

When I heard that they weren’t actually migraines, but a tumour, I was shocked. My mind went somewhere I can’t even begin to explain. I felt weightless. I was thinking: “What do we do next? What’s the plan? What are we going to do?” I didn’t know how to express all my thoughts. When my parents gave me the news, they were both crying. I told them, ‘Hey, you can’t cry. If I’m not crying, you can’t either.” Sometimes that would make them cry even more. 

The next morning, they cut a little hole in my frontal lobe to take a biopsy of the tumour. They removed the fluid and relieved the pressure in my head by creating a third ventricle. Before the procedure, the surgeon joked, “It’s no big deal because men don’t use their frontal lobe anyways.”  The best part was the morphine. I couldn’t feel any pain, but I also couldn’t feel anything else either.  

Later, the biopsy came back. Stage 2 to 3.  

During my second surgery, which was 6 hours long, they removed the back of my skull and separated the two hemispheres to remove the tumour at the centre of my brain. They inserted an EVD to drain any fluid that might get in the way and took another biopsy. This revealed a stage 4 pineoblastoma, a rare form of brain cancer. After the surgery, I had to stay in the Pediatric Intensive Care Unit for more than a week, until I was stable. I later went to Unit 3, for recovery and rehabilitation. 

My parents and I were researching the possibility of receiving proton radiation therapy in the US. But when we learned it was stage 4—that was no longer an option. If I waited, my chance of survival would only be 20%.Time was of the essence. 

They had to fast-track my treatment. They needed to stop the cancer from spreading or from developing into a secondary cancer. The plan was to radiate my brain and the length of my spine in three sections. This was because the radiation machine can only do 20 centimetres at a time. Each session took about an hour and a half. I had to lie on a hard, narrow bed with a foam headpiece and a fiberglass mask to keep me perfectly still. This way, they could target the right spot, while limiting the potential damage to healthy tissue. Sometimes my pinky would go numb from being so still.  

If there is anything good to come of radiation, it was all the accommodations the staff at the Tom Baker Cancer Centre made for me. Everyone there was so nice and provided top notch care:

1. First, they let me listen to music to pass the time, while I was getting treatment.  
2. They made my fiberglass mask look like Batman’s.  
3. They also made a large Call of Duty poster with 31 crosshairs to represent the total number of treatments I had. Every day, I got to “shoot” them with bullet stickers. The last crosshair was the biggest one and had flames, shooting out like a meteor. I shot it with the biggest bullet I had. Done!  
4. After I finished all my treatments, they made a scrapbook of my journey and, on the final page, they shared nice memories of me.  

Chemotherapy would be next. But before they could start, they had to harvest my own stem cells, which they would later use to boost my immune system between chemo cycles. They did this by inserting a 12-guage needle into my groin. I had to lie perfectly still for 8 hours straight until they had collected enough. Boy, that was painful. 

I was terrified of getting chemotherapy. After my first round, I knew it would be a heavy hitter. I received four months of high-dose chemo to kill all the cancer cells in my body. After each round, they would return my stem cells they had harvested earlier. They also had to give me G-CSF at this point. G-CSF is a growth factor that helps your white blood cells recover faster. They gave it to me to boost my immune system, so they could administer the next round of chemo even sooner. Then the next round would deplete my immune system. And the cycle would start all over again.  

Once while on chemotherapy, I went into toxic shock and had to be isolated in ICU. I wasn’t even allowed to pee in the toilet because my urine was radioactive. I couldn’t have a lot of visitors either because my immune system was so compromised. A cold or flu could have been fatal.  

Imagine COVID-19 on steroids. That was our life.   

But G-CSF was the absolute worse . . . because IT BURNED. The needle felt like a blow torch, burning the muscle and fat of my upper arm. Then a professional baseball player came along and slammed a bat against that same spot.   

During chemo I had the craziest nosebleeds. Turns out that my nasal passage is really open, a rare condition that my doctors had only seen in textbooks before me. When I would get a bleeding nose and I would pinch it to stop the flow, the pressure would build up and I would actually start bleeding from my eyes. Ya . . . I know. I looked like something straight out of a horror movie. But the worst thing was . . . my parents would take pictures of me like that. Thanks mom. Thanks dad. After my first five-hour nosebleed I felt hopeless. Ironically, the only thing that got me through this was my family.  

But seriously, the things that really helped me get through this was my family, my stuffies, loved ones, music, humour and most of all positive thinking. I kept telling myself: “I’m going to get through this.” By the way, people at any age can like stuffies. They just don’t admit it. 

While I was in the Alberta Children’s Hospital, and not in isolation, I had so much fun playing games with the volunteers. But I’ll never forget when I first saw the Kids Cancer Care poster. I asked my health care team about it and they told me that they help kids, and their families deal with cancer. Boy, was that an understatement. 

At the end of my third round of chemo, the doctors actually postponed my fourth round for a week, so I could go to camp. But the truth was, I didn’t really want to go to camp. I had been bullied and picked on at other camps. But my parents convinced me that Camp Kindle would be a good thing. It would get me out of bed and would get me active again. So, the day came when it was time to go and I was still really hesitant. But when I got to the registration point, where the buses were waiting, everyone was really friendly and welcoming, and I immediately felt comfortable. I’m so glad I went. Before I went to camp, I had a really strict comfort zone. But the camp counsellors regularly pushed me outside of it—always in encouraging and positive ways. They actually made me want to challenge myself. And I did things I didn’t know I could, things like climbing a rope ladder 40 feet in the air or tackling the high ropes course.  

Funny enough, a year and a half later, I ran into two counsellors Chili and Firework from Camp Kindle. They recognized me immediately even though I had hair now. It made me feel so good to know they still remembered me. Goes to show how much they care.  

Kids Cancer Care has helped in other ways too. The PEER exercise program is one of them. It taught me how to be more athletic and got me up and moving again. I am so grateful, because without it, I wouldn’t have known how to gradually start exercising again.  

 I am also part of the Teen Leadership Program at Kids Cancer Care. They are teaching me to be a better person and how to help more people than I ever did before. I get to learn how to fundraise, volunteer and be a leader. Thanks to this program, I am working towards the Silver Duke of Edinburgh Award and without them I couldn’t have done this. 

The whole time I was in the hospital I went through a rollercoaster of emotions. I started as an introverted little boy going through puberty to someone who lets nurses put suppositories up my  . . .   you know what. I’ve let my parents give me sponge baths, wipe my butt and wash my head. I was positive most of the time, but sometimes I felt really down and that nothing mattered. It’s not all bad, and it’s not all good, but it’s definitely not easy for anyone (my family, me, or even the doctors and nurses).  

Everyone in my family was affected by my cancer journey and we will never forget what happened. Kids Cancer Care helped me and my family so much through all of it. They’re amazing. 

Before cancer, I was reserved and timid, but now look at me! Look at what I have been through and what I know I can do. Kids Cancer Care is helping to shape the person I am today. It just goes to show that people can change for the better. I believe I have.  

Thank you for supporting Kids Cancer Care and making their programs possible for kids like me.  

~ Baylen

It was simply a sore throat… swollen glands…  possibly mono.  How on earth did three visits to the walk-in clinic over Christmas break and two visits to Alberta Children’s Hospital over a sore throat become cancer?  How was it our vibrant, energetic, active, healthy 13-year-old boy Ty’s blood stream was 90% cancer cells? It was acute myeloid leukemia (AML)—not a good kind of leukemia. January 19, 2009 at 1:47 pm our childhood cancer journey began.

That same evening at 8:59 pm, Ty was admitted. Our family hospital separation began. Ty’s little sister (Tanaya) and his stepdad stayed at home, while Ty and I moved into the hospital. Medical staff warned us it would be a long, difficult journey. Ty underwent the protocol for AML, where the high-dose chemo took him to the brink of death several times over the next 6 months. The intensity of the chemo destroyed his immune system, presenting an ongoing threat of infection thus keeping him mostly in isolation and with few days out of the hospital. School was attended in his hospital room, friends were estranged.

On July 31, 2009, he was discharged – cancer-free. June 4, 2010, after feeling ill, a visit to the oncology unit confirmed our worst fear – the cancer had returned. This time holding a bigger threat. Once again remission would have to be achieved and because the intense chemo did not work, a bone marrow transplant was the only option. Finding a donor would be difficult, because Ty was of mixed race (dad black – mom white) the chances of finding a 100% match were less than 5%. By God’s grace, matches were found and a dual cord blood transplant was received September 17, 2010. The transplant was successful! 

Unfortunately, in March 2011 graft vs host disease (GVHD) began attacking: skin, eyes, mouth and lungs. Everything that could go wrong seemed to. He had infection after infection bacterial and viral, fevers often, making hospital stays long and frequent. Outbreaks of the GVHD produced deep painful crevasses in his hands and feet. Two life threatening visits to the intensive care unit resulted in unanswered testing and “perplexed” doctors. During the third visit to the intensive care unit, September 10, 2012 at 4:18 am, Jesus took Ty home. Seven days later would mark two years cancer-free, after that date, the chances of relapse was next to none.

Ty shared a hope for two things:

1. First – That the gold ribbon, for the battle against childhood cancer, be as readily recognized as the pink;
2. Second – That no child would suffer the way he did. 

The few opportunities he had to raise awareness, he embraced with passion. Speaking at a bone marrow drive, he left the audience with the challenge: “If I do this and little kids have to do it, you can do it!”

The only exposure Ty had with camp was in 2009 and his experience was not what I had envisioned.  Ty had been discharged from only three days prior, the expectation for change, independence and fun was just too much too soon. “Mummy,” he later told me, “we have been in a 10’ x 10’ room together for almost 8 months, you just can’t leave me like that.” He had missed the natural separation teenagers experience. Although physically he was 14, mentally he was not.

The Kids Cancer Care Foundation of Alberta holds so much more for families than just camp. Families in the unit continue to be Blessed with supper every Wednesday with fresh warm pizza. Kids cancer parents volunteer their time to serve, to encourage and to bring HOPE. Wednesday was one day of the week that I did not have to worry about dinner, one night in the week we could all eat together as a family, one night in the week… I just knew.

Ty was blessed when we received a call from Kids Cancer Care, inviting him to attend a helicopter learn and fly. We were both surprized and thrilled to learn he actually got to take over the controls and fly! He spent a day attending a PGA tournament held in Banff. The kids got instruction at the course driving range by some big-time names in golf and later personally met several of the players.

I actually am the one who has been the most involved and received the most from Kids Cancer Care.  From pizza night while in hospital to Bereaved Camp 10 years later, Kids Cancer Care has been a lifeline for me. I have received an enormous amount of support and encouragement from Kids Cancer Care over the 11 years being involved. I have attended Bereaved Camp since it started six years ago, it’s a weekend when families who have lost a child are surrounded with others who have lived the same experience. We bond, we grieve, we celebrate and we heal together. Time to Remember was put in place to celebrate our kids who have gone to Heaven. Every September for the past 7 years Kids Cancer Care invites families to join for a “Time to Remember.” They put an amazing amount of thought and energy into this special evening remembering our kids. Most recently I got involved with the foundation on my bicycle. I went from a couch potato to riding 78 km in a day, raising money for this incredible organization. 

In 2009, I became a member of a club I would wish upon no one; however, I have met the most incredible selfless people through this journey. Kids Cancer Care, which was started due to the horrific disease of childhood cancer, has become an amazing support to so many families in so many ways. 

I don’t know why God allows cancer. I especially don’t understand why He allows kids to get cancer.  However, I believe in His promises. I trust He does the best for all His children whom He loves dearly.   He blessed us with this amazing organization who give and continue to give, an organization who directly supports families affected by childhood cancer everyday—thanks to the generous supporters in our community.

2legit2quit (it’s Ty face book “about”)

On August 10, 2019, our then two-year-old son, Luke, was diagnosed with type B acute lymphoblastic leukemia (ALL). His diagnosis was a complete surprise, as he was still active with seemingly unlimited amounts of energy. Before treatment, it was a very common occurrence to hear us say that Luke was the busiest boy out of all four of our sons. What took us in to see a doctor on the morning of August 10th, was increased bruising of unknown origin and small reddish spots on his body, which we quickly learned was petechiae.

The doctor told us to go immediately to the Alberta Children’s Hospital, who then sent us right to the ER. Prior to this, I had a feeling deep down that something big was wrong, but I didn’t let myself acknowledge this feeling. When we were sent right to the ER, my feeling was confirmed. We were triaged immediately. I had taken kids to the ER before, but I always spent time in the waiting room. With Luke we were taken to a room immediately after arriving, which was not comforting.

When the ER doctor came in, you could see on her face that she didn’t have good news. She said she needed to sit down and took a seat. It was a crazy, intense few weeks dealing with the shock of our child’s cancer diagnosis, while also learning all the information required as parents. Our oncologists and nurses were excellent at guiding us. We were told to think of this as a new beginning because everything was about to change.

Four days later, Luke began his induction stage of chemotherapy. We went with him to the operating room where he was anaesthetized. Luke had a bone marrow aspiration, a biopsy and a LP (lumbar puncture). The cardiologist also installed an IVAD (internal vascular access device) into his chest.

This led to our first encounter with Kids Cancer Care as they host Wednesday Pizza Nights at the hospital. Luke had just come out of surgery with his brand new IVAD and had his first dose of chemo. He ate a whole piece of pizza with a huge smile on his face.

On day eight of his treatments, a blood sample was taken for analysis to see how quickly his cancer was responding to treatments. Unfortunately, it was not responding as quickly as we were hoping. His blast cell count was above the MRD (minimum residual disease) threshold for low and standard risk patients. His diagnosis was elevated to a high risk and our very busy boy slowed down quite a bit.

Luke’s 29^th day bone marrow sample showed that he was still MRD positive, by the narrowest of margins. To be considered in remission, he’d need to have less than 0.01% cancer cells present in his bone marrow sample. Luke’s number was 0.01%. We were really hoping for less and his risk was elevated again to very high-risk ALL. Thankfully, he was still considered a chemotherapy candidate and continued on to the next stage of chemotherapy – the consolidation phase.

Luke began consolidation, which meant he had a lumbar puncture every Thursday for four weeks to receive chemo in his spinal fluid.

During this time, we were introduced to an exceptional program, Hospital at Home, where a pediatric oncology nurse comes into our home to administer treatments. The program made a huge difference in our life.

In early December 2019, Luke had a fever and we went to the unit for bloodwork. Luke was severely neutropenic. This meant that his white blood cells, which fight off infection, were dangerously low. Because he was neutropenic and in the middle of IV chemo treatment, they admitted us that night and began IV antibiotics.

Luke had a high fever the next morning and his hemoglobin count was down even lower. He received a blood transfusion and we found out that Luke had respiratory syncytial virus. He was still very lethargic even after the blood transfusion, but he had perked up a little bit, which was good. After a week of antibiotics, sleep and steady improvement, we were able to go home.

Luke’s ANC (absolute neutrophil count) was not high enough to begin treatment prior to Christmas, so we didn’t have any planned hospital trips until the end of December. He had many delays throughout his treatment due to his ANC, which was quite worrying and frustrating. We considered it a gift to have Christmas at home with a break from chemo for Luke. He was mostly full of energy and he was able to enjoy Christmas at home without feeling the intense effects of chemo. We very were thankful for that family time.

By the end of December, Luke’s counts were high enough to resume the next phase of treatment. On the evening of December 31st, our primary oncologist Dr. Anderson told us the results were back. Luke was in remission!! What a relief to not have his risk category downgraded again!

He was able to continue on the very high-risk treatment protocol, which we knew would be a long and hard journey. If all went well, within three years he would be done treatment. We had received the best news to finish off 2019.

Luke started to have side effects from the chemo treatments, including very painful mouth sores and sensitivity to light. He was tired and we had lots of cuddle time. Luke turned three in early January 2020. It was a wonderful day filled with many laughs and joyful moments with his three older brothers.

Between January and March 2020, Luke had four planned 48-hour hospital stays. These ended up being four- to five-day stays due to various complications. It was hard being away from the rest of the family, but since it was pre-COVID-19, Luke’s father Pat, his brothers and other family members could visit him at the hospital.

Shortly after the COVID-19 pandemic was declared, in April 2020, Luke was admitted to the hospital for a fever. This was our first hospital stay where we were limited to only one parent and no visitors. Pat and Luke’s brothers, dropped us off at the hospital doors and we began our COVID-19 screening. It was in stark contrast to our previous hospital stays where we had lots of support and company.

Luke was in pretty rough shape. Our doctors thought it would be a good idea to begin TPN (where he is fed through his blood stream). They didn’t see his mouth sores getting better and they wanted to get a jump on the TPN as it gradually needs to be increased.

This first stay where he had no one but me to play with was tough. Luke was very sleepy and quiet and not himself at all. Once in a while he would perk up and chat on FaceTime with his brothers and dad. He really wanted to go home to play with them. You could tell he was in pain. It hurt to swallow and talk, but he wouldn’t ever admit it. He is such a brave, patient and wise little dude.

In the spring of 2020, we had so many delicious meals delivered to us by volunteers through Kids Cancer Care. It was a huge help, especially since everyone was in lockdown due to COVID-19 and our prior amazing support system was unable to assist us.

The summer of 2020 was a hard time for Luke and our family. He endured a lot of chemo and it was intense. For most of the first year of Luke’s treatment, he had a cavity that we had been trying to have fixed, but between low blood counts and mouth sores, we had to cancel four or five times. Between our oncologist giving the okay and our dentist offering to come do surgery whenever it worked for Luke, we finally got it done.

Luke also had a long chemo infusion that same afternoon. We spent three hours in the clinic, but by this time, he was just wanting to go home. With lots of help from our wonderful nurse Beth Ann and from child life, we made it through that long day.

Pat and I told our boys that we were having a party on the one-year anniversary of Luke’s diagnosis. They were a bit confused by this, not surprisingly, but we explained that his diagnosis changed our lives forever. We were celebrating Luke’s, and all of our, perseverance, faith, courage and strength in the face of a very unexpected mountain of a challenge.

Over the summer of 2020, during his last treatment phase and before maintenance treatment, Luke had a fever 48 hours after his chemo every single time. This required going to the unit for him to be tested. Depending on his results, we would either be able to go home after a dose of antibiotics or we would be admitted to the unit for varying lengths of time.

August 10^th was the one-year anniversary for Luke and our family. We ended up needing to be in clinic, but we were able to have the party when we got home later that day.

We then went in at the end of August 2020 for Luke’s last treatment prior to the beginning of maintenance. We believed maintenance would hopefully be a bit less intense and much more predictable. Unfortunately, Luke developed a fever and he had to be admitted once again. He had another dreaded nasal swab and tested negative for COVID-19 a seventh time.

Luke began maintenance in September 2020. Maintenance is a three-month cycle that just keeps repeating until his last treatment in December 2022, three years after he achieved remission.

Luke has gained weight since he began maintenance, has higher energy levels and is more playful than before. He began a therapeutic exercise class called PEER through Kids Cancer Care. PEER has been very healing both physically and emotionally for Luke. He always asks when he can go again.

Through Kids Cancer Care we were able to spend Thanksgiving 2020 at Camp Kindle. We had the whole place to ourselves. It had been our first family trip out of Calgary since diagnosis. It was a beautiful weekend for our family.

The first bit of maintenance involved more hospital visits as we tried to find the appropriate treatment for Luke. To this day, Luke still plays hard whenever he gets the chance!

Luke was at the clinic the day before his fourth birthday and Cindy, our lovely child life specialist, and our great nurses had a little birthday celebration for him. Even as a newly minted four-year-old, Luke is absolutely one of the most courageous people we’ve ever known.

The first two and a half months of 2021 were mostly a blur for us. Maintenance wasn’t going well and Luke wasn’t himself most of the time. We weren’t sure what was causing his discomfort. Normal activities seemed to take a big toll on him and he became exhausted and very irritable. It was difficult for everyone. Our oncologist scheduled Luke for an MRI to try to determine what was causing him pain.

Luke was a total superstar and did awesome in his MRI! Kim, the child life specialists from Kids Cancer Care and the hospital, and Caro, the exercise specialist with Kids Cancer Care, put a lot of energy and love into helping prepare Luke for his MRI. Thankfully, it was good news; the MRI came back normal.

We were able to go back to Camp Kindle again in early February. Luke resumed attending his PEER exercise class with Kids Cancer Care since they opened back up for the one-to-one PEER sessions. Through this class, his confidence has been greatly boosted after cancer treatment as clinic appointments, hospital stays and side effects had consumed most of his life.

The support from our family and friends was nothing short of miraculous. We were given so many meals, help with our other children, grocery shopping and so very many donations. We are overwhelmed with all the love we were shown by those closest to us, those we have never even met and everyone in between. The beauty of humanity has never been so evident to us as it has been these last 19 plus months.

Our older boys Malcolm, Dominic and Thomas have been huge champions for Luke and they too have been involved with Kids Cancer Care.

The people at Kids Cancer Care are truly awesome. They not only support the child with cancer, but they also care for the whole family. We are so grateful for their continued support for our family as we soldier on in this new life.

~ Erin, Luke’s mom

Our journey began in August 2017. We picked up Jocelyn from science camp in Drumheller when we knew something was not right. After several visits to the clinic over two weeks, we noticed Jocelyn progressively getting worse. 

She was very pale and weak and just felt crappy. On August 13^th we took Jocelyn in for routine blood work, and then again on the 17^th at the walk-in clinic. We took her in one more time on the 21^st for a glucose fasting test because the doctor thought she could be diabetic. On the 25^th we met with an endocrinologist who instructed us on how to use a glucometer and was going to send us home. Our intuition kept telling us that something was wrong, so we asked the doctor if it could be something else since she did not look or feel well. 

The endocrinologist examined her one more time and advised us to take her for more blood work as she agreed that Jocelyn did not look well. We headed to the urgent care clinic where her blood count indicated she likely had leukemia. Jocelyn was transported by ambulance to the Alberta’s Children Hospital. 

Not even the emergency doctor at the children’s hospital could believe that she was cracking jokes with a hemoglobin count in the 30s!  

A few days later, our world turned upside down. Jocelyn was diagnosed with leukemia. We spent the next few weeks living at the hospital. We had to learn an entirely new vocabulary and so many new procedures. All the different chemotherapy drug names, lumbar punctures, bone marrow extracts, and surgery for the IVAD placement were overwhelming.

Even after we could go home, we had to keep learning about the different assortment of pills, instructions and clinic appointments. But we never let it stop us from fulfilling responsibilities at home and work. 

Through all the phases of treatment and the different challenges that each brought, Jocelyn always grew stronger. As she entered her interim maintenance phase over the holidays, one of the more difficult periods of her treatment, I described it to my friends as brutal and I wasn’t the one going through treatment. At the time, we would stay at the hospital for three or four nights while we waited for the four cycles of high-dose chemotherapy to clear her system before going home. 

But the relief of finally returning home sours quickly. The treatment kicks in and starts hitting hard. I was not prepared for the reality that was: Go to hospital, get treatment, come home and watch Jocelyn weaken to the point where I would wake up and check that she was still breathing. But she always stayed strong.  

In the final months before reaching our goal phase, long-term maintenance, it was difficult for Jocelyn and challenging for us. Procedural anxiety alongside mental and physical strains followed us during every visit. But achieving long-term maintenance was all we were focused on. 

As we went through each phase, Kids Cancer Care was there for us. From the Pizza Nights where volunteers would serve pizza to exhausted and emotionally drained kids and parents, to the PEER exercise program where Jocelyn could blow off some steam and rebuild her strength through exercise. 

It was wonderful to see Jocelyn laugh, have fun and push herself with people who understood. It was not easy to convince her to go, especially when we’d already been at the hospital for hours of treatment, but she was always better for it. 

They also gave Jocelyn the opportunity to go to Camp Kindle. Although she was hesitant at first, she fondly remembers her time there and would love to do it again. She even told me that ‘Maybe someday, I can become a counsellor and help kids like me.’ 

With all the emotional and mental strain from the procedures, chemotherapies, scans and medical equipment, Jocelyn’s thoughts took a dive. She wondered what would happen with her friends and family if she didn’t make it. Jocelyn was scared to voice her thoughts because everyone was counting on her to make it through. She was isolated from her friends since she had a weak immune system and didn’t know if she would ever get back to her former life. That’s a lot for a kid to carry around inside.

Kids Cancer Care programs helped her feel like a normal kid. She was able to go to summer camp where she didn’t need to worry about getting sick. She was surrounded by amazing volunteers, nurses and kids who faced similar struggles. And she no longer felt disconnected. Kids Cancer Care helped Jocelyn work through all the struggles she faced so she can return to a normal life again. She is now part of the Teen Leadership Program and continues to grow every day. 

Earlier in Jocelyn’s treatment I discovered a charity cycling event called Tour for Kids – Alberta with proceeds going to Camp Kindle.  

As a cyclist, I was shocked that I’d never heard about this event and even more shocked that I registered despite adding 25 pounds of stress eating to my frame! But this was the least I could do to support Jocelyn and other kids battling cancer. I would train and finish this 300-kilometre ride, even if it killed me. If my baby girl could endure what she had, then I could do this ride. If my bike squealed in protest, so be it! 

I know what it’s like. You’re constantly bombarded with ‘please donate’ or ‘please sponsor’ from all corners and causes, but you STILL choose to give. 

Maybe in the back of our minds there is still a lingering fear: “it could happen to me or to someone I love” and god forbid cancer ever strike the heart of your world. 

But I promise you this: if that should happen, Kids Cancer Care will be there for you and your family. 

• Omar Pricca, Jocelyn’s dad 

My daughter Ava was a very active twelve-year-old from St. Albert when she was diagnosed with osteosarcoma in March of 2017 in her right leg. Within days of diagnosis Ava was at the Stollery Hospital and we were given the devastating news that it had moved to both of her lungs.

It’s been a long journey for Ava. Since her diagnosis, she has been through a 29-week chemotherapy treatment plan, had a major leg surgery with a knee replacement, and a double lung surgery, plus two other lung surgeries to remove little tumours.

Ava was doing well in May of 2019 when we went for some routine maintenance scans. It was at these routine scans that we got the worst possible news….. a brand new tumor had developed on Ava’s left wrist. Just when we thought we were past this. It was heartbreaking to be told she would undergo another major surgery to remove the tumor and salvage her hand, plus six more months of chemotherapy. Now at age 14, we knew how hard it would be for our teenage girl to go through hair loss all over again. And on top of this all, Ava’s rehabilitation on her right knee replacement has been difficult. She has limited mobility and has undergone two more minor surgeries to attempt to get the knee moving better. The most recent surgery was August 20th of this year and now she is working hard at physiotherapy.

Our family has come to the realisation that Ava’s journey will truly never be over. First and foremost, there will always be maintenance scans for the rest of her life, and the anxiety that comes around the results. 

However, the one positive thing to come from all of this is Camp Kindle and Kids Cancer Care. Kids Cancer Care’s camp programs are open to families across Alberta. And we are so grateful for them.

One of Ava’s biggest highlights of the year is attending Camp Kindle with Kids Cancer Care each year. This is the one place where her mobility and giant scar running down her leg are not questioned and all the activities can be modified for her. Last year she was at Camp Kindle just six weeks after her major wrist surgery! I couldn’t believe she was able to zip line, because the staff and counsellors were able to modify it for her and make sure she could accomplish her zip lining goal!

Not only does Ava get to enjoy camp, but her four siblings get to attend with her which makes her so happy. Once Ava became a teen she was able to attend Teen Camp at Camp Kindle too. She just loves that time with the friends she has made over the years. 

I know camp is limited right now due to COVID-19, but when it’s safe to do so Ava looks forward to participating in some leadership camps in the coming summers. She has also told me she wants to give back to Camp Kindle as a counselor when she is 18.

Thank you to everyone who supports Kids Cancer Care and Camp Kindle. The lifelong friendships my children have made, and support provided to our family are truly priceless.

– Melissa, Ava’s mom