A Three Day Adventure

Longtime volunteer Diane Exner sat down with Jim, Mel and Ali Skalk to discuss their journey with childhood cancer. They shared with Diane why they volunteer each year for Tour For Kids Alberta, a multi-day cycling event that raises funds for Kids Cancer Care and Camp Kindle.

Diane: Thank You Jim, Mel and Ali for taking a few minutes out of your busy lives to talk with me today, and for all you do for Kids Cancer Care; specifically Tour For Kids. We appreciate all you do. I know that Kids Cancer Care and Tour For Kids is a cause close to your heart, I was wondering if you would mind sharing a bit of your story with us?

Jim: Hello Diane, we would love to share our story.

Diane: How long have you been volunteering with Kids Cancer Care and Tour For Kids?

Mel: We have been volunteering since 2012. This will be our seventh year.

Diane: Can you tell us how you got involved in this particular weekend?

Jim: Once we began to get to know Kids Cancer Care and what they did, we all decided it would be a good place for us to volunteer as a family.

Diane: This weekend is a three-day commitment for both volunteers and cyclists, and days can be long, tiring and a lot of work. What keeps you motivated to put so many hours in, in such a short period of time?

Mel: The three-day commitment was a little intimidating at first. We all decided to find a place amongst the volunteers where we could help, and thought we could to enjoy it, and keep an open mind. When we arrived and didn’t know anyone, it was a bit unnerving, especially when we saw all the super fit riders and their spandex! Seeing the excitement of the other volunteers, their dedication and energy, pulled us along and before we knew it, everyone was like family.

Diane: Ah yes, the spandex. I can see how that would be intimidating. What is the atmosphere like over the three days?

Mel: The atmosphere for the weekend is always electric. The riders can’t wait to get going, volunteers are running to keep ahead, and everyone is thrilled to see old friends and make new ones. We love to ask the riders about their stories.

Diane: What keeps bringing you back year after year?

Ali: Because we love it! This is such a great chance to be around people who want to give back, who are passionate about the cause and allow us to laugh, cry and share our stories with one another.

Diane: If someone wanted to get involved in the Tour Four Kids weekend, as a cyclist or volunteer, what would you tell them they could expect from this event? I’ve heard words like ‘intimate’, ‘family’, and ‘life-long friends’ when people talk about this weekend. Would you agree these would be descriptors from your perspective?

Jim: If someone is interested in joining as rider or as a volunteer, the first thing we could say is you are making a good decision. The riders, even the super serious ones, all help each other. Jeff Rushton will push you up the hills, the mechanics will look after your bikes, the massage therapists will make you feel better, and the road crew will always be there to cheer and make sure you are fed and watered. For the volunteers, you will never work harder, sleep less and come away with the most satisfying memories you will ever have.

Mel: It’s the best feeling ever! The descriptors of “Intimate, family, lifelong friends” absolutely apply!

Diane: I know you have a very personal connection to this event, would you mind sharing your personal story, and how this has impacted your lives including present day? How has it helped through the healing process?

Mel: Our personal connection to this event comes from our son Grant. He was diagnosed with leukemia in February 2011 and of course, Kids Cancer Care reached out to us as they do all families with childhood cancer. We were slow to commit to doing anything with them, mostly because we had such a whirlwind with Grant’s treatment, but after he passed away that September, Kids Cancer Care continued to draw us out. Once we attended a few events, we realized it was a great way to meet people like ourselves who had shared similar experiences. Before long, we decided that it would be good to do something as a family that would allow us to give back, be together and embrace this new family of ours. From the first day, we were hooked. This has helped us heal in so many ways.

Ali: Being able to share our stories and my brother Grant with people, is important to us.

Diane: Your story started seven years ago, and this event has played an important role in supporting you through it. With this year’s event fast approaching July 13, 14 & 15th, what would you say to those folks that are looking for ways to support. How can they help?

Ali: People can get involved by supporting the riders with donations and offering to help before or after the ride.

Jim: If you like to ride, do some training, a little fundraising and join the best bunch of riders in the country.

Mel: And, if you are not up to ride, you can join us volunteering for three days in the Beautiful Rockies!

Diane: Thank you again for your giving hearts, and for sharing your personal journey with us. See you in July!

Ride somewhere meaningful this summer on Tour for Kids Alberta and help send children with cancer to Camp Kindle. If you are interested in registering for Tour for Kids, July 13 to 15, sign up here! 

If you are interested in volunteering for Tour for Kids, please contact Tracey Stahn. 

“He knows he’s not athletic, so he holds back. He’s reluctant to try. But at PEER, he’s free to be himself. He can just be a kid without being different.” – Michael, Joshua’s father

When Joshua watched The Greatest Showman, the tears streamed down his cheeks. His mom believes he felt a connection with the outsiders in the movie because he feels different too.

Maybe the tears came because he was being bullied at school. A secret that only he and his tormentors knew.

Thank goodness Josh has you. With your support, he has found a safe place, where he is free to be himself.

Josh walks with a limp and fatigues easily. The boys at school tease him because he can’t keep up. They taunt him as they lap him in gym class, whispering that he’s a baby and he’s lazy.

None of this is Josh’s fault. But he lives with the painful reality of it every day. It is the fallout of cancer treatments he received when he was five.

One day, last September, Josh was having an especially bad day. It was the first day of PEER (Pediatric Cancer Patients and Survivors Engaging in Exercise for Recovery) and Josh was refusing to go.  With energetic coaxing from his parents, he reluctantly agreed to go. He had the time of his life.

“After his first session, he came out of the gym with the biggest grin on his face,” his mother Victoria says. “I wish we could have done PEER years ago. It’s the best thing ever for Josh.”

When asked if he wanted to go to PEER again, Josh answered with a resounding, “Yes! They’re just like me there.”

PEER helps children affected by cancer to rebuild their fundamental movement skills (e.g., running, jumping, catching and throwing), while also building muscle strength, aerobic capacity, flexibility and balance.

With your support, last September, we were able to expand our PEER program with more weekly sessions. This enabled Josh to go for the first time.

Josh is like many childhood cancer survivors, who fall behind their peers in motor development because invasive medical procedures, treatment-related isolation and permanent side effects make regular activity difficult.

“I know Josh needs to be challenged,” his father Michael says. “But his teachers need to recognize that he has limits and they’re different limits than his peers. PEER is a safe place where Josh can be challenged and have fun.”

Josh is still terrified of his tormentors and only recently told his parents about the teasing – after months of sitting alone at lunchtime and on the sidelines at recess.

His parents still don’t know for sure that the bullying has stopped, even though they’ve had a serious sit-down with his teachers. Next year, he’s going to a different school.

Thanks to you, Josh has PEER to help him through this painful time.

“He’s a different kid at PEER,” his father says. “He walks in like he owns the place. Even if he is sitting out in gym class, at least he has PEER every week.”

By Carolina Chamorro Vina, PhD

As Kids Cancer Care’s exercise specialist, I have the pleasure of overseeing PEER, a weekly exercise program designed for children affected by cancer. In my work as PEER coordinator, I often get questions from parents about exercise and cancer.  Is exercise safe for my child who is currently on treatment? What are the benefits of exercise in children with cancer? My child is too tired to come to PEER today; can we postpone until she is feeling stronger? Where can I learn more about exercise and pediatric cancer? This blog post is written especially for you to help answer some of your questions.

But first a bit of background on PEER.

About PEER

PEER stands for Pediatric Oncology Patients and Survivors Engaging in Exercise for Recovery. It is an evidence-based exercise program designed for kids affected by cancer, which was created in 2012 by a multidisciplinary team of pediatric cancer professionals and exercise specialists at the University of Calgary Health and Wellness Lab.

The objective of PEER is to bring what we know from research into the community to give young people who are affected by cancer, the opportunity to participate in a safe and fun exercise program. PEER will help your child to rebuild their strength, balance, coordination, aerobic capacity and give them an opportunity to catch up with basic fundamental movement skills (i.e., throwing, kicking, jumping, etc.,.)  that they couldn’t learn because of treatment.

Because PEER is a group-based exercise program, it also offers kids the opportunity to socialize with other kids in similar circumstances and helps alleviate feelings of isolation and loneliness.

PEER volunteers

I attend each weekly PEER session on Wednesday evening, along with a team of trained volunteers, who love to have fun. Volunteers are an essential part of the PEER program. Because of them, we are able to make PEER fun and inclusive, while also customizing or modifying the exercises based on the needs and skill levels of each child. All of our volunteers have a background in either kinesiology, medicine or nursing and they receive 15 hours of specialized training in pediatric cancer and exercise.

PEER is designed for three different groups

In 2013, PEER became part of Kids Cancer Care’s Outreach programs. Since then, PEER has grown and changed a lot. Thanks to the support of our generous community, we are now able to offer three unique programs for three different age groups, accommodating kids from age two right up to age 17.  For families living in the Calgary area, I enthusiastically invite you to come and check out our PEER program on Wednesday evenings.

Frequently asked questions

Here are some of the frequent questions I receive. If you have other questions, please send a message in the comment section at the end of this blog post and I will get back to you right away.

1. Why is physical activity so important during childhood? 

Physical activity is a right of every child as stated by the World Health Organization. All children, including those who have chronic health conditions, should have the right to engage in physical activity. Physical activity is an essential component of healthy development for any child. Physical activity guidelines indicate that children need to be active at least 60 minutes every day for healthy physical and mental growth and development. It is important that children develop this healthy behaviour at an early age, as they are more likely to continue with activity, and thus enjoy its benefits, throughout their entire life.

2. What are the benefits of regular physical activity for children?

The benefits of physical activity are immense and they include:

• Better self-esteem
• Stronger bones, muscles and joints
• Better posture and balance
• A stronger heart
• A healthier weight
• More social interaction with friends and other peers
• Learning new skills, while having fun
• Better focus and concentration and greater academic success
• Better brain health

3. Is exercise safe during cancer treatments in pediatric cancer population?

Yes. Research indicates that exercise is safe throughout the childhood cancer experience, with no negative outcomes reported, even in patients with compromised immune systems or those on active treatment. All you need to participate in PEER is a physician clearance form. To ensure participant safety, programs must consider the participants’ disease, treatment stage and related side-effects (such as, compromised immune systems, cardiovascular toxicity, lower level of physical functioning, and muscle mass atrophy). The American College of Sport Medicine recommends that children AVOID inactivity, even cancer patients with an existing disease or who are undergoing difficult treatments.

4. What are some of the benefits of physical activity for children with cancer?

For a child with cancer, the impact and potential benefits of physical activity are extremely important. This is due to the many negative side effects associated with the cancer and its subsequent treatments. For example, after treatment, you may notice issues with balance, fatigue, muscle strength and endurance. Your child may become easily tired or fatigued after a brief period of play. You may also notice changes in your child’s social involvement, confidence, or self-esteem. Physical activity can be a powerful tool to help with all these issues – physical and psychosocial. Early evidence shows that physical activity might even help counteract brain tumour side effect. Physical activity can enhance neuroplasticity and executive function, promoting brain health.

5. Where can I learn more about exercise for my child?

To help parents harness the potential benefits of physical activity for their child with cancer, we created POEM (Pediatric Oncology Exercise Manual). POEM is based on scientific evidence and is a comprehensive and uncomplicated way to learn about the role of physical activity in children affected by cancer. You can download a free copy of POEM here.

6. My child is very fatigued; I can’t bring him/her to the exercise program today.

Fatigue is one of the most common side effects of cancer treatment. Unfortunately, cancer-related fatigue does not go away if you rest because the aetiology is multifactorial. Regardless of their cause, adopting a sedentary lifestyle during this time may worsen the impact of negative side-effects and increase the likelihood of children developing conditions such as obesity, hypertension, diabetes and osteoporosis. I always encourage parents to bring their kids to PEER, even when they are very fatigued. Several physiological mechanisms take place during and after exercise, helping children affected by cancer to feel better, increase stamina and sleep better. At PEER, we are committed to customizing and modifying exercise to make it 100% inclusive and fun for everyone, regardless of their fitness level and treatment side effects.

7. Can I bring my other children to PEER?

Yes! All of Kids Cancer Care’s programs are open to siblings.

8. What does it cost to participate in PEER?

Nothing. Thanks to our generous donors and volunteers, PEER and all Kids Cancer Care programs are offered at no cost to families.

9. How do I register my child for PEER?

To register your child for PEER, please email Mary Phillipo, our family liaison.

I hope this answers some of the questions you may have about your child and exercise. I welcome your questions, so please include your questions in the comments section below.

After years of volunteering with Kids Cancer Care, Blair Birdsell’s impression of the organization hasn’t deviated much from his initial assumptions. As a childhood cancer survivor himself, Blair has witnessed decades of what the organization offers the cancer community. “Though now I have decades of survivorship behind me, I still see myself as on their team,” says Blair.

Contributing to many different roles within Kids Cancer Care, Blair has never shied away from putting in his best in whatever position he’s placed in, whether it be working behind the scenes to help set an event up, or simply manning an information table at an event. Amongst those different roles was the role Blair decided to take on when he became a volunteer at Camp Kindle in 2009.

“Over time, my involvement with Kids Cancer Care introduced me to many families, a group I could well identify with from my own family’s experience with cancer. If the only thing I needed to contribute was my time and best effort, I was happy to give it.

Blair is proud of what the organization has done for the community and is continuously impressed by the diversity that Kids Cancer Care remains to have year after year.

“Because childhood cancer is essentially distributed at random, families affected by childhood cancer come from a wide range of backgrounds. It’s meaningful to me that the volunteer team does as well. Camp would be pretty boring if there were only clones of me staffing it.”

It takes an immensely diverse and talented group of people to fill all the niches that are found at camp and Blair is thankful that Kids Cancer Care continues to find them year after year.

Having made unforgettable memories while volunteering at Camp Kindle, Blair recalls a couple that “really” stood out to him.

“During our SunSeeker trip, the teens were curious to see if we could actually bake bread in the cast iron stove found in the SunSeeker cabin. Waking up to fresh bread seemed like a tempting possibility. Missing some parts, the stove was actually in good working order. The trick would be to keep the stove hot enough all night to be just warm enough to bake bread in the morning. This meant organizing a fire picket. Completely on their own, the teens organized volunteers to get up once and hour to stoke the fire and recorded the order in the logbook.”

Unfortunately in the end those missing parts seemed to be their downfall, resulting in no fresh bread in the morning. Disappointed but not too much so, Blair was proud of the effort the teams put in as well as their teamwork. “That was definitely the bigger accomplishment.”

Blair is continuously impressed by the hard work and determination he finds in teens while at camp. He recalls one summer where he witnessed something that was beyond him.

“While watching a group of teens tackle the high ropes course on a perfect summer evening years ago, it was time for the last three teens to go up and give their best shot at the obstacle. The groups had worked out in a way that the last two teens had been paired with a camper with mobility issues, but who was still positively enthusiastic about getting to the top. This meant a lot of extra work for the other two teens who would have to physically help the third camper up at times. They persevered and eventually, all three of them got to the top. This scene always stuck with me due to how much hard work and determination the two teens displayed in helping the third, but also the fact that they were able to do so with such grace, compassion and dignity.”

Over the years, Blair has taken multiple holidays from his own job just to sacrifice his time to Kids Cancer Care – let’s just say that we’re sure grateful you have, Blair!

“The sacrifices are easy to make for this demographic that I feel so connected to!” says Blair.

When Mike told his mother that he wanted a signed jersey from Winnipeg Jets winger Patrik Laine, Heather couldn’t imagine how she would ever make it happen. She had no plan and she made no promises, but she was determined to make it happen. And, thanks to you, it did happen, in the most unexpected way.

Mike Arthur is battling leukemia—for the second time. Diagnosed with acute myeloid leukemia at age 10, Mike had been cancer free for 16 months when he suddenly relapsed and had to begin treatment again. This time it was acute lymphoblastic leukemia.

A natural leader and gifted athlete, Mike loves hockey, but the steroids and chemo are eating away his bone and muscle mass. With dangerously brittle bones, sports of any kind are off limits to Mike.

“It is hard to see a kid like Mike, who’s been athletic all his life, become so sedentary,” his mother Heather says.

But Mike knows how to turn a bad situation into something good. He’s channelling his passion for playing hockey into collecting hockey paraphernalia. It helps him forget about cancer if only for a brief time.

“He gets excited about the hockey stuff and, for a while, he forgets about the bad stuff,” says Heather.

Mike has amassed an impressive collection of hockey cards, jerseys and sticks since his first diagnosis, so when he happened to mention that he really liked Winnipeg Jets right-winger Patrik Laine and really wanted a jersey for his collection, his mother quietly resolved to make it happen.

It was early November and Heather wasn’t even sure she could get the jersey at all, never mind getting it in time for Christmas. Still, that was a secret goal.

“I reached out to Mary,” says Heather, “and boy can she ever make things happen.”

Mary Phillipo is Kids Cancer Care’s family liaison. As soon as she hung up the telephone receiver, she immediately picked it up again and called Jim Skalk, a volunteer with Kids Cancer Care and Make a Child’s Dream Come True through the Calgary North Hill Lion’s Club.

Jim was as perplexed — and as quietly determined — as Mary and Heather were about the challenge ahead.

“I didn’t know how in the world or who in the world would be able to help me with this, so I started with the people I know,” says Jim, who lost his own son Grant to leukemia six years earlier.

Jim put out his feelers and, after a series of phone calls, he was connected with the Winnipeg Jets. When he learned that the Jets would not be signing again until January, his heart sank. But he persevered.

“I emailed the Jets, explaining I wanted to purchase a jersey,” says Jim. “I shared Mike’s story and asked if they could make an exception and send a signed jersey. Two days later, I received an email and not long after that a FedEx package showed up.”

And that’s how the beautifully wrapped gift box with a Patrik Laine jersey landed under the Arthur’s Christmas tree that year.

“On Christmas morning, Mike opened the box and promptly closed it,” says Heather. “He looked at us with these beautiful eyes and radiant smile: ‘How did you do this?’”

Now, Heather had been trying for months to persuade her son to go Camp Kindle this summer, but like many teens fighting cancer, he was reluctant to attend a camp associated with cancer.

Heather seized the moment: “It was Mary at Kids Cancer Care. You should really think about going to camp because look what they can do.”

Since then, Mike has been out to our spring Teen Camp and we really hope to see him at summer camp. But for now, we’re just happy that someone as big-hearted as Jim is part of the community of people who care about kids like Mike.

Thank you, Jim — and the 500+ volunteers — who give their time so generously each year to help the kids and families we serve.

My journey with cancer began in April 2001. At first, there were very few signs that there was anything wrong with me. But one thing my mom and dad noticed was that I had trouble sitting upright in my car seat. Apparently, if the car seat wasn’t angled just right, my legs would fall asleep and I would start screaming. Mom and Dad thought this was a bit weird but they thought, “He’s two and can be a bit impossible.” They also noticed that I was always crying to be carried upstairs. They figured this was also typical two-year-old behaviour. They figured I was just a bit lazy.

About a week before my diagnosis, we were in Duchess, visiting my grandparents. Mom says I ran across the living room, fell and could not get up. I could not walk.

They took me to a pediatrician in Brooks, where they took X-rays and blood work. The blood work was all normal, so they gave the X-rays to Mom and she brought them to our family doctor in Calgary. He thought it might be synovitis because my sister Kennedy just had strep throat.

Another week of regular Advil doses, every four hours, went by. Mom didn’t want to just keep giving me Advil for pain, but if I didn’t get my regular Advil dose, I was miserable. There had to be something else wrong.

They decided to take me to emergency.

Mom still had those X-rays, so she took them with her. The emergency doctor knew there was a problem right away. A bone scan confirmed that there was a large grapefruit-sized tumour on the adrenal gland of my right kidney. There were also tumours in my femurs, pelvis and ribs.

On Monday, April 21st, 2001, I was diagnosed with stage four neuroblastoma—a cancer of the nervous system.

Dad says everything happened so fast in those first few days. My parents were called into a meeting room with nurses, oncologists and social workers and told very bluntly that I had only a five to 10 percent chance of surviving.

They were devastated.

My cancer treatments started on Friday, April 25th and continued until August. I had seven rounds of chemo altogether.

In September, after I recovered from chemotherapy, I had surgery to remove the two largest tumours in my abdomen.

Six weeks later they started the bone marrow transplants. This involved wiping out all my blood cells with high doses of chemotherapy and replacing them with healthy blood cells. The chemo completely killed my immune system, so I had to be isolated for months. This was really hard for me and the whole family.

Mom says those transplants brought me as close to death as anyone could ever be. Seeing me go through this was awful.

Next, it was radiation.

Mom and I reported to the Tom Baker Cancer Center every morning at 7:15, so I could receive anaesthetic. They needed to be sure I wouldn’t move, so the radiation would hit only targeted areas, but who can trust a three-year-old to be still every day for a month?

The last part of my treatment was six months of Accutane. Mom and Dad figured this would be the easy part because we were at home and it was an oral medicine but boy were they ever wrong!  The dose was 100 mg a day, which is more than twice an adult dose.

When I was on Accutane, I was impossible to manage for two weeks of every month. But within two days of going off it, I was normal again. Mom said it was like riding a roller coaster for six months. It was pretty intense.

By August 2002, my treatment was complete. But we still went for regular appointments every six months for years.

I have now graduated to yearly appointments at the long-term oncology clinic. This is good news.

We were lucky to live in a city where there is such a strong focus on pediatric cancer. I received excellent care in Calgary and beat incredible odds.

Staying in Calgary meant we could be near family when we needed them most. Grandma Marian moved in with us to look after Kennedy, and Grandma Stephanie worked at Ronald McDonald house at the time. She made so many trips to the hospital because I had thrown up on my favourite blanket again, or because I wanted something to eat that they didn’t have at the hospital.

When my cancer treatments ended, I still had issues and a long road ahead. A fallout of the chemotherapy that saved my life was that I didn’t get all my adult teeth. I’ve had to deal with orthodontics, jaw surgery and braces. I recently finished getting all of my teeth implants put in and, for now, it looks like it’s the end of all those problems.

I also suffered hearing loss and wear high-powered hearing aids, which I will have for the rest of my life.

But even with all these issues, I’ve always lived a pretty active life. My passions are golf and freestyle skiing.

As soon as my treatment started, Kids Cancer Care embraced our family.

My sister has always loved camp and it has played a huge role in shaping who she is today.

While I tried to avoid anything to do with cancer, Kennedy embraced it. She has a special place in her heart for kids with cancer. So at 13, Kennedy embarked on her own mission to help. She shaved her lid for a kid and collected over $8,200 for Kids Cancer Care. I think that was pretty brave of her.

That February, after Kennedy shaved her head, we went on a family vacation in Europe and she wore her bald head proudly—EVEN when she was given keys to the boys’ bathroom.

It was the opposite for me. Cancer really upset me. For years after my treatments, I refused to leave my parents’ side or sleep in my own room. Camp brought back bad memories for me because when I was five, I lost my best friend, Carter, to cancer. I met him at camp. After that, cancer camp was scary for me. I didn’t want to go without him and I didn’t want to go alone, so I stopped going.

Instead, I did other things through Kids Cancer Care like car racing, day camps and was proud to be a Kids Cancer Care Spokeskid for many years.

One summer, Kids Cancer Care chose me to be the official ambassador for the Shaw Charity Classic because I love golfing so much. I got to hang out with Fred Couples. He even bought me a new pair of Eccos and a new driver.

That was a really cool experience.

There’s lots of ways to be involved with Kids Cancer Care. Golf tournaments, head shaves, galas, summer camp, teen leadership and sporting events. It’s a great big caring community that welcomes everyone and meets them exactly where they are.

As part of that community, I also got to be a part of the Teen Leadership Program. We met monthly throughout the school year to develop and practice skills in things like communication, organization, responsibility and giving back through volunteer work. I learned the importance of volunteering to support causes in the community that are close to my heart.

Much of these experiences contributed to me being awarded The Calgary Youth Distinction Award for Volunteerism in 2017. I was also shortlisted out of thousands of people across Canada for the Terry Fox Humanitarian Scholarship.

I am now 19 and currently taking the year off of school and working. In the fall I will be attending the University of Calgary, taking a double degree in business and kinesiology. I also volunteered this winter with Canadian Association for Disabled Skiing. I taught a ten-year-old how to monoski.

I am pretty proud of where I am now, thanks in part to my cancer journey and the support I received from Kids Cancer Care, my friends and my amazing family.

– Campbell Laidlaw

It’s that time of year where you might be feeling overwhelmed or anxious and this is the craft for you – and it’s not just for kids!

Some computer problems in the Kids Cancer Care office inspired a few staff to make some calm down jars and remember that sometimes you need to just take a step back, breath, and watch the glitter swirl! (Our accounting department may or may not be holding my calm down jar hostage right now…)

And of course, this is also a great craft for kids who need an opportunity to calm down. Some parents use these at a “time out jar” where kids need to sit in one spot with the jar until all the glitter has fallen to the bottom. (This requires a little more measuring in the creation process because too much glue could leave these kids sitting for hours…).

So what is a Calm Down Jar you ask? Simply put… it’s a jar full of glitter!

There are many ways to make calm down jars; and lots of variations in materials. For older kids, or adults, it’s fun to make them in glass mason jars. For little kids, it’s better to use plastic water bottles and then seal it up with gorilla glue and duct tape.

Glitter warning! You will get glitter everywhere in the process of this craft! But let’s be real, that’s part of the fun!

Supplies:

• Water bottle or a glass mason jar
• Warm water
• Glitter glue (Elmer’s Galatic glue is my favourite)
• Dry glitter
• Super glue (to seal the bottle/jar)

Instructions:

1. Remove label from water bottle
2. Fill with ¾ warm water
3. Pour in glitter and glitter glue and shake it up really good (it could take a while for all the glue to separate, so just keep shaking!)
4. Fill remaining space with water
5. Seal it with super glue or hot glue gun

Modifications: Make it an “I Spy” activity and have the kids record all the extra objects they put in. Have them find each of the objects on their list.

– Jenna Schwanke
Certified Child Life Specialist, Outreach Specialist at Kids Cancer Care

Aria began facing serious health issues the summer of 2016, at 10 months old. She was not gaining weight and refusing to eat solid foods. We worked with our family doctor, pediatrician, occupational therapists, dietitians and an allergist to try determine the cause. She was diagnosed as “Failure to Thrive” on November 7, 2016 by a pediatric GI specialist, in addition to discovering that her liver was enlarged. The next morning we were to go for priority blood work and an ultrasound. The ultrasound showed a large solid mass. That afternoon was a blur of phone calls from the Alberta Children’s Hospital. The head of oncology took Aria’s case and, on November 9, 2016, Aria was diagnosed with Stage 3 hepatoblastoma (liver cancer). She was just a couple days shy of turning 15 months old. Hepatoblastoma is a rare and aggressive cancer. Only one in a million children worldwide are diagnosed with this type of cancer per year.

At the time of diagnosis, the tumour measured 10 cm x 8cm x 9 cm and was deemed inoperable. It took up the whole right side of her liver and part of the left. Aria underwent four rounds of chemotherapy from November 2016 to February 2017. On March 1, 2017, Aria had an eight-hour surgery that removed 70% of her liver, the tumour and lymph nodes. She spent three days in the Pediatric Intensive Care Unit and a total of 12 days in the hospital. This was then followed by two more post-op rounds of chemo from March 2017 to May 2017.

It has been a whirlwind, unimaginable journey to walk since Aria’s diagnosis. There were days when I didn’t know how we would get through it. The numbers are almost unimaginable. She has had four surgeries, 44 doses of chemo, 40 days in the hospital, 18 clinic visits, 136+ dressing changes, 62 needles/pokes, seven blood transfusions, four CT Scans, seven hearing tests, six echocardiograms, three electrocardiograms, eight ultrasounds, one chest X-Ray, three catheters, one chest tube and eight nasogastric tube changes. But we did get through it and Aria was declared in remission on May 31, 2017. She has been doing great this summer. We just celebrated her second birthday!

During our time in hospital, we were introduced to Kids Cancer Care through Pizza Nights. We are now registered as a Kids Cancer Care family and looking forward to partaking in programs now that our whirlwind ten-month journey of treatments is over. I can’t wait for Aria to attend SunRise day camps in the next few years and meet other kids who have been on a similar journey.

Aria has the sweetest soul and most hopeful smile. She is a cancer survivor and superhero fighter. She has been the definition of joy, hope, happiness and resilience despite the greatest of challenges. She is our one-in-a-million hero!

– Stephanie, Aria’s mom

Liam had always been a picky eater and one day we were trying to get him to eat carrots. He didn’t want to eat them and got so worked up and upset that he vomited afterwards. Then the vomiting became more frequent and we didn’t understand why. It definitely wasn’t the carrots.

After several stomach tests, ultrasounds, blood tests, we were getting nowhere. Celiac disease, stomach ulcers and many other things were ruled out. Yet we still didn’t know why or what was making Liam sick. We knew something wasn’t right.

One morning, Liam vomited a couple of times, so my husband took him to emergency at the Alberta Children’s Hospital. The nurse looked at Liam and immediately ordered a CT scan. My husband called me at work to tell me Liam was going for a CT scan and I knew I wasn’t going back to work. I did my last timesheet, packed up my belongings and headed to the hospital for a journey we could have never imagined. Liam was admitted that day and the neurosurgeon cleared her schedule for a marathon surgery the next day.”

It’s impossible to describe that day and the day of surgery. While the surgical fellow finished the surgery, the neurosurgeon came to tell us the tumour looked like medulloblastoma, a malignant brain tumour. She said this was not going to be a sprint, but a marathon, so we should take all the help that comes our way. Those days were a blur, but we can remember certain details clearly.

There were some complications from the surgery, but overall Liam’s recovery from surgery was incredibly fast. Liam’s balance was affected from the surgery. It took a few weeks before Liam was able to walk on his own without falling. He also had damage to his vocal cords and couldn’t swallow food or drink. As a result, we were introduced to the world of tube feeding. For 10 months, Liam was almost exclusively fed by a nasogastric tube. Almost immediately into Liam’s recovery, we were overwhelmed with discussions on central lines, lumbar punctures, MRIs, chemotherapy, radiation and side-effects.

The next step was surgery to insert a central line, what Liam called his “noodles.” The central line is a catheter inserted close to the collar bone and into the large vein going to Liam’s heart. The purpose being to prevent the need for Liam getting pokes for everything that was about to come. His central line had to be kept covered to prevent infection and cleaned almost daily. The dressing and constant cleaning caused skin irritation around the central line. As a result, Liam was not cooperative during our daily cleaning. We had to hold Liam down to keep him calm and still as we cleaned the central line.

Liam underwent six rounds of chemotherapy and three stem cell transplants. In total, between surgery and days he received chemotherapy, Liam spent 86 nights at the Alberta Children’s Hospital. For the three stem cell transplants, Liam spent close to the three months in the hospital. For over six months, we did not have a full week away from the hospital. Even when we were not staying in the hospital, Liam had to go in for bloodwork twice a week and for various appointments to check that the chemo wasn’t causing damage to his heart, hearing or kidneys.”

Nothing goes smoothly when going through cancer treatment. An MRI after the first two months showed a spot, which was possible recurrence of the cancer. Liam underwent a second craniotomy to remove the spot. Thankfully, this time the surgery was fairly uneventful and the spot was not a recurrence of the disease.

Following chemotherapy, Liam underwent radiation therapy. This required trips every weekday morning to the Tom Baker Cancer Centre for radiation. Each session required Liam to lie on a bed with a tight-fitting, formed mask over his head and neck locked down to the bed, so there was no movement during the treatment. This way they reduced the possibility of radiating healthy tissue. Normally, children as young as Liam have to be put to sleep via anesthetic to keep them still. Miraculously, Liam was able to lie still for 15 to 30 minutes every day, which meant he didn’t have anesthetic.

What Liam went through during that year of treatment is hard to imagine. We are so thankful for Kids Cancer Care for giving Liam and our family a reprieve from everything we went through. The weekly Pizza Nights at the Alberta Children’s Hospital provided an avenue for us to talk to other people and get a break from the hospital room.

Kids Cancer Care events, such as the COP Ski Day, Halloween Howler, etc., are very special to our family. The volunteers for Kids Cancer Care are special people and bring huge smiles to our faces. They even understand how important it is to provide siblings extra special treatment. Liam’s younger sister Madison absolutely loves going to Kids Cancer Care events with Liam.

While Liam is now nine years old and cancer-free, he still lives with debilitating side-effects. Due to the treatments he received as a toddler, he has issues with his balance and motor skills. His working memory and brain processing speed have also been impaired. Due to this, Liam requires a lot of repetition to learn. Unlike most kids his age, every time he learns something new, he has to go back and re-learn the fundamentals. Liam knows he is falling behind his peers. It’s heartbreaking to watch.

Kids Cancer Care has stepped up and been our lifeline when it comes to Liam’s education. Every week, Liam and his tutor Diana meet for one-to-one tutoring sessions through Kids Cancer Care’s Education Support Program. They work on his math and reading skills. They even use his favorite Lego players to make learning fun and have friendly competitions around math problems.

Diana also works with Liam’s school teacher to identify areas they can improve upon during their sessions. Thanks to Kids Cancer Care, we have seen an improvement in Liam’s school work, and we have noticed that his confidence in learning has grown.

Liam is also improving his balance and motor skills in Kids Cancer Care’s weekly PEER Program, a specialized exercise and rehabilitation program for kids affected by childhood cancer.

And of course, where would we be without the amazing Camp Kindle! Liam attended his first Kids Cancer Care camp the summer after treatment. It was the first time Liam did anything away from Mom and Dad. Liam loved everything about camp. Everyone at Kids Cancer Care was amazing and made us feel completely comfortable leaving Liam with them. Liam and Madison have attended SunRise, which is a day camp in Calgary, and for the last night, they slept overnight at Camp Kindle. We never imagined Liam would do it, but he did! The friends that Liam has made at Camp Kindle are friendships that will last a lifetime. There is a shared bond and understanding of what they have gone through during and after treatment.

– Karla Gould, Liam’s mom

September is Childhood Cancer Awareness Month and Kids Cancer Care is joining pediatric cancer groups from across North America to draw attention to the tragedy of this disease. We invite you to take a stand in September and show kids like Liam you care by making a one-time gift or by signing on as a monthly donor. 

Our journey with cancer began long before we ever realized we were on it. For about a year before his diagnosis, our son Joel, who was just nine at the time, started having dizzy spells, severe migraines and frequent vomiting. We were perplexed and thought it may have something to do his balance or his vision or spinal alignment. Then, one day I noticed he was watching TV with one eye closed. I asked him why he was doing that and he said, “It’s the only way I can see without having double vision.” I was shocked. We had been back and forth to different doctors, but this was when we really got serious and had a detailed assessment.

Three days after his 10^th birthday, Joel was diagnosed with medulablastoma, a type of brain cancer. It was the darkest day of our lives and the first time Joel ever his father cry. The mass was the size of a kiwi fruit, but the good news was that it was a solid tumour and it was operable.

Now we knew we were in for a long journey, but we had no idea of the magnitude. We thought a cancer diagnosis meant surgery, chemo and/or radiation treatment. After that, you are either a survivor or you are not. We soon found out that’s really just scratching the surface of the whole cancer journey.

They removed the tumour on March 19^th, 2009. The scariest part for Joel was waking up after the surgery and not being able to move, talk, eat or go to the bathroom. He also experienced a condition called cerebelar mutism, where he was unable to speak for three weeks. Joel also had partial paralysis on his right side and would spend hours staring at the ceiling.

Because of the nature of his cancer, Joel had to undergo a stem cell transplant. During transplant, a patient receives severely high levels chemotherapy and radiation to wipe out their white blood cells, so they can replace them with new healthy blood cells. Sometimes in a stem cell transplant, the patient ends up being their own donor, which was the case for Joel.

Prior to chemotherapy, the medical team at the Alberta Children’s Hospital harvested 350 million stem cells from Joel and collected them into four bags. The hardest part for Joel was lying perfectly still for two whole days while this took place. He had to be still for 48 hours straight! His body would become numb from lying still. This earned Joel the nickname the Polish Prince at the hospital, because of our polish background, but also, as the nurses said, he had already acquired complete self-mastery at the age of 10. After harvesting the stem cells, they froze them, so they could later re-inject them into Joel after each of round of chemo.

During his radiation treatments, Joel had to wear a plastic mask that was formed to fit perfectly over his face. He had to keep his head perfectly still so the radiation rays would target only specific areas of Joel’s brain and not damage healthy tissue. In order to do this, the mask had to be screwed down to the table. Joel had to really concentrate, so he wouldn’t throw up. They placed marks all over his body (with a sharpie!) so they wouldn’t need to realign him each visit. Joel younger brother Eric used to ask him to put tattoos all over his arms, because he wanted to be marked up like his big brother.

Since Joel’s first diagnosis, Kids Cancer Care reached out and embraced our family. Joel and Eric participated in the many activities they offered and spent a week every summer at Camp Kindle. It has a pool, high ropes, a climbing wall and other fun stuff for cancer kids and their families to just get away. Being there showed Joel he was not alone. The kids shared experiences and talked about what they had been through. They developed a unique bond with one another.

Kids Cancer Care also funds a project called the Beads of Courage. It’s a string that you add beads to each time there is a medical event, a kind gesture, a special activity or when you reach a milestone on your cancer journey. For example, the blue ones represent physical, speech or occupational therapy, the pink ones are chemo, but the most interesting are the beads that represent a radiation treatment. They are the ones that glow in the dark! It’s a simple thing, but was very healing for Joel to do.

In November 2009, Joel celebrated what we believed would be the last of his cancer treatments. He’s actually skinnier than his skinny cousin! But he was cancer-free for the first time in years.

In November, 2011 Joel reached another milestone. He was two years cancer- free and considered cured. Joel was on growth hormone therapy, had decreased lung capacity, reduced muscle strength and extremely brittle bones, but he was doing well. He was cancer-free. He was excelling at school. He had returned to hockey and was playing with the Bow Valley Fiddlers again.

Joel remained cancer-free for five years when a routine MRI scan revealed tumours in his spine. Joel started back on treatment. But this time, the doctors told us there was nothing more they could do. Joel passed away on October 3, 2015 at the age of 16.

Three days before passing away, Joel insisted on going shopping to buy his mother a birthday gift. By this time, he was in a wheelchair. Before they entered each store, Joel would muster all his energy to pull himself out of his wheelchair, hook arms with his mom and browse with her, laughing and joking together. Joel found the perfect gift for his mother, but it was the last gift he would ever buy.

Among Joel’s many passions was golf. About three weeks before he passed away, our family went golfing in Kananaskis. It was a bitterly cold day. It was raining and blowing so hard the rain was coming down sideways. Joel was fatigued and cold, but he was determined to enjoy himself.

By this time, Joel was 90 per cent numb from the waist down. We had purchased walking poles to help him walk and for balance. Instead of being embarrassed, he was quite proud of his poles and covered them with bright neon stickers.

Secretly, the rest of the group wanted to pack up and go home, but after a quick break in the clubhouse, Joel had bounced back. Smiling from ear to ear, he said: “Mom, I’ve had a snack and warmed up. Now I have a second wind. Uncle Richard got a handicap flag for the golf cart, so we can drive right up to the golf ball.”

After a brief pause, Joel fired up, “Well, what are we standing around for? Let’s go!”

Although it has been so challenging. The experience has forced us to open up and share our burdens with others. We have had an incredible community of family and friends supporting us every step of the way. What kept Joel going the whole time was remembering all the people who love him. Kids Cancer Care showed us we are not alone and played a huge role in helping Joel to have fun, fulfill his potential and maintain a positive attitude right up until the end.

– Ed and Dale Zukowski, Joel’s parents

New insights into medullablastoma
Not long ago, Joel’s treatment was considered radical by most Canadian oncologists. Today, it is considered the most effective and safest treatment for medulloblastoma, curing 80 per cent of children diagnosed with it. Calgary cancer scientists are discovering that medulloblastoma is not really one entity. There seems to be subtypes of medulloblastoma that behave differently from each other and are therefore more or less sensitive to certain treatments. This is explains why reaching 100 per cent cure rate for medullablastoma has been elusive. University of Calgary scientists are creating models of medulloblastoma and other brain tumours, so they can study the diseases and the effects of drugs on them before introducing them to children. Working with these models, medical teams hope to test and safely introduce promising new drugs to kids like Joel whose frontline therapy has failed. New research is vital for children with refractory and relapsed cancers, please support pediatric cancer research.  Click here to donate now.