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Caring for children and families affected by pediatric cancer

I started working in the field of pediatric oncology in 1998. As a University of Calgary nursing student, I did my 4th year senior rotation at the old Alberta Children’s Hospital on Q Cluster. I’ll never forget my first shift there. It was a night shift and I had never seen such sick children. I couldn’t imagine ever becoming comfortable, let alone proficient, with the nursing care they required, nor could I imagine how I could be of any help to the families. But I knew I was home. I knew, somehow, this was my life’s work.

It’s funny, the memories that stick with you through the years. I don’t know why so many of my most vivid memories come from the night shifts. Bringing a cup of tea to the mother of a newly diagnosed child, who left the room, so her child wouldn’t see her fear, her tears; long conversations about the “whys” of cancer – “Why me? Why my child?”; listening to the teenager, who couldn’t sleep at night, talk about his video game and, every so often, as if almost by mistake, his fears about his future.

Most of these questions, I learned, were unanswerable. The point was to listen, to be there, to not be afraid of the sadness and the unanswerable questions. To show up in the face of something terrifying and somehow try to convey to these kids and parents a feeling of peace.
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Catherine Laing with little Connor earlier in her nursing career

Over the course of several years, I worked my way through many of the positions in the oncology program. From staff nurse, to clinic nurse, to research nurse, and then eventually into administration. I used to joke that if you stay put long enough they’ll eventually let you run the place! My many positions and titles within the pediatric oncology program gave me a lot of insight into how the world of pediatric oncology worked and how I could best fit within it.

In 2006, we moved to the new ACH and that quickly became home for patients, families and staff.  Our new building was luxurious and world class, but part of me always longed for the comfort and coziness of the old hospital. My roots were there.

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When it was time to return from my maternity leave in 2010, with much thought and a somewhat heavy heart, I decided to return to the University of Calgary to pursue a PhD. In 2013, I started as an assistant professor in the Faculty of Nursing at the University of Calgary, and I have had the privilege to focus my research program in the field of pediatric oncology.

I like to say I still work in the field of peds onc, just in a different way. Just like the memories I described, I’ve always been most drawn to understand experiences. How do kids and families get through this? What is the experience like? What can we do to make it a bit easier? I like to say I’m interested in the “Whys and Hows” of pediatric oncology. In academic terms, what I do is called psychosocial research. I like to look at ways to make the experience of childhood cancer easier.

cute-lil-camperFor my PhD work, I studied the impact of cancer camp and found that it has profound healing effects on both children and parents. Now,

I’m studying the impact of digital storytelling on patients and survivors as way to further understand the experience of childhood cancer and as a way to teach health care professionals more about the experience, in ways they couldn’t have previously understood.

One child’s digital story hit the Twittersphere last fall and took off. This little guy has dreams of playing hockey professionally and one day meeting Sidney Crosby, so when the Pittsburgh Penguins heard about it, they made one of his dreams come true. He met Sidney after a game in Calgary last fall.

One of the courses I teach in my role as an assistant professor is a 4th year undergraduate oncology course. I vehemently strive to impress upon students that the physical care is actually the easy part; it’s the psychosocial care that’s harder. They laugh at me, a bit nervously, when I tell them to trust me, that they’ll never go home and say, ‘I gave the hell out of those platelets today!’ So in my course, I try to spend as much time on the psychosocial needs and care that come with childhood cancer as I do with the pathophysiology and pharmacology parts, because quite honestly, we’re not where we need to be with respect to understanding, let alone addressing, the psychosocial needs of these kids and families. I’ve learned through my research that it sometimes takes decades for the psychological scars to show. The impact on these children later in life can be unfathomable. I want to work to change that.

 — Dr. Catherine Laing, PhD., Assistant Professor, Faculty of Nursing, University of Calgary

Before Kevin and Cameron Olmats were old enough to understand, their brand new baby brother became very sick. Little Ethan was only three months old, when he was diagnosed with infant acute lymphoblastic leukemia. Although his time on earth was brief, Ethan made a lasting impression on everyone he met—especially his big brothers.

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Ethan at the hospital. Still smiling, even while going through cancer.

Ethan’s brothers meant the world to him. His little face would light up in a smile every time they visited him at the hospital. And, Mom and Dad made sure that was often. From the beginning, they included the older boys in Ethan’s cancer journey, while also juggling work schedules and extracurricular activities to ensure that life for Cameron and Kevin, who were three and seven at the time, remained relatively normal.

It’s an approach they maintain today. They speak openly about Ethan and the loss of his joyful presence.

“During our Christmas dinner last year, we were talking about Ethan and how his next birthday, in May, would have been his first double digit birthday. The big 10!” says Mom, Colleen Olmats. “We talked about what we should do to commemorate the milestone. Ideas were going back and forth and then Kevin said, ‘I know what we should do to make it special and make it mean something. I’ll shave my head in memory of Ethan!'”

That’s when Cameron chimed in, “So will I!” That was it. It was decided.

TheIMG_3029 boys didn’t cut their hair again from that point forward and they started spreading the word about their shave in Ethan’s name. When they discovered that William Aberhart High School was holding a shave event on June 2, Kevin and Cameron joined their ranks.Together, the Olmats brothers raised over $5,000, bringing William Aberhart High School’s fundraising total to over $8,000.

Kevin and Cameron know first-hand the impact Kids Cancer Care programs can have in the lives of kids and families like theirs, so raising money for the foundation was a natural choice for them.

The Olmats first encountered Kids Cancer Care during Pizza Nights at the hospital when Ethan was on treatment. During Weekly Pizza Nights, they met other families on the unit as well as Kids Cancer Care volunteers, whose own children had also been through cancer. These volunteer parents would become lifelong friends, offering the Olmats support throughout Ethan’s cancer journey and beyond.

“They became a lifeline for my parents and Cameron and I,” says Kevin. “It’s hard to talk to friends about cancer when they’ve never experienced it themselves. They try, but they can’t really relate, so they can’t really offer support in the ways you  need it. These friends could. And it was Kids Cancer Care that brought these friends to us.”

The Olmats family soon started going to Cool Yule, Family Camp, Family Ski Days, summer camp and much more, where they found healing and comfort in their darkest time.

I still remember the love I felt from Tracey Huddy [former Kids Cancer Care social worker] as we sat on the stone of the fireplace at Camp Kindle and talked about Ethan’s death,” says Kevin. “I don’t remember the words now, but I do remember she gave me exactly what I needed at that time to feel like I could one day be whole again. She helped me to understand the feelings I was going through and that what I was experiencing was a normal part of the grieving process.”

“Just being with other families like ours has helped us immensely with our healing journey,” says Colleen. “They helped show us we could laugh again without feeling guilty. They helped us to become strong again, to live again and to keep moving forward with our lives–just as Ethan would want us to.”

Thank you, Kevin and Cameron! You are shave superheroes!

And thank you to all the brave students of William Aberhart High School, who shaved their heads and raised funds for young people like Kevin and Cameron, whose lives have been interrupted by childhood cancer.

“Gabriel has had a Mohawk since pre-school. It’s his identity. I don’t know why but he’s always insisted on keeping it. We’ve been encouraging him for years to cut it, but he never would, until now,”–Gabriel’s mom Stephanie Lynn.

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Gabriel’s signature Mohawk even showed up in his artwork. Note the Mohawk blood donor (centre) in the award-winning drawing Gabriel made for the Canadian Blood Services at Survivor Day.

The Mohawk has been Gabriel’s signature look ever since he was a youngster. But about a month before his father’s 50th birthday,12-year-old Gabriel suddenly announced that he was getting rid of the Mohawk.

“I want to get rid of it,” he said. “I want to cut it off at dad’s birthday party and raise money for Kids
Cancer Care.”

Gabriel and his younger brothers Shaine (10) and Darius (8) have been participating in Kids Cancer Care’s camp and outreach programs for years—from Pizza Nights at the hospital when Shaine was on treatment, to fun and adventure at Camp Kindle. Gabriel felt it was time to give back.

“He came up with this all on his own,” says Stephanie. “I don’t know what changed; if it’s because he’s going into junior high next year or if it’s because of all the change we’ve had this year, but something shifted and now he’s done with it.”

As with many Albertans, the Lynn family has had a tough year in 2016. Mom lost her job and Dad has lost most of his contract work. With grade seven on the horizon for Gabriel, maybe it seemed like the right time for a change. Whatever his reason for making the change, Gabriel raised a fair chunk of change for Kids Cancer Care.

“His goal was $500, but he raised $1,275,” says Stephanie. “He wanted to raise enough money to send a kid to camp.”

It costs $1,500 to send one child to Camp Kindle for one week, so Gabriel was very close. You can help Gabriel meet his goal of sending one child to camp, by donating here.

Thank you Gabriel! You’re a shave hero!

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At Kids Cancer Care we pride ourselves on running cost-effective fundraising programs to ensure funds raised and donated goes directly towards supporting kids and families affected by cancer. Through your pledged donation to a shavee in the Shave Your Lid for a Kid!® program, we can ensure you that we are working hard behind the scenes to guarantee your donation makes a huge impact on the lives of those who need it the most.

shave 1The Shave Your Lid for a Kid!® program is sponsored by Trico Homes, 98-5 VIRGIN Radio, The Calgary Sun, Pattison Outdoor and Delmar Hair School. Due to our partnerships with these wonderful companies, we are able to keep program costs minimal, ensuring the money raised goes directly to supporting youth and families affected by cancer. Click here to learn more about where your donation goes. For further information please email syl@kidscancercare.ab.ca.

Thank you for your support of the Shave Your Lid for a Kid!® program.Whether you are a program participant or a donor, your support helps us to fight childhood cancer on four fronts—with laughter at camp, the best care at the hospital, innovative science in the lab and by making brighter futures possible with post-secondary education scholarships a reality.

Click here to watch this year’s Foundation video and visit kidscancercare.ab.ca to learn more about our foundation.

 On Saturday, September 7 Kids Cancer Care hosted our first annual Shave Your Lid for a Kid!® community shave event at the Trico Centre for Family Wellness. 23 brave individuals rose to the challenge of shaving or cutting and donating their hair, in support of youth and families affected by cancer. This brave move not only raised essential funds for Kids Cancer Care but showed moral support for those who lose their hair during cancer treatments.
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Four women generously donated their hair at the event, which will go to Angel Hair for a Kids — a foundation that provides wigs to kids at no cost. Diane V. was so inspired by the event that she decided, on the spot, to cut and donate her hair. She even spent an hour walking around the Trico Centre requesting donations and raised $170—Go Diane!
The event was filled with excitement as Tyler Hall from 98-5 VIRGIN Radio got his head shaved by 13 year old cancer survivor Johann — watch the video here! Some honorable mentions from the event are James D. making a special commute from Edmonton to participate in this event, Western Direct Insurance and its employees donating close to $3000 and to the 10 month-year-old baby who broke a shave record by being the youngest shavee!
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Even Mayor Nenshi made an appearance at the event to thank event participants for their support.
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A special thank you to our shaving experts Rick, Renee, Trish and Jessie from Tommy Gun’s Original Barbershop, who volunteered their services to help shave heads. Click hereto learn more their famous hot shave and new location in Deerfoot Meadows!
Kids Cancer Care would also like to extend a thank you to Trico Homes who provided volunteers to help out on event day as well as eight shavees! Thank you to our promotional partners 98-5 VIRGIN Radio and the Calgary Sun for helping us share our message. Last but not least, thank you Trico Centre for Family Wellness for providing us with the wonderful space to host our event.
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Because of the amazing support of our event participants, donors and sponsors, we were able to raise close to $20,000; $5,000 over our goal! The money raised from this event will go towards Kids Cancer Care’s four programming areas — cancer research, hospital support programs, camp and community programs and scholarships.
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Click here to see photos from event day!
Click here to learn more about the community shave event participants or to donate and help us break $20,000!

 

We’d like to introduce you to the lovely Andrea. She’s making a difference in the lives of children affected by cancer by shaving her lid for a kid, not once, but twice! Read on to find out why Andrea’s hooked on Kids Cancer Care!

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Roses are red
Violets are blue
I’m shaving my head
and I’m asking for donations from YOU! 

If my poetic talent is not enough to entice you to donate to my shave, then keep reading!

My name is Andrea, I am 21 years old and I love dogs (not relevant, but it’s an important thing about me).

On June 15, 2015 I will be shaving off all of my hair in support of the Kids Cancer Care Foundation.

In 2007, I participated in Shave Your Lid for a Kid to raise money for children and families affected by childhood cancer. The first time I did the shave, I did not know very much about the Kids Cancer Care Foundation, but after shaving my head in June of that year, my mom and I were invited out to visit Camp Kindle. I was hooked. Since 2007, I have volunteered as a camp counsellor at Camp Kindle (KCC’s amazing camp) numerous times, as well as I have volunteered at events in Calgary. I am continuously amazed by everyone who is apart of the organization.

I have worked hands on with some of the most amazing children I’ve ever met and their incredible families. I wish I had the words to explain how truly magical Camp Kindle is and how inspiring the campers are. I hope you will take my word for it though, and that you will help me to send more kids to camp. The money that I raise from shaving my head will go towards sending kids to camp as well as cancer research. I have seen first hand the positive impact that going to camp can have, and I want desperately to do what I can to make that possible for as many children as I can. While volunteering at Camp Kindle I have had the privilege of meeting many of the nurses who work in paediatric oncology as well as Kids Cancer Care’s program staff and they all work so hard to help keep these children’s spirits lifted. I want to do whatever I can to support that.

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Please help me in whatever way that you are able to support the most amazing organization that I can think of. Any amount that you are able to donate is immensely appreciated. I am aiming to beat the amount that I raised in 2007 which was $5100! I am also planning some fundraisers over the next few months, so stay posted for information about those!

Thank you in advance for your support. To donate, please visit my shave profile.

Andrea

 

October 31, 2014

One of the perks of Bob’s job with TD is that he often represents the bank at community events. Ironically this is how our family was first introduced to the amazing work of Kids Cancer Care. Shortly after we relocated to Calgary, Bob took Celia to her first Dad and Daughter Gala, a sold-out fundraiser the organization hosts each October. At three, Celia was enchanted by the fancy affair and refused to leave the dance floor where she twirled around, proudly displaying a tiny wrist corsage. Celia begged to add sparkly eye shadow and lip gloss to her formal wear the next year, which was when she learned that not everyone wins a door prize, much to her four year-old disappointment. Last year Bob held onto the tickets as long as possible before accepting that his five year-old date was too sick to go anywhere. Of all things missed during Celia’s illness, the Dad and Daughter Gala seemed to hit Bob the hardest.

Celia and I spent an entire afternoon shopping for the perfect accessories to compliment her simple but pretty blue and purple dress. By the time we left the mall, I was exhausted and Celia could not wait to get home to put on a fashion show. Her favourite find was a hair band with an oversized flower to perfectly cover her bald spot. Of course it was silver, much like the purse, shoes and tights she selected. Paying no attention to price tags, I tried to enjoy the experience, thinking that it could be the closest thing to prom we might ever have. Getting caught up in the girly moment, I sprung for a fancy Christmas outfit as well, treating Celia to her first pair of teeny tiny black patent heels. I laughed to myself, envisioning a holiday photo with Celia looking Sears catalogue perfect next to her grubby brother who would undoubtedly fight me over wearing anything with a collar.

Celia typically shies away from the spotlight, especially when it has anything to do with her having cancer. So, mentally we prepared Celia for the gala, seeking permission to show pictures of times during treatment she might rather forget. Initial resistance led to an important discussion about our family’s responsibility, which seemed to resonate with both kids. By the time Saturday arrived, Celia had just aced a TV interview, which gave her the necessary confidence to follow Bob onto stage in front of more than 800 guests, where she sat up high on a bar stool. I was nervous and proud as Bob began, allowing himself to be so incredibly vulnerable. Only a few minutes into things, when a tasteful image of Bob’s above the heart Be Brave Be Strong tattoo was displayed, the audience cheered. I had planned to look around to observe reactions but instead found myself glued to the little girl on stage, staring up at her dad with so much love and admiration. Borrowing Bob’s seat at the front row table, I was among friends, sandwiched between two amazing dads we met on the Oncology unit of the hospital.

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Bob Yarish and his daughter Celia, complete with blue teeth from Frozen treats, at the 2014 Dad and Daughter Gala.

The Frozen themed gala featured live reindeer, ice sculptures, karaoke, glass jewelry making and more. Celia was especially fond of the pre-dinner entertainment featuring Elsa and Anna as well as the candy bar. Over three hundred thousand dollars was raised to fund pediatric cancer interests, which is amazing. But, based on the standing ovation, I’m willing to bet that what many will remember of this year’s gala is the story told by one father about his unbreakable family and inspiring little daughter. Bob was approached countless times after his speech with offers of support and congratulations. One dad shared that he lost his son Jason five years ago to AT/RT and Bob felt an instant bond of human connection. After someone tweeted to say that he had never been more moved by a story, we couldn’t help but wonder if the audience had been cheated a little. Imagine if they knew that we were days away from knowing whether or not Celia was terminal.

You go through life knowing that certain decisions will impact the course of your life – who you marry, whether or not you get a particular job, or change cities. In all of these examples, you maintain some control, the ability to influence the outcome. Leading up to today’s MRI we could do nothing but think positive, willing the universe to deliver a miracle. Be Brave, Be Strong…we both thought as the phone rang and we were too scared to exhale. Today’s MRI conclusively determined that Celia remains CANCER FREE! The three lesions on Celia’s brain are necrosis (areas of post-radiation damage), which appear stable and may actually be shrinking. In addition, the swelling (edema) surrounding these lesions has gone down since the last nightmarish imaging. We are on top of the world, although too tired to celebrate, or tonight at least. Watch out world, Celia Jane Yarish is unstoppable (and thankfully also completely oblivious to the last six weeks of torture). BBBS

~ Brandie Yarish

“Here in the heart of me, that’s where you’ll always be.” I am told that one of the greatest fears of families who lose a child to cancer is that their child will be forgotten. More than anything, they want to keep their child alive, if not in body, then at very least, in their hearts and in the hearts of others.

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On the evening of September 30th, some 20 families affected by childhood cancer gathered at Eau Claire Market to do just that: honour the lives and memories of children taken by cancer. Not losing sight of the family nature of Kids Cancer Care, Time To Remember was suitably child-friendly with hot chocolate to warm our spirits as kids and parents of all ages crafted lanterns in honour of their lost loved ones.

Each family, each individual, brings their own special meaning to Time to Remember. I brought the only thing I could, a sincere desire to show solidarity with these families. In talking with families, I discovered that the experience of Time to Remember does not begin at 7 pm when they arrive at Eau Claire; it starts in the morning as they begin rummaging through old photos to choose just the right one for their lantern, each photo stirring new memories.

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Time to Remember is a ritual, a rite, that begins early in the day and goes deep into the night. It brings families from all walks of life together to witness and share in their common loss. The symbolism of the warm light of the lanterns cutting through the darkness was not lost on the group meandering through Prince’s Island Park. The procession of families arrived at its destination, the amphitheatre of Market Square, where each family placed their child’s lantern. Gathered around the soft glow of these tiny lanterns, the group shared in a singing of Daniel Lavoie’s, Here in the heart of me. And with those words echoing through the night, Childhood Cancer Awareness Month came to a close.

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Time to Remember is a fitting close to Childhood Cancer Awareness Month, an international initiative designed to illuminate the tragedy of childhood cancer and its devastating wake. With an overall survival rate of 82% for Canadian children with cancer, it is easy to lose sight of the work that remains. And yet, despite huge advances in research and care, childhood cancer is still the number one disease killing children today. So what of the children who do not make it? What of the families who lose these children? While remembering there children, Time to Remember reminds us of the work to be done — a cure for every child. You can easily fall into despondency when considering such tragedy, but hearing the families’ stories and how they have come through somehow offers you a healthy perspective on how best to support them–even if it’s as simple as just showing up.

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I find it difficult to summarize the diverse experiences of these families into one message, but if I had to choose, it would be to always react to life positively and in such a way that honours its fragility and impermanence.

–Blair, childhood cancer survivor and volunteer

PS. You can get a sense of the evening from this photo collage of Time to Remember 2013, created by Monique de St. Croix of Unique Perspectives. We’re working on our photo collage for the 2014 event, so be sure to check back here or on our YouTube channel.

My name is Khadija Samoylove and I have just started a practicum for the fall semester working with teens at Kids Cancer Care. I am currently in my final year at the University of Calgary in the kinesiology program, and I am specializing in exercise and health physiology.

For my first project, I was asked to provide a small report outlining my current understanding of childhood cancer and Kids Cancer Care. I hope to look at this after my practicum and see where I stand then compared to what I know right now.

Cancer has always been a disease that scares me. Through all the research done, we are still not 100 per cent confident that it can be conquered. It is even more frightening thinking about having to deal with cancer as a child. When I think of childhood, I think of drinking juice boxes with friends on the playground and running around to play tag, not awaiting treatment in the hospital.

Through school, I was aware that leukemia was the most common type of childhood cancer, but I was unaware of the fact that lymphomas and brain tumors are also very common, as well as solid tumours. It is however, somewhat hopeful to know that children do respond better to treatment and are often able to survive cancer and go on to live fulfilling lives.

I have always been familiar with the general treatment types: chemotherapy, radiation and surgery. However, I was unaware of how drastic and hard some treatment types are, specifically bone marrow transplants. It is extremely hard to imagine having to undergo such treatment and being kept in isolation for such a long period of time.

Having a better understanding of childhood cancer and how it affects children and parents gives me a better idea of how important Kids Cancer Care is for these families. I was blown away by just how many programs and different aspects of support the foundation offers. It is my firm belief that children and teens of all ages and abilities should have some sort of support system, whether it is through their families or friends or other organizations. Kids Cancer Care is absolutely amazing at providing this. The fact that they have camps, activities, leadership programs, fun nights and simple acts of just giving back is making sure that kids and families affected by cancer have support in every way possible.

The importance of providing such support is immense. From my own experiences, leadership camps and having support throughout my childhood did wonders for my self-esteem and helped shape the person I am today. From that I can understand just how beneficial Kids Cancer Care is for kids who are dealing with much more than I could ever imagine.

I have already learned so much more about Kids Cancer Care and childhood cancer in the first week of being involved and I am looking forward to learning so much more! I am incredibly excited, and honestly a little nervous as I begin getting more deeply involved. I hope to provide the kids I am helping with as much knowledge and positive change as I know they are going to give me. Working over the rest of the semester with Kids Cancer Care is definitely going to be an amazing experience and one that I hope will help point me in the direction of a career path I would like to take in the future.

Most importantly, September is coincidentally Childhood Cancer Awareness Month! It is not too late to get involved and provide a little more joy into a child’s life. We know that the smallest things can make a huge impact, so anything and everything helps. Thank you!

Khadija Samoylove

 

Sherri and her co-worker Ashlee decided to make a positive impact in the lives of kids affected by cancer by shaving their lids for a kid. Sherri knows first hand the affects that cancer can have on a person and the ones who love them. This is her shave story….

On October 9, 2013, I shaved my head for Kids Cancer Care in honour of my grandmother, Mary McKeage and my friend Johan Groneman. Both  passed away in 2013. I wanted to do something to acknowledge how inspiring they were and are to me, especially after their cancer diagnoses. The dignity with which they both accepted their illness was inspiring to me. And, their decision to live life to the fullest was apparent in how they lived the remainder of their lives.

I had no idea the effect this shave would have on me and those around me. My six-year-old daughter is so proud of me that she said she will shave her head for Kids Cancer Care when she’s an adult. My mom cried because she couldn’t believe how brave I am (her words, not mine). My brother donated $1,000 because he was so proud of me and wanted to do something good with his money. Everyone had something wonderful and inspiring and supportive to say to me and my coworker Ashlee who did it with me.

Five days ago, I had my bachelorette party at a nightclub. At one point in the night, I got really sad and took off my veil, garter and feather boa and threw them on the table with tears welling up in my eyes. My friend asked me what was wrong, “Everyone thinks I’m sick and it makes me feel really sad for people who ARE sick,” I said. I’m happy I decided to donate my hair to Angel Hair for Kids to be made into a wig. That night, people came up to me and gave me high fives and bought me drinks. Others thanked me for what I had done and hugged me.

This has been an amazing experience. I feel that I have brought some awareness to this cause and that makes me feel great! I have no regrets.

Thank you to our generous fundraising partners who make our programs and services possible