A lengthy and often frightening battle with childhood cancer was the inspiration for a Foothills mom’s first children’s book.
Marvellous Macey, the Delightful Days was a labour of love and somewhat therapeutic for Caitlin Bangsund, who wrote the story based on her seven-year-old daughter Macey.
“That was one of the biggest surprises for me," said Bangsund. “I wrote throughout her journey just a blog for family and friends and it really turned into a form of therapy for me.”
Macey was diagnosed with acute lymphoblastic leukemia before her second birthday in 2014. The diagnosis sparked an early three-year chemotherapy plan.
One of the scariest moments came in November 2016, when a lung infection progressed into pneumonia and severe septic shock, and Macey had to be airlifted on life support to Stollery Children’s Hospital in Edmonton with less than 50 per cent odds of survival, but she pulled through.
In March 2017, Macey celebrated her end of treatment. Four years later, Bangsund is launching a children’s book – a gift for her daughter and a way to inspire hope.
“Our journey with cancer and with her survival of life support, through it all she has reminded me every day to never give up hope,” said Bangsund. “And I really wanted people to be able to experience her delight and the inspiration that she gives our family and people around her all the time.
“Despite both the fear of her cancer journey and her near-death experience, she continues really to shine.”
Bangsund said the book follows Macey as she lives life to the fullest, despite the trauma and challenges she has faced and overcome in her young life.
The Grade 2 student knows how to live with pure delight and make every day the best day ever, she said.
Even after being diagnosed in the fall of 2019 with a learning disability, Macey continues to live with joy, said Bangsund.
“Despite her current battle now with special need – she’s still sort of battling but she doesn’t know it,” she said. “That’s kind of the reason I wanted to get her out into the world and her ability to live in the moment and just live life one day at a time, and really enjoy it with all her energy.”
It’s a message Bangsund hopes many people will learn from her daughter, including herself.
Macey’s needs have taught her family the importance of being gentle and patient, and showing kindness even in the midst of frustration, she said.
“She’s really been the catalyst for courage, for that reminder to be present, to slow down, to just have to kind of change our perspective of things and what we considered to be our norm, or what we thought life was going to look like,” said Bangsund.
Macey now works with a medical team as well as occupational and physical therapists, speech pathologists, an aid and a psychologist, to help with her behavioural issues and to guide her through coping with trauma.
Bangsund said the traumatic effect of managing childhood cancer, nearly losing Macey, and learning how to be there for her in recovery has weighed on the family and they are all coming to terms with the fact that they endured something extremely difficult.
When you’re in the midst of the situation, it seems more like project management until the storm subsides and it’s possible to see the impact it has had on the family, she said.
“It’s okay to say it was hard,” said Bangsund. “We’re learning it’s okay to say let’s go talk to some professionals ourselves, and let’s work through the trauma piece we all experienced.”
Despite the difficulties, she said husband Josh has been a rock, and sons Hudson and Sawyer have been troopers and have never seemed to harbour any resentment toward their sister for the attention she receives because of her needs.
“They want to help her, they laugh at her, even though she can just be really difficult – interrupting them and her behaviour, certain things,” said Bangsund.
But Macey’s brothers still support her, and she said it’s clear they’re proud about everything their little sister has overcome.
That pride also extends to Mom, for writing the book. The boys are also characters in Macey’s story, and she said they were thrilled to see their illustrations.
“When I first had the PDF they were just grinning ear-to-ear,” said Bangsund. “We did a little photo shoot and we actually had a T-shirt and socks made that matched their characters in the book, so they thought that was really fun.”
Bangsund said writing and publishing a book came with a steep learning curve, but now that she’s releasing the first book the vision is for a three-book series, with the second one planned for release this fall.
The second book will focus more on the hardships and scary moments Macey faced, she said.
“It will cover the battle, the cancer and the life support, but in a children’s picture book,” said Bangsund. “It’s helping me process it but really on a level that might help children who are either facing hard things or have siblings or cousins or friends who are facing battles they don’t expect children to be facing.
“I’m hoping it can be a tool for other kids and families.”
Marvellous Macey, the Delightful Days is available on Amazon and hard copies will be for sale at Loop Kids on McRae Street in Okotoks beginning March 1. A portion of proceeds from sales will be donated to charities, beginning with Fostership - an organization supporting families whose children have been newly diagnosed with cancer.