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 .
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.
Research is the key. We are so grateful for our partnership and that Shane’s tumors cells have assisted in pushing forward a clinical trial.
It’s honestly the best gift we ever gave and one we never had to think twice about.
The Childhood Cancer Project is proud to support the work of Dr. Charles Keller and The Children’s Cancer Therapy Development Institute’s Legacy Autopsy program.
The Legacy Autopsy was created to enable parents of children with cancer to donate tumor tissue to research. The cc-TDI team and The Childhood Cancer Project believe that this kind of research will be field-changing, especially for rare childhood cancers for which cell lines and mouse models do not exist, and for which functional studies have never before been performed.
“The decision to donate our son’s tumors to research continues to give us hope. It allows us to fight for our son and so many others until a cure is found.”
— Shane’s parents
A huge thank you to everyone who has supported The Childhood Cancer Project, without you we couldn’t support so many families and the cc-TDI Legacy Autopsy Program.