This post is part of our series on the winning charities from the 2016 Aviva Community Fund and is provided by Nicole Forgeron, Caleb’s mom who is working with the Cape Breton Regional Hospital Foundation as part of Caleb’s Courage Fund for Pediatric Palliative Care. This multi-part blog series features the stories behind the charities who won the 2016 Aviva Community Fund contest and the impact they will make with each project across Canada.
Meet my son, Caleb William MacArthur, our inspiration behind the Caleb’s Courage Fund for Pediatric Palliative Care. A BIG superhero inside a little boy’s body, Caleb’s strong will, feisty attitude, unbreakable spirit, and unwavering courage were his superpowers. From a very young age, I knew Caleb was destined for greatness. He could melt hearts with his sparkling blue eyes, his beautiful smile, and his charming personality.
Captivated by the allure of saving the world and conquering “bad guys”, Caleb became fascinated with superheroes, quickly soaking up everything there was to know. He was known for his extensive wardrobe of superhero capes and pajamas, which he proudly wore day and night. Enthralled with his fantasyland, he spent hours intensely playing with his action figures.
For Caleb, there was only one thing mightier than superheroes, and that was his family, his mommy and daddy, his big sisters, Ella and Aubreigh, and his twin baby brother and sister, Lauchlin and Emery. Together we shared the most powerful force in the universe, LOVE. Together we had it all; a house filled with joy and laughter, the perfect blend of harmony and chaos in our big, beautiful family of seven.
But tragically, in April 2014, our “picture-perfect” family life quickly shattered.
On his third birthday, our beautiful, vibrant, happy little boy, was diagnosed with Stage IV, ‘High Risk’ Neuroblastoma, a relatively rare solid tumour cancer that developed from the nerve cells in his adrenal gland, and metastasized to multiple sites in his body. And so, our living nightmare began.
The Epic Battle Between Good and Evil
With the innocence of a child and the spirit of a warrior, Caleb fought his evil “arch nemesis”, with all of his might. Just like his favorite superheroes, Caleb was the epitome of strength, determination, and bravery.
Throughout treatment, Caleb maintained his simple, genuine love of life, even while confined to a hospital bed or attached to an IV pole. As I watched him battle this vicious monster, he taught me so much about life, about the purest, truest, and deepest love, about unbreakable strength and unwavering courage. He showed me how to live life to the fullest, take nothing for granted, and make the most of every moment. From Caleb, I learned how to get back up when life knocks you down and how to fight fiercely for what you truly believe in, no matter how sick, weary, or scared you may be. These are life lessons I will cherish forever.
Over the next few months, I watched my sweet baby boy transform into the most beautiful old soul, wise beyond his years, and well before his time. Battling cancer is far more than a physical fight; while ruthlessly attacking the weary body, it attempts to torment the mind, break the heart, and beat down the spirit. But cancer could NEVER win a battle of wills against Caleb, for he was fearless, unbreakable, invisible, or so we thought.
Eight months into treatment, just days before Christmas, as Caleb was preparing for the final phase of his protocol, we received more devastating news. A new cancerous growth was discovered in the bone of his leg, and from that point forward, treatment would be considered palliative care, as there is currently no known cure for relapsed Neuroblastoma.
My husband and I made a conscious effort to tackle “one day at a time,” desperately clinging to hope and praying for a miracle. But on March 24, 2015, one year after his courageous and valiant fight began, and exactly four weeks before his fourth birthday, Caleb’s epic battle came to an end. No more pain and suffering for our little angel, but a whole new level of pain and suffering for all of his family and friends who were left behind, with broken hearts, to grieve the loss of a very special little boy taken far too soon.
Celebrating Caleb’s Courage
Our tiny superhero left a HUGE mark on the world. People continue to be inspired and uplifted by his inner spirit, his perpetual desire to never give up, even in the face of the utmost adversity, to cherish every moment, and to wake up each morning with the positivity, enthusiasm, and innocence only a child could posses.
In the last few months of his life, Caleb walked with a limp, until there came a point where he could no longer even stand up. Rather than dwelling on what he couldn’t do, he focused on what he could do. He continued to make the most of his time both in the hospital and at home; laughing, playing, and never complaining, even when he was at his sickest. Caleb had cancer, but cancer did not “have” Caleb. He never gave up, and he never lost the spirit, the strength, the courage, or the dignity that defined him. He never lost his fight! In our eyes, Caleb was victorious; he was, and will always be, our ultimate superhero.
Losing a child is by far the most agonizing experience any parent could endure; a pain so excruciating and a loss so tragic, it should never exist! But for Caleb, and for all of our children, we needed to find some light in the darkness, as that is what Caleb always did.
My husband and I wanted to give back to the community that supported us, the hospital staff that cared for us, and all of the children and their families who would, unfortunately, follow in our dreaded footsteps. What better way to do so than by honouring the strongest, bravest person we have ever known, and so, Caleb’s Courage was born.
A Legacy of Love
Caleb’s Courage celebrates the life, the love, and the legacy of our precious son; a beautiful, brave little boy who lived his life fully and simply, through love and laughter; a boy who continues to capture hearts, inspire minds, and change lives.
“Helping little superheroes fighting BIG battles” is our mission. Caleb’s Courage’s mandate is to provide support for critically ill children and their families by enhancing the services, programs, and facilities for “Pediatric Palliative Care and Oncology” in Cape Breton. It is our hope that, by alleviating some of these families’ stressors and better addressing their needs, parents can focus their time and energy on what’s most important. That is, loving and caring for their child, spending time together as a family, and making memories along the way.
To bring this vision to life, we joined forces with the Cape Breton Regional Hospital Foundation, a local, and highly reputable not-for-profit organization that funds priority healthcare needs in our community.
Our first project is one very near and dear to our hearts. We are working to create a “family-centered” room for Pediatric Palliative Care at our local hospital. The current patient room is a large, barren room with dull, monotone colors, and bare walls; it is definitely NOT child-friendly. This is the room that Caleb spent countless days and nights as an inpatient at his “home hospital.” We plan to transform this “blank canvas” into a warm, happy, and inviting space; a “home away from home” where kids can play, and families can relax and have fun together. The room will be filled with toys, books, and games to help children through difficult days.
Turning our Dream Into a Reality
Thanks to the tremendous generosity of family, friends, community members, and local businesses, we have raised a significant amount of money for our room renovations. Since this is a very costly project (costing approximately $130,000), we put forth an application to the national Aviva Community Fund for $75,000, to offset some of our costs, and assist with some of the larger-scale items on our renovation wish list.
At the top of our list was a larger bed so parents can snuggle up with their children and sleep comfortably by their side and, during the day, the bigger bed will give children more room to play, even when they are bed-ridden. Next, the bathroom requires a crucial upgrade, including a wheelchair accessible shower and bed-to-shower lift. For parents, the attached bath enables them to stay in close proximity to their sick children. For the nursing staff, the bariatric lift eliminates the physical strain of having to lift patients. These big-ticket items will be invaluable, enhancing the quality of life for families during their time in hospital.
Caleb’s Courage Wins BIG
After two months of anticipation, our wait proved well worth it, as the Aviva Community Fund announced that Caleb’s Courage was one of the top grand prize winners of $75,000! Words cannot fully describe the sheer joy and overwhelming emotion we felt upon receiving this news!
Construction has already begun! Caleb’s new room is expected to be completed by spring 2017. The impact of this new room will be life-altering for sick children, their families, their friends, and the entire pediatrics medical staff at the Cape Breton Regional Hospital.
It is our hope that Caleb’s Courage will always be a light in the darkness for critically ill children and their families. For my husband and I, Caleb’s Courage has been a source of hope and healing through the heartache, as we learn how to live and love through our loss. It is a lifetime journey, but there is a very brave little superhero flying above us, guiding us along our way. With Caleb by our side, amazing things will continue to happen.