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. Read More

The last time I updated everyone, Shane was scheduled for his g tube surgery so we could administer chemo at home.He has since had the surgery (2/9) and finished up radiation (2/10). According to the radiation oncologist, Shane had met his threshold and while we were scheduled to have 5 more sessions, it was up to us to continue and we chose not to.

We celebrated my daughter’s 4th birthday at CHOP while Shane underwent his final round of radiation. To her, the hospital is a magical place where people spoil you and they did just that. We were incredibly thankful to CHOP and their child life services for making her feel special, even under difficult circumstances.

In the week that followed surgery, Shane seemed to suffer from PTSD. He was not himself and was extremely clingy. The starvation factor in being sedated upset him greatly and it was an adjustment for him to realize it was over.

As soon as we had Shane’s radiation schedule, we booked a trip to Walt Disney World.

I am pleased to tell you that we returned from our trip this week. It was magical, memorable and enjoyable for our whole family. It was important to us to have memories with Shane outside of cancer and the hospital. We feel as though we have done a great job of balancing life for us and our children among all of this, but we had yet to take a family vacation. Disney seemed to be the perfect place to make those memories.

There are many people to thank…..

• The “We are Family” Dragon Boat Team
• The members of the Facebook group Hope and Smiles for Shane
• Michele for all her generosity and assistance in helping us plan our trip
• Heather and Meredith-two of my childhood friends who contacted Walt Disney World and their guest experience services agent arranged for special surprises for us
• The Alexa Nawrocki Pediatric Cancer Foundation