Sometimes superheroes reside in the hearts of small children fighting big battles. Although Shane stood 2 feet 6 inches and looked up to me, the truth is I looked up to him. He was my hero. Shane was born on 07/11/13. 8 Months later he was diagnosed with stage 4 alveolar rhabdomyosarcoma, one of the most aggressive forms of cancer around.

Shane’s diagnosis was terminal. We had two options; one, to do nothing and doing nothing would have given us weeks. The other option was chemotherapy. With chemo, there wasn’t a guarantee that his little body could withstand it. But Shane was strong and resilient. And thanks to CHOP, we were able to turn weeks into a year. For that, we are truly blessed.

We knew the percentages. We chose to ignore them. And I’m glad we did. We lived every day with the hope he was going to beat this. Without hope, you are left with nothing. I know there were many thoughts and prayers sent our way, praying for a miracle. Our miracle was the quality of life Shane lived. The tears we cried pale in comparison to the happiness and the joy he brought us.

Shane’s life may have seemed short to some, but those who were touched by his gentle spirit understood that the quality of his life far exceeded the quantity of time. Nothing slowed him down. Surgeries, chemo, scans, weekly hospital visits – Shane tackled every obstacle with a smile.

Our weekly trips to the hospital became routine. Shane would patrol the hallways, earning the nickname Shane the sheriff. He would greet patients with high fives and fist pumps. Shane brought so much joy to the hospital with his visits. Over the year, the doctors, nurses, and life services group became part of our family. Many chemo visits involved us rushing down the shore after his treatment, because Shane loved the beach. The doctors and nurses made this happen for us. Nothing, not even cancer could slow him down.

He grew up as any toddler would. Shane took his first steps. He spoke his first words…Ella, and eventually said everyone’s name in his family. Shane loved playing with his brother, whether it was Star Wars or soccer. He would kick the ball and yell goal! Shane also loved playing with his sister, Ella. She would set up the blocks, and Shane playing the role of Godzilla would knock them down and laugh hysterically. He thought the world of them, he wanted to be just like them.

A few days before Shane passed, we were at his big brother Chase’s soccer game. Shane’s body was withering away and the words he spoke turned into grunts, but the fight in his eyes was visible. Chase got hurt and came out of the game. Shane, who was in Michele’s arms, wiggled out and walked over Chase, as Michele followed behind. Shane patted Chase on the shoulder, but he wasn’t comforting him…no, Shane patted him, and pointed out to the field with a grunt, telling him, man-up big brother and get back out on the field. It was classic Shane.

Shane lived on his terms and went out on his terms. To quote Stuart Scott, the ESPN anchor who passed away from cancer, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” These simple words have been so impactful to our family and symbolized Shane’s journey through life.

Shane may have lost the fight, but he won the battle. He beat cancer. He lived every day to the fullest. He taught us to cherish every moment we have. As a family, we beat cancer. Many times cancer can rip through a family, tearing it apart. Cancer brought our family closer together. We are so thankful for the love and support we received from family and friends over the course of this journey. It has and will continue to help move us forward.

Shane’s fighting spirit has given us determination to build upon his legacy. We created a foundation focused on rare cancer research called Shane’s Future Days. Without a voice, nothing will change. Shane’s voice will be heard. Please join us we start the first day of Shane’s future days.