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.
15 years ago today our country experienced a horrific tragedy.
We will always remember that day so clearly.
We remember those who lost their lives, those brave rescuers and those who lost loved ones.
Paul and I were living in the DC area at the time. Paul’s apartment was just blocks away from the Pentagon. It left a significant impact on our lives.
Today, I think of grief those children who lost their parents, parents who lost children and all those who lost in connection to this day.
I think of this song, sang in tribute to those on 9/11 and how music is a powerful tool in navigating through grief.
It was also playing when we got into the car after Shane’s funeral services.
No truer words to describe children with cancer.
Shane, you are our hero.
Day 9: Thinking out of the box
What was the driving force behind Shane’s Future Days?
Easy. Research….Childhood Cancer Research.
On March 6, 2015, we took Shane to CHOP for his last clinical visit. It was one of those trips where you knew what the answers would be and you dreaded going, but it was the final page in our hospital journey.
Shane had been on Etoposide for almost 21 days. It wasn’t working. While on our trip to Disney, more tumors began to grow and the most visible ones on his sternum and groin were growing more and more each day. I became the sole diaper changer of Shane when that happened. It was too difficult for anyone else to do it because every time you did, it was a constant reminder that time was running out.
So, it was then that we agreed there were no other treatment options left at the hospital for Shane. We were being transitioned completely to the Palliative Care Team. We would be connected with a local hospice team (Abington) who would come out to our home weekly to check on him and make sure his pain medications and other medications were still working. At this time, Shane was on morphine. His pain had gotten so bad when we were away that he needed to start it. We had it as a standby, hoping that we wouldn’t have to use it as soon as we did.
When we returned home, I immediately emailed Dr. Charles Keller at The Children’s Cancer Therapy Development Institute. We, the childhood cancer community, have groups that we belong to for our child’s specific cancer and within them are a range of discussion topics. One of these was tumor donation. Dr. Keller’s name frequently came up because he is the leading researcher in the field for rhabdomyosarcoma.
That night, Paul planned to take me to dinner since it was my birthday. On the way, I received a phone call…from Dr. Keller. I told him about Shane, his burden of disease and about our journey-personally and medically. He graciously accepted our offer of donating Shane’s tumors and promised to get the paperwork started, as we wanted everything legally in place for when the time came.
Besides this, he also kept in contact with us over the weeks until Shane’s passing. He got us in touch with other researchers and helped to solidify the fact that we were doing everything in our power to help Shane, even in his final days.
Thinking back about this day and time and writing about it is surreal. I’m not even sure looking in, how we would be able to make such a decision and just put the plan into action so quickly.
Simple. To us, tumor donation is a critical part to finding a cure. Our reality was clear- Shane wasn’t going to make it. As heartbreaking and sad as it was, donating his tumors is helping to create a legacy. It’s our way of giving back in hopes that someday another child like Shane will be able to survive this.
I will write more about www.cc-ti.org within the month. They are the future with their innovative approaches to bridging the gap in pre-clinical gap for childhood cancers.
Our partnership with them is only going to grow as we build upon what we started. Collaborating with other foundations and growing together is also important to our goal of a cure.
This is a great example of what we are trying to achieve.
Day 8: Community
Paul is a PSU alum and I can tell you that as long as I’ve known him, he has ALWAYS stopped and given to the PSU student canners.
This was before we personally knew the reality of childhood cancer.
In March 2015, we were asked to speak at what will be our children’s high school for their ASHS Mini-THON. Shane was just beginning to decline and passed two weeks after attending this event.
We felt it was important for us to tell a little about his story and more importantly to thank these students for all their efforts in raising awareness and funding for childhood cancer.
These students continue to amaze and inspire us.
Two rivals, Cheltenham and Abington will come together in honor of Childhood Cancer Awareness Month. We are honored to attend and be one of the beneficiaries of the football game tomorrow, Friday September 9th, along with Sara’s Smiles, Team Nate for the Parkway Run, CURE Childhood Cancer and the Four Diamonds Fund!
Paul is a Cheltenham alum and his parents still reside in Cheltenham. We live in Abington and Chase and Ella attend McKinley Elementary. Our family is tied to both of these communities.