The Beginning

Written by Beth, Luke’s Mom

If we can remember to live the way Luke lived, I believe we can live in a better world. Luke possessed a joy, a lightness of hear, and bravery that we could all learn from. Even in his short six years.

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.