Shane's Future Days- Childhood Cancer non-profit

pjmetz20pjmetz20 Posts: 36
edited August 2016 in The Porch
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/


Post edited by pjmetz20 on

Comments

  • PJNBPJNB New BrunswickPosts: 1,390
    He had some good taste with Getaway. Sorry to hear about this story that you had to go through and love the effort you guys are putting in for his memory and research.
    PJ
    2013 Worcester 1 & 2
    2016 Quebec, Toronto 2, Fenway 1 & 2, Wrigley 2

    EV
    2017 Firenze, Taormina 1 & 2
  • RunIntoTheRainRunIntoTheRain TexasPosts: 438
    I'm so sorry for your loss. Bravo for the fundraising you are doing in Shane's memory. Channeling loss into hope and positivity is a very beautiful thing.
    Enjoy Fenway. Pearl Jam certainly is the emotional ballast for so many of us.
  • dottlesdottles Posts: 9,032
    edited July 2016
    I wish you all the luck, I am so sorry for your loss and humbled by your strength x
    2009 - Manchester. 2010 - Dublin, Belfast, London, Berlin, Arras, Werchter. 2011 - PJ20 i & ii, Montreal, Toronto i & ii, Ottawa, Hamilton. 
    2012 - Manchester i & ii, Berlin i & ii, Stockholm. 2014 - Amsterdam i & ii, Trieste, Vienna, Berlin, Leeds, Milton Keynes.
    2016 - Boston Fenway i & ii
  • DavidDDavidD Posts: 1,294
    I read this this morning on my way to work.
    On my mind all day.
    Thanks for sharing your story and Im sorry for your loss
    hope to meet you guys in Boston.
  • Damn man. Damn.
    www.cluthelee.com
  • Daron OshayDaron Oshay Middletown, NJPosts: 1,939

    Damn man. Damn.

    Hearts and thoughts
  • 100 Pacer100 Pacer Toronto, ONPosts: 5,588
    Your lives and actions honor Shane each and every day. Thanks for sharing.
    To quote the 10C from Newsletter #8: "Please understand we have a lot of members and it is very hard to please everybody. If you are one of those unhappy people...please call 1-900-IDN-TCAR."

    "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)
  • pjmetz20pjmetz20 Posts: 36
    Thanks for all the kind words. We are planning to go to the PJ bar crawl on Saturday and will definitely be stopping by the Wishlist parties. Looking forward to the Fenway shows.
  • pjmetz20pjmetz20 Posts: 36
    Off we go. On Thursday we are going to the Dana Farber hospital to drop off a donation check in Shane's memory and meet with the doctors. The money from our PJ Philly tailgate is going towards a clinical trial. Then it's off to the merchandise tent and wishlist party. We'll see you around town. We'll be wearing our Shane shirts. Say hi.
  • mookieblalockmookieblalock Posts: 1,829
    This thread deserves more bumps.

    To Shane...
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