Amazing Mason

Mason’s journey began in December of 2013 when a large lump appeared on the right side of his neck. I will never forget how my stomach dropped when I saw this mass. It instantly scared me. I contacted my husband Diego at work, right away he could hear the fear in my voice so he dropped everything and we rushed Mason to the Children’s Hospital. They did a few tests, concluded it was simply an enlarged lymph node and sent us home with antibiotics. The next day, the hospital called with test results telling us he had strep throat, so they changed his antibiotics to something stronger. We thought this was a little odd as he had no strep throat symptoms, but we followed the doctor’s instructions.

The pharmacy had only half of the antibiotics we needed, so four days later we went back to pick up the rest. The pharmacist saw Mason’s lump, and alarmed at the mass, she first asked, “Is that what the antibiotics are for?” We nodded yes and she asked if it had gotten smaller. We responded, “No, it is getting a little bigger.” She directed us back to the hospital, because the antibiotics should have started to decrease the lump by then.

Back at emergency, we were told to finish the antibiotics as some take longer than others to take effect. We went home growing more and more anxious. That evening, Mason spiked a high fever and spent the night getting sick. In the morning, the lump was even bigger. We went back to the hospital for a third time that week wanting answers. Something was obviously wrong.

The medical staff at the hospital were stumped. All of Mason’s tests were coming back normal and he was feeling fine. We were referred to an ear, nose and throat specialist who eased our worry by telling us it was not the big bad ‘C’, but simply a swollen lymph node full of clear fluid. Because it was just before Christmas break, it was decided to re-evaluate the lump in the New Year. As we were putting our jackets on to leave, the doctor called us back into the room, offering to give us some peace of mind over the holidays. He offered to prove the lump was just clear fluid by putting a needle in the lump and extracting what was in the lump. So, four of us held Mason down. The needle went into his neck, and again but the doctor could not extract a thing. The room instantly went cold and tense. The doctor quietly walked me back to reception and gave us his fist appointment after the holiday break, while Diego snuggled with Mason, trying to calm him down.

Christmas was cautious. I know that may sound funny; we all tried hard to make the best of the holidays, but in the back of our minds we were terrified. That lump continued to grow and, as parents, you simply fear the worst.

January 8^th, 2014 we met with the ear, nose and throat specialist again. He took one look at Mason’s neck and said it had to be taken out ASAP.

Two days later, on the 10^th of January, Mason had the lump removed in day surgery, a procedure that felt like it took forever. At 2:41 pm we were asked to come into a little office where we were told they had performed a freeze screen test in the operating room and confirmed it was lymphoma cancer.

Mason was six that day in January. Telling a six-year-old he has cancer, what cancer is and what could possibly happen to him was an out of body experience for me. He’s six. How is this possible? He is only six. Our world spiraled out of control. The next eight hours were filled with meeting the oncology team, answering a lot of questions, hearing a lot of information I could not possibly understand and a lot of disbelief.

We were able to go home for a couple of days after that first surgery and before being admitted to the oncology unit. Mason had a lot of questions; we did our best to answer them. But mostly, we snuggled, cried and did our best to prepare for the battle ahead.

The next week, all the tests necessary to determine his complete diagnosis were done: bone marrow, CT scans, ultrasounds, X-rays, countless blood tests and a lymph node biopsy from a slightly larger node on the other side of his neck.

We finally received his complete diagnosis on Wednesday, January 16^th.  Mason had stage 4 Burkitt’s lymphoma. He tested positive for Burkitt’s on both sides of his neck and 5 per cent in his bone marrow. Of course, we jumped on the computer and googled Burkitt’s. Pictures for Burkitt’s are shocking. Researching what our son had and what the treatment might entail kept us up all night. We cried harder and longer that night than any other time; not our son, not our six-year-old baby.

The next morning brought a new determination; there were no options in this journey. We had to win. And with that determination, Team Mason was born. Our family of four, our extended family and our incredible friends all became part of that team.

Mason went through five rounds of extremely intense chemotherapy. Each round brought on different challenges, but Mason never ever quit. He didn’t want to do it for one more second, but he never quit. He was aMazing. He is the bravest person I know.

The Alberta Children’s Hospital is such an amazing place. Not a place any family wants to know well, but we are so lucky to have it here in Calgary. We met many incredible people on unit one: doctors, nurses, families, volunteers and organizations. Being on that unit was humbling to say the least. It really grounded us and made us realize how fortunate we really were. When we first arrived, we thought our world was crashing down; however, when we found out Mason’s complete diagnosis and treatment plan, we were certain Mason was going to beat his cancer. We met so many other families who did not know their future. I can not possibly imagine their fear and pain.

We spent 60 nights at the hospital in unit one. It became our home away from home.

On May 14th, we heard the magical words every oncology family dreams of hearing: “Mason is in remission.”  He then went through his last round of chemo, like a champ. He strolled into that unit, said “Hi” to all the ladies in the nurses’ station, walked into his room and started to set up his bed and room the way he likes it. Through that week, he showed everyone his magic tricks and told them all his jokes, something he never did in the previous rounds. He was in a good space and knew what to expect.

On May 21, 10 days before his seventh birthday, he had his broviac line removed. Forty eight hours later, he was able to lay down in a bath for the first time in months. He lay in that tub until the water went cold. I will never forget the look on his face that day. There was so much peace.

We have spent our days since then trying to find our new normal, finding joy in every day. Although that year was the worst year ever for us, we really are the lucky ones. Our family is whole and we count our blessings every day for that.

One of our normals includes being part of the Kids Cancer Care Foundation of Alberta, an organization we are so lucky to be part of. They include us in so many amazing activities and events, but the very best one of them all is Camp Kindle. This past summer our boys were able to go to camp again. Bennett and Mason LOVE camp. They meet kids who know exactly what life with, during, and after cancer is like. They meet lots of kids and quickly make life-long friends. They swim, hike, sing, laugh and have genuine fun.

Diego and I have also been to Camp Kindle ourselves, once for Family Camp and once for Survivor Day. What a magical place. The peaceful environment overtakes any stress or outside noise in your head. If you ever get a chance to visit, go. You’ll know exactly what I’m talking about.

Kids Cancer Care isn’t just about the delicious pizza they deliver every Wednesday on the unit at the hospital and camp though. This incredible organization has done so much for our family. They filled our freezer with delicious food when Mason was in treatment. They include families in so many awesome Kids Cancer Care events — theatre tickets, sporting events, going to the North Pole on the Polar Express, galas, even golf tournaments.

Meeting other families who have experienced a lot of what we have gone through is also something we truly cherish. We have become part of this incredible family none of us really wanted to join, but we all feel so lucky to be part of. Kids Cancer Care also always include siblings, which is so very important because brothers and sisters go through the horrors of the cancer journey too. They witness many things kids shouldn’t see. Bennett was with his little brother every step of the way, holding his hand and encouraging him every day. Bennett was Mason’s biggest fan. Mason is lucky to have such an amazing big brother.

Another reason we love Kids Cancer Care so much is that they continue to keep us part of the programs and activities even after treatment is over. They know that even when chemotherapy, radiation or transplants are done, our journey along the medical path is far from over.

Hopefully there will be a day in the near future when pediatric cancer is extinct, but until then, organizations like Kids Cancer Care need your support to help families like ours to find peace, joy and love again during and after the horrific diagnosis of childhood cancer. We truly don’t know where we would be without their incredible support system.

We will never be able to thank Kids Cancer Care enough, or be able to express how much gratitude we have for Kids Cancer Care. Thank you Kids Cancer Care for all you do for us and all of the families you take care of.

~Jennifer Rodriguez, Mason’s Mom

I’ve often thought that someday I should go back to the beginning and read and print all the saved emails, print out all the stories I’ve shared on the blog I started to keep friends and family in the loop when Macey was diagnosed with cancer. Writing this piece for Childhood Cancer Awareness Month seemed like the perfect opportunity to start this project. So I printed 176 pages of the blog and then started reading over emails. It brought me to tears. And it brought me back to the beginning. The beginning of what seemed a nightmare.

The little tidbits I read were enough. I’m not ready yet. I will be someday, but not now. I’m not ready to read every word yet. It feels like a long time ago that we were at the beginning, but reading back in time, it also feels fresh—that time of sinking heart, amazing love and the start of a great, big, awful battle.

My ‘give-chemo’ alarm just went off. It’s become so normal, but I do remember the thought striking me many months ago that not every mom has alarms to remind her to go upstairs and administer oral chemo medicine to their now three-year old daughter. I also remember how quickly I went from feeling lost and new to the cancer journey, to feeling like I should somehow comfort others who had just received the horrific news that their baby or child has cancer.

The worst night of our lives was Monday, December 1, 2014. On that night we arrived at the Alberta Children’s Hospital in Calgary with our daughter Macey, who was 21-months old. She had slept the entire day. She also had bruising on her face and body that wouldn’t go away and, over the weekend, she’d had some mild nose-bleeds. For three months prior, she had also had a series of illnesses that wouldn’t let up — an extended hospital stay for what they thought was dehydration/infection, a lymph node infection that landed us in emergency. Macey had stopped crawling and did not like to be put down, probably because of bone pain we were unaware of.

When we arrived at the hospital, Macey was the pale colour of the hospital walls and she was lying over our shoulder like a rag doll. She was limp and lifeless. The triage nurse ushered us in immediately to see a doctor and our hearts felt the impending doom of something serious.

That night of tests was excruciatingly long. It was so difficult to get blood samples. Macey ended up looking like a pin cushion and was poked in every possible location multiple times — feet, hands, elbows, head. They had many people and specialized teams attempting. There were X-rays and tests with names I cannot even remember now. We walked her and rocked her and tried to soothe her.

A lovely doctor came in around midnight and suggested we sit down. I cannot even write this without reliving that life-altering moment and the emotion that came with it. She told us, with tears in her eyes, that our daughter had leukemia. Cancer. Our baby. They don’t belong together. We were devastated.

We didn’t sleep that night and were transferred to the ICU because Macey was having some complications, including pneumonia. It took a few days to isolate what type of leukemia she had and to start treatment. She was so sick that they couldn’t administer chemo until her health had improved. It is possible that if we hadn’t taken Macey in on December 1^st she may not have woken up the following morning. That is how low her red blood cell count was at that point. She was diagnosed with high-risk acute lymphoblastic leukemia and she received her first dose of chemo on December 4, 2014, which was my birthday—one I will never forget.

Not only are those initial days a blur, but also the last year and half. There are some things I remember, such as when she lost her first tuft of hair. I remember the generosity and kindness of family, friends, and strangers. My husband Josh’s office created The Macey Project and showered us with support in practical, financial and emotional capacities. They continue their support today and really seem to understand that the burden of childhood cancer is carried for much longer than at the front end of diagnosis.

Macey spent the entire month of December in the hospital and, later, at a friend’s home in Calgary, so we could be closer to the hospital (a total of seven weeks).We have two boys, Hudson and Sawyer, who were five and four years old at the time. It was difficult for them to have their mom and baby sister gone for such a long time. Even harder than that first month, were the many months to follow where, at any given moment, Macey and Mom were off to the hospital.

Fevers and illness came often and came at inopportune times. The logistical nightmare of childhood cancer is something so real for families. Having to pull yourself away from your boys, who are clinging to your leg in tears, to take your sick daughter to the hospital, is heartbreaking. Missing fun things or planned things or things the boys would have enjoyed became par for the course. For example, in May 2015, I wrote in our blog: “Today Hudson (my oldest) turns 6. And, sadly, we are doing present-opening over FaceTime because Macey ended up at the hospital with a fever.”

After six months of treatment, I wrote: “It has been 6 months now since Macey was diagnosed on December 1, 2014. I cannot believe that amount of time has gone by. If one way of measuring life’s success is based on accomplishments, travel, fun adventures, books read, or miles run, we don’t have too many successes to speak of. But, our yardstick has changed. And, if you measure our success in smiles and strength from Macey, milestones that she has newly reached, and pure survival of our family unit, then I think we are successful. Praise God for getting us to this point.”

We attended the Kids Cancer Care Parents’ Quest for the Cure gala in March 2015 (and we had the privilege of attending again in 2016). At the gala, they played a video — the sad and touching kind of video that makes you wonder why the injustice of kids having cancer exists. It was in that moment that I realized I was living that. We were one of those stories. We had lived a blurry three months of holding a bald baby and watching her suffer and fight. And fight she did. Her strength is inspirational. At that gala one of the speakers was talking to us at the end of the evening and encouraged us several times to not overlook the impact this was having and could have on our boys. That stuck with us and from that moment on we took advantage of all the Kids Cancer Care opportunities we could.

Kids Cancer Care gave my boys a reason to smile, while their parents lived a distracted life. Acquaintances and friends did that too — taking our boys for a day or a night or for a fun activity. They’ve been able to attend many fun things courtesy of Kids Cancer Care, such as camp, Family Ski Day, the Polar Express adventure, and more. Macey even got to experience two days of camp this summer, 2016!

Sawyer and Hudson joined Kids Cancer Care for a week at our SunRise day camp this summer. Macey was sick, so she could only join us for two days.

“Two days with Macey gave me enough magical moments to fill an entire year,” says Jenna Schwanke, childlife specialist at Kids Cancer Care. “Macey’s mom hadn’t planned on her going, because she’d just fractured her leg the night before, but we assured Mom that we had the support to care for her and, if Macey was up for it, we were definitely up for it.”

In her purple tutu and orange cast, Macey was carried in the arms of one volunteer after another. She later joined in on the activities as best she could.

“Amid the pain, she giggled and laughed and became our little hero of the day on Friday,” says Jenna. “I was blown away by the support of her big brothers. No distance was far enough to prevent these little guys from hearing Macey call their names, to which, they came a running and rushed to her side. The three Bangsund kids make up one incredible team and we can’t wait for Macey and her brothers to return for a full week of camp next year.”

There are Beads of Courage that Macey has been collecting since the beginning. This is also a Kids Cancer Care initiative and it is an amazing way to tell her story. It is a visual representation of all that she has endured. There is more treatment left for Macey and yet she already has 500 beads. These beads are different colours and shapes, each representing a medical procedure or milestone such as blood transfusions, needle pokes, surgery, chemo, hospital overnights, hair loss, lumbar punctures, X-rays, MRIs, birthdays, isolation, clinic visits, and more. One day, when she is older, Macey will learn all about her strength, represented by these beautiful beads.

The unpredictability and disruptiveness of life with childhood cancer has been a lesson in disguise for our family. In the very early days we learned that our plans are not our own. We are not in control and the strength we need to brave this journey would be provided in small doses by a force much greater than the strength we could ever muster on our own. We learned to live in the moment in a way that only something like this can teach. Joy could be found in heartache and hope was hidden in the darkness. The support around us bolstered us and helped us crawl through the unknown life-territory we had been forced to travel.

The sensitivity and love of Macey’s brothers is something truly beautiful. I’ve heard her oldest brother Hudson say a couple of times, “I wish it was I who was sick instead of Macey.” I wrote in the blog in September of 2015: “They are learning compassion and patience in a way that no 5- or 6-year-old should have to. I am learning the same. My daughter is learning strength and resilience, while teaching the same to me. She shows the doctors and nurses and strangers love, because somehow she has love to share.”

There were many hospital stays, scares, and dark times. Even with all the support it can feel like a lonely journey. Sometimes hospital stays would be reminiscent of the beginning, her being so sick. She lost her hair, it grew, and she lost it again. Now it is amazing and beautiful and has grown so much! It is almost time for a ponytail. I still remember the day her immune-fighting cells were of a count high enough that I could take Macey to Walmart or Costco and the joy that filled my heart. Oh, to show off my beautiful daughter and not have her isolated from the world! This is a mundane activity that became a great pleasure. Contrast that activity with Macey being on a morphine infusion (through IV) to manage pain, along with IV nutrition to give nourishment, and you see how amazing these small victories are!

This year, we saw Macey take her first steps, which was very exciting. She also climbed our stairs for the first time in July, 2016. Her words are coming now and it is the cutest thing to hear: Music to our ears. She has a mind of her own and lets us know what she needs and wants. Any mess she makes in our home is welcome because it means she is home and healthy and making a mess, like a regular toddler. We are thankful for the messes and we are thankful for how far she has come and the battle she has most valiantly fought so far.

You don’t come through this and remain the same person you were. Things change — perspective, priorities, friendships and more. As I wrote in my blog on July 15, 2016, “Sometimes the joy gets overshadowed, but writing this snapshot today, celebrating Macey, reminds me of all of the good — of how far Macey has come. There was a time not long ago, where there wasn’t a toddler trail of toys all over the house and where hospital stays were more prevalent than milestones. Watching Macey trouble-make, mess-make and noise-make is what dreams are made of. My prayer is to not lose sight of that. Some days the gloom overshadows the joy, but the real miracle is Macey and watching her develop into a delightful, beautiful and loving child.”

Caitlin Joyce, Macey’s Mom

You can view Caitlin’s complete blog on Macey’s journey here

Macey’s photo gallery

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