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.
Coincidence?
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.

via: https://www.facebook.com/thechildhoodcancerproject/photos/a.460857917581173/800619860271642/?type=3&theater
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.
Cheers!

Thank you to Jennie Rose, Amanda Seguinot, Lorac Nedgo and Deborah Pann for your generous donations.
The Target Cuthbert Blvd made an incredible $500 gift card donation to the CHOP PACT team on behalf of Shane’s Future Days. Thank you for supporting the PACT families and issuing these gift cards in Shane’s name❤️
We had an incredible holiday gift drive season for 2018. None of this would be possible without all of you. Thank you for your support and remembering our sweet Shane.
Merry Christmas and Happy New Year you you and yours!
Love,
Paul, Michele, Chase, Ella, Shane and Will

The 21st is almost here and I wanted to pause and say THANK YOU to those who helped Shane’s Future Days brighten families affected by childhood cancer this holiday season.
-Our CHOP PACT team gift card drive and Holiday Gift Drive
Not only were we able to donate over $500 in gift cards,
we also helped a couple families through the PACT team
with all their holiday gifts
*Thank you to Kimberly Parker Cox, Bethany Parker,
Samantha Kane, Hope Anne Marie, Helene Metzgar, Roxanne Mayoros-Blasy and many more not on FB.
**A special thank you to the Falcone (Liz Rauch) family for buying gifts for specific members of our PACT families.
-Thank you to Wicked Cool Toys for your proceeds donation from your amazing 1st annual Santa’s Workshop event! We truly appreciate your efforts in putting on an outstanding event and supporting our families this holiday season.
-Four years ago, we moved in the middle of the most difficult part of our lives. It was crazy, overwhelming and before the move actually happened, we had no idea what our future held with Shane. We went into it before our trip to Boston.
We closed on 12/6/14 and that night Shane wound up at CHOP’s ER. We were quarantined for almost a week since he had RSV. We moved in 12/19/14 and on 12/22/14 I was back at CHOP with Shane for treatment. We came home on Christmas Eve. Somehow, every child’s room was set up as well as most of the house, along with 3 Christmas trees up and fully decorated.
It was a whirlwind with so much anxiety about the future. Our main goal was to get Shane into his new house and for him to live and enjoy it.
Now that….is holiday stress