About
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
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
Don’t forget to register for tickets on our website. Those who purchase tickets ahead of time save money and will be entered into a raffle to win a YETI prize pack!
Lots of great items to raise money for childhood cancer research and programs!
I am an only child, so it’s hard for me to relate to a day like this. I almost had a sibling. My parents told me on a special trip to Philadelphia where my father was stationed with the Navy. They told me I was going to be a big sister and gave me a yellow flower Care Bear trinket box. It had my favorite Care Bear on it…Friendship Bear. Ella now has that box on her dresser in her room.
My mom miscarried.
I remember waking up and finding only my dad asleep in their bed. I remember asking where my mom was. He told me she was in the hospital and that she had lost the baby. I didn’t understand. I asked well, “Why don’t we go find him.”
I’m not sure how far along my mom was, but I knew I was having a little brother. I remember this moment so vividly in my mind. I can actually picture me thinking he was lost in a shopping cart. I also felt awful and still do to this day, that she had to explain to people that she lost her child.
Today, Chase told me that he feels bad for Will. I asked why and he said because he doesn’t know what it would feel like knowing you lost a brother you never got to meet.
He said he was proud to have Shane as a brother. He acknowledged that Shane would probably be following him around and he would try to teach him to play video games, even though I would be opposed to it. Ella acknowledged that it made her sad, but she knows Shane is proud of her for being such a good big sister to Will.
When your child is diagnosed with cancer, you feel isolated from everyone. It’s not necessarily that people make you feel like that, well some do, but you just are. You are that, “cancer family.”
The childhood cancer community is similar to normal society. People who have nothing in common, find commonality and friendship because you share one common bond…cancer. I often struggle with my place in this community, as I do occasionally in
normal society.
When your child is diagnosed with a cancer that has no cure, you are on an island within the childhood cancer community. There aren’t many treatment options, limited clinical trials that you have to wait for (time is of the essence), the prognosis is less than 1% and you are 100% reliant on hope.
Shane’s cancer was rare. Childhood cancer is not rare.
When your child dies from cancer, you find it hard to balance where your place is in normal society, as well as in the childhood cancer community.
It’s like you climb to another island within the childhood cancer community. You want to bring awareness to your cause, but not let others lose hope. You represent all their worst fears.
The truth is, cancer doesn’t discriminate.
Life is ever evolving. The people in your lives come and go depending on the circumstances. We lost people in our lives when Shane was diagnosed and more when he passed. For all of those who left, we
gained so much more. The support and love from so many who weren’t afraid to share in our loss and have helped create Shane’s legacy.
When I became pregnant with Will, he was a gift. It wasn’t planned, it just happened. We never wanted to replace Shane. While he has helped us acclimate more into normal society, it has left us again on another island in the childhood cancer community. Life after grief and loss.
Obviously, we are not the only ones who have lost a child to cancer, to go on and have another child. It hasn’t been an easy journey. My pregnancy was smooth, but there were many emotions attached that made it less than smooth. It’s still there, even as Will grows. Shane was diagnosed at 8 months, Will is currently 6 months. We hope that maybe once we hit his 2 year birthday, we may be able to breathe again.
The new found life and happiness separates us. What doesn’t is the passion and connection we feel to this community.
Our journey without Shane is now at the three year mark. Our journey is less about Shane’s diagnosis and more about what Shane is doing for the future of
rhabdomyosarcoma research.
The legacy Shane has left is remarkable….
On March 30, 2015 we said goodbye to Shane. This day is never easy for us. Never is, and never will be. Since Shane passed, March has been a tough month for us, but we move forward. His life put life into perspective. You truly realize what’s important. We are so thankful he was apart of our lives. He brought us so much joy over the 19 months he was with us…always smiling, even in the worst of times. We just hope we make him proud.
This year everyone was home and the kids decided they wanted to spend the day at Adventure Aquarium, who have been loyal supporters of Shane’s Future Days‘ COL event. They thought Shane would like to see the sharks, since his nickname in utero was “razor mouth” based off of a fictional shark.
It was a great day together. Shane would have enjoyed the shark tunnel, we all agreed on that.
We celebrated the Easter holiday traveling between families. It’s exhausting, but good to keep busy during this overwhelming time of year. Easter was the first holiday we celebrated without Shane which always makes it difficult.
Three years have passed, but we can still look back on those days, and it still feels like yesterday. Cancer took him from us, but it can’t take away our memories.
“Don’t cry because it’s over, smile because it happened.”
-Dr Seuss