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.
CHOP contacted us in the Fall about an article they were writing highlighting the Palliative Care Team (PACT). They asked if we would like to contribute and of course we did.
They had a photographer come out and take pictures of Chase & Ella working with their child life specialist, Kelly. They were making ornaments for Shane’s tree and an additional handprint plate to include Will.
Last week, the finished article came out. It highlights how the PACT team has helped not just our family, but countless others.
I’ve been thinking a lot about Shane and the dreaded month of March as it approaches.
Time has definitely soften the blow this month brings.
This year is a big one for me and I’m feeling particularly anxious about it. I’m thankful to Paul and the kids for recognizing my uneasiness and their attempts to brighten it a bit.
Paul often talks about our trip to Disney in our speeches. It was the one vacation we never wanted to end. This says a lot for two people who can only handle so much “vacation time.”
This picture is of him at Hollywood Studios during that time. You can see how sick he was becoming on the outside. My mind always wanders to how he actually felt on the inside.
We were first invited to attend ASHS Mini-THON in 2015. Shane attended with us. He passed 17 days after we spoke.
It’s been four years, so while some of the students who met him have moved on, there are always new amazing students committed to raising awareness. We thank you for all that you do.
Thank you for allowing us to continue sharing Shane’s story.
“Time of year” is continuous and cyclical. Its grief squeezing the breath out of me. It’s mostly hidden, but ever present.
The holidays are over and time slows a bit. I feel like I’m drowning in thoughts, memories, all painful and wishful. I worry over things I can’t control. Hello grief. Hello anxiety. Thanks for waking my winter night’s dreams.
We get through an event or significant time, we exhale for maybe a week or two and then BAM! It starts all over again.
This time of year hits me harder than any other. So many things changed during this time. Even after 4 years, I can close my eyes and vividly remember with stabbing pain in my chest those moments I can barely believe we got through.
