What would Edyn do?

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

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

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

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

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

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

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

–Blair, childhood cancer survivor and volunteer

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

It’s Childhood Cancer Awareness Month, so what does pediatric cancer really look like? The Huffington Post captures stories and portraits from several young patients.

In honour of Childhood Cancer Awareness Month, a generous donor has agreed to match ANY and ALL donations made in the month of September. We encourage you to go online and donate today. Double your gift, double your impact.

Thank you for caring about children with cancer.