Shane’s Future Days Update

The page has been quiet. I know a lot of you have been contacting us and checking in to make sure everything is going OK. We appreciate your thoughtfulness. The truth is, Shane’s not doing well. We haven’t posted in a bit because we were letting all of this soak in. We took our memory trip at the best time, and honestly the only time. If you asked me how I would envision the difference in Shane’s health during the week in Disney, compared to the following week, I never would have thought so much would change. On March 6th, we made our last trip to the oncology clinic at CHOP. The current chemo was not working. Shane was scheduled to be on the chemo for 21 days and then off for 5 and so on. While on it, three new tumors appeared, as the already present tumors continued to grow. We went to clinic to discuss our options, but Paul and I knew we were out of options. The doctors agreed that the chemo wasn’t working. Unfortunately, there were no other treatment options left for Shane at CHOP. Our ties with CHOP will continue as he is now under the care of their Pediatric Advanced Care Team (PACT) and home hospice. As we said before, we will be forever tied to CHOP. We wouldn’t have made it this far in our journey without their guidance. The nurses, doctors, social workers and child life specialists are some of the most amazing people I will ever meet. They are truly special and we are lucky to have them know our family and support us through this. The doctors told us from the beginning what Shane’s chances were and we chose to ignore them. We are glad we did. You see, he has stage 4 alveolar rhabdomyosarcoma (ARMS), the most aggressive form of this cancer. Initially, it had metastasized from his groin to his lymph nodes, pancreas, lungs, bone and bone marrow and now his brain. From our talks with doctors and researchers, with Shane’s diagnosis of this type of PAX3 ARMS the longest anyone has lived is 6 years and that is at an adolescent age of diagnosis. One researcher we spoke with has not known a child of Shane’s age to have lived as long as he has and continues to. Shane is fighting hard and in our eyes he’s won to make his mark in this world. We appreciate all the thoughts, prayers and love you have given to us during our journey. It’s been inspirational to us, giving us strength each day as we move forward. I know a lot of you have been praying for a miracle. You see, the miracle is that Shane has lived a whole extra year of life with barely any side effects and a damn good quality of life. We have really lived and loved with him, with no regrets. In November when we traveled to Boston, the reality of his diagnosis really set in. Paul and I started to mentally prepare for what lied ahead. It’s been a struggle since then. Like climbing up an icy mountain, but never getting more than a few inches off the ground. Our main priorities have been of course Shane and providing him the best care we can, but also making sure our other children are prepared as much as they can be. CHOP has been essential in helping with Chase and Ella by providing an outstanding child life specialist who meets with them on a weekly basis to help prepare them. We are forever grateful for this help. Paul and I are not giving up. It’s a struggle to rationalize all this, but we continue to go on. You have no other choice. It’s been amazing watching Shane live his life, always with a smile on his face. The late ESPN anchor, Stuart Scott said it best, “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” Simple words, yet so impactful. No matter what happens in the future, Shane’s already beat cancer. And this goes for us too. We will be celebrating Shane and creating a legacy for him through our foundation, Shane’s Future Days. We have begun the groundwork already. We hope you will all continue with us on our journey to help raise awareness for childhood cancer and support us in our initiatives with the foundation. We will continue to keep you updated on Shane and his progress, as well as upcoming events involving the foundation.

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