Visit Dylan's Photo Gallery for a look at our Disney album!
What a wonderful time we had at Disney land! I hope I can update as good as Lisa did in the guest book, she did a great job, how can I compete! LOL. Our trip started at 6:30am on Wednesday, we were picked up by a town car that I had ordered and then taken to JFK for a 9am flight to LAX (Los Angeles). The American Airline flight was uneventful, Dylan and I slept part of the way and Dylan occupied himself with his ipod for the remainder of the 6 hour flight. Once in LAX airport, it was about 12pm (we gained 3 hours in flight) and we were greeted by a Qantas employee, which Jim had arranged for us. This was great because LAX is a huge airport and I would have become lost very easily (Thanks Jim!) At the baggage cart we were met by a Make-A-Wish representative who boarded us onto a van to take us to Disney. On the way I could see the Hollywood sign in the distance, and I noticed that LA is surrounded by mountains. California is such a beautiful state, with lots of palm trees lining the streets. As we approached Disney resort, I looked up at the huge red neon sign saying Disney hotel, we just couldn’t believe we were actually there. We checked into the hotel and given our Mickey Mouse room keys, then registered at the Make-A-Wish room. The resort was huge, with 3 hotel towers surrounding a swimming pool, gardens, waterfalls and stores. Our room was lovely, all of course themed with Disney. Even the lights in the bathroom were shaped in Mickey mouse hands. We dumped our luggage and headed straight to Disney via the monorail. We were both already so tired and a little overwhelmed, but we didn’t want to waste anytime, so we headed straight for Autopia which is a car ride where you actually drive the car yourself. Dylan loved it, but I must say, I am glad he doesn’t have his drivers license just yet! Next we went to Star Tours for a space ship simulator ride, then after that we went on the Disneyland Railroad for a train ride around the entire park. The weather was very hot, so after that we decided to head back to the resort in time for the Make-A-Wish welcome reception. The party was great, many Disney characters were there, and they provided lots of fun entertainment. The food was amazing, the detail incredible. We self served on Disney plates, even the food was Disney, the chicken nuggets were the shape of Mickey’s head and the desserts were all themed on Mickey and Minnie Mouse. Dylan was very tired, so after a few photos we retired back to our room. Thursday morning we met up with the Make-A-Wish group in the hotel lobby at 8:45am and were escorted to Disneyland. The wish Ambassadors (Dylan) and their care giver (me) were given yellow Genie T-Shirts and we assembled out the front of the Sleeping Beauty Castle to take part in a birthday Celebration for Disney turning 50 and make-A-Wish turning 25. Genie appeared from his lamp to grant a wish to a wish child and then each ambassador posed for a photo with Genie. After that, Dylan and I wandered around Disney, walking down Main Street, having ice-cream and collecting penny press coins. I took Dylan on the Pirates of the Caribbean ride, then in the Pirates store he spotted plastic gems in a treasure chest, so I bought him the black velvet bag and he filled it with little gems (closets thing to his rock fetish I guess!) Next was the Haunted Mansion, which was amazing, decorated with the theme of haunted Christmas. We went into the mansion and were all put into a room and the door closed, then it turned into an elevator that took us down a level and we entered another room that had 2 seater carriages moving along. We sat in the carriage and it went through the house, with great effects, music and decorations. It was not scary, more like a cartoon based scariness, if that makes sense. We both loved it. One thing about the Disney rides is that they are quite long, you certainly don’t get off them thinking it ended too soon. We then headed to the Jungle Cruise, which our friend Skye from the Australian Consulate used to work on. We got on the boat and off we went on a real jungle cruise, passing tigers, chimps, hippos and elephants. Dylan was hungry and the weather was hot, so we stopped headed back to the hotel to freshen up and find somewhere to eat. We got a call from Lisa who came to meet us. Lisa has been following Dylan’s story since before we left Australia, and she jumped at the chance to meet us while were close to here home. I sat with Dylan on one of the benches in the resort waiting for Lisa and Dylan asked what she looked like, and I said I had no idea, but she sounded very nice on the phone. Well, as Lisa approached us Dylan grabbed my arm and whispered, “she’s a chicky babe!” I told Lisa what Dylan said and she said she had been joking with her friend, wondering if Dylan would put her on his chicky babe list and that she had purposely wore her hair down just for Dylan because she knew he like it that way! Dylan was totally smitten straight away and wouldn’t stop chatting with her. It was so great because Dylan and I really felt a bit lost at Disney, seeing all the other families having such a good time, and Dylan and I wishing Tim and Cain were with us too. Lisa really made our time at Disney so much more special, she knew all the places to go and filled Dylan with lots of confidence. I was also so much more relaxed, having someone to help me push the wheelchair and get Dylan on and off rides. Back at Disney with our new found friend, Dylan had a snack of chicken nuggets then we talked him into a ride on Roger Rabbits Cartoon Spin in Toon Town. Dylan went in a car with Lisa, while I followed in a car behind. I am glad I was on my own because Dylan had Lisa’s car spinning out of control! Next we headed for a bit more excitement on the Matterhorn, a huge mountain with a cart that winds down at a fast speed and finally crossing through a splash of water. I wondered during the ride, how Dylan was coping because I was at the front while Dylan was behind cuddled up with Lisa. But when we got off Dylan was fine! O.K I was feeling still a bit adventurous and Dylan agreed to ride on the Space Mountain ride. Neither of us knew what it was because it is enclosed in a white building, all I knew…it was a roller coaster in the dark. Well, we saddled up and off we went, it climbed high through a beautiful star setting and it looked like you were going through a whole galaxy, but in the back of my mind, I knew the higher we climb, the faster the fall! Then it happened, fast turns, spiraling down at a great speed, I was screaming! I feared how Dylan was coping in the back with Lisa, I also wondered why I was stuck it in the scary front row, I am not one for rides really. But at the end, I was so glad I did it, what a great experience. Dylan seemed fine, Lisa said he had his head ducked down for most of it, but then he said he would do it again, well all up over the 3 days, Dylan rode Space Mountain 6 times, and was yelling out WooHoo during the fastest turns. Space Mountain was definitely Dylan’s favorite ride at Disney. After Space Mountain we rode Thunder Mountain which is like a runaway train in the wild west. Dylan loved that one also and went on it a few times with Lisa, I myself was feeling a bit giddy and preferred to watch them ride. Then Lisa took us across from Disney to California Adventure Park to soar over California in a ride that I have never experienced before. It was so well done, the best way to describe is was like an IMAX threatre that was underneath you and in front of you while you sat in a row that went up off the ground. You felt like you were gliding over California, over the rivers, ocean, golf course, night city and forest. When you went over the forest you could smell the tress and when you went through the orange farm you could smell the oranges, it was amazing! Then we went back to Disney to take Lisa on Haunted mansion because the theme had changed since she had been on it a few weeks earlier. Finally we called it a night, walked through downtown Disney passing the ESPN building where Dylan stopped for a photo in Herbie, then we passed out back at the hotel, while Lisa headed home. Next morning Dylan and I took off to Down town Disney where Dylan and I went to Build a Bear workshop. It was so cute, Dylan chose a dog plush shell, then he stuffed it, added a heart and made a wish. He then took his new pal for an air bath to blow off any loose fur and then he chose an outfit for him, shoes and all! We made a birth certificate and having to chose a name quickly, he was pronounced the original name of “Doggy”. We stopped for some pizza, then took doggy back to the hotel, where Dylan put him on the bed to watch T.V and covered him in a blanket in case he wanted to take a nap. I wonder what the hotel staff thought when they entered the room to find the T.V on and a dog snuggled up on the bed watching! We then went to explore California Adventure, walking through the Hollywood part and taking photos. Dylan then decided he had to get a Space Mountain fix again, so we went back to Disney and rode it a few times, trying to get a good photo as they snap a shot when you come down the final hill. Lisa called and we met up at the chicken nugget hot spot. Dylan seemed very tired by the time Lisa arrived, I think he was ready for bed already, but it was our final chance at Disney so I persisted with him to try a few more rides. I tried to entice him to go on Indiana Jones but he got really grumpy and refused, but that didn’t stop me from going on. Lisa stayed with Dylan while I had my fun. It was not as scary as Space mountain, but the effects were great, I really enjoyed it. Dylan was really hooked on Space Mountain so the only other ride we had a chance to do was It’s a Small World, it’s a boat that takes you through a tunnel where little dolls display different parts of the world and it continually plays the song. I think it was one of the original rides at Disney. In the evening we met up with the Make-A-Wish group and watched Aladdin in the theatre at California Adventure. Dylan was so tired, hungry and grumpy, but he still managed a smile and a giggle watching the Genie be his humorous self. When we came out of the theater it had become quite cool and Dylan was cold, so we made a brief appearance at the farewell dinner at the Bug’s Land party. The food was once again great and the Bug’s Land was fabulous. You actually felt like one of the ants in the Bug’s Life movie! After the dinner we headed straight back to the hotel, with Dylan asleep in the wheelchair before we even made it in the door at 8pm. Lisa said goodbye and gave me a Disney photo frame for Dylan to put a photo of her and Dylan in to remember what fun we all had. I then struggled to pack all the gifts I bought for Tim, Cain and the kids back at the Ronald McDonald House. At 9:30pm I listened to the fireworks at Disney but I couldn’t see them as one of the hotel towers was in the way. The next morning Dylan and I traveled back to LAX airport via a bus that Make-A-Wish has arranged. At the airport I pushed Dylan in his stroller while pushing a luggage cart (I discovered I am quite talented!) We checked in our luggage and set out for our 6 hour flight back to New York. I slept while Dylan played his game boy. As we approached New York I could tell the weather was bad, then the plane took a little dive and our stomached ended up in our throats and all the passengers screamed! Dylan said “what was that?” I replied “Nothing, just pretend we are still on Space Mountain!” The pilot then announced that there was a thunder storm over the airport and it was too dangerous to land so we had to circle for another half hour. When it came time to land, it was very bumpy and we were swaying every which way, but finally we landed and the whole plane went into a round of applause, clapping and cheering. Once off the plane I just followed everyone else to find the baggage collection area, it was quite a long way, so I am glad I didn’t get lost. As we went outside to look for the car I had ordered, it was pouring with rain. The car was no where to be seen and they didn’t call. I was just about to call them when a driver came to me and said I’ll take you and grabbed my luggage cart! I was saying “but there is a car here I ordered” but he was already half way across the road so Dylan and I had no choice but to follow. There he was putting our suitcases into the trunk of a pink, yes pink Lincoln! O.K we hopped in and made it back safe and sound, I am still not a true New Yorker, because these little things freak me out! Everything happens so fast, you just have to go with the flow. Once back at the Ronald, I put Dylan to bed (it was 12:30am) and I caught up with a few of the other moms to tell them about our trip. It was nice to be back, it’s funny how the Ronald is sort of home now, not so much New York itself, but the people at the Ronald have become my family, we are all so close now. The whole trip I just couldn’t stop thinking of Madison, at one point I couldn’t help but cry when the Make–A–Wish representative asked me how I was. I told Dylan on the plane back from Disney that Taylor wouldn’t be at the house when we returned and I explained why. I asked was he sad that Madison had died and he said no. He said that you can do what ever you want in heaven and that she would have lots of candy. Dylan is so amazing, he has no fear and sees the bright side of most things, even death. During the trip he had bouts of diarrhea and he really struggled to walk, spending most of the time in the wheelchair. But he just kept saying, “I wish this cancer would hurry up and get better” He also kept saying “I can’t wait until my cancer’s better so I can go back to Australia to eat Red Rooster” I get a good sense of happiness when he says those things because I know he has not given up, he believes he will get well and he sees a future for himself. I am concerned about his walking at the moment, it really is the worst he has ever been, I even struggled to get him to stand for photos at Disney. Tomorrow we have clinic and I will mention that the diarrhea seems to have increased and so has the pain and stiffness in his legs. I am not sure if chemo is scheduled, I received a message on my phone at the Ronald from Dr Modak saying he wanted me to call him in regards to his MIBG treatment. I hope that means he has an appointment in Philadelphia because I really don’t want him to have another round of chemo at this point. It is really hard because he has not had chemo for 4 weeks and that may put him at risk of disease progression, but at the same time it makes him so sick, I can see it taking it’s toll on his little body and I want him strong enough to with stand the MIBG treatment, arsenic treatment, radiation and 3F8 in the future. It is an uncertain time for us right now as far as treatment goes. I hope that tomorrow I will get some sort of plan in place because I am feeling anxious about Dylan’s health at the moment and it scares me. Usually I am very confident and strong but…I don’t know, you get these gut feeling when you’re a mother and I wish I didn’t have this feeling right now, if you know what I mean.
Thank you to Make-A-Wish Australia and America for a wonderful and unforgettable experience at Disneyland. Thank you also to Jim at Qantas, Rebecca at the Australian Consulate and of course to Lisa.
Thank you to everyone who has signed the guest book, written, phoned, emailed and sent Dylan gifts, you are truly our strength and courage, your support is incredible. I will add a Disney photo album to Dylan’s gallery over the next few days and also let you know about an exciting up coming online fundraising event!