Maddie’s gratitude

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

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

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

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

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

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

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

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

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

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

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

Imagine the pressure.

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

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

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

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

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

So basically my tumour is famous!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you!

Maddie

View Maddie’s digital story here

Maddie’s photo gallery

I was a registered nurse with many years of experience in child and adolescent mental health when I moved to Honolulu and was offered a position as the Family Support Nurse in the pediatric units at a hospital there. Much of this position involved working with all the children and families who were diagnosed with cancer. This meant meeting them and working with them from the time of diagnosis, through treatment and to whatever outcome resulted. We always hoped for the best outcome, but in the mid- to late 80s, and even today although less so, this outcome sometimes meant being with them while their children were dying or had died and working with them afterwards as they faced learning to live with a lifetime grief.

I have so many memories of those years in Hawaii and the lessons I learned from the children and families stay with me today. I remember playing with John in his secluded hospital room after his bone marrow transplant, when he declared that he wanted his hair to grow back yellow this time, like Auntie Nancy’s. I remember sitting with his mom and dad as they held his body for the last time. Though they did not speak a word of English, nor me a word of Vietnamese, we shared a language no parent wishes to learn.

I remember standing on top of Punchbowl at the graveside, surrounded by Amoe’s family, purple leis and purple balloons, as we watched her ashes return to her great grandmother buried there. I stood with her mom, watching a group of purple balloons break away from the tree and float towards the city of Honolulu and the brilliant blue ocean, hearing her mom say “There she goes.”

I remember, as well, the laughter of kids having fun in the hospital where you might think fun and laughter never happened. It did! And I remember kids leaving the hospital with their futures bright before them. I hear from those kids from time to time still (almost 30 years later). Marsi, beautiful as a teenager with cancer, now married, with children, no cancer!

And Wendylee, whose letter and class photo came to me after I returned to Canada, stays with me still, faded on pink paper.

My work in this area has marked me in so many ways, or more correctly stated, the kids and families have marked me forever. They continue to speak to me as I pursue research in trying to understand and make living better for children and families experiencing cancer. My life’s work.

— Dr Nancy J Moules, RN, PhD. Professor, Faculty of Nursing, University of Calgary, Kids Cancer Care Foundation Chair in Child and Family Cancer Care

Watch a webinar on Nancy’s research here 

Visit Nancy’s University of Calgary Faculty of Nursing webpage 

Nancy’s photo gallery

I started working in the field of pediatric oncology in 1998. As a University of Calgary nursing student, I did my 4^th 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.

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.

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.

For 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 4^th 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

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

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

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

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

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

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

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

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

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

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

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

–Kristyn, Edyn’s Mom

Edyn’s photo gallery

In March 2012 Kids Cancer Care visited Western Energy Services Corporation for a Shave Your Lid for a Kid event that saw six brave co-workers band together to raise funds for Kids Cancer Care. Their motivation to shave it off came from a resilient young girl named Taylor. Leading the shave initiative, Tracey Burgess, recalls Taylor’s story and why Shave Your Lid for a Kid was so important for her to do.

I have a dear friend, who at 37 thought she would never have children of her own. Then along came dear little Taylor, weighing in at 9.2 lbs. She looked perfect – all her fingers and toes. Every parents dream, right? Taylor was diagnosed with neuroblastoma. At first it was a lump the size of a kiwi on her spine; then after multiple hospital visits and testing, Taylor underwent surgery to remove the mass. The prognosis looked good. Taylor now at five months has multiple masses that have sprouted on her spine and a lump that is on her liver and around her heart. This means more testing, hospital stays and chemotherapy. She has already been through 57 tests and surgeries!

Unfortunately there are many children out there with stories similar to Taylor’s. Research requires funding! This comes from people like me and YOU! My hair will grow back. I want to see Taylor GROW UP!!

UPDATE:  Taylor is now 17 months old. Just last week she had a routine MRI and a series of other tests. All results came back negative. The doctors feel she is in full remission, but will continue to follow her until she is at least 18 years old. Taylor is a happy little girl full of life and laughter. She has a full head of hair now, 14 teeth and she walks and talks (lots). All the love and support we have received has helped us through this trying journey. We thank each and every one of you.

My shave donations far exceeded my expectations!!!  I started with a target goal of $3,000 and ended up with donations in excess of $17,000!!! My hair has completely grown back,  “I have a new color and didn’t even have to pay for it!”