Make-A-Wish Day 4

This will be shockingly short :). We started Wednesday, Dec 3 at the Magic Kingdom thinking that Hollywood Studios didn't need a whole day and we were likely to have to ditch plans to see/hear Neil Patrick Harris (who doesn't love "How I Met Your Mother") read a Christmas Story accompanied by a 50 piece orchestra. We got to the Magic Kingdom when it opened, took the train back to ToonTown, ran through Mickey's House, Minnie's House, and rode Goofy's Barnstormer then saw some characters in the Circus Tent / Shopping arena. Took the train back to the entrance and left the park sometime between 11 and noon.

We got to Hollywood Studios right around 1 pm. We had missed the stunt show's first performance so grabbed lunch (very late lunch for us this week) and then zipped all over the park for the next 7 and half hours. Bob made a very costly and very bad call by getting everyone into Prince Caspian ... something or other about Narnia. It was just a really long preview of the movie that took 30 minutes of our lives. Ugh.

We ended that day with walk through the Christmas Lights which is really cool and Bob's favorite part of this whole trip. On the way out we grabbed two more pressed pennies for Max (that will make more sense as details of today and yesterday become available) and then headed out to try and find dinner - it was 8:30 pm as we headed into the parking lot.

Bob made a wrong turn at the Hess station; he actually just failed to make any kind of turn. That prompted a discussion with Tracy on the need to rethink buying souvenirs on Friday at Magic Kingdom after having packed for the trip home and instead possibly doing Downtown Disney to shop Thursday night so that everything could be packed when we leave the hotel for Disney. That prompted a discussion about skipping Epcot all together during which Tracy (yes, Tracy, not Bob) suggested that it was already 8:45 pm and the Epcot fireworks thing was at 9:30 pm so maybe we should do that. We did. It was a little cold and we had an issue with an incredibly ignorant older woman who nearly stepped on Max (he was sitting in the middle of a fireworks show though) and then stole Gwendolyn and Olivia's position at the viewing railing. In spite of harsh words from Tracy, glares from everyone around and a wonderful couple next to the old hag that let Gwendolyn stand in front of them, the woman didn't move. Tracy did her best to ruin every picture the woman tried to take and after about 10 minutes she and her not so obnoxious friend left.

Oh, we had hot pretzels, hot dogs, and water for dinner at 9:45 pm (Bob believes it is mandated that prisoners eat slightly better ... though at less expense). If someone still has our Parents of the Year application, you might want to hold off until next year ;-)

We've slept in a little to start Thursday. We'll be going to Animal Kingdom and have to meet up with Max's Teacher's daughter, Allie, as she works in the Lion King Show and has something special for Max. (Gwendolyn also had Mrs. Sulley, the teacher, last year). We just wanted to write to let everyone know that all is well and the parks have not yet won; the Kimpland Family has just had to re-prioritize a little. Nothing big is planned for tonight but pretzels and water weren't planned for last night so only time will tell.

Details of the Day

Last night was min-golf until late and Bob ended up cutting the Blog entry short that night as well as the next day because all of our waking moments were being spent doing Disney, Universal, and other magical stuff and there was only time to backup the pictures and videos before succumbing to sleep. This was made worse by a power outage in the hotel at 1:15 am on Wednesday, Dec 3. This seemed like only seconds after Bob had fallen asleep but was probably more like 30 minutes. To Bob it sounded like he and Max’s ‘camping’ trip in the outfield at the Sussex minor league park where it started raining, thundering and lightning around 2 am and for the next hour all we could hear were campsites being taken down (in the rain and lightning). This morning, all Bob could hear for the next 45 minutes were doors opening and closing, people arguing in various languages, and just a lot of commotion. Bob did check the hallway quickly to make sure there wasn’t a fire because not a single emergency light had come on, that he could see, and he was slightly worried that the smoke and fire detection/suppression system operated on the same circuit. It is worth a quick note for anyone considering staying at the Radisson at 2900 Parkway – if you plan on doing anything but sleeping there – you probably want to look elsewhere (Bob would be happy to share his reasons).

In spite of a late and eventful night, we got to the Magic Kingdom as it opened. Our plan for the day was to hit all of ToonTown then head to Hollywood Studios for the rest of the day. With that laid out, we entered the park without our stroller and headed for the train station. There Bob got several complements on his Dr. Teeth Band Muppet t-shirt (okay, it was just one compliment but it was from the engineer and he was really excited so it should count for a lot). The train ride was something that only Bob had done before and that had been many, many, many years ago. It was a nice way to get back to ToonTown without having to navigate the crowds. Our first stop in ToonTown was Mickey’s house where Gwendolyn (she says it wasn’t her but the video Bob has seems to say otherwise) set off the same alarm that Bob set off a few years ago by leaning too far into Mickey’s living room.

A quick tour of the front of Minnie’s house was followed by a long stop in the kitchen to play with the refrigerator, oven, and microwave as well as shoot some pictures. The kids and Tracy then went on Goofy’s Barnstormer while Bob tried to figure out what the purple roofed building on the park map could be. It sits behind Donald’s Boat/House and to left of Goofy’s ride but there is nothing there. The problem is that Max has seen it on the map and insists that he is missing something. While the map isn’t to scale, it seems accurate short of this single building that isn’t really there. Bob walked Max all around the area where the purple roofed building should’ve been but Max just could not be placated and was angry that we were depriving him of whatever this was. Unfortunate.

Our next stop was the County Fair where Princesses and Fairies were doing meet and greets. The line for the Fairies was over an hour but Tinker Bell was in attendance and the girls all wanted to see her. We checked on using Max’s pass for this but the attendant told us that they no longer did alternate entrances at this venue. Ah well, we got on the princess line which was only labeled as 20 minutes. While it was actually only about 10 or 15 minutes, Max’s complaining the entire time about the line made it seem like hours. It was clear that he would not be able to do the fairies but Gwendolyn and Olivia were very upset about not seeing Tinker Bell. After seeing Aurora, Cinderella, and Belle, Bob went and asked the new greeter for the Fairies line if it would be possible for the girls to wait in line and have Max re-join them when they got to the front as he would not be able to tolerate the line without being disruptive. This new greeter looked at Max’ pass and said, “He doesn’t have to wait on line, just go over there (pointing to the exit) and someone will be with you shortly.” That was nice, but we’re not clear why the first greeter was so misinformed. After waiting just a few minutes, we were greeted by Kenneth and he talked to the kids about Max’s visit with Peter Pan, how the kids would have to be shrunk with some pixie dust to make them able to hear and see the fairies, and then shared some bad jokes. The kids then got to visit with Iridessa, Tinker Bell, and Rosetta.

We shopped for about 20 minutes (longer than the 5 that Max needed but Tracy was the culprit this time ;-) ) before taking the train back to the park’s entrance. We took the monorail out of the park just before noon. This turned out to be a great time as there was no one riding so Max, Gwendolyn, Olivia and Tracy go to ride in front with the conductor (only 4 are allowed there) while Bob checked email and did a quick 5 minutes of return phone calls.

At 12:36 we were parked in Hollywood Studios and heading to Rosie’s for a little lunch. Max decided he didn’t want chicken so he and Bob headed to Telousse’s Turkey Legs for a hot dog and a chili dog (what else would they name a hot dog stand?). Gwendolyn and Bob ate very quickly and ran to do the Rockin Roller Coaster while Max and Tracy finished lunch and Olivia took a well needed time out to collect herself. This wasn’t an official timeout, just a break that our 4 year old traveler sorely needed because she refuses to nap and we were keeping her up for very long days. Gwendolyn loved the roller coaster and tried to talk her way into a follow up ride but we had a very tight schedule to keep so she was denied.

We headed toward Mickey’s sorcerer hat where we found a stand selling baseball caps that we thought would make great souvenirs. Bob was able to snag a Grumpy hat for a mere $4.99 while the rest got the hats that appealed most to them. After making our purchases we still had time for a ride before the parade so we headed to Narnia’s Prince Caspian ride. It is so NOT a ride. It is a blatant advertisement for a movie that came out on DVD a while ago. We waited in fairly long queue and then entered a room. Oh, this will be like the Haunted Mansion Bob thought. Foolish Bob. We stood around the broken slab that Aslan was killed on in the first movie and then a movie started. OK, not a movie, a trailer. Sure it was a long trailer and a little info on the special effects that were used but it still just a damn trailer that we waited 15 minutes to see and took 10 minutes to watch. What a waste of effort on their part and a waste of time for us.

At this point it was time to get a seat for the parade and we headed to the spot we had used two years ago right outside of the Star Wars ride and near the Jedi Training Stage. We were there for a good 10 minutes before we learned the parade ended here instead of started, as it had last time. There really wasn’t time to move before the parade started so we decided to stick it out here. About 10 minutes later we learned that the trampoline and dancing would NOT take place where we were sitting but, instead, the parade would stop in front the commissary, far to our left, for 20 minutes for that show. Now, it was way too late as there was a crowd around us and the parade had already started. We stuck it out a while longer and Olivia danced with some of the women doing crowd control so we were all entertained. We did have a good position to see everything as the parade rolled by so it wasn’t a complete loss. We also go to see them do gymnastics in the street and all the dancers gathered in front of us while the rides went through a gate to our ride. At the end, we saw a whole dance routine and then caught some balls that were thrown over the gate at the very end so we ended up happy with our decision.

From here we ran to the Lights, Motors, Actions Extreme Stunt show that had come highly recommended for Max. We were late but Max’s pass got him reserved seating up front. The stunt show was going very well for our group until Herbie, the Love Bug, made his appearance. This is Max’s favorite car, in front of even Lightning McQueen, so having Herbie show up was a great treat. Unfortunately, Herbie makes a wrong turn and ends up cutting himself in half. Fun for everyone but Max who was devastated. Explaining to Max that it was a just a trick, like everything else they were showing us in the show but he just couldn’t let it go.

We got out of the stunt show a few minutes before 5 pm and realized that Playhouse Disney’s last show was at 5:00 pm. We explained to Max that were going to miss that this time around and we were told, in no uncertain terms, that this was unacceptable. OK. We ran across the entire park to the Playhouse Disney site just as they were closing the doors. Tracy got Max and Gwendolyn in while Bob found a stroller spot with Olivia and then re-joined the group. We were fortunate to have made it as both Max and Olivia had a wonderful time. For Max, the show is just as magical and real as it is for Olivia. They loved seeing all of the characters from their favorite shows.

Toy Story Mania was our next ride. This was way cool. Similar to the Buzz Lightyear ride in that you’re in a car and shooting at targets, but it is really huge 3-D video game. You move through the ride to six sets of targets, all with different values. Everyone had such a great time that we immediately got back on line and bettered our scores. After this was the moment that Max had been waiting on for years, a visit to Pizza Planet. He was thrilled to be playing in the video game parlor from Toy Story. Unfortunately, or thankfully depending on the point of view, it did not measure up to Max’s expectations. He didn’t like any of the games so it did not end up costing nearly as much as we had feared. Having spent only a few minutes here we headed to Muppetvision 3-D. In the waiting room, there were only about 30 people and Olivia made quick friends with two girls. They ran around, danced, and played until we were able to enter the theater. Bob has no more recollection of the movie as the world went dark for him as soon as he sat down.

We exited the movie and headed to the Osbourne Family Spectacle of Lights. We got there just as the Transiberian Orchestra’s song was starting to play in sync with the lights. That was a cool way to start. We walked through the streets looking for hidden Mickey’s and got our picture taken with the lights as the background. On our way out we stopped by the penny pressing machine under Mickey’s sorcerer hat so that Max could add another pressed penny to his collection. We were tired and unfed but the food venues had all closed for the evening. Tracy made a quick call to Max’s teacher to get final instructions for his visit to Animal Kingdom and then we headed out of the park.

On the way out, Bob missed a turn while he and Tracy were discussing a revision to the plan of buying souvenirs on Friday in the Magic Kingdom because of the problems we might have with getting those things packed. We thought that we might do better to try and visit Downtown Disney tomorrow night since Animal Kingdom closes at 6:00 pm. As Bob corrected for his missed turn Tracy suggested doing Epcot this evening as it was already 8:45 and fireworks there were at 9:30. The story of this adventure is recounted in appropriate detail above :)

Make-A-Wish Day 3 - Universal Orlando

Today was cold; cold for Florida anyway. The high was around 61 and the wind was 15-20 mph so all but Bob had on sweatshirts with Capri’s or jeans. Bob just thinks he looks funny in Capri’s so he opted for shorts and a long sleeve undershirt. This morning started early for both rooms so everyone got a bath or shower this morning. Oddly Olivia completely forgot to take off her underwear and undershirt before getting into the tub. Once she got rid of the rest of her clothes she was cleaned and ready to leave at 8:30 am. We’d never been to Universal before but had a general idea that was in the same direction as Sea World so we headed out sans map. Oops. We took exit 74 as the signs nearby said 74 – 76 would all work. 74 needs another , bigger sign as you exit the highway so that you don’t miss the first turn and end up driving around in the many condo areas near Dr. Philips, FL (never heard of a town name like that before but it seemed a little odd for a name of a town). After a short excursion through this oddly named town we got back on the highway, took the next exit and arrived at Universal Studios for the very first time.


Universal offers a preferred parking section for $17/day (compared to the non-preferred rate of $12/day). Bob and Gwendolyn had seen this pricing at Great Adventure over the summer but had passed as it was an additional $15. That worked out well because that day we were so early that we parked next to the preferred folks. Today we decided to go nuts and spend the extra $5 as a treat for Max (even though he had just bitched Bob out for driving around aimlessly on his ONE day at Universal). That seems to have been money well spent as we were very close to the parking lot entrance from the parks but the distance from the parking lot the parks was pretty formidable.

Here we need to interject a bit of history as we’d been told by nearly everyone that Max was not likely to enjoy the parks as many rides are roller coasters which, for the most part, he wants no part of. We’d also been told that when compared to Disney for service and appearance it loses hands down (which isn’t hard to believe given Disney’s attention to every single detail). There were far too many comments like that but cold weather aside today was a fantastic day!

We started at Guest Services where Maria asked Bob for his confirmation number. Bob felt like he’d been punched in the stomach. Confirmation number? Well, he didn’t have that but did have his own name and a drivers license to prove it was his name which was all that Disney required. Well, he had his PDA and access to the most recent two weeks of emails so maybe he’d gotten it in an email and just needed to find it. While he was frantically pressing buttons and trying to figure out how to search on the damn thing Tracy said, “It’s the same as all the others … 11 something or other.” That feeling of being kicked in the stomach was quickly replaced by a feeling of being kicked in the balls without warning by someone with steel toed boots. “What confirmation number,” Bob asked. “You know, the one in the Make-A-Wish packet,” replied Tracy. Bob knew full and well that the Make-A-Wish packet was back at the hotel because he’d asked Tracy if she brought it when he was driving through the condos in Dr. Philips and could’ve used the AVIS map that was stuck in there so he was a little puzzled by this not being mentioned a little early. Thank God for Maria though because she was able to find the reservation by name putting an end to the train wreck that was looming just around the bend. Maria asked us when we’d be returning to the park because we were being given a two-day, two-park pass but we politely said that we didn’t know if we’d make it back this trip as we’ll be leaving Friday (Tracy explained that while Bob just turned red because he can’t even think about lying without his face flushing fuller red than Rudolph’s nose – yeah that’s great at the poker table). Maria explained that wasn’t a problem at all. The tickets would be good until Dec 26 of next year, 2009. The special needs card that she was giving us could be brought back with the tickets and re-issued for whatever day we could come back. Oh, and the special needs card was even better than the cut-in-line pass that you can buy from Universal (they call it something else but it is one of the things we’d heard was beyond annoying). This card didn’t just get us toward the front of the line, it got us someone to take us to the front of the line. It was cold and the park had very few people but for the two rides that we did get that kind of attention it was pretty amazing; more on that in a bit. In a nutshell, this was starting off better than our first day at Disney.

While Tracy, Bob, and Max had been talking to Maria (Max was very busy sharing bad jokes with someone new), Gwendolyn was busy with the map trying to figure out how to get to Jimmy Neutron and Shrek as those were Max’s first two choices for rides. We took about three steps when Max yelled out, “I see it! I see Jimmy!” This, of course, caused Gwendolyn to be horribly upset because she’d done a lot of figuring in trying to help Max and he had the nerve to ruin it by actually looking at things. Oh yes, Bob can completely bask in knowing that this is the kind of pain that he and his brother, TR, had caused their own parents though those fights often quickly turned to violence and the need for medical attention. Karma has a nice way of smiling on Bob like that every so often. While Tracy consoled Gwendolyn, Bob took Max aside and explained the work that Gwendolyn had put into trying to help him out and that maybe, just maybe, he could pretend that he really needed her help. That actually went well for more than just the next 5 minutes though it eventually broke down.

The Jimmy Neutron ride was a virtual ride with a big screen movie and seats that moved around to simulate movement (many rides here are like that). It ties in well with the cartoon and the movies about Jimmy Neutron so everyone was happy … until … Max got wet. Oh, did he scream. It was really just a few drops but he screamed and screamed. Thankfully he started laughing at the show again and was in stitches along with the rest of the family when Carl started the Chicken Dance music and the seats bounced in tune with the song. It was a great way to start the day as well as to prepare Max for what would be an endless supply of minor wetness that would follow him the rest of the day. While he never got to doing anything less than screaming like he girl he was able to laugh the wetness of almost immediately for the rest of the day. Oh, to be clear, these were all sprinkles of water – never enough to get more than an inch of clothing wet – he just HATES rain. Shower is fine because … well … just because he is Max and shower is different than rain for some reason that only makes sense to Max.

…

Bob is now actually dizzy from laughing so hard at memories of growing up with TR. That and a scarcity of sleep the past few days necessitates a break so this will get finished later. Bob has decent notes on today so the memory erosion should be minimal (Bob is disappointed that he NEVER thought to do this before and instead relied on Tracy’s map markings to bring everything back)

…

Ogre Vision 4D followed the Jimmy Neutron ride. For this ride, there is a holding pen that serves as a torture chamber before you enter the ride. There Mirror on the Wall and the Gingerbread man entertain you with the help of Pinocchio (who is upside down in a box with only his feet and nose sticking out). Lots of bad jokes with Pinocchio’s nose growing while he tells Lord Farquad’s Ghost that he doesn’t know where Fiona is so everyone had a good time in the pre-ride. The ride itself is a 3-D movie so everyone needed glasses again. Donkey sneezed on us in the very beginning so Max got sprinkled again but recovered quickly. This was a fun ride but everyone’s favorite between the two was Jimmy Neutron (Limo ride was still the number 1 ride for Max).

Exiting Shrek’s ride we found Twister to the left. Amy had said that the ride was pretty cool but the kids probably wouldn’t like it. Anne Marie had said Max definitely should not go on the ride (though for Bob this was third party knowledge, through Tracy, and could be considered suspect). Bob did make everyone go on the ride and in the holding pen we were treated to videos of Bill Paxton (sorry if that is the wrong Bill but he is not a friend of Max’s after this ride) and Helen Hunt. Bob doesn’t remember Bill’s role in the movie as being particularly masculine but man, in these setup videos, the guy defines swagger. Or, more appropriately, swagger wanna be. It’s ridiculous. He’s standing there with his denim shirt open several buttons, his chest swelled up and in a stance that made us think he was sitting on a horse and trying to lean forward. Oh, and the deep voice that he affects doesn’t suit him. Well, most of that is really just distraction here because while Bob found the ride very cool (pre-ride aside) he exited the ride with three hysterical children, all balling, and asking “Why did you make us do that? Anne Marie said it was BAD!” Oops.

After that we got pretzels for a mid-morning snack and started walking towards the ET ride. On the way there we came across a show had several characters dancing on the stage and signing a song that escapes Bob right now but probably isn’t critical. Olivia had just gotten out of the stroller to dance when the music stop and they announced character meet & greets for those in the show so we lined up for Curious George and the Man in the Big Yellow Hat first. Max told several jokes, Olivia stamped her bells and flashing sneakers for George, and we learned that the Man in the Big Yellow Hat’s name is Ted. From there we got on the Shaggy and Scooby line where Bob looked dubiously at Shaggy as the wig seemed off from Bob’s memory of the stoner in the show. Well, that was the only thing that was off as Shaggy nailed every other aspect from the slightly raspy with a hint of bubbling bong water gurgle in his voice to his “Hey Scoobs” and finishing with his peace signs (clearly not rabbit ears; a mistake some amateurs make by holding them too high). Max and Shaggy shared bad jokes and Max learned a new one that has stuck with us

Shaggy: Hey Max, do you know which letter is a pirate’s favorite letter?

All: Arrrrrrrrrrrr

Shaggy: Oh, well, do you know his second favorite letter?

[pause here because none of us had thought the joke went on from there so we just stared stupidly]

Shaggy [pointing to his eye]: Ayeeeeeeeeeee

That was a fun visit which we followed up with the ET Ride. Bob and Tracy had heard great things about the ET ride but given his experience in watching the movie (cried and cried and cried when ET seemed dead) Max did not want to go on this ride. We made Max join the rest of us and we were escorted to the ride by the greeter. We boarded our bikes and took off on a journey through the setting of the movie with police cars pulling into our path, lots of shouting from police and dogs searching for ET and the kids, and followed by a visit to ET’s home planet. Bob’s opinion is that the ride could better have been called “ET’s ride to planet suck” because it seemed horribly dated for a movie that reigned as highest grossing film for such a long time. The kids all agreed that the only cool thing was that ET said “Thank you Max, Gwendolyn, Olivia, Tracy, Bob”

Next up was a visit to Woody Woodpecker’s roller coaster. Bob sat out being far too large for the seats of nearly every ride and likely to break something (knee or ankle) on the kiddie rides). Everyone else got off the ride excited that it was so fast but disappointed it was so short. We did a brief walk through Curious George’s play area and thankfully got out before something like half a million gallons of water spiller from the top of a building and off an awning soaking everything inside. Not only would Max have been beyond pissed about being that wet but being that wet in the cold and wind would’ve forced a trip home.

Danger avoided we headed to the Simpson’s Ride which seemed to have no line at all. That was very deceiving though because it is only a few months old and was build to disguise the fabulously long queue behind animations, whole walls, and even a second level of queuing. The second level on our side was a ramp up the outside of the building where we could feel the full force of the wind. That was a long few minutes standing shivering but we were rewarded with entrance to a staging room where 7 screens played quick Simpsons clips (each at a different time) that were interrupted by an announcement that Side Show Bob had escaped from prison and was looking to kill the Simpsons for their role in his being captured. For the ride we sat in a car that rose through the ceiling where it stood in front of a gigantic movie screen – this is very similar to Soarin at EPCOT but the ride is all about humor, Simpsons’ style. Everyone felt it was a great ride.

Men In Black was our next ride and was met with some trepidation from Olivia as it was a little bit dark. It is a shootout with Aliens, similar to the MIB movies and the Buzz Lightyear ride at Disney. Lunch was next but wasn’t very memorable as Bob, Tracy and Max are unable to recall a single detail just a few days later. On the way out of Universal Studios we ran across Doc Brown and his Delorean. Max talked to Doc for a long time but Doc was having a hard time following Max’s train of thought.

In Islands of Adventure, our first ride was Caro Suess el. Max isn’t a big fan of carousels because they make him dizzy and he hates that the horses (Seuss characters here) go up and down while going around so he wanted to sit in a car. He didn’t communicate that very well though until after the ride was over :( Next up was The Cat In The Hat ride which is a trip in a car through the story. At the start Tracy snapped a picture of Max, Olivia and Bob and immediately the ride slowed, the sound track stopped and voice came on saying, “Please secure all cameras. Photography inside the ride is strictly prohibited!” Oops. Tracy and the kids rode 1 Fish 2 Fish (like Dumbo) and then we all got on the High In the Sky Trolley Train ride. That was appropriately named as it is just a train running about 20 feet off the ground and through the restaurant and rides in Seussville.

Our next attraction was the Eighth Voyage of Sinbad which was a show. We initially sat very close but then realize we were in a soak zone and with the bitter temperature we opted to relocate outside the zone. The show was nice but, in spite of the weather, they seemed to have the air conditioning on inside the pavilion as it was a good 10-15 degrees colder inside. The cold prevented everyone from napping during the show. After the show Tracy talked to Max’s teacher, Mrs. Sulley to find out about seeing her daughter later in the week as she’s currently in the employ of Disney and was trying to setup something special for Max at the Lion King show in Animal Kingdom.

We took a long walk around the park past some roller coasters that seemed cool to Gwendolyn and Bob but we were quickly losing Max to fatigue so we rushed to the Spider Man ride which we’d heard good things about. This ride was neat as it was 3-D but you sat in a car that took you to various sections that had 3-D movies. Max liked everything but the bumps. Olivia didn’t like it saying, “I was afraid because I didn’t know if it was all pretend like Disney.” Too bad it was the last ride for her or we could’ve cleared up that misconception.

Before leaving the park, Gwendolyn and Tracy rode the Hulk. Gwendolyn came off beaming and asking to ride again while Tracy came off disoriented and wishing she hadn’t done the ride at all. Apparently Tracy is no longer a fan of the fast, looping coasters.

Max had been talking about the Hard Rock on and off before we left and then non stop once he had seen the coliseum type building near the entrance to Islands of Adventure. We compromised on a walk through the Hard Rock rather than having dinner there as we still had something we wanted him to do tonight. He agreed but walked with his hand blocking his view of the building so that he would be totally surprised when we got there. We still don’t know why Max was so excited about the Hard Rock but it was not at all what he thought it was because within a few minutes he said he was done and we could leave. No explanation as to what was missing or different then he’d expected; just “I’m done.”

We did dinner at Denny’s in 30 minutes; a record for Max and Olivia. After making a quick pit stop for warmer clothes at the hotel we headed out for Max’s surprise. He loves mini-golf so we decided he would probably like mini-golf at Disney. We got there at 8 pm and it was deserted. Possibly this was due to the cold but we were ready in our winter coats, hats, and gloves/mittens. They offer two course and we opted for the Fantasia course which was clearly the right decision because what we saw of the other course were bunkers and sand traps making for a course that would’ve taken us hours to complete. The course has lots of tubes and funny shots to make all with characters from Fantasia incorporated along with a guide at the beginning of each hole which is sort of a riddle for the best way to attach the hole. Bob and Olivia each got a hole in one on the 5th, Gwendolyn on the 10th and Tracy on the 15th. Max didn’t hole-in-one but was very excited the entire time. As late and cold as it was he was remarkable for not having napped. His spirits were high because he was having a great time figuring out how the tricks in the course worked. On the 17th hole, Max putted and then walked around a sunken walkway to the left of the green. As he passed each of the 6 brooms with buckets, water shot out of the buckets and into a fountain. Since he did not get wet, he thought it was great though he seemed to be hoping that at least someone in our party would get hit by the water. Thankfully, that did not happen. We finished our round of golf at about 9:15 and headed home.

Make-A-Wish Day 2

Today started a little later than we had hoped so we ended up at the park at 9:30 am instead of 9:00 am but we were all a shade better rested than we would’ve been. Tracy's night with Max was not as bad as she had feared though she did find Max sitting up in his bed doing nothing a little after 4:00 am. It is strange behavior that Bob has seen on overnight trips before where Max is just sitting there, wide awake, doing nothing at all. It is the kind of thing you see in possessed people in movies and even though we're mostly certain he is not possessed it is very disconcerting at that hour. Once Tracy suggested going back to sleep Max did just that right along with Mommy. The delay gave Bob and Gwendolyn a chance to check out the hotels pool and they found it to be full of possibilities. There is a 40 feet slide that drops about 10 feet over its run into a large pool that maxes out at 4.5 feet deep. There is also a small kiddie/wading pool, a heated pool and a sauna in addition to a huge chess set (makes the Frontierland set look small by comparison), a foosball and ping pong table. The weather was crisp but in the high 60s or low 70s so we opted for wearing shorts all around, some wore sweatshirts, and kept jeans in a bag for when the sun finally went down as today would be a long day.

We ended up parking in Pluto 17 which isn’t too far away from the gate but we had plenty of company so rather than wait for the trams we hoofed it into the park. Max was very cheerful that it was “Great exercise!” which was unexpected given his near constant complaining during Cub Scout parades. Might have something to do with what is at the end of the walk I guess. On the walk, Tracy was able to talk to Amy from North/Central Florida Make-A-Wish and started to firm up plans for Max’s special visit with Peter Pan. We got through security and checked in at Guest Services where Make-A-Wish had 15 one day tickets (5 of us for 3 days each) waiting for us along with a card that the attendant told Bob would give Max access to everything he needed. Once inside the park Tracy took a look at the card and realized it was quite different from the Special Needs card that Max had been given on our last visit. On that trip, we’d visited City Hall with Max on the advice of a friend and they gave us a card that hooked Max up for special treatment but that we used very sparingly. Tracy did talk to a greeter inside the park who in turn talked to a different person at Guest Services and we were assured that Max had the appropriate credentials so we headed into the park.

We started our Photo-Pass on Main Street with a shot of the five us with the castle in the back ground. Prior to leaving Bob had found (on allears.net he thinks) a way to purchase the photo-pass CD in advance for a discount so we are trying to make sure we fill it up and we’re off to a good start with 40 so far today. From there we headed into Tomorrowland where Max was anxious to see the new Monsters, Inc. Laugh Floor. It is interactive with the animations interviewing audience members (who get show on the screen up front) and making jokes about the answers. Max loved the bad jokes. Olivia was a bit confused by her picture not being up on the screen but she was undeterred answering the first several questions quite loudly. Bob had to cover her mouth during future questions because she tried to answer them all.

From there it was a quick run over to Buzz Lightyear’s Space Ranger Spin where Tracy scored highest in our group but clearly had been helped by Max as her scores in the past have been … low. Max scored the lost but that was primarily due to the fact that he shot only at Bob, Gwendolyn, and Olivia in the car in front of him. On leaving Buzz Lightyear’s ride the plan had been to split up with Tracy and Gwendolyn doing Space Mountain but we saw that Stitch and Buzz were nearby doing autographs so we did that first. Stitch was first and he absolutely loved the bells on Olivia’s sneakers. (Olivia has worn bells on her shoes for all Disney park visits because she wanders endlessly and the loud jingle helps to find her though sometimes it is the absence of the jingle that alerts us to a real problem) Stitch, the photographer, and the handler all had a ball having her bounce around while Stitch made funny faces. It really is a joy to watch Olivia interact with everyone and everything.; she has a complete lack of fear, an amazing self confidence, an exuberance of energy and just a exudes a contagious sense of fun that is impossible to ignore. Max said something to Stitch about salsa that made Stitch turn his attention from Olivia but I didn’t quite get what he said but I’m sure it comes from the TV show (as do nearly all things that Max says). While Olivia was putting on her show Tracy was chatting with the photographer and eventually they talked about it being Max’s wish trip and the woman asked to see Max’s card. She confirmed Tracy’s earlier suspicion that it was not marked correctly or not the correct card and suggested that we visit City Hall to have it corrected. After a quick visit with Buzz we continued on our prior plan with Tracy and Gwendolyn heading to Space Mountain while Bob, Max and Olivia headed to the Tomorrowland Transit Authority which Bob likes because of the ability to catch a quick nap. However, the car moved quite a bit faster than he had remembered and when Olivia nearly fell off the seat all hopes of a nap were dashed.

The discussed plan of action following our reunion had been to do the Indy Speedway but Max said he had no interest at all in doing it. Mind you, he has ridden that on the previous 4 visits and laughed hysterically from the first jarring hit against the guidepost all the way to the very last which often numbered far too high to count. He said that he remembered riding it in the past and felt it would make him dizzy so he didn’t want to ride. We decided not to pursue the matter since we weren’t sure if we could get three to a car and Gwendolyn was not ready to drive solo so we headed for lunch at Cosmic Ray’s. That place is bad jokes on steroids and most haven’t changed since Bob’s parents first took him way back in the 70s. But they a respectable lunch quickly and provide a pretty good atmosphere.

After lunch we headed to City Hall to try and get Max’s card adjusted. Tracy took Max inside while Bob and the girls hung out. The card got adjusted to include being able to sit up front where appropriate to help with his visual problems and the ability to ride an attraction a second time (hadn’t seen that one before). Tracy still thought it was incorrect but didn’t want to argue or seem pushy so we headed back up Main Street and into Fantasyland where we took Peter Pan’s Flight. It is one of Max’s favorites due to the subject matter and he elected to ride with Mommy. Max loved it again but to Bob it, like Cosmic Ray’s, seemed unchanged and possibly a little dated. Next was everyone’s favorite, It’s a Small World. Everyone but Tracy that is. To be honest it wasn’t Bob’s favorite until he understood just how much the ride bothered Tracy so now it ranks way up there ;-)

At this point, a little more on how Max’s pass works is in order. Basically it is used to get him access to FastPass (sort of cutting, but not cutting because you get a ticket to come back at a later time and use a shorter line) without having to get the FastPass ticket. When we had visited the last time his Special Needs pass also got him quicker access to characters at meet and greets because of his autism. The reason that this is important now is that It’s a Small World is not a FastPass ride. We learned on our last visit that all rides have some kind of accommodation, this one being a trip down the exit ramp to board the boat in the same manner as wheelchair bound folks that can’t navigate the queue for obvious reasons. Here we learned from the woman at the gate that Max definitely did not have the correct pass. We explained that Max was here as part of a wish and further explained his issues with the line and she (Bob does know her name but is withholding it so she will be our nameless savior in case what she told us shouldn’t have been told) explained exactly what we needed to go back to City Hall and get for Max. She did allow our party through the exit ramp where we met a wonderful woman whose name Bob did not get. She chatted with us a bit and shared that Bob would be more comfortable in the 2nd row because of his height adding that she knew some tall people. Tracy called her bluff and said, “I’ll bet none as big as him” in a joking way and she said, “No, but my husband is close to that tall. In fact, he’s right over there.” Turned out that while she worked the off-loading side of the ride her husband was working the loading side of things. If Bob could stand the heat in the summer down here he could see working here in retirement as both he and Tracy are huge fans of complex. Can’t imagine that the same arrangement at small world would work out, funny as it would be to Bob.

On our second trip to City Hall we were assisted by Wes from Milford, CT. Wes was great! He listened to our story, sympathized, and informed us that Disney did not, in fact, have the card that we needed (it is provided by a third party), but worked at seeing what could be done that was similar. While we were waiting for Wes to come with an alternative we got a call from Amy at Make-A-Wish North/Central Florida checking to see if Max would be available at 4:25 today for his visit with Peter Pan! Knowing that would be perfect to pick up Max’s mood from the trips up and down Main Street, we told her that would be great and she said she’d get back to us with details after confirming with Disney and that she be happy to get involved if Wes turned out not to be able to do anything for Max. No worries as Wes got Max a Special Needs pass with a green light stamped on it that simply read “All access”. There was some fine print but was basically a free pass the front of everything. Before we left, Max asked Wes if he knew of a good place to get cinnamon buns because Max had smelled them earlier and now had to have one ;-)

We made a stop at the Bakery on Main Street where Max got a cinnamon bun and Olivia got a small chocolate bunt cake. While eating Gwendolyn and Olivia expressed a strong desire to ride Big Thunder Mountain which Max had liked last time around. This time, though, he said that he didn’t want to ride it because he did not want to ride backwards. Well that made no sense as the ride didn’t go backwards. In spite of a long discussion Max was convinced that he did not want to go on the ride but was fine with the girls going while he and Daddy waited. This did not sit well with Gwendolyn though because it was assumed to be a ride that could only accommodate 2 riders per car so there was a chance that she would have to ride with a stranger sitting next to her. Rather than risk that happening she did not want to go. Bob had a discussion with Max that lead to his agreeing to grant Gwendolyn one single wish and that would be for him to go on the ride and talk the attendant into letting Gwendolyn ride without a stranger! He was very proud of this contribution.

On our way there we had to head through a parade and ended up cutting through Frontierland and taking a detour on the Jungle Cruise. This ride turned out to be extra entertaining because Olivia thought that all of the snakes, hippos, and other animals were real and was very scared until Bob shared that nothing in Disney could hurt her and these were all actually pretend animals. At that point she started saying, “I’m not scared because I know that those are pretend” to our neighbors every time we came upon something new. They found her endearing rather than annoying (or at least that is what Bob’s rose colored glasses have seen). Near the end of the ride we got a call from Amy that things were all set for 4:25. Then, as we neared the docks, our boat stalled while waiting and the captain (can’t remember his name and he said it dozens of times :-( ) couldn’t get it restarted right away. Several workers on the dock were giving him a hard and it looked like we were going to be there a while but he suddenly got things working again.

We still had time before the meet and greet with Peter so we headed so we went to Big Thunder Mountain where the boys road behind the girls. Max was not looking forward to the ride at all but taking one for the team even though it turned out that the girls were able to fit three in their car. We had barely started out from the station when Max started laughing! That continued the entire ride; through every bump, twist and turn. He loved it so much that we went out and got right back on. For the second ride Bob and Gwendolyn rode in front and Bob tried to video tape Tracy, Max, and Olivia riding behind them. That was as difficult as Bob had imagined but some of it came out. We’ll try to get it on YouTube upon our return north.

Next was Max’s visit with Peter. Max and Olivia didn’t know it was going to happen but Gwendolyn had been privy to the secret as she’d gone with Tracy to confirm things with the cast members. We were told to wait in a somewhat secret garden (we’ve never noticed it before but it isn’t gated) and were greeted by cast member Trina. She came in and told Max that she’d heard that Peter was hiding in the bushes and she needed help finding him. When she asked if Max had any ideas on how to find Peter he immediately cawed (like Peter does in the movies). He got a very loud caw in return and was beaming from then on! Peter came in and they talked for a while about fighting pirates, Captain Hook, Mr. Smee, and bad jokes. Bob had to stand way back though and while he’s praising the wide screen of the new camcorder he isn’t sure if the audio will be intelligible. For as much as Max will peak through the cracks of a restroom stall, he stands many feet away while talking and until the picture taking started it was difficult to get Peter and Max in the same frame. Peter and Trina were both great and it was beyond terrific to see how happy Max was to be meeting and talking to THE Peter Pan! At the end he got an Honorary Lost Boy certificate signed by the boy himself (reminds Bob of the Little Orphan Annie Secret Decoder Ring with all its benefits and privileges). Bob will have to work on the video when we get home but right now that extended videotaping is leading to a lack of pictures in this email because backing the video up to Amazon’s S3 storage is taking a really long time … sorry but probably a double dose of pictures tomorrow.

While it couldn’t possibly get any better than meeting with Peter, no one was ready to call it quits so we headed to the Pirates of the Caribbean. The ride was particularly fun for Bob as he got to hear Olivia explain how everything in the ride was just pretend and she knew that because this is Disney and Disney doesn’t have things that can hurt you :) Although she wasn’t quite sure about the two dogs; those she thought might be real just very well trained. Walking out of the ride Max saw Trina helping Peter handle an autograph session and he ran through the line to Trina and said, “Do you know how many pirates there are in there … 48 … 44 alive and 4 D E A D dead.” She laughed at that and said, “Hang On” then quickly disappeared. She came back, asked Max to hold out his hands, and dumped some pirate booty (gold coins and gems) into his hand. OK, that was almost better than Peter because Max loves all things having to do with money, especially coins, and extra specially pirate coins!

After such an eventful hour we had to stop and refuel so we all had chicken at Pinocchio Village Haus. There we realized that we were running out of time if we were going to see the parade at 7 pm. Trying to hurry Max just made him angry. We gave up on Toon Town for today and the made him even less happy. Then we made him go on The Many Adventures of Winnie the Pooh which Max deemed “scary” for some odd reason. Bob decided to scream like a girl through the ride and while Max cracked a smile he didn’t laugh (nor did he seem particularly scared). Max then rode with Tracy on Snow White’s Scary Adventure while Bob took his daughters. Olivia remained unafraid of all things “pretend.” We then headed out for a viewing spot for the parade and fireworks. What we found was a decent spot for the parade but terrible for fireworks; it was far better attended than we had anticipated so spots were very scarce. The kids enjoyed the parade but the girls needed jeans afterwards because it was getting chill. We all enjoyed the fireworks and then headed into the stores for some window and real shopping. Bob got tired of trying to navigate the store with Olivia’s stroller so they left and watched a few minutes of movie then found the Build-A-Hat store at the end of Main Street. They didn’t buy anything but had a great time trying on all kinds of hats. We finally got home around 9:45 pm and all three kids were out by 10:15. Bob had some work to attend to so the writing of this is later than he had hoped but he know full and well that putting it off even for a day means that nearly 4 decades of only slightly taxing use will erode some of the finer memories of the day and this is a trip where that cannot be allowed to happen. This will likely get tweaked with images as well as grammatical corrections but please pardon the errors in the meantime.

Tomorrow we head to Universal. While Max, Tracy and Olivia will miss everyone at Lehigh Valley, as Tuesday is chemo day, but Max is pretty sure that he'll get over the pain ;-)

Make-A-Wish Day 1

Today Max’s Make-A-Wish trip started pretty magically although bleary eyed. Tracy stressed herself out enough to get sick last night as happens before every vacation so she and Bob were up until 1 am. Alarms started going off at 5:15 AM and by 5:45 AM, Tracy, Max and Bob had showered and Gwendolyn and Olivia were awake and dressed. Nighttime accoutrements were stowed in a carryon bag and a small scramble to figure out what had been forgotten was started. Bob venture outside at 6:10 am to make sure that our driver would have no problem finding the house and was surprised to find a white stretch limo with driver, Arlan, waiting at the end of the driveway in a lightly falling snow. It was just like out of a movie. Max was called outside to see what would be his first limousine. Max played about inside the car while the girls finished primping and Bob brought the bags and stroller out to Arlan.

By the time the limo was loaded with bags and passengers nearly a half an inch of snow had blanketed the street, grass, and cars. That along with the few that had deployed their Christmas decorations over the Thanksgiving Weekend made for a very pretty departure. On the ride, the snow turned to a heavy, wet snow and then to rain so that by the time we got to Newark it was simply a rainy city. Traffic at the airport at 7:15 am on a Sunday was about what you’d expect for one of the most traveled days of the year – absolutely packed!. It took about 10 minutes to get the limo up to the curb through all the traffic but only a minute or so to unload to the curb. It was nice not having to park the car and take the air train around. Getting the bags checked didn’t take long at all and for a change we did not get pulled out for special screening at security. In fact, we got to start our line without having to tell anyone Max was on a wish trip. We were early enough that we were able to get McDonalds at a table and relax before heading to the gate. While the girls took a bathroom break Max and Bob watched out the window and saw all 4 suit cases get onto the plane. We either missed the stroller or it has received some special attention … time will tell.

We did learn when we boarded the plane that we should’ve told the gate attendant that Max is traveling courtesy of Make-A-Wish as the would’ve let him tour the cockpit and meet the crew prior to boarding the other passengers. We’ll do that on the way home. We got situated and pulled away from the gate on time but waited in the big queue of planes for about 45 minutes. We’re now airborne and south of Dover Delaware and expect to arrive in Orlando on time.

…

Well, we ended up getting to Orlando a little late but nothing too bad. The flight was uneventful aside from mild turbulence for most of the trip. Gwendolyn was able to complete her reading assignment on the way and is now officially done with homework until December 8! Because of weather in the area we did take a while to land but we were in row 8 so we got off the plane very quickly. As is our normal routine, (since Bob had the misfortune of being with Max in the plane commode just prior to descent when we hit some wicked turbulence and scared Max so badly that he won’t go on the plane short of a dire emergency) we stopped at the restrooms near our gate. The girls went first and quickly. I headed in with Max but he has to wait for a stall rather than use a urinal so Bob was finished well in advance of Max. After cleaning up, Bob looked around and saw that Max was trying to peer between the cracks of a handicap stall :( The bathroom was packed with people, some equally shocked by what Max was doing, so one failed attempt to put an end to his behavior was enough and they left with Max’s bladder still full. On the walk to the next restroom Bob tried to explain to Max that looking through the cracks like that was a huge invasion of someone’s personal space but he was stuck on the thought that the stall was unoccupied but locked. We settled on a rule of “It is okay to push the door gently but if it doesn’t move, that is the end of testing because it is either occupied or broken.” I’m pretty certain he still does not understand because he immediately looked between the cracks in the next restroom but that one was completely unoccupied. Note to Bob: figure something out before Max gets hurt by someone that doesn’t find that at all amusing.

As we walked to the baggage claim area Bob noticed that he had a backpack, a car seat and a rolling carryon, Gwendolyn had a rolling carryon and a smaller cooler, and Tracy had a bag and the hands of Max and Olivia (Max will leave the party as soon as something new and shiny comes along while Olivia will just leave without any provocation). Doing the math of 4 new and much larger bags about to join our party along with a stroller that would need pushing, it didn’t take much work to realize there might be trouble ahead. Well I only wish that I had gotten our saviors name. He showed up with a huge sky cap cart that held everything but the stroller and new exactly where AVIS was located. Bob was able to use the escalator and go ahead to do the paperwork while savior and Tracy took the elevators. I’ve never seen any airport rental car location so unbusy. Truly remarkable as there were 3 attendants and no other clients. Max informed them that he was there on his wish and all 3 women thought he was great. They didn’t even try to sell us the insurance, just told Bob to initial here to decline it all! We were done by the time the bags came off the elevator so we all headed to the minivan where savior loaded everything into the back and Bob got the car seat installed. We’re pretty certain that from baggage claim to leaving the airport took all of 20 minutes – a clear record for traveling with a family and well faster than anything Bob has done solo.

Leaving the airport we found that it was raining. Driving a little ways we realized it was, in fact, down pouring! Honestly, Bob had driven in rain like that less than a dozen times in his life. It was crazy how hard it was raining. At one point we had to stop and glide through a 2 and a half foot ‘puddle’ in the left lane of the highway that Bob thought certain would foul the brakes or stall the car but all was well. With the only real commitment of a 5:00 pm reservation at the Hoop Dee Doo Review there was no rush so we were all able to enjoy the insane rain. By the time we got to the hotel it had mostly stopped and had completely let up when we had to unpack so things really have been going well. The only hitch so far has been that the two rooms that we have do not have connecting doors. A bit of a pain but the rooms are large enough, have a safe large enough to accommodate the laptop and other electronics, and two large dorm fridges (one each) so we have plenty of cooling. Bob and Gwendolyn are sharing a king bed while Tracy and Olivia share a double in a room where Max has his own double. That will probably change when Max wakes at 3 tomorrow morning and Tracy wakes the hotel in frustration but for now Bob intends on sleeping well for at least one night.

Not having been to the Hoop Dee Doo Review ever before as a family and not for Bob since he was 13, we left plenty of time to get there. We met a very friendly guard named Kevin (I’m paying very close attention to names this week in an attempt to capture everything for Max and those that help with his wish – normally I’m beyond terrible with names) (… now that I write that Kevin might have been the guy at the ticket window – damn it) Anyway, the very friendly guard, who from this day forth shall be known only as Kevin, told Bob that he had taken the wrong entrance, needed to go a shade further and park close to an RV that was visible from their current location. He also said that a bus would be needed to get to Pioneer Hall (home of the Hoop Dee Doo Review) but that all three lines would go to Settlers. He did recommend Pierre as the fastest driver but wasn’t sure if Pierre was working today. Max and Olivia liked the bus ride a lot – they are very sheltered children living within walking distance of their own school. We drove through the Fort Wilderness cabins and saw that some folks had decorated for the holidays. It was cute. We got to Pioneer Hall and learned that we had about an hour before someone would come out to greet the crowd so we headed to the Trading Post to get Max a snack as he had refused the turkey sandwich that Continental had provided on the grounds that it was not 1) yogurt, or 2) grapes, or 3) a bagel. We found some BBQ chips, apple juice, and water and headed to the front porch of the Arcade where there were rocking chairs, blocks, dominoes, and a large chess set.

Bob learned that Gwendolyn had already finished a chess class at school so they played a game which Bob only narrowly won but drew quite a crowd. We messed around a little more looking at campers that had decorated their campsites for Christmas – one such camper had easily 3 dozen large inflatable decorations. As only Bob had been to dinner here before no one knew what to expect so when Allen sat us and said to study the menu as there would be a quiz, Max and Gwendolyn got to it. We got to talk to Tom from Camden as he was the chef and would be making sure that Gwendolyn did not have dairy or peanuts in her meal. He put everyone at ease and then Arvyn started bringing food to the table. The corn bread was to die for but after only a nibble Max was on his way to falling asleep at the table. At a loss for how to keep him awake Bob blurted out, “Come on, this show is all about bad jokes and you love bad jokes. But these are funny bad jokes I promise. In fact, if you don’t laugh at the show, I’ll pay you $20 when we’re done.” Max tried to work out an agreement where he could laugh but still get money but Bob could see that he was fully awake and working overtime to figure out how to get the money. The show was great and everyone, yes even Tracy, laughed and laughed. The food was great, Arvyn was great and the show really was a superb display of corny humor (where Roy Clark went wrong with Hee Haw I will never know ). Max attempted to renegotiate several times after small fits of laughter but during the Hokie Pokie when the red head (yeah, didn’t get those names at all) swung her hips and knocked a pan off the wall he completely lost it and just asked if he could still have the money :)

We made a stop at Super Target and Publix on the way back to the hotel and got in a little before 9 pm. The kids were in bed with most stuff unpacked by 10 pm. Tomorrow we’re heading to the Magic Kingdom for a very full day with an open of 9 am and a close of 8 pm. I have read that Max might be able to rest in the first aid room if needed but we meet with Guest Relations first to over things. We’ll certainly have more to report tomorrow.

Chemo in Rhode Island

While today required a lot of advanced planning on the part of Tracy and the American Cancer Society things went very well for Max, Tracy and her Dad. They took the early morning high speed ferry from Block Island to Point Judith where they were met by Kathy from Road To Recovery. Road To Recovery is a program run by the ACS that provides help to cancer patients getting to and from their treatments. Everyone thought that Kathy’s Lexus with the GPS and video display for backing up was really cool. It came in especially handy when they tried to find a McDonald’s for Max to get lunch! Kathy is a retired school nurse from Succasunna, NJ who now volunteers for Road To Recovery in her spare time. I believe that Tracy told me Kathy’s sons went to URI.

The visit at the hospital went well. Max was expected and they treated everyone wonderfully. They do chemo a little differently there so it took a short conversation to explain what Max was used to as far as his IV placement but the great thing was that the blood work was turned around in just 20 minutes. Tracy sent me a picture of Max at the hospital waiting for his medicine to be prepared – the item in his lap is a hospital toy of some sort. She also send me a picture of Max on the ferry ride home. With any luck they should now be on their way to the beach.

No Change in Treatment ... yet?

Today we had planned on leaving by 9:00 but that wasn't critical so after gas, caffeine, and cash it ended up that we hit the road at 9:30. We made great time until we were about 11 miles away when we stopped dead for a little while. The accident that was responsible was on the other side of the road and looked to be an SUV that had flipped. The firemen we're looking at their handiwork in cutting the roof clean off the vehicle and the tow truck guys were trying to figure out how to winch the wreck onto the flat bed. It looked like the north bound lane was going to be there a while. Even with that small delay we got here by 11:30 am and registered with oncology.

Max got his patient bracelet and triaged right away (4' 9.5" and 102 lbs) and then talked to the art therapy person about the book of the week. This being Monday Max got to pick the new book, read it, and come up with the question that all who will follow him will need to answer. As a reward he chose the 2nd book of the Harry Potter series on audio tapes. We'll be starting that on the way home, I guess. Max got his IV started and then we headed downstairs for lunch. In the car he had outlined his lunch plan for me a number of times and it was to include a six piece chicken nugget happy meal with french fries and a low fat milk … and a toy, can't forget the toy. He was pretty excited about all that and was pretty shocked to see that the entire McDonald's space was in a shambles as it was being renovated! There was note on the door that said they would be closed July 29 to Aug 1. He was like a deer in the head lights - far too shocked to process what happening and get angry he just stared in disbelief. Workers were milling in and out and we were in the way so I got him to move and we talked about what we could do instead. That went far better than I had thought with only one "Why does my WHOLE day have to get RUINED by YOU!"

On the way to the main hospital cafeteria we ran into his endocrine doctor. While I was talking to her Max took off so I had to leave before I could catch her up. I like her and felt bad for ditching her but she understood. The new plan for lunch went pretty well with Max eating everything without a fuss but breaking wind quite loudly at the end. Thankfully it was loud in there and no one could pinpoint the source. We got to his ophthalmology appointment about 20 minutes early but had to wait a little while to get in. This place is always incredibly crowded. The visit went as expected but I learned the correct name of the new issue is "dense bilateral hemianopsia". I found a very cool site at the University of Indiana (http://www.indiana.edu/~pietsch/hemianopsia.html) that explains hemianopsia and the eyes in general. If images of cadaver brains make you squeamish, you might not want to visit (just brains, not their containers). In a nutshell, Max has lost almost all peripheral vision to the outside from each eye and this is more commonly referred to as tunnel vision. I had always thought of tunnel vision to be similar to looking through two paper towel rolls but I learned today that it is includes the area between the two tunnels as well. The thing for us to keep track of until our next visit is Max getting clumsier about walking into things.

After ophthalmology we went back to oncology where we knew we would have wait. There were two other very young children in the play area and Max went right up to the two Moms who were there talking and said, "Do you know what the book of the day is?" It is a real struggle for him to remember not to interrupt but here kids are forgiven an awful of lot social missteps. Anyway, Max was able to hijack the conversation and let everyone know that he had not only selected the book of the day but come with the question. He was also more than willing to help figure out the answer if there was any confusion. He retrieved the book for one of the Moms and she prepared to read to the two toddlers. Max had to get closer to see and hear the story, which had to be less than 40 words and he had read just a few hours ago, and in the process tried to walk through a wagon (wagons are often used as strollers/wheel chairs for toddlers). He ended up surviving just fine but everyone was terrified (including me) by how he reacted to what seems to have been just a fall to his knees. We did meet with his oncologist and much to my surprise she suggested that what we stay with his current treatment rather than change courses. This was good news as Tracy and I are both more than concerned about Max developing Leukemia regardless of how slim the chances. The thinking now is that the MRI that showed growth and movement in the tumor back in April was ahead of the impact to Max's vision. It could be that the nerves were already compressed but weren't suffering yet. What backs up this thinking is that the two eye exams that are 2.5 weeks apart show no significant change (yet do confirm a change). If the tumor had just started to damage the nerves they were expecting to see the damage progress, even in such a short period of time, as the area affected by this is crucial to both eyes and something more was very likely to have started going wrong. This means that the current chemo is likely to have stabilized the tumor. We don't want to wait too long to confirm this so Max will be scheduled for a follow up MRI and chemo/shots visit Sept 17 in Philly and a follow eye exam the following week on Sept 24 also in Philly. The only downside to the news is that while we thought he was going to take two weeks off of his treatments, instead Tracy will spent tomorrow coordinating insurance, hospitals, and referrals so that Max can get chemo on the two Tuesdays that he'll be on Block Island. Tracy was able to learn today that the hospital nearest to the ferry is in-network for our insurance so she just has to get contact information for everyone tomorrow so that they can talk and work out his treatment. Tracy and her Dad will take Max on the ferry back to the main land the first Tuesday and then I'll do the 2nd week (I'm only going up Aug 4, 5 and 11-18). With any luck it will all be arranged tomorrow and will only impact half a day for everyone. The next update will probably be from Block Island.

Thank you all for the love, prayers and keeping Max in your thoughts. We are all truly grateful.

Questions Arise

Today could have been better on a number of different levels but it also could've been worse. We had gone into today expecting to essentially get a rubber stamp at Children's Hospital in Philly that Max was doing well with his current chemo treatments and find out when Max would get schedule for surgery to put an access port in to make setting up his IVs a little easier. We had good reason to believe this as we had learned that the MRI Max had on Monday showed him to be stable. Unfortunately, that was only part of the picture. We learned during our visit with his neuro-ophthalmologist that Max appears to have had a fairly significant loss of his peripheral vision.

The apparent problem with the MRI is that it is not as detailed as one might think. Don't get me wrong, it is a truly amazing work of science and medicine. The alternatives of CT Scans or exploratory surgery for Max, especially given that he has had more than a dozen MRIs now, aren't even imaginable. Even so, the MRI gives a somewhat broad picture of what is going on in Max's head because there even millimeters matter and some of those millimeters are incredibly significant. While it is possible to see the swelling of Max's optic nerves as they come from the back of his eye to where they meet in the optic chiasm, it really isn't possibly to differentiate tumor and nerve in the chiasm to any great degree.

As I understand it now, after speaking to both the neuro-ophthalmologist and the neuro-oncologist, the tumor has further affect the optic nerves, most likely in the chiasm, which is causing the loss of peripheral vision. The chiasm is thought to be the source because both eyes showed the same dramatic loss and that is where the left and right eye's nerves cross on their way to the brain. What remain unknown are a few things though.

First, we don't for certain that Max has an issue. As it stands now the plan is to continue his current treatment for two more weeks and then visit CHOP again on Monday, July 30th to have his vision evaluated again. There is the possibility that today Max was just behaving oddly but I don't believe that scenario has good odds for two reasons: 1) He has always been very cooperative for his eye Dr. even when he has been uncooperative for the Dr. that does the initial evaluation and 2) His Dr. stopped me on the way out and said, "Dad, do you understand?" I replied with a simple "Yes" because both Max and Gwendolyn were with me but he followed up with "I'm very concerned." While I don't know him well I've seen him enough times with Max to get that this is no small change. Ugh.

Second, we don't know when this became a problem for Max. [This part wasn't discussed with the oncologist but will be July 30 - Tracy and I came up with this reasoning on our own while talking this evening.] Our theory is that the nerves could've been progressively getting worse but not shown detectable signs until after his exam in May. Extend the thinking a little bit and it seems reasonable to think that the chemo may have actually stopped a problem and that time might show stabilization or even improvement.

The reason that we are hoping the current treatment is effective is because the next choices all have side effects that we'd rather avoid, the worst being a less than 10% chance of developing secondary leukemia. That one frightens us quite a lot so will be trying to learn more in the next two weeks so that we can be well educated when discussing the next course of action on July 30.

In the meantime, a prayer for Max along the lines of "… hope Max was just having a bad day and the eye exam July 30 shows his peripheral vision is just fine …" might go a long way. Unfortunately, if that is what happens, Max will get the beating of his life for scaring us like that ;)

Quickly, before closing, the other 'level's that could've been better:
1) not getting up at 5:00 am after not being able to get to sleep until 1
2) not finding CHOP to be in the middle of a computer upgrade that isn't going as well as it should (I feel bad for them though as I have lived their pain)
3) Max eating his breakfast in the car, as I had thought he was, instead of not eating or drinking anything at all and then learning about that problem part way into a 3 hour session that could not be interrupted for food. (the instructions on eating the car had been very clear)

On the bright side, Gwendolyn did join Max and I today to see what Philadelphia is all about. It must seem to her that it is primarily about waiting. She did pick up that there is a problem and we've talked about it with her. She remains concerned but agreed there wasn't much to do until July 30.