Paul wrote this post to fellow Pearl Jam fans. It beautifully explains the reason we named Shane’s foundation after the song “Future Days.”
We named our foundation after the song Future Days. Why? We listened to Lightning Bolt on repeat on our chemo trips to the hospital. Our son, Shane’s favorite song was Getaway. It was because of the pace and the beat, but I’m sure there was a hidden meaning behind it. Our baby Shane was dying from cancer. The line in Future Days, “if I ever were to lose you, I’d surely lose myself” rang true. We were afraid. If we lost Shane, would we be able to go on? Would we lose ourselves? Shane was doing so well. 4 months into his treatment, he was cancer free. But that was only for a fleeting moment, because Shane’s rare cancer always returned.
The week we found out Shane’s cancer relapsed, we met with one of the top doctors in the world, for Shane’s cancer. We were told to enjoy him. “It’s the wind before the storm. You have done EVERYTHING you could as parents. Just love him. We all search for miracles. Your miracle was how well he took to the treatment. Your miracle was his quality of life through his journey. Babies with this cancer aren’t supposed to live long. Shane did. That’s your miracle.”
At that moment, everything changed. There wasn’t anything we could physically do, except continue to love him. And we did. Don’t get me wrong, we did everything in our power to help him, even during his last weeks on earth. With this cancer, you run out of time. We cherished him. Shane never missed a beat, up until the last couple weeks he was with us. After a year and two day battle, he passed away at 19 months old.
During Storytellers, Ed spoke about the song Alive. “To be alive was a curse.” Now, over the years the song has turned into an anthem of life. “The curse has been lifted.” For us, the meaning of Future Days changed. A song about the fear of loss, for us became an anthem of hope.
We move forward as a family. We tell our kids, Shane isn’t gone, he lives in our heart. As painful as it was and still is, we move forward keeping Shane’s legacy alive, through his foundation Shane’s Future Days. We raise money for rare pediatric cancer with the hope that one day they will find a cure for his cancer. While it won’t save Shane today, our hope is that it will save a future Shane. It’s all about hope as move forward into the Future.
We’ll be at the Philly shows. Our foundation is hosting a tailgate April 29th from 4p.m.- 7p.m. at the Holiday Inn by the Philadelphia Stadiums (900 Packer Ave). Come out and raise awareness for pediatric cancer research. All proceeds go to pediatric cancer research. $35 advance purchase/$40 at the door
Music is a gift. It can lift you out of dark places. Thanks for reading.