Music helps family cope with loss of daughter after cancer
When two-and-a-half year-old Mackenzie complained of a sore tooth over Thanksgiving weekend last year, her parents Devan Jobb and LeRhonda Vezeau thought it was her molar that was bothering her. A trip to a walk-in clinic, a dental office and then the emergency department at Guelph General Hospital told them it was something more.
Mackenzie and her family were referred to Hamilton Health Sciences’ McMaster Children’s Hospital (MCH). A series of tests confirmed she had stage 4 rhabdomyosarcoma, a rare type of cancer that forms in soft tissue, most often seen in children. The care team at MCH came up with a plan right away and would begin tackling the tumour in her cheek before Halloween, just days after diagnosis.
What started as a sore tooth turned into the family’s worst nightmare as they soon realized their little girl was being faced with the fight of her young life.
A loving team to lean on
Mackenzie and her family became very familiar with the sights and sounds at MCH. They attended appointments as a family and spent a lot of time getting to know the team.
As Halloween approached, Mackenzie told her parents she wanted to dress up as Dr. Stacey Marjerrison, the pediatric oncologist in charge of Mackenzie’s care at MCH. Everyone who saw her knew exactly who she was dressed as, by her dress and curly hair.
Mackenzie loved playing doctor and would tell Marjerrison that she was coming for her job. She liked being involved in the process and would often help her nurses with taking her temperature, flushing her G-tube for feeding and medication, and administering her morphine.
“The entire team was great. Everyone bent over backwards for us in every way, shape and form,” says Vezeau. “They allowed us to stay together as a family which helped with the healing process. Our other daughter, Madeliene was only four months old when Mackenzie was diagnosed. The nursing staff on 3B2 would help support us so we could focus on Mackenzie.”
A long road
Sadly, while the chemotherapy was shrinking the tumour in Mackenzie’s cheek, cancer had spread everywhere in her little body. By February 2022, the future started to feel grim. Mackenzie looked at her parents and said “no more hospitals.”
“We knew we had begun the end-of-life process. We knew our daughter wanted to be home with her puppies so we told her we were bringing her home and that the care team would see us there,” says Jobb. “At home, she loved being wheeled around the house in her wheelchair. We would play superheroes where she would put her arms out like a superhero and request rocket boosters which meant I would pick up the speed.”
And then this March, three weeks before her third birthday, Mackenzie passed away with her loved ones by her side. It was a long and difficult six months for the entire family from the first signs of cancer to her death.
Mackenzie’s parents remember the kindness of MCH staff, physicians and other families.
“Family and friends and perfect strangers were there for us,” they said. “Dr. Marjerrison, the physiotherapists, dieticians and the whole support team at McMaster Children’s Hospital helped us get by. And of course, Kenz’s two favourite people, Bonnie Brittain, the music therapist and Nora Abdalaal, a former Campfire Circle employee.” Campfire Circle is a privately-funded charity that brings laughter and joy to kids and families affected by childhood cancer.
During their stay at MCH, the family met other families on the ward and became part of the community. They took care of each other, demonstrated small acts of kindness and built relationships.
“It was a group of good people trying to make the best of a crappy situation,” says Vezeau. “You do anything you can to put a smile on their faces and take away the pain for the moment. All of us parents were at our worst but everyone was doing their best to be the best for our kids.”
Paying tribute to Mackenzie through music
On what would have been Mackenzie’s third birthday, the family gathered to release balloons and celebrate her life.
At the party, Mackenzie’s grandfather Bill Bartlett shared a gift the family will never forget. He played a beautiful song he had written about his granddaughter called Kenzi Bird.
He says the song came to him in just eight minutes.
”I have played guitar for 35 years. One day, I came home and it poured out of me,” says Bartlett. “My wife helped me with a couple of lines. I have never written a song that quickly. I would fall apart singing it but now I listen to it, and it is a good thing to me. Writing the song helped me get all of my feelings out.”
This song has continued to be part of the family’s healing journey.
Jobb listens to the song every day on his way to and from work. He turns the volume up really loud and blares it through his truck speakers. He sings along and feels safe in a space where no one can hear him.
Recently, he made a more permanent mark by tattooing the lyrics on his forearm.
Vezeau also listens to the song on a regular basis. As a stay-at-home mom, Vezeau finds ways to remember MacKenzie daily. “We talk to Kenz all the time and speak out loud to her. Madeliene will play and I will hear her say Kenzie’s name. The sisters are very connected. I will look over and see her putting her arms out and doing the superhero pose. To this day, she wears a stethoscope around the house to remember her big sister. In these moments, I know they are together.”
Listen to Bill Bartlett’s version of Kenzi Bird.
Listen to Pat Robitaille’s version of Kenzi Bird. Robitaille is a professional singer and songwriter from Toronto. He volunteered his time and talents and recorded a version of Kenzi Bird.
September is Childhood Cancer Awareness Month. Many individuals find different ways to raise awareness of the achievements made and challenges that remain in caring for children and youth with cancer, their families, and survivors of childhood cancer.