This is not a story about numbers or statistics; this is not a story about the amount money it took to put up the walls of Canuck Place Children’s Hospice. This is a story about what happens within those walls everyday. This is a story about fireflies; who live short but brilliant lives.
“At Canuck Place we believe the end of life should be lived as fully as the beginning,” says Advanced Practice Nurse, Kirsten Campbell.
“As I walk with a child and family through their journey, somehow I hope that their pain and heartache has become a little easier to carry. I have learned in life that you cannot separate joy and sorrow; somehow they always seem to be present together. Watching a child or family learn to weave them together and see the beauty of the tapestry is an honour and privilege.”
Within the walls of Canuck Place are children fighting the toughest battle of their lives often before they even had a chance to scrape their knees playing touch football; balding heads before they had a chance to braid their hair, more hours spent in intensive care than on the playground. They come here not to die, but to live.
“My first personal interaction with Canuck Place was while I was working as a Clinical Resource Nurse at BC Children’s Hospital. There was a patient who I worked very closely with over a two-year span.
As I worked with her and the nurses providing her care, I started to see some significant moral distress, both with this teenager and the team providing care to her. She had been receiving active treatment for many years, but her body was not responding well to these treatments anymore, and there was heaviness in her spirit.
As the days went on, you would often find her in a dark room, where she would often have nightmares and cry out demanding that the nurses leave her room.
The nurses felt the distress of being responsible to carry out orders for a teenager who did not want them present in her room. Because of the relationship I had built with this patient, I decided to take the opportunity to talk to her about what I was witnessing and ask her what was going on for her.
When I asked her what her desire was, she responded, ‘I want to die, but no one has asked me.’
She proceeded to ask me if I could get some paper to write down her will. She carefully thought through things she wanted to tell her family and the legacy she wanted to leave them.
As soon as she finished, she looked at me with this big smile and said ‘can we have a party now?’
Suddenly her “fight” was over, and she was ready to live.
This was a girl who loved watching the Food Network and wanted to be a chef. She listed off very specific details about this party she wanted to have, including shrimp rings and a cheese and cracker platter.
The next few days included many family and team meetings to discuss goals of care and how to work through what this patient had shared with me. Through this process, she transitioned to palliative care, and a few days later I was able to help transfer her to Canuck Place for the last few weeks of her life, where her family could be together and cared for.
What I witnessed through her focus on “living” for her final days was a beautiful gift. I saw the heaviness in this girl release, as she was free to dream about how she wanted to fill her final days.
I can honestly say it was one of the hardest times of my career, but it has also completely shaped who I am and I would consider it a defining moment in my life.”
As her own family made the transition back to living in Abbotsford after many years in Vancouver, Campbell says it was a dream to know that an Abbotsford location of Canuck Place was opening, and it was a natural desire for her to continue her career in pediatric palliative care.
“People often respond to me that it must be so hard to be a palliative care nurse,” she says. “Of course the answer is ‘yes,’ but the beauty of helping a child or family prepare for death and living life to the fullest is really a gift to be part of.”
The Canuck Place Gift of Love Gala benefits nurses like Kirsten and the young people she helps to live their lives to the fullest, no matter how much time they have.
“Over this past year, I have witnessed a beautiful second location start to be filled with children and families.
I have helped to facilitate a bereavement support group for parents and siblings every other Tuesday. I have been able to see children attend recreation therapy events in our Abbotsford location – Dave Lede House.
I have personally provided home visits and consults for children at the end of their life, to allow families to stay in their home communities. I have provided perinatal care planning with women who are carrying a baby with a diagnosis of a lethal fetal anomaly or life-threatening condition, in order to allow them to deliver their baby closer to home.”
The Gift of Love Gala, taking place in Abbotsford on Saturday, February 7, raises funds that allow Canuck Place to expand its reach into the communities that these families live in. They rely on the support of the community year-round in order to operate and provide the necessary medical care to children and families across B.C.
“As we build increasing relationships across the province, we can help expand the understanding of how to make quality of life and comfort the goal of care, alleviate the pain and suffering of a child, and help manage complex symptoms so a child may live his/her best life possible,” says Campbell.
Even in the face of life-threatening illness, these children laugh, they are curious, they are a reminder of the strength of the human spirit and the importance of showing kindness and love to all those we meet.
At Canuck Place Children’s Hospice, they say that a life is not measured by hours, days or years, but by the richness of each moment, much like a firefly glowing bright before it’s gone.
To donate, visit canuckplace.org.
Canuck Place Children’s Hospice is British Columbia’s recognized paediatric palliative care provider. Over 560 newborns, children and teens with life-threatening illnesses and their families receive care from CPCH through outreach programs and two provincial hospice locations; Vancouver and Abbotsford. Services include clinical respite and family support, pain and symptom management, 24-hour phone consultation support and in-house clinical care, art and education, recreation therapy, grief and loss counselling and end-of-life care. Through the investment of the community, our talented team, and over 325 energetic volunteers we make a lasting difference in the lives of children and the families who love them.
Images: Canuck Place