On November 4th, 2020 our son, Luke, was diagnosed with Acute Myeloid Leukemia. That day, we began the most grueling journey of our lives. Because of the type of treatment Luke needed, we learned we would be living at the Children’s hospital for months. Even though our jobs were flexible and we experienced incredible support from our community and family, the disruption to our lives was unimaginable. While that year was the hardest of our lives, we were held, carried, fed, and loved by our community.
In the time that we stayed at the hospital, our eyes were opened to a world no parent ever thinks they will have to see. We were witness to small babies and toddlers alone in their room because their parents had to be at work. When a young child has to be left alone in the room they put a mesh net around the bed to protect them from falling to the floor. Every time I walked by a room and saw the mesh net, my heart broke. We observed families torn between their multiple children at home and their sick one at the hospital. We saw Go Fund Me’s created in desperation so families could pay the bills and stay afloat while still being with their child during treatment. For people that are marginalized, a children’s cancer diagnosis is not only medically and emotionally devastating but also financially crippling.
After a brave fight, Luke died on October 2nd, 2021. His six years of life were remarkable. I have never met a braver, more joyful child. We want nothing more than to make our Lukey proud. We decided to honor and memorialize Luke through the Live Like Luke fund. The mission behind Live Like Luke is to lessen the financial burden that comes with a childhood cancer diagnosis. To some, that means supplementing their reduced paycheck. Others need help with transportation costs or food for their tables. Whatever the cost, our goal is to lessen the anxiety and enable cancer families to focus their attention where it’s needed most.
A Mother’s Tribute
Luke loved music, dancing, and singing. If a good song with a catchy beat came on, Luke could not help himself but start dancing or singing. Even when his body was full of cancer and though he did not have any energy, he would find a way to dance with his fingers or sing along to the tune. Let us be like Luke and seize the opportunity of bringing more joy into the world by singing and dancing.
Luke had an incredible lightness and presence of heart. Through his entire diagnosis, treatment, transplant, and relapse, he was never worried about the outcome. Rather, he lived in the present where he could enjoy his family, his food, his toys, or his shows. He laughed easily and found joy in the darkest moments. His attitude made the last year of his life a pretty good year, considering the battle he was fighting. I was always surprised to hear him bark out a laugh at a moderately funny part of a show. During his time at home on hospice, he was not concerned about what would happen next with his sickness but finding and accumulating more gemstones for his collection or picking the next cool Lego to build. Let us be like Luke and find joy and light in the dark. Let us be present and enjoy the life we are living now.
Luke was brave. I believe that is why he was able to endure his last year of life with so much joy and contentment. He had faith that his family and medical team would keep him safe and comfortable so he could pursue what brought him joy instead of worrying over himself. Any time he had to do something scary or hard in the hospital (a poke, a dressing change, a surgery) he faced it with stoicism and grace. Because I was witness to many children going through similar challenges, I know that Luke was unique in how he bravely faced his trials. I don’t know where he got his bravery, but he was easily the most courageous kid I have ever known. Let us be like Luke. Let us confront adversity and injustices like Luke confronted adversity and injustices.
When Luke relapsed and I knew the likelihood of him surviving was very low, I was crying, and he asked me, “What’s wrong, mom?” I told him the cancer is back and I am so sad, and he said very nonchalantly, “That’s fine, we’re just going to fight it.”
What a remarkable child. I am a better human for knowing and loving him for six years. My hope is that we all live our lives like Luke lived his.
Live Like Luke