Thank you for your donation of TWO American Girl dolls for this year’s 5th annual COL! We greatly appreciate your support!
Our 5th annual Celebration of Life event is coming up!
June 15, 2019 from 1-6 at VE Club in Warminster, PA
We are working out the fine details as this year has proved to be challenging to plan.
We won’t let that stand in the way of us trying to honor our son Shane, his battle and the fight we have continued for raising research funds and awareness for high risk childhood cancers.
We have been blessed with some incredible raffle and auction items so far. Stay tuned to hear more about those.
If anyone/companies would like to donate goods, tickets, etc., please feel free to contact us.
Thank you for your continued support and we hope to see you in June!
I remember 5 years ago today and Shane had just finished his first round of chemo. We were inpatient and it was the first time I had to spend time away from the kids for Shane’s cancer journey.
This picture is the one we took when Shane (and I) finally came home.
We were obviously unaware of the national significance of the day…#nationalsiblingday.
Will spent the earlier part of the week pointing Shane out in pictures around our house. He has a word for him, but it’s more of a noise at the moment. It’s the same tone and unfortunately I can’t translate it…yet. His favorite was the picture of our family at Disney World. It hangs on our fridge. He asks for me to lift him up, so he can point Shane out.
He also eats his meals and looks up at the picture of all of them (second pic). He points to everyone and says their name, including the word he has for Shane.
I think of how unfair it is to Will to never know his big brother, Shane. How will this affect him as he grows up? There are so many questions and even more obstacles for us to jump.
For now, I am proud of my kids for the bond they share. The good, the bad, the loving moments, the yelling, the wrestling, the endless nerf gun battles that always end in tears, the good night hugs, the soccer lessons in the backyard, the stories shared and so much more.
I grew up an only child. All I ever wanted was to have my kids to have each other. I cherish it. I know what’s missing and unfortunately they do too.
Four years and it doesn’t get any easier.
We are living life to our fullest, never forgetting and always pushing forward with you by our side.
We love and miss you forever Shane.
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.
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.
For a bereaved parent, each new year draws us further from the one we lost.
2019 will mark 4 years since Shane passed. It’s heartbreaking to realize we have been living without him for that long.
But, we move forward with him by our side.
He is remembered each and every day by us. I know Paul and I have done the best for our children when they can openly speak of their brother, laugh at the memories, cry at the moments lost, but always feel his love and presence within them and around them.
We want them to live forward with Shane as their guide.
They are proud of the legacy Shane has left. His tumors have brought forth amazing research and we have assisted in research and helped families faced with similar circumstances. All at our own pace. We balance our life, our family and Shane’s legacy in a healthy balance.
Thank you for continuing Shane’s legacy with us. May 2019 bring more remarkable movements forward in the fight against alveolar rhabdomyosarcoma.