“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
