Shane's Future Days- Childhood Cancer non-profit
We lost our son to a rare cancer on March 30, 2015. He was 19 months old. We started a foundation in his name, Shane’s Future Days. This is our story and the story behind the name of our foundation, Shane's Future Days.
At 8 months old, our youngest child, Shane, was diagnosed with Stage 4 alveolar rhabdomyosarcoma. What we thought was a hernia, was a rare aggressive form of cancer. Our life was turned upside down, opening up our eyes to the world of pediatric cancer. From diagnosis, Shane bravely battled for 1 year and 2 days, until he received his angel wings.
We named our foundation after the song Future Days. Why? We listened to Lightning Bolt on repeat on our chemo trips to the hospital. 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?
Four months into his treatment, he was cancer free. Shane was doing so well. 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. The doctor worked for the Dana Farber Cancer center in Boston. His message to us, 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. We were set to drive across the country if there was a treatment to prolong his life. Unfortunately, with this cancer, you run out of time. We cherished him. Shane never missed a beat, up until the last couple of weeks he was with us. After a year and two-day battle, he passed away at 19 months old on March 30, 2015.
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 and the comfort of going forward with a loved one, became an anthem of hope for the future.
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.
Shane’s foundation raises money for rare pediatric cancer research with the hope that one day we will find a cure for his cancer. While it won't save Shane today, our hope is that it will save future children. It's all about hope as we move forward into the Future.
We wanted to do something that would highlight our love of Pearl Jam music and the hope we have for finding a cure, which sparked the idea for a fundraising tailgate.
We were lucky enough to attend the Philadelphia shows (our hometown), like we do for every tour, but this time it was a different. We got to experience the epic “Ten” show. For the Friday show, our foundation, Shane’s Future Days, hosted a tailgate fundraiser attended by so many of our friends, family and fellow Pearl Jam fans. The tailgate, the show and the energy created that night was amazing.
These were our first PJ shows since the unfortunate loss of our son. It was more emotional than either of us could have imagined, especially with the monologue about loss and getting through your loss before “Release” was played.
We are traveling to Boston to attend both Fenway shows in August. The last time we were in Boston we met with the world renown doctor I spoke about above. To make this experience full circle, we will be stopping by Dana Farber and donating the money raised from the tailgate. The money will go towards rhabdomyosarcoma research projects in memory of our hero Shane J. Metzgar. Baby Shane would have turned 3 this month.
“Music can lift you out of dark places”
https://shanesfuturedays.org/
https://www.facebook.com/HelpShaneFightCancer/
At 8 months old, our youngest child, Shane, was diagnosed with Stage 4 alveolar rhabdomyosarcoma. What we thought was a hernia, was a rare aggressive form of cancer. Our life was turned upside down, opening up our eyes to the world of pediatric cancer. From diagnosis, Shane bravely battled for 1 year and 2 days, until he received his angel wings.
We named our foundation after the song Future Days. Why? We listened to Lightning Bolt on repeat on our chemo trips to the hospital. 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?
Four months into his treatment, he was cancer free. Shane was doing so well. 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. The doctor worked for the Dana Farber Cancer center in Boston. His message to us, 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. We were set to drive across the country if there was a treatment to prolong his life. Unfortunately, with this cancer, you run out of time. We cherished him. Shane never missed a beat, up until the last couple of weeks he was with us. After a year and two-day battle, he passed away at 19 months old on March 30, 2015.
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 and the comfort of going forward with a loved one, became an anthem of hope for the future.
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.
Shane’s foundation raises money for rare pediatric cancer research with the hope that one day we will find a cure for his cancer. While it won't save Shane today, our hope is that it will save future children. It's all about hope as we move forward into the Future.
We wanted to do something that would highlight our love of Pearl Jam music and the hope we have for finding a cure, which sparked the idea for a fundraising tailgate.
We were lucky enough to attend the Philadelphia shows (our hometown), like we do for every tour, but this time it was a different. We got to experience the epic “Ten” show. For the Friday show, our foundation, Shane’s Future Days, hosted a tailgate fundraiser attended by so many of our friends, family and fellow Pearl Jam fans. The tailgate, the show and the energy created that night was amazing.
These were our first PJ shows since the unfortunate loss of our son. It was more emotional than either of us could have imagined, especially with the monologue about loss and getting through your loss before “Release” was played.
We are traveling to Boston to attend both Fenway shows in August. The last time we were in Boston we met with the world renown doctor I spoke about above. To make this experience full circle, we will be stopping by Dana Farber and donating the money raised from the tailgate. The money will go towards rhabdomyosarcoma research projects in memory of our hero Shane J. Metzgar. Baby Shane would have turned 3 this month.
“Music can lift you out of dark places”
https://shanesfuturedays.org/
https://www.facebook.com/HelpShaneFightCancer/
Post edited by pjmetz20 on
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Enjoy Fenway. Pearl Jam certainly is the emotional ballast for so many of us.
2012 - Manchester i & ii, Berlin i & ii, Stockholm. 2014 - Amsterdam i & ii, Trieste, Vienna, Berlin, Leeds, Milton Keynes.
2016 - Boston Fenway i & ii, 2018 - Amsterdam i & ii, Pinkpop, London i & ii, Padova, Krakow, Barcelona, Seattle i & ii.
On my mind all day.
Thanks for sharing your story and Im sorry for your loss
hope to meet you guys in Boston.
"Me knowing the truth, I can not concur."
1996: Toronto - 1998: Chicago, Montreal, Barrie - 2000: Montreal, Toronto - 2002: Seattle X2 (Key Arena) - 2003: Cleveland, Buffalo, Toronto, Montreal, Seattle (Benaroya Hall) - 2004: Reading, Toledo, Grand Rapids - 2005: Kitchener, London, Hamilton, Montreal, Ottawa, Toronto, Quebec City - 2006: Toronto X2, Albany, Hartford, Grand Rapids, Cleveland - 2007: Chicago (Vic Theatre) - 2008: NYC X2, Hartford, Mansfield X2 - 2009: Toronto, Chicago X2, Seattle X2, Philadelphia X4 - 2010: Columbus, Noblesville, Cleveland, Buffalo, Hartford - 2011: Montreal, Toronto X2, Ottawa, Hamilton - 2012: Missoula - 2013: London, Chicago, Buffalo, Hartford - 2014: Detroit, Moline - 2015: NYC (Global Citizen Festival) - 2016: Greenville, Toronto X2, Chicago 1 - 2017: Brooklyn (RRHOF Induction) - 2018: Chicago 1, Boston 1 - 2022: Fresno, Ottawa, Hamilton, Toronto, NYC, Camden - 2023: St. Paul X2, Austin X2 - 2024: Vancouver X2, Portland, Sacramento, Missoula, Noblesville, Philadelphia X2, Baltimore
To Shane...