Shane’s Future Days is a 501(c)(3) 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 .
About Shane: Shane is our third child and our family’s connection to childhood cancer. 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. Whether playing nerf with his brother Chase, or making us laugh as he danced to Frozen songs with his sister Ella, Shane taught us the value of perseverance and hope. Even though Shane was diagnosed at 8 months with an incurable childhood muscle cancer, rhabdomyosarcoma, Shane always found a way to make us smile.
Shane’s Legacy: Paul and I knew Shane was among the 1 in 5 children whose cancer has no cure. When treatments were no longer working, we wanted to help other parents of children like Shane in the future. So, we donated his tumors to further alveolar rhabdomyosarcoma research. Shane’s tumor became a cell line, shared many times around the world. His tumor also became an Avatar Mouse, publicly available to all researchers and used to discover an Achilles’ Heel of rhabdomyosarcoma, published as the cover article of the scientific journal, Science Signaling. A national clinical trial resulted. Shane’s tumors’ DNA findings can be downloaded for research from a public data- base. Altogether, Shane’s tumor has been a part of discoveries in more than a half dozen scientific publications.
About Shane’s Inspiration: Paul and I created Shane’s Future Days to raise awareness, support scientific research and support families in the Philadelphia area battling currently nondurable childhood cancers. In addition to donating Shane’s tumors for research, we have funded research projects and purchased lab equipment for cc-TDI (www.cc-TDI.org), as well as serving as board members and volunteering our time to the organization. We work very closely with the Children’s Hospital of Philadelphia’s Palliative Care Team who provide the world’s best care to patients with currently incurable childhood cancers. We collect gift cards and support families during the grieving process. We are currently working to create a music program in Shane’s honor with them. We also adopt local families during the holidays and provide them with holiday gift wishes.
About your partnership: These past two years has been like no other. The COVID-19 pandemic created obstacles, but Shane’s Future Days rose to the occasion. We have continued working for the children and their families affected by childhood cancer. We look forward to the upcoming 2022 season and being able to hold in person events.
Michele and Paul Metzgar
Shane’s mom and dad
If you follow us on Facebook (https://www.facebook.com/HelpShaneFightCancer), you know we had a busy December.
With the help of our supporters and the Kendra Scott store in King of Prussia Mall, we were able to support families through the Kisses for Kyle Foundation and The Children’s Hospital of Philadelphia’s Palliative Care Team. We bought individuals gifts and gift cards from KFK and gave the PACT team, as well as a another local organization that helps families through CHOP over $1,000 in gift cards.
So, we enter a new year….2020.
I understand the anticipation of starting anew, seeing where the New Year takes you, but it’s also a reminder of another year without Shane.
Don’t get me wrong, we celebrate the anticipation with the kids, make resolutions, reflect back on the year and I wake up positive to greet the New Year. It’s just that we are missing a piece of our puzzle, our family….the life we never got to see in the last 4 years of this decade.
We missed birthdays—2, 3, 4, 5 & 6. Shane missed being a big brother, family vacations, the start of school and team sports, the list could go on.
What we can focus on is
Things we can do in the future to remind us of how strong we are from what we’ve been through.
We are so thankful for the success of Shane’s Future Days from the beginning to now. We are incredibly proud of the progress of Shane’s tumor donation and the research it has led to, as well as our continued partnership with Children’s Cancer Therapy Development Institute and CHOP’s PACT team.
We are blessed to have met so many through our journey and to all of you who have encouraged us, cried with us, supported us and created this with us.
Thank you from the bottom of our hearts.
May the New Year and new decade bring health, happiness and a CURE!
Well, it’s March and being snowed in has given me more than enough time to reflect.
Thank you all for your comments on my recent post. I post as a healthy way to release my thoughts (I journal too). I do think that many of you who have followed our journey are curious and afraid to ask questions, so sometimes I feel like writing my entries here may help with that.
Some of you may be curious as to why March has such a significant meaning to us.
Did you know that the day Shane passed was the same day I met Paul? Yep, March 30, 2001 we met in Washington D.C.. That same day, 14 years later we would lose our 3rd child.
Shane was baptized March 2, 2014. His lumps were detected March 4, 2014. Our appointments with the pediatrician and CHOP general surgeon were March 5, 2014 and March 7, 2014, respectively.
Our whole rollercoaster journey through CHOP was in March 2014. His diagnosis day was March 28, 2014 after his biopsy March 26, 2014.
We fought. We had a blessed cancer journey with little to no side effects. However, on March 6, 2015 (my birthday) we had our last appointment at CHOP as a regular oncology patient.
Shane’s tumors continued to grow, even after 14 days of radiation and oral chemo treatments. There were no more treatment options left (legally).
What that really means…is as a parent you need to make the decision of whether you are treating your child for you versus impacting the quality of life for your child.
On that day, we left with Shane on hospice care. We were transitioned from regular oncology to the Palliative Care Team. As you know, the PACT team left a significant mark on us. Their child life specialist helped Chase and Ella through so much and we are forever grateful. This is why we help with their funding. To help other families through the transition and bereavement.
It’s also the day I contacted Dr. Keller about donating Shane’s tumors. To us, this was a way to fight even more. While we knew Shane wouldn’t make it, our wish was that no other family or child would have to go through what we did. I wish more people thought about tumor donation and the significant impact it has on research and the future!
So, that’s the synopsis of why March is so difficult. However, life is full of coincidences and dates. I am forever grateful to be Shane’s Mom. The dates are ultimately insignificant to the love and life that is in the present.