Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
Day 1:
Iβm going throw it back to a post we wrote at the beginning of childhood cancer awareness month in 2014.
Today we continue Shaneβs fight.
He should be here.
He would be excited to start his first day of Kindergarten at the same school as his siblings.
Cancer took that moment and so many countless ones away from us.
This month, Go Gold for the kids. Share their stories. Remember their smiles and help us work on their legacies.
#SFD #HelpShaneFightCancer #ARMSaware
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This is our family celebrating September 1, 2014. Today is not only Labor Day, but it is the start to childhood cancer awareness month. This time last year I would have had no idea about it either. It’s like they say, you never think it will happen to you and then it does.
We join millions of families in this emotional journey. We fight for our children as they become little heroes, warriors. We hold them as they endure their sedations, surgeries, biopsies, chemo, and for some radiation. They are still little and young and may not feel as though their voices are being heard. That is why we have to help them find their voice, be their voice and draw attention to their cause.
That little guy in the picture is our Shane Metzgar. He was 8 months old when diagnosed with stage 4 Alveolar rhabdomyosarcoma or rhabdo or ARMS for short. It is a vicious beast and was caused by a gene translocation. We have no idea when the tumor started, but it doubled in size from it’s initial discovery to his diagnosis.
Shane’s diagnosis was a grim day- March 28, 2014. No one ever wants to hear their child has cancer, but you most definitely don’t want to hear “we were afraid it was this cancer,” poor prognosis, and only 1 in 10 survive. You see, rhabdo is treatable, but it comes back.
We are determined to remain hopeful and positive. We live each day for him and keeping our family whole. Some days are easier than others. We take one day at a time and can’t make plans like we used to because everything is pretty much dictated by his treatment schedule and how he is feeling. Some people get it, some don’t. We are just trying to be normal, but real in our situation. My husband and I look at each other and say “I can’t believe we are going through this.” We both then add “everyday until we beat it.”
So, even though we are still considered new to the journey we are in it forever. Cancer messed with the wrong family. We are determined to create something that will be lasting. We still need time to sort that out.
In the meantime, we encourage everyone to take a stand and spread the word about childhood cancer- the least funded cancer research by the government.
#HelpShaneFightCancer
Your smile is everything. It’s a reminder of the joy and laughter you brought to our lives. Whenever things are rough, I often think of your face and am reminded of your strength and resilience…my goodness it was great even only at the age of one.
When things got rough and you were very sick, Chase’s main concern was how we would celebrate you in the future.
That was development of our annual Celebration of Life.
It was way too difficult to celebrate on your actual birthday, so now we do that ahead of time and keep your day to ourselves.
Life gets busy and each year we plan around camps, time constraints, etc. However, we are sure to celebrate you and remember that moment when you entered this world and left the incredible impact you had on it…even though brief.
As Ella says, “I’m sure God is throwing Shane a big party today.”
Happy heavenly 5th Birthday Shane! You are dearly missed and loved each and every day.
Tomorrow will be Shane’s 5th birthday.
We were only privileged to celebrate one birthday with our little man. We made it an amazing day for him and us and everyone around us who loved and supported him. We will never forget those who took the time and came out to celebrate that day with us and especially him.
I keep seeing this image pop up in and around FB world. When I first saw it, it took my breath away. It’s probably the most poignant piece I’ve seen representing what we feel every day after the loss of Shane.
It’s also quite timely considering what tomorrow represents.
*July is Bereaved Parents Month. John Maddox posted this powerful photo with the following quote, “We may look as if we carry on with our lives as before. We may even have times of joy and happiness. Everything may seem βnormalβ. But THIS, βEmptinessβ is how we all feel…all the time.”(The artwork is called Melancholy by Albert GyΓΆrgy in Geneva, Switzerland)
We are so thankful to everyone who came out on Saturday to our 4th Annual Celebration of Life event!
We successfully raised $20,000 this year!
Thank you to the 2007 soccer players (and their parents) from the Fishtown Rowdies, 1776 United FC, Philadelphia Union youth academy team and VE Gunners for their participation in the 2018 soccer friendly! What a talented group of players!
Thank you to our board of directors, who go above and beyond to ensure this day runs smoothly.
A special thank you to the ASHS Mini-THON and AJHS student volunteers, as well as our friends and family who volunteered their time throughout the day!
Thank you to Kendra Scott for hosting a trunk show at the event!
Thank you to Kelly Goldin, our child life specialist from CHOP’s Palliative Care Team and Charles Keller, our research partner from The Children’s Cancer Therapy Development Institute for graciously speaking at our event and letting our supporters know exactly where all the money raised has been going.
We hope to see you all next year!
Note:
I included this picture of Shane to announce the money raised. I’ve used it before, as it is one of my favorite memories of him.
We were in CHOP for an overnight chemo session and the nurses had just announced we could leave for the beach. At the same time, a goal was scored in the World Cup games in 2014, which we were watching. Days before we had received the results of Shane’s scans after 2 months of treatment. His tumors had disappeared and our family was in the greatest spirits!
I can’t help, but think Shane is proud of the legacy he has left and the future it holds for children diagnosed with these high risk cancers.
Thank you so much for all your support!