This afternoon Ollie told the hospice nurse how special he is because of all the VIP treatment he has received over the past week. I love moments like this – hearing him talk so fondly of himself, in awe that he is so special. I love this so much I almost don’t have room for the sadness in my heart. Thank you so so much for all the support that made his experience possible – it took a lot of work and generosity on behalf of so many people, and we are full of gratitude.
The timing of the trip seems just about perfect – our radiation oncologist zapped Ollie’s left hip, his “hurty leg” as he calls it, with a heavy dose of radiation the Thursday before we left, and it alleviated much of the pain associated with moving. On the ride home, he started to complain about pain in his right knee, so it seems the days in Orlando were our best window for minimal pain. We rode in an RV, which Ollie loved so much he counts as one of his very favorite things about the trip. In fact, it may have been his favorite thing. How do we begin to thank Papa Tetloff for driving that beast for so many hours? I can’t imagine how exhausting that is!
Ollie and I both rested a lot on the drive down, so we were ready for Disney the next day. My sister-in-law had the brilliant idea of booking the VIP package. This is a service provided by Disney that is worth every extra penny, especially for our specific situation. We met two tour guides at the beginning of the day who handled every little detail, from finding the nearest ice cream stand to informing the ride attendants that we needed the wheelchair accessible car (Disney has several rides with one car that has a removable back so we could just wheel Ollie on). hey would even navigate the crowd, ensuring no one bumped into Ollie. We never waited in any line – it was like a turbo fast pass. Even when meeting characters, we would be moved to the front of the line as soon as we arrived. I imagine we had a few angry scowls thrown our way when our group of 18 walked right into a ride and boarded it in front of so many waiting folks. It expedited the entire process, which was necessary since Ollie only had a few hours of energy before he needed to return to the hotel for rest.
The guides were incredibly knowledgeable and friendly – they drove us from park to park in a van, escorting us through back entrances located close to the rides we wanted to go on first. But the most special treatment came when we were at MGM with our guide Patrick. This was our last day at the parks, and we had not found Pluto yet. Patrick worked a little magic, and within 30 minutes we were waiting outside the door to the characters’ dressing area. They were preparing to go on stage for a show, and he requested they come out a few minutes early to meet Ollie. First came Donald, Daisy, Chip, and Dale (and I love that Donald signs his autograph “Donald Duck #1″). Then came Pluto and Ollie just lit up. He kept telling Pluto how much he loved him and what a big fan he is. They spent several minutes together, and were joined by Mickey, Minnie, and Goofy. No line, all the characters at one time, just for us. Very special. Ollie also seems to have good luck with weather. We started to joke that whenever he was out, the rain would stop, but when this proved to be true over and over, I became convinced he was better than an umbrella at keeping us dry.
When we asked Ollie about his favorite moments of the trip, he would say he loved it all, but especially the food (we did a tour of ice cream shops and hot dog stands), meeting the characters, and the gift shops. I loved that we shared it with so many family members, that I saw him smile more than in recent memory, and it was the trip Ollie wanted – we did what he wanted, and everyone, even the other kids, was accommodating. For the most part, Ollie felt good the whole time. We have a special gel pillow given by friends who are also a cancer family, and it helps Ollie to sit in a comfortable position for long periods of time. And of course we had lots of “feel good” medicines on us at all times. He would get sleepy and take short naps in his wheelchair, but was alert much of the time.
We had one final surprise waiting for us once we returned home. A while back, Ollie told me about a movie he wanted to see. He had seen a trailer while watching youtube, and asked me if I wanted to go see Boxtrolls. I had not heard of the movie and asked Ollie, “What are boxtrolls?” He answered, “Trolls who wear boxes.” Of course. We watched the trailer together, and were both excited about the film which comes out in late September. I wondered out loud to Anthony one day if the studio would send us a copy, and Ollie asked why we don’t just wait to see it in the theater. It was like a knife to my heart because it was just another reminder of how precious our time is and that we can take nothing for granted. Anthony’s cousin, Ricky, found out that Ollie is excited about The Boxtrolls and got to work making calls and found the right people to pull some strings. Laika and Focus Features, the movie studios who created The Boxtrolls, contacted us to arrange for a private showing of the film for Ollie. They flew a security guard with a copy of the film from LA to Birmingham who stayed around for a day so we could watch the movie. When we told Ollie he was probably the first kid to see the movie, other than people who worked on it, he again commented on how special he is. This was such a wonderful treat – the movie is adorable and sweet, and everyone reading this should go see it on September 26 (for those of you who are Game of Thrones fans, the lead character is voiced by Isaac Hempstead-Wright, aka Bran Stark). They also mailed an enormous gift basket with Boxtrolsl, Paranorman, and Coraline swag. If you need more convincing about how wonderful the movie is, and especially the people who created it and shared it with us, watch this: