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

Jack was a normal 10-year-old boy. He enjoyed playing hockey, downhill skiing, riding his scooter, swimming, camping, hiking and playing with his friends. In the summer of 2014, we realized a long-time dream and relocated our family to Canmore, Alberta. It was a bit of an adjustment for our sweet Jack, but over time, we thought he was settling in fine.
In the spring of 2015, Jack started to seem different. He was experiencing unexplained pains and was very sad and tired. We organized an appointment for him with Alberta Mental Health, but couldn’t get in until early August. He finished his school year and in an effort to boost his mood, we kicked off the summer with a celebratory mountain bike ride on one of our local trails. This ride was followed by trail-hikes with friends and more mountain-biking as we headed into the holidays. Jack finished each outing but seemed more tired as the days progressed and each activity became more of a challenge for him to complete.

Shortly after Jack’s 11^th birthday in July 2015, we ventured off on our annual summer camping trip, which included travel down to Montana and Idaho. Soon after we left Canada, Jack developed massive pain in his back. We debated turning around and going home, but felt the pains were related to his mental health. We tried to manage the pain and kept encouraging him to be active in an effort to help manage his mood. He persevered but we knew he was struggling.

After two weeks away, we arrived back in Canmore to find that Jack’s back pain was not going away. We arranged a doctor’s appointment for the next day. The doctor checked Jack over and then sent him for a back X-ray and bloodwork at the Canmore Hospital. Meanwhile, we waited for the results but suspected the pain was more related to his mental health. That evening Jack said to us, “I hope they find out what it is, but at the same time, I hope they don’t because I think it might be something serious.”

The next day, the phone rang and our lives were changed forever.

Jack’s X-ray showed a collapsed vertebrae and the results of his bloodwork were also concerning. The doctor had already contacted the Alberta Children’s Hospital as he suspected it might be leukemia and we were told to take Jack there right away. It was so difficult pretending that things were fine so as not to alarm Jack, while at same time, feeling like your whole world was falling apart.

Jack was admitted into emergency at the ACH and eventually we met with the hospital’s oncology team. They told us that based on his symptoms they suspected Jack was battling leukemia, but they wouldn’t know definitively until they had the results from a bone marrow test scheduled for the following day. Jack was terrified of cancer and had fainted earlier that year at school at the Terry Fox Day presentation. We knew we had to be cautious with how much information we shared with Jack and how we shared it with him.

It was a terrible 24 hours before the bone marrow biopsy. I stayed with Jack in his room and Mark was able to get a bed at the hospital since the Ronald Macdonald House was full. Our friends graciously brought us food and arranged care for our dog back at our home in Canmore. We tried to keep a positive outlook, but Jack was scared and tired and it was so very difficult not knowing what was to come. They prepared Jack for the biopsy and he was terrified. It is so hard to see your child wheeled away from you, and as special as our health care workers are, they were still strangers to him. The oncologist came to see us during the biopsy and explained that it was challenging to get a bone marrow sample, so they were pretty sure that it was leukemia. Eventually they were able to confirm that evening that our precious boy was in fact battling acute lymphoblastic leukemia.

We were all in a daze and Jack was definitely upset. The days following were filled with questions, surgeries and the start of chemotherapy treatment. Jack didn’t want to hear anything about what was going on with him and we watched as he began to sink into depression. The nurses, doctors and other health care professionals were amazing and they tried hard to lift his spirits but nothing seemed to work. He struggled to move as the collapsed vertebrae caused him so much pain. We were terrified to bring him home, as we didn’t know how we were going to move him through our stair-filled house. We were terrified as we learned this new cancer language and tried to figure out our new normal. We were all so scared and didn’t know how we would get through all of this.

But we did get through. And Jack’s spirits rose when he finally was able to come home.

It’s been a year of ups and downs though. As the initial shock of the diagnosis wore off, there were many days filled with anger, sadness and loneliness. We felt like we were either at the hospital, on the road driving to or from Calgary, or at the gas station filling the car up. It was not the life we envisioned for our 11-year-old boy. He desperately missed going to school, going to a movie or playing with friends. He wanted to play hockey and go swimming. All of this now had to be put on hold.

We tried our best to keep things as normal as we could for Jack. His school enrolled him in online classes, so we started teaching him at home. We took him to hockey practice and his dad held on to him, while he finally gained the strength to skate on his own again. And we took him skiing. We pointed out all of the adaptive skiers on the hill and we told him, “Look at those people with no legs and arms. It’s not stopping them. Cancer doesn’t have to stop you.” And it didn’t stop him. He skied 35 days over the winter, even though at times, he was receiving chemotherapy four days a week! It was the perfect place to be because we could manage his contact with other people —a big concern when your immune system is compromised by chemotherapy. He loved the freedom of being on the mountain and racing down the hill. Skiing was our lifeline.

Our other lifelines were the activities Jack was able to do and the celebrities he was able to meet because of organizations like Kids Cancer Care. Just when we were finding that his mood was low, an activity seemed to present itself, which would completely boost his spirits. The biggest night of his life happened on October 30^th, 2015. It was the only day that Jack’s beloved Montreal Canadiens would be playing in Calgary for the season. We contacted Kids Cancer Care, and through their contacts, they were able to facilitate a meeting with Jack’s favourite players from the team. As we were leaving the Saddledome after the game, Jack said, “I’m kind of glad I got leukemia, because if I hadn’t, I would never have met the Canadiens!”

It’s truly amazing and inspiring to see and meet so many wonderful people dedicated to providing these wonderful opportunities to children like Jack. We have gone to a night at the theatre, ridden the Polar Express, learned to snowboard and cheered on our local hockey and football teams.

And then there is Camp Kindle. Amazing Camp Kindle. Jack’s first camp experience was this past summer, about a year after his initial diagnosis. It was his first sleepover camp and it was nothing short of amazing. After we picked him up, we heard stories continuously for two hours and I don’t think the smile has gone away from his face since! It’s a magical place where childhood cancer warriors can go and be kids and their parents can rest easy, knowing their precious children are safe.

To date, Jack has had over 80 chemotherapy injections and has taken well in excess of 300 pills. Jack’s cancer treatment will be complete in December 2018. It is a long time to be on treatment. He can’t swim in the ocean or lakes and we always have to be aware of his environment. We’re also unsure of what the long-term effects will be on him — how the medications will impact his physical and intellectual growth and his interactions with others. But Jack knows that it’s important to keep fighting and try to raise awareness of childhood cancer. He likes to say, “Cancer. You messed with the wrong guy!” His words are so true. Cancer has not stopped our kid. Cancer has not stopped our hero, Jack.

–Cheryl, Jack’s mother

Jack’s photo gallery

We all have our reasons for supporting Kids Cancer Care.  Mine is my son, Erik. By the grace of God, he is with us today. He is among the lucky ones, who can say that they beat cancer. In his case, not only did he beat cancer; he beat cancer twice!

When Erik was only two years old, he was diagnosed with acute myeloid leukemia. That was just over seven years ago. Like all families of children diagnosed with cancer, we were devastated.

On March 21, 2010, I brought Erik to the emergency department at the Alberta Children’s Hospital, because his leg was hurting. He had also been developing some unusual small bumps on his chest and neck that were turning purple. I remember paying for only one-hour of parking, thinking we’d be in and out in no time. The doctor ran some blood tests and the results were shocking.The reason his leg was hurting was because his bones were expanding from the internal pressure caused by the rapid growth of leukemic cells in his bone marrow.

Erik was immediately admitted into the oncology unit and a team of doctors quickly produced a custom-tailored treatment protocol of intense chemotherapy. That anticipated one-hour visit to the hospital turned into six months.

The Alberta Children’s Hospital, a place we had never even been to before, became our second home. My wife Carol moved in to the hospital with Erik to help provide around-the-clock care.  Our family was instantly torn apart. I visited them every day after work and then returned home to care for our other two boys.

Back then, our oldest boy Alex was four years old and our youngest boy Sammy was only a baby. Occasionally, they could visit Erik. However, because of his compromised immune system, this wasn’t often. Special precautions were often required of anyone entering Erik’s room. This involved removing outside footwear and clothing and using sanitizer. Visitors often had to wear a hospital gown, gloves, a hair net and a mask to prevent what could be a deadly infection because his immune system was so compromised by the chemotherapy.

On September 17, 2010, after six grueling months, we were finally discharged, with the great pronouncement that Erik was in remission — meaning that they could not detect any leukemic cells through blood tests. We continued with frequent follow-up visits to the hospital and numerous additional blood tests over the next year.

On the one-year anniversary of his discharge, we hosted a large celebration, with over 100 people. Erik had beaten cancer and we celebrated loud and proud. AML is an aggressive cancer with only a 50 per cent chance of survival. We felt incredibly fortunate and wanted to share that blessing with the entire world.

After a continued period of compromised immunity and ongoing precautions, our lives slowly returned to normal. Erik started pre-school sometime in January 2011 and returned, with some limitations, to certain extra-curricular activities.

After two wonderful years in remission, our worst fear came true. On December 1, 2012, very early in the morning, Erik climbed into our bed, complaining that he wasn’t feeling well. After a short time, we noticed that he was rapidly losing control over his balance and neurological functions. He lost his ability to speak and then could not stand. The entire left side of his body was effectively paralyzed.

I rushed Erik back to the hospital. They ran more tests and confirmed that the same cancer was back. CT scan images revealed that leukemic cells had completely infiltrated his brain. This could not be detected through his regular blood tests. A spinal tap and bone marrow aspirate further revealed that the cancer had spread throughout his bone marrow and central nervous system.

At this point, the prognosis was grim. I had always believed that if Erik’s cancer returned, he would not survive. I thought for sure this time we would lose our son. The oncologists, on the other hand, maintained a positive level of guarded optimism. Erik was immediately re-admitted and placed on an even more intensive regime of chemotherapy.

The only hope of surviving this relapse was through a bone marrow transplant. Unfortunately, no one in his family was a match for Erik, so they had to search the international stem cell database. Luckily, three perfect matches were found and the process of further testing and screening these anonymous persons began.

After several months of living at the hospital and going through the horrors of treatment all over again, it was time to prepare Erik for the transplant. This involved completely eradicating every living cell in his bone marrow. First, Erik was subjected to radiation every day for a period of three weeks, starting with a period of direct radiation to his brain, followed by a period of radiation to his entire spinal cord and brain and, finally, by a period of full-body radiation.

After this intense radiation, they administered an additional super toxic dose of an ultra potent chemo drug, in order to ensure complete annihilation of the cancer cells. This was also administered directly into his spine. They said that Erik’s body had to be destroyed before they could rebuild him. They literally took him to the brink of death. I didn’t know which was worse, the disease or the treatment. He required frequent blood transfusions, he was taking countless medications to combat the plethora of side-effects, his skin was burned and peeling from radiation, all his hair fell out again, and he lost so much weight, you could see his bones.

On April 19, 2013, we were discharged again. This time, Erik’s recovery was very slow. For more than a year, he had very little energy and could not keep up with his brothers and friends. His weight also remained the same over the next 15 months. Eventually, his energy returned in leaps and bounds and, today, Erik is an active nine-year-old, engaged in many sports and extra-curricular activities.

Erik has come through the worst of it, but like so many childhood cancer survivors, his battles are really only beginning. The cancer treatments that saved his life, left him with learning problems. When Erik was spending precious time at the hospital, he should have been at school learning to read and write.

As a result, Erik fell behind in school, which started to affect his confidence and interest in learning. But last fall, Erik started participating in weekly tutor sessions with a tutor through Kids Cancer Care’s new Education Support Program.

With the dedicated support of his tutor and his mom, Erik is starting to make gains. He’s learned to do double-digit subtractions in math and his reading comprehension is improving. He’s also less anxious about learning, which is key, because he’s more willing to give things a try now. He knows he can get there, if he works hard and focuses. Despite having missed two years of school, Erik completed grade three last June (2016) and started grade four this fall.

We thank God every day for saving our little boy. We never take one single day for granted. We understand just how quickly and unexpectedly everything can change. The night before his relapse, Erik was training for a karate tournament. We were sparring in the living room and he was strong and fierce. Within only a few hours, he had to be carried to the hospital, in a paralyzed state, suffering massive seizures. He had been functioning perfectly, with brain cancer, and no one had a clue.

While we rejoice privately in his survival and hug and kiss and tell each other, countless times a day, how much we love each other, we are reticent to host any type of public celebration. But last July, we did host a celebration after finding Erik’s stem cell donor, a young man named Brent Lewelling from Beaumont, Texas. We flew Brent and his family to Calgary for a reunion and had a great time getting to know this hero who save our son’s life. We celebrated that day in honor of Brent and his generous decision to endure surgery to donate his stem cells and save a boy’s life.

But for the most part, we live with this uncomfortable balance between joyful appreciation and fearful insecurity. We can never again be certain of what is happening inside Erik’s little body or of how much longer we will have together. But, then again, none of us do. That is one of the profound mysteries of life.

So, I say CARPE DIUM! Live every day like it’s your last!

~ Paul Gracia, Erik’s father

View Erik’s YouTube video here

Erik’s photo gallery

Levi was diagnosed on June 8, 2007 with high-risk acute lymphoblastic leukemia. This was shortly after Levi turned 1 ½ years old, a baby in diapers. It was revealed by a simple blood test. This was the start of a hellish journey through childhood cancer.

Levi was diagnosed on a Friday and by Saturday morning he was going in for surgery to get a central line put in. A central line, or Broviac, was surgically placed in Levi’s artery in his chest and the other end came out of his chest. This allowed the hospital staff to draw blood from Levi and administer chemotherapy without poking him with needles every time.

Levi started the first of 5 phases of chemotherapy that Monday. The nurse came into the room with what looked like a Hazmat suit on. The chemo was so toxic she had to protect herself. I could not believe that this toxic cocktail was going to be put into my baby. I was told that I would need to wear protective gloves when I changed his diapers.

We were in the hospital for most of this phase, which lasted about 1 month. During this time Levi went through so much. He had an ultrasound of his heart, to establish a baseline of his current heart condition, because one of chemo drugs can affect the child’s heart. He had a couple bone marrow aspirations. This procedure involves inserting a needle into Levi’s hipbone at the back to extract bone marrow to test for leukemia cells. He endured many blood tests.

Levi started losing his hair about 2 weeks into treatment, so we decided to shave it off, as it was getting twisted around his fingers at night when he slept. He was crying the whole time we were shaving him and, when it was done, I cried too. Now he was bald and looked like a child with cancer; it was real. To this day, Levi likes to wear his hair long, or maybe it’s me. Long hair is the opposite of cancer.

Over the next 9 months treatment was intense. Levi started to feel the effects of the chemo; he got mouth sores, had trouble sleeping, had trouble peeing and pooping. He developed a fever, a rash, lost his appetite, threw up a lot, and became quite lethargic.

The goal of the first phase of chemo was to get the patient into remission and within the first month Levi was in remission, but treatment was far from over. This was barely the beginning. He still had 3 years to go. They said this long treatment plan has the best outcome. It was the only hope we had. We needed him to survive the treatment that was now killing his cancer.

Very early in treatment we had to call an ambulance because Levi woke up quite despondent. He was a rag doll and we could not get him to respond to us. It turned out it his blood sugar was too low; it was at 1.2, which is very low and not far from being in a coma or going into seizure. His doctors thought this was an effect of one of the chemo drugs and not a normal side effect. From that point on, I had to check his blood sugar morning and night, as well as at 3 am, each time having to do a finger poke on Levi. Thankfully we only had to do this for a couple of months. But it turned out not to be our last ride in an ambulance.

One thing we always had to watch was Levi’s blood counts. In particular, his white blood count. If this number fell too low, it would impede his ability to fight infections.To check this, they had to take blood or what we came to call a ‘pokey poke’ and test it in the lab. If the white count fell below 500, he would be what they called neutropenic and would need to go into protective isolation, which meant we would have to avoid contact with others more than we already were. Sometimes Levi’s red blood cells would be low too and he would need a blood transfusion. I always knew when he needed a blood transfusion, as he looked pale and wanted more Mommy hugs. This is one of the major effects of chemotherapy. While it is killing the cancer cells, it is also killing the immune system and therefore putting Levi’s life in danger. A very delicate balance needed to be maintained to be successful. It is a miracle that it works.

With Levi being immune-comprised all the time, he had to miss out on a lot of fun and all the things that kids should be able to experience. This is the saddest part of all for kids who have to go through cancer treatment. They miss out on so much. Levi missed important developmental milestones and because he was so young when he started treatment, I wouldn’t see the effects of the treatment until he was older and in school. And this is quite common.

My only focus as a parent at the time was to keep Levi alive and protected. The only thing I could control was his environment and to keep him as healthy and happy as I could under the circumstances. To keep him strong and healthy, I wanted to feed him, but the chemo made him throw up and not want to eat. It was a full time job getting breakfast, lunch and supper into him, only to have him throw it up sometimes. With each new phase of treatment, came a set of new chemo drugs. This meant that any strategies we had developed before to manage, may no longer work, so we had to come up with a whole new set of tricks. Most kids need to be put on a feeding tube because they lose too much weight. We were on the verge of that a couple of times, but Levi managed to avoid it.

While on chemo, they tested Levi’s heart, liver, kidneys routinely and if he ever got a fever, it was an immediate trip to the emergency room, where they did not leave us in the waiting room. We were taken into a room immediately and they took blood to test for infection and he was put on IV antibiotics. Kids have died because of blood infections, while being immune-compromised.

Even though we were not in the hospital full time, we had to go 4 or 5 times per week. Once we were in the maintenance phase of treatment, we were down to 2 or 3 times a month. We called these trips to the hospital for treatment clinic days. Sometimes they had some trouble getting blood out of his central line, so they had to ‘TPA’ it, which means they had to put some blood thinner into his line and we had to wait a couple of hours before they were able to get blood out. This happened to Levi with some regularity and added extra time to the treatments. After the blood work, came the chemo, the steroids, the intravenous antibiotics, the anti-nausea medication and, sometimes, other procedures.

One of the scariest procedures Levi had to go through was the lumbar puncture, or better known as a spinal tap. Levi was given ‘sleepy milk’ (anesthetic they gave him in his line) for this procedure. They would then take some fluid out of his spine to test to see if there were cancer cells hiding in there and in its place they would inject intrathecal Methotrexate (a chemo drug) into his spinal fluid. This got harder and harder for both Levi and I. He really fought the ‘sleepy milk’ and I would stay with him until he fell asleep. Every time, I would say a prayer and give the person doing the procedure a squeeze and say, “Have a good procedure.” Spinal taps are routine for leukemia patients, but they are a very serious procedure. He had a spinal tap about 30 times during his treatment. It never became routine for me.

By the time Levi was finished treatment in September 2010, he was 4 years old. He had spent more of his life on chemo, than he had off chemo. Levi was on chemotherapy for over 1,200 days, longer than some marriages! It is amazing these kids survive. I am still in awe of it.

Along with fighting for his life from leukemia, Levi survived H1N1, numerous viruses (RSV, HMV), numerous bouts of croup and loads of colds. He endured a couple of nose aspirations, many trips to the emergency room, blood transfusions, bone marrow aspirations, a couple of surgeries, lumbar punctures and a bronchoscopy. He’s seen pulmonary specialists, respiratory specialists, speech pathologists and sleep specialists. We did not go to malls, supermarkets, public playgrounds, public swimming pools, indoor public events or play dates. We avoided sick people. Levi had to bathe wrapped in Saran wrap and we used hand sanitizers at every turn. He had a helicopter parent. But he survived. It is a miracle.

I have not experienced such despair in my life. I was scared sleepless most of the time. It was Levi’s courage and the kindness of our friends, family, co-workers, Jamie’s Preschool, Kids Cancer Care and the staff at Alberta Children’s Hospital that carried us through. People have been incredibly generous and thoughtful to us. We have made new friends whose strength in their own struggles with cancer gave us courage and optimism to carry on. We have learned to live life one day at a time. I learned to live in the moment and learned that control is an illusion. I learned to celebrate the small victories. I would be lying if I said I am not scared. Life without chemo to keep the ‘bad’ cells away is like being a tight rope walker without a net, but we have faith that all will be as it should be and we pray for the strength to face what we need to going forward.

Childhood cancer is like war. You struggle through it and miraculously you survive. When it’s over you get up, dust yourself off and assess the damage around you. There is often a lot of collateral damage with childhood cancer. Giving chemo to a child as young as Levi can affect their brain development and their emotional well-being.

We’ve had psycho-educational and neuro-psychological testing done on Levi and they revealed deficits in Levi’s executive functioning, the region of the brain that regulates and controls cognitive processes, such as our working memory, reasoning, problem solving, planning and execution. As a result, Levi is struggling with math and spelling at school — not to mention pretty intense anxiety. It seems so unfair for a child to have to go through all of this and then have other problems afterwards.

When Bryan and I first broached the possibility of tutoring with him, Levi flat-out rejected the idea. But when we broached the idea of tutoring through Kids Cancer Care, he said, “That would be okay.” So he is now seeing a tutor Monday evenings through Kids Cancer Care’s new Education Support Program and we’re already seeing big improvements.

Levi feels comfortable challenging himself during his tutoring sessions at Kids Cancer Care because he associates it with Camp Kindle. This is a safe, friendly place for Levi to push himself and learn, without all the stigma of a regular tutoring service for him. I knew we were on the right track right away. After his first tutoring session, on the drive home, Levi turned to me and said, “I think it’s gonna’ be okay now, mom.”

Levi is 10-years-old now and has been going to Kids Cancer Care camps since he was able – around 3 years old. He has always loved SunRise day camp and is an outgoing kid – you may have noticed!

In 2014, Levi decided to give SunMaker camp at Camp Kindle a try. He had not been to overnight camp anywhere and had barely been overnight with anyone. Things started off really well. I didn’t hear anything from Levi for the first 2 days, but when I called Wednesday night, his counsellor said he’d had a rough day and he was experiencing some diarrhea. I was able to talk to Levi and he was distraught and very anxious, so I did go and pick him up Wednesday night.

Once home and having had a good night sleep and no more diarrhea issues, Levi wanted to go back to camp. At this point, we had concluded that this was not a virus, but rather Levi not going to the bathroom for a couple of days and then everything broke “loose” so to speak. They call this “camp belly.”  “OK”, we said, thinking he would be able to make it the last couple of days of camp and not let this negative experience affect him.

Well Thursday night we get a call from Levi saying, “I can’t do it anymore,” and really crying and upset and wanting to come home. This really is not like Levi to be so emotionally distraught. I knew there was a bit more than homesickness going on. He has had some mild anxiety since he was little, mostly things we noticed at home and, of course, having to do blood work and different procedures. But over the past year, he had really started to become super conscious of his body and his health. Unfortunately this bout of diarrhea was so frightening and, not being in the comfort of his home, really affected Levi to the point of not wanting to go back to camp again.

This experience in 2014 seemed to be the catalyst to more serious anxiety. He worried about any different sensations in his body. This carried over into the new school year and we decided he needed some help so we got him started with a psychologist. He has been doing well and has developed more coping skills and is very aware of his situation. In fact, he is hyper aware and this, in part, is what causes his anxiety.The psychologist believes he has PTSD (Post Traumatic Stress Disorder) from all the years of invasive treatment, and so needs to process all of his experiences.

He has been handling things well so we encouraged Levi to give camp another chance in 2015 and he reluctantly agreed. I talked with the camp personnel (Jenna, Mary and Janessa) and told them all that was going on with Levi and I asked them to let him call home if he needed to. I knew this would help him to have some control over his situation. He was having anxiety that he might have the diarrhea again and have the same experience as last year. He was having anxiety that he might have anxiety, if you know what I mean.

So August 10, 2015, Levi went to Camp Kindle. The first night I get a call, he is crying and more homesick than anxious. I walked him through it and said, “Let’s stay overnight and see how you are in the morning.”  Morning came and Levi is in the clinic trying to convince the nurses that he has a cough and a fever and needs to go home. Orli, the nurse, called and said Levi wanted to talk to me. He is trying to convince me he needs to go home. I try different strategies and let him know that, “If you were sick, they would be calling me to come and pick you up and you don’t need to worry about that.”  After a lot of coercing, he agreed to stay and went to the activities.

I talked with Orli again and asked her if I could get Levi some extra support, especially in the evenings. About an hour later I got a call from Lexi, the head counsellor, and Sophie, Levi’s counsellor, asking me what they could do to support Levi. We talked about all the things I thought would help and they were willing to try it all and said they would be in touch. I felt good that they were really on board and working hard to help Levi. This is awesome support.

That night I got a call from Levi, crying hard and begging me to pick him up. He said “Mom please, please come and pick me up, I can’t do it. I’m a wimp.”  I talked him through this and he said, “Mom tomorrow is Wednesday and that is when I had diarrhea last year.” The anticipation of Wednesday coming and the experience from last year put his anxiety into overdrive and I thought, “If we can get him through tomorrow, he would be able to stay the rest of the week.”  I talked with him intensely and I explained that last year he wasn’t paying attention to bathroom routine, but this year he was and that there should be no issues tomorrow. We talked at length. I am thankful there were no time restrictions on the call. He reluctantly said he would stay the night and that we would talk in the morning.

After my conversation with Levi, I was able to talk with Sophie again and she explained everything that had happened that day and pointed out a few opportunities that she gave Levi to decide things for myself, ex., “Do you want to call your Mom now or wait until after lunch?” So Levi chose to call later, small steps but effective. Sophie said she was trying all the ideas we talked about and thought it was helping. Other than the phone call to me, he did seem better than the day before. He’d had a sad period after lunch, but bounced back and got involved with activities whole-heartedly with the support of Sophie. Just so you know, I was completely struggling at this point as well, because I didn’t want to traumatize Levi with this camp experience. But I knew he needed to conquer this huge fear to move on. If I didn’t feel Levi was supported on the other end, I would not have been able to leave him at camp.

So Next morning came, no call; after lunch, no call; Wednesday evening, no call. So of course I am thinking, “Great! This is a good sign, right?” I decided to call Sophie and she said Levi had a great day. In the morning when he woke up he said to her, “I didn’t miss home and I didn’t miss you.” She said it was funny how he said it. He also said, “I think I can make it to the end of the week.” He got involved in all the activities that day and loved archery and was really getting into the day. Later that evening Levi did call home. This is part of that conversation:

Levi: “Hi Mom, I had a great day today!”

Me: “Wow that’s AWESOME Levi.”

Levi: “I didn’t cry today and I didn’t have diarrhea.”

Me: “Good for you hon, we are so proud of you for hanging in there. I knew you could do it.”

Levi: “Guess what, I did the flying squirrel today and tomorrow I am going to do the wall climb and when you get to the top, you jump off….”

(YIKES, OK Levi. Mommy just wants to know if you are having fun, not all the details ha ha.)

There must have been about 5 more “Mom and guess what…”  I could hear joy and confidence in his voice. He was proud of himself!! He had FUN and was finally enjoying himself. What a huge relief I felt for him and for us. It was so important that he make this turn and get this huge psychological demon off his back.This is big. This is a game changer for Levi. He has gained so much in this week that will give him the confidence he needs to know that he can manage his anxiety and that he can be safe in the world.

We would not have been able to make this breakthrough without the support of your staff and volunteers at Camp Kindle and, of course, the staff in the office, who we regularly talk to. I want them to know they are changing lives at Camp Kindle. Kids can develop and grow with their encouragement, commitment and support.There are small wins and big wins that will help change the trajectory of a child’s life forever. I believe this for Levi.

Thank you for this experience. We are so grateful and “Guess what?” Levi says “I want to go to camp next year!” That is a miracle!

–Cheryl Hamm, Levi’s mom

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend”—Albert Camus. 

Three years ago, Kids Cancer Care and the threat of cancer were far from my mind. I was 13 and my brother was 15 and in the full swing of basketball, volleyball and usual teenage life. It was in February that year that things took a turn for the worse.

Grant hadn’t been feeling well for some time, but he continued to play basketball and go to school. Mom finally put her foot down and took him to the clinic. The doctor said it was mono and sent Grant for blood work. That evening, Mom got a call that changed our lives forever.

“Abnormalities in Grant’s bloodwork. Get to the hospital right away. It could be Leukemia.” Words that still replay over and over in our minds.

On February 12, 2011, Grant was diagnosed with acute lymphoblastic leukemia, cancer of the blood, extremely treatable and a high cure rate. I remember hearing, “If you have to have cancer, this is the one you want.” Treatment would be long — 3 1/2 years — but it was almost all out-patient treatment.

At first, it was hard. Grant was always tired and there were constant visits to the out-patient clinic and a few dreaded admissions to the Alberta Children’s Hospital. But the treatment seemed to be working. He was already in remission after 3 weeks.

I’ll never forget how quickly he seemed to be back to his normal, goofy self. And that gave me hope. Grant was able to go to his grade 9 graduation and we even made it to our yearly family camping trip with no major difficulties.

The next two months were wonderful for him. He shot some hoops, went to the lake with friends, enjoyed golfing with Dad, camping with the family, riding his bike and playing volleyball and football with me — being a normal kid for a while.

Shortly after we came back from holidays, Grant was off to Camp Kindle. It was exciting for him to be with kids who could relate to his struggle, but also to be able to have fun with them outside of our family. When Grant came home a week later, he was a flurry of stories and pure enjoyment. He told us every detail of camp with a glimmer of happiness in his eye. He danced, hiked and rode the giant swing. Camp was an island of solitude amid the hurricane that was treatment and he really enjoyed it. A particular point of pride for Grant was that all the other kids assumed he was a sibling, instead of a patient, because he seemed so healthy and vibrant. He loved the experience.

Not too long after Grant got back in August, he started experiencing incredible pain all through his body. We assumed it was from overworking himself at camp, being the athletic boy he was. Unfortunately, we were wrong. After a period of confusion and minor distress, Grant was diagnosed again, this time with acute myeloid leukemia, a blood cancer that has a poor survival rate in young people. After that, things got hard. He started a new, intense protocol, which meant long periods of hospitalization. There was a 2-week stay in the intensive care unit when he developed breathing problems, and seemingly endless bed-rest. That was a scary time, where things only seemed to be getting worse.

When Grant developed painful skin blisters all over, his doctor ordered a punch biopsy. The biopsy revealed skin leukemia, evidence that the disease was aggressive and fatal. Although there was no treatment protocol for this, we were hopeful for experimental options and a miracle.

One day later, on September 16, 2011, surrounded by family, Grant passed away. His pain was unbearable, even with several pain medications, but he braved it with the strength of character that defined him his entire life. Grant died the way he lived—a leader.

Knowing his time to leave was fast-approaching, Grant said, “Please get everyone here.” Eighteen people were gathered at his bedside when he passed away. There would be no more basketball or skiing or camp for my brother Grant.

For those who weren’t at his bedside, he had another plan. “Please pass me my phone,” he said. I gave him his cell phone and he sent three texts:

To Bret, he wrote: “You’re my best friend.”

To Sydney, a girl he met playing basketball at the age of five: “You are the first and last girl I ever loved.”

To Lauren, he wrote: “You were like a sister to me.”

Cancer is far from unheard of in our world; it’s in movies, creates a plot line on a TV show, and we all know someone who has or had it. But we never expect it to hit so close to home. Cancer isn’t supposed to affect the young, the innocent and vulnerable kids of our world. I think that’s why dealing with all this was so hard and almost surreal. You really have no idea what it’s like until it hits home.

But amid the loss and grief came an isle of hope in Kids Cancer Care. As a family, we were able to find respite in their constant offers of care and support.

I got the opportunity to go to Teen Camp in November of 2011. I’ll always appreciate having the chance to experience what Grant enjoyed so much even for just a little while. I even got to meet some people who knew Grant and it really helped me to hear how much they cared.

Others also stepped up to show their support. My father’s former employer J and L Supply made a large donation to the Camp Kindle Capital Campaign in Grant’s memory. As a result, the tipi village at Camp Kindle is now named the Grant Skalk Tipi Village. The night we blessed the tipi village and unveiled the plaque in Grant’s name was incredible. So many friends and family came out to participate in the ceremony and celebration. We could feel Grant all around us that night. I will always remember it.

Eventually, the community of Kids Cancer Care led us to Tour for Kids Alberta and other events like the Kinsmen Ride for a Lifetime, my dad’s guilty pleasure, where we get to fundraise and volunteer and help make even a small difference. Being able to contribute to this cause, so close to my heart and many other people’s hearts, means so much to me. I hope to keep making a difference someday by becoming a pediatric oncologist.

For those reasons and many more, I am so appreciative of everything the community does to support Kids Cancer Care. I am grateful knowing that so many others care and that they are making a difference.

—Ali Skalk, Grant’s sister

Ali’s dad Jim is featured in our 2017 Father’s Day video:

Kids Cancer Care and Canadian Blood Services have teamed up in the fight against childhood cancer. Over 1,400 children are diagnosed with cancer each year in Canada; many of them needing blood products in order to support their treatments. By donating blood, you are helping each child fight their battle with cancer. It’s in you to give – book your blood donation appointment in honour of Grant today.

Grant’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

“I am sorry, but it looks like cancer.” Seven parents hear this each day, every day, for the very first time, and their lives are forever changed. Our family heard it on January 19, 2011.

Christian had been sick for a few weeks with a cold and persistent fever, low energy, and waning appetite, but on that night I felt a lump in his abdomen and I knew something was really wrong. We spent the night in the ER, waiting on tests and scans and results. In the morning, when the results were official, a random ER doctor walked into the ultrasound room. Christian was watching Backyardigans on the DVD player, oblivious to anything going on around him. She looked at me and told me it was cancer.

I specifically remember dropping to my knees and, as I dropped, the thought popped into my head: “This is what happens in the movies, when parents are told the horrible news. The parents fall to the ground, so I guess this is real.”

Christian was only three years old when he was diagnosed. He had an 18-month-old sister Evelyn and a four-month-old brother Ryan. And I was sure he was going to die. It took two weeks for an official diagnosis of embryonal rhabdomyosarcoma, an extremely rare and aggressive pediatric cancer. A mass the size of a mini-football was residing in the abdomen of my 25-pound baby boy.

Before we even had a definitive diagnosis, Christian had a surgery to put a central line in his chest and a biopsy of the tumour. In the 10 days that we waited for his official diagnosis, he got sicker and sicker.

I remember the day we started Christian’s chemotherapy, I was eager to get treatment started and I watched anxiously as the chemo dripped into his central line. Christian was surrounded by blue-gowned, blue-gloved, blue-padded and goggled nurses, dressed to protect themselves. Now there was this poison slowly entering his chest through these fat tubes, but there was nothing blue to protect him. This was one of the moments during Christian’s treatment that I knew the perspectives in my life had changed forever. My mother was just finishing her chemotherapy treatments for lymphoma. In fact, she drove over from having chemotherapy at the Foothills Hospital to the Alberta Children’s Hospital early that Wednesday morning, only to discover that her grandson had cancer. He would soon be receiving some of the very same chemotherapy drugs she had. I thought I knew what I was getting into, being that I had just helped my mom thru her cancer treatments, but I was quickly awakened to the realities of pediatric cancer and their harsh, archaic treatment protocols.

Christian’s treatment plan would be no less than 46 rounds of chemotherapy, 30 days of radiation and possibly surgery. Just a few weeks shy of a year for treatment. If only it had actually gone this way.

Within three months of Christian being on treatment, his tumour shrunk considerably and his oncologists were extremely optimistic with how well the tumour was responding to the chemo. We quickly learned how to live a crazy life with three kids, running back and forth to the hospital for chemo, clinic appointments, blood transfusions and middle-of-the-night emergency runs for fevers and sickness. The Alberta Children’s Hospital became our new home and we loved our nurses and doctors and the other oncology families, as we slowly learned to rely on the hospital for our comfort and trust. Oncology parents will often tell you that as soon as you put your child in the bed on the ward, you sit in the bedside chair and exhale; you are safe and your child is safe and now you can breathe.

We had help from our amazing friends at our new church, Living Springs. Ironically, we met the pastor from our new church in the oncology clinic, where his son, the same age as Christian, was also battling the same cancer.

Six months into treatment, Christian continued to improve and was responding well to treatment, but the harshness of the chemotherapy and radiation began to take a horrific toll on his body. We struggled to find food he could eat and so, he became shockingly thin and frail. His heel chords tightened, forcing him to walk on his tiptoes. It was heartbreaking to watch him, wanting to play and be apart of all the regular childhood activities, but his body let him down and he was forced, too often, to watch from the sidelines or slowly linger behind the rest.

When we were just two months shy of completing his treatment protocol, he began to experience stomach pains and symptoms similar to those he’d experienced before his original diagnosis. One quick CT scan revealed that his tumour margins had increased significantly and surgery was his only chance for survival. We agreed to life-changing surgery that would include no less than six surgeons and 12 hours to complete. Christian then held the record for the longest and most complicated surgery in the history of the new Alberta Children’s Hospital.

In fact, while his little body lay opened and exposed on the operating table, the surgeon realized that his tumour had not only begun to grow, but it had also begun to creep up his aorta behind his heart. His tumour was going after his heart. They did not know this until they opened him up, so they had to send for an aortic graft from the Foothills Hospital, while he was open, so they could cut out the tumour and make him new vessels.

Christian spent 10 agonizing days in the ICU, following his surgery. Intubated and grossly swollen, he struggled while his body tried to figure out its new vascular “wiring.” I cannot begin to describe the pain of watching your child suffer, not only through cancer and harsh treatments, but now from a surgery that had brought his body very near to the end of his physical limitations. How much could his weak, little body take? I would stare at his bald head, with tubes coming out all sorts of places, and wonder how on earth we ended up here.

He eventually recovered from surgery, but then suffered for three weeks with massive narcotics withdrawal, due to all the drugs required to keep him sedated, while he was intubated. It seemed as though his struggles would never end. Yet true to Christian’s spirit, his wonderful light and soft heart melted anyone who dared spend time with him. His desire was that his mommy and daddy felt loved. Christian couldn’t sleep unless he was touching one of us, so we made sure he had someone to cuddle at night, a warm arm to hold and a soft leg to throw his own leg over, while he slept at night.

As soon as Christian physically recovered from surgery, his oncologist wanted to begin his new treatment protocol for his relapse. Essentially, we were starting all over again. His doctors threw every kind of chemo at him they could conjure. Unbeknownst to them his little body was slowly developing a bowel obstruction from the previous surgery. Just three weeks before Christmas, Christian would land in the ICU. It was the only place they could safely control his pain, until it was deemed he needed an emergency surgery in the middle of the night. I sent my boy away again, neutropeonic from his latest chemo treatment, to have his bowels opened up, the dirtiest part of his body, when his immune system was completely shut down. The ICU doctors told us to prepare for the worst: “He may very well not recover from this surgery.” It was a wait-and- see. So only six weeks after his massive tumour resection, his abdomen was once again opened up and operated on, while we waited and cried and prayed for our boy.

Miraculously, Christian recovered from this surgery and he was able to come home one day before Christmas, with the new nickname, The Boy of Steel, so dubbed by his ICU doctor. He battled all of this with his amazing strength and determination. His little body was so broken and weak, yet he fought with the strength of 100 lions. Christian definitely had God fighting for him.

February of 2012 would bring one of his hardest battles yet—his last hurdle to cancer-freedom, a stem cell transplant. I had no idea what we were getting into when we signed the papers agreeing to high-dose chemotherapy. During those four weeks Christian experienced pain I can’t even imagine. As a mother, watching him suffer endlessly and with little relief from his pain medications, these were by far my worst days. Listening to your child screaming in pain and finally giving into defeat and telling you, “Mommy, I just can’t do this anymore,” was enough to make me want to crawl into an early grave. Christian’s high-dose chemotherapy protocol included five days of chemo so intense that it would essentially kill him, had he not received his stem cell “rescue,” so it’s called. After taking Christian to the brink of death, the transplant team re-introduced his stem cells back into his body. Then the waiting period began—days of pain and torment as the high-dose chemotherapy took its full effect.

We were officially discharged from the hospital at the end of March and Christian’s slow crawl back to real life began. It was so scary leaving the hospital, leaving our “new family” behind, the people who understood everything that was happening to us and who could tell what kind of day you were having just by the look on your face or whether or not you’d had shower. The security of knowing that his every need and pain would be attended to as quickly as possible. Leaving the oncology unit for good was one of the hardest days of Christian’s journey. And, to this day, three years later, I still miss them more than I can express.

Christian spent a full six months in remission, before his angry tumour reared its ugly head again at the end of summer in 2012. They found new tumour growth on a scan before he experienced any pain. The tumour grew back so fast, that within a week of learning his cancer had returned, he was suffering from a bowel obstruction and we were rushing back to the hospital, knowing that this was the beginning of the end. Doctors told us that there was nothing they could do to help him, but offered us “salvage” chemo – to extend his life. Our amazing surgeon Dr. Mary Brindle, who had invested so much of her work and love into Christian’s treatment, offered us a surgery to bypass the bowel obstruction, so Christian could eat and be comfortable until he passed away.

Needless to say, our lives were shattered and our hope for a life with our sweet boy was gone. We were not prepared to say goodbye to him and the end seemed to be racing towards us at breakneck speed. We cried in the hallway of unit one, trying to decide what to do for our baby boy. Had he suffered enough? Should we just let him go? We decided no more chemo, but accepted Dr. Brindle’s offer to make him comfortable, while the tumour grew. She just happened to be leaving for Paris the following morning, but insisted that this was something she felt strongly about and really wanted to do for Christian and our family. So at 7 pm that night she took Christian up to the operating room. I can still see his face and his eyes starting back at me, completely resigned as the nurse carried him into the operation room. There were no tears in his eyes; he knew his part and followed along, knowing he was powerless over this beast of a disease.

Four hours later, Dr. Brindle walked into Christian’s hospital room. She looked at us and said, “I got it.” Completely dumbfounded, we asked what she was talking about. She explained that after doing everything she had intended to do, when she opened him up, she further examined the tumour and determined that it was not in the location the scan had indicated and it was not touching the important organs its was supposedly attached to. She said, “I am going to take this out.” The other surgeons encouraged her not to touch it and to leave well enough alone. But Dr. Brindle’s heart is big and her skill as a surgeon, just as big. She knew her limits and knew it was possible. She did an impromptu, unplanned tumour resection for Christian, four hours before she was to board a plane to a foreign country. She handed us back our boy, “cancer-free.”

Dr. Brindle had looked into my eyes before the surgery and told me she was going to fight for Christian and that is what she did. Her amazing spirit made that courageous choice, which gave us the chance to embrace life with Christian, however long it was going to be. She gave us our Make a Wish vacation to Disneyland, where Christian became a Jedi Master. She gave us his fifth birthday. She gave us amazing family time together in the mountains and one last Christmas together. Most importantly, she gave me six more months to hold my son in my arms, to lay with him in bed and watch the same shows over and over again. She gave me midnight tubs with my son, many rounds of golf with his daddy, pancake breakfasts, Star Wars battles and enough kisses and cuddles to keep my heart full till I see him again in heaven.

Christian succumbed to cancer on January 14 of 2013—just five days shy of two years to the day he was diagnosed. It has been three years since he has been gone, but it feels like it could have been yesterday. I miss my boy more than I could ever express with words. The groans of my heart are silent and cannot be reproduced with words. Having to give back my boy before I was ready has been the hardest thing I have ever done in my life. But Christian is home and free of pain, limitations, restrictions and disease. We know he is healed in heaven and waits for us there.

Christian taught us so much in his short life; he taught me that it was okay to be weak and ask for help, to let others lift me up. He taught me how to love fiercely and with complete abandon. He taught me perseverance and attention to detail. He taught me that the only thing that truly matters in life is to love, love those who need it, those who deserve it and those who don’t. Christian was known for his ability to look someone in the eye and make them feel loved and special. He could touch your face with his thin fingers and squeeze your neck with his frail arms, but he had the love of a giant. Christian is gone from this earth, but the lessons he taught me, the lessons I learned from watching him fight with grace, will last me a lifetime. I am a better human being and a better mother, all thanks to his willingness to sacrifice his life for us.

~God bless you Christian. I will see you soon, Mommy.

Thank you Kids Cancer Care

We came into contact with Kids Cancer Care almost immediately after Christian was admitted to the hospital. Every Wednesday evening they host Pizza Nights in the Sunshine Room on the oncology unit, which gave us the chance to meet other parents on the ward and talk about our struggles and our victories. We learned quickly that the volunteers who worked the Pizza Nights were, in fact, parents of survivors. This always brought us a lot of hope, as they shared their stories with us, giving us hope for our children’s outcomes and the ability to see beyond our current struggles and see the light at the end of the tunnel.

After Christian passed away, I connected with Kids Cancer Care’s family liaison, Mary Phillipo, who was always so kind and sweet to our family.

Kids Cancer Care really is an organization that cares for our hearts and our hurts, fostering healing for our whole family. Our first camp experience was the Mother’s Day brunch at Camp Kindle, where our kids got their first taste of camp life. After a lovely brunch, our children enjoyed the day, participating in different activities with camp counsellors who loved our children and embraced their hearts.

Soon after we attended our first Family Bereavement Camp. I was so afraid of what to expect, but it was one of the most liberating weekends I had spent since Christian passed away. One of the hardest things after your child is discharged for good, or passes away, is the loss of the friends you made, while living on the unit. Being at camp with other parents, who had also lost a child, allowed me and my husband Christopher and our kids a weekend, free of the stigma of grief. Everyone understood your pain and their hearts were open to hearing about your child, your struggles and how life had moved on, or hadn’t move on, after your child passed away.

The brave counsellors showed compassion to the parents and love to our children. They immediately gained our trust, so we felt free to allow our children to spend the day with them doing a variety of activities. Giving us a weekend to sit around with other parents and talk about things that even your closest friends and family could never understand—the loss of part of your heart. No judgment, no expectations, just love and acceptance.

Family Bereavement Camp at Camp Kindle has been such an important part of my years since Christian died, allowing me the chance to reconnect with old friends and go back to the places that allow us to speak about our children without condemnation or judgment. It is a beautiful thing and my life would be less full without Camp Kindle.

Last summer, our daughter Evelyn enjoyed her first overnight camp experience at Camp Kindle. Needless to say, she was thrilled and has not stopped talking about how much fun she had. Her counsellors, Fern and P&B, made sure she felt safe and comfortable. I am so grateful that Kids Cancer Care continues to include bereaved families in their programming. It gives us a chance to tell people about Christian, keeping his memory strong and for us to remain in the oncology family.

God bless Kids Cancer Care.

Christian’s dad Chris was featured in Kids Cancer Care’s 2017 Father’s Day video:

Christian’s photo gallery