September 9th

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 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.

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