Shane was born on 07/11/13. He was the happiest and healthiest baby of the bunch. In March of 2014, we noticed a lump in Shane’s groin. We thought it was a hernia. Our pediatrician thought it was hernia. We were referred to The Children’s Hospital of Philadelphia to have Shane looked at.
When we met with the doctor in general surgery, we were told this was not a hernia. At the time it didn’t set in, but the fear in his eyes is something we’ll never forget. An ultrasound was ordered and it revealed a mass in his groin area. We were then shuffled from department to department over the next couple weeks. First Urology, then Infectious Diseases and finally the Oncology floor. The mass was biopsied and it revealed that our baby has cancer. A few days later, he was diagnosed with alveolar rhabdomyosarcoma, a rare and highly aggressive cancer.
As a parent hearing those words is the most gut wrenching feeling in the world. You feel helpless. It cripples you. You never think this could happen to you, until it does. Then you ask the question why us? What you did we do wrong? But the truth is cancer doesn’t discriminate. And in an instant on March 28, 2014, our life was turned upside down.
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. His survival rate for this cancer was 1 in 10. We chose to ignore this. And we’re 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, radiation, weekly hospital visits – Shane tackled every obstacle with a smile.
There’s a story Paul told at Shane’s eulogy. On March 25, 2015, 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 my arms, wiggled out and walked over Chase, as I 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.
Five day later, Shane passed away. 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. To quote Stuart Scott, “Live! Fight like hell. And when you get too tired to fight, then lay down and rest and let somebody else fight for you.
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. Even with his passing, we are hopeful that there will be a cure.