Thursday, July 31, 2008
Please keep Michael in your thoughts and prayers, JoAnne
Wednesday, July 30, 2008
As is common on Monday after treatment, Michael didn't feel the best. He woke up during the night shaking his hand and complaining of the "sand" feeling that he gets from the Vincristine. He also had pains in his stomach and didn't have much of an appetite. But we started our day as planned, hoping to distract him from his discomfort.
One of the advantages of staying in a Disney hotel is that it is just a short walk to get to the parks. One thing we enjoyed the most about southern California was the absolutely perfect weather. The temperature was cool in the morning and then gradually warmed up to the mid-70's. And there was no humidity like we have here in northern New York.
To get to Disneyland, we walked a couple of blocks to Downtown Disney and caught the monorail straight to the park.
I am sure everyone recognizes these pictures - Disney Main Street and Cinderella's Castle. (BTW - Michael believes Disneyland is the happiest place on earth because they have the best hot dogs in the world.)
The monorail dropped us off in Tomorrowland right next to the new Finding Nemo ride so we hopped right on. Disney had given us a special card that allowed us to enter the rides through the exit so we didn't have to wait in line. And some of the lines were more than an hour long! Finding Nemo is a submarine ride and Michael didn't care for it because there was a shark that scared him.
So next we tried the Autopia ride. This is where you drive little cars around a track. Jeff and Jenny were in the first car with Brian, Michael and I following. Brian operated the gas pedal, Michael steered and I hung on for dear life! Michael loved this ride - in fact, we did it again in the afternoon. At the end of the ride, there was a photo booth where you could have your picture taken and create a driver's license. Now Michael has a license that he can show the security guard at the hospital when we check in for chemo.
We also did the Buzz Lightyear Astro Blasters ride, which was a riot. You rode in cars and shot lasers at targets that were around each corner. Brian had the high score for this game out of our little group. After we left the ride, Michael had to have his own laser so that he could adequately protect the princess (which was me) from the bad guys (and of course he got it.)
Michael was very grouchy and not really interested in the rides (doesn't he look grouchy). We had an appointment at 11:45am to meet with the Pooh characters at the Wish Lounge so that is where we headed.
The wish lounge is just off Main Street and was a very nice place to relax and hang out. They had a bed with lots of big, comfy pillows and a couple of chairs. There was also a big screen TV where you could watch movies (Disney, of course) and a chest full of games and coloring supplies. It was nice and cool in the lounge and they had cold drinks and crackers for visiting Wish Kids and their families. So, we hung out for about 45 minutes waiting for our friends to arrive.
The woman that worked in the lounge suggested a friendly game of Candyland for the new friends.
There were hugs....
and smiles all the way around!
On a side note - Genie is the Disney ambassador for Make-A-Wish and the mural behind Pooh in the above picture was made up of thousands of tiny pictures of Wish Kids at Disneyland. It was incredible and instantly brought a tear to your eye and a lump to your throat.
After we left the Wish Lounge, we headed for Mickey's Toontown where Mickey, Minnie, Donald, Goofy and their friends lived and hung out (although Michael wouldn't have anything to do with the characters he met throughout the park).
We stopped by Minnie's house but she wasn't home. And Michael didn't think we should go in without her permission but we assured him she wouldn't mind.
We stopped by Mickey's house, too but there was a LONG line to actually get to see him.
I think this ride was called Gadget's Go Coaster and was actually the second roller coaster we went on that day (but as you will see over the next couple of posts, it is far from the last). Michael liked this one but didn't like the first roller coaster we rode, Big Thunder Railroad, because there was an abominable snow monster that startled him.
This was the Fire Station in Mickey's Toontown and by this point it was starting to warm up and my family was already tired of posing for pictures. So, we grabbed a light lunch and headed to Critter Country where Pooh and friends live. Michael was sure we would find Darby there but, of course, we didn't.
So we checked out a few of the rides and attractions and then headed back to our hotel to go for a swim and to wait for the day to get a little cooler. When we got off the monorail in the evening, we headed for New Orleans Square and had a sandwich for dinner. Then we walked around and rode some of the attractions while we waited for the nightly fireworks show. We went on the Pirates of the Caribbean ride and were all in awe. The animated figures and special effects were amazing (in fact we went on this ride a second time on Wednesday). Then Michael fell asleep so Jenny stayed with him while Jeff, Brian and I went through the Haunted Mansion, which we loved too.
We took the Disneyland Railroad back to Main Street and the front gates to get back to our hotel and were able to see some of the fireworks while we walked. (The monorail didn't run during the fireworks.) We'll get a good night's sleep and tomorrow will take you to Disney's California Adventure.
Please keep Michael in your thoughts and prayers, JoAnne
Tuesday, July 29, 2008
It's time to head to the airport.
This is the goofy smile my 2 boys always give me when I take their picture (which is a shame since they both have beautiful smiles).
The lights in the roof of the limo looked like stars - Michael thinks we need these in our car.
He liked the fish lamp too. There was a wet bar with cold sodas and juice boxes set up for us.
A tender moment between a little brother and his big sister.
The ride to Syracuse was a lot of fun. We got to the airport in no time and sailed through checking in and security. Before we knew it - it was time to board our plane.
The flight attendant came into the terminal looking for a "special passenger" that she had heard was flying that day. She took Michael down to meet the pilots and check out the cockpit. They even let him push one of the buttons that sets off the announcement tones.
The flight was smooth and uneventful. It was about an hour flight to Cincinnati where we had a 45 minute layover - which was just enough time to catch our connecting flight. It's a good thing I had packed some sandwiches and a bunch of snacks or we would have been starving by the time we got to the west coast. The last leg of our trip was around 4 hours and Michael looked out the window and chattered the whole way.
When we got to LAX, we picked up a mini-van that Make-A-Wish had rented for us and headed for our hotel on Disneyland Drive. Jenny brought her GPS, named Jill, which was great to have. (By the way, Michael knows how to spell GPS - it is "G" "P" "S".) Jill can get an attitude if you don't do exactly what she says so sometimes we had fun tormenting her (hey - it kept us entertained in the car).
Our hotel - Disney's Paradise Pier. It is one of 3 hotels in the Disney complex.
Goofy was in the lobby to greet us. (BTW - Goofy's shirt may look like a peppermint candy but it doesn't taste like one - don't ask me how we know this.)
By the time we checked in, it was around 5pm but our bodies thought it was 8pm due to the 3 hour time change. We were all pretty hungry so after we took our stuff to our room, we headed to the PCH Grill (the restaurant right in our hotel) and had a nice dinner. Michael ordered a Make Your Own Pizza.
They brought all the fixings out on a Mickey Mouse shaped tray (and of course there was a chef's hat)...
Michael spread the sauce on the crust...
added a little cheese....
and some pepperoni...
Then the waiter took it to be cooked in a wood fired oven and presto - the best pizza ever according to Michael (and I have no doubt it actually was).
We wound out the evening by checking out the rooftop pool.
As usual - Michael couldn't wait to go swimming.
On the other hand - Jenny and Brian preferred the hot tub.
There was an awesome water slide next to the pool that Michael loved (and I have to admit, I did too).
The first time Michael went up the slide, Jenny went with him and was going to ride down with him. The lifeguard said everyone had to go alone so Michael hopped right in and down he went! Then he jumped out when he got to the bottom and headed straight for the stairs again (and again and again). I am sad to say that I meant to take the camera down to the pool and get some pictures of Michael on the water slide but I never did.
After the kids went back to the room and settled in for the night, Jeff & I took a walk to Downtown Disney to spend some quiet time alone for our anniversary. This is a neat area with a variety of shops, restaurants and live music. Then we turned in to get a good night's rest in anticipation of our big day at Disneyland... and that is where I will take you tomorrow.
Please keep Michael in your thoughts and prayers, JoAnne
P.S. I am sure that by now everyone has heard that there was a 5.4 earthquake in southern California today. I read that they had to evacuate Disneyland. My first thought was that if the quake had happened one week earlier, we would have been at Disneyland. I guess our guardian angel was watching out for us.
Tuesday, July 22, 2008
The limo picked us up right on time and Michael had a ball on the ride to the airport. There were cool lights throughout the limo and they had juice boxes and soda set up in the mini-bar. It was definitely a more luxurious trip to Syracuse then we do on Fridays.
We sailed through security and the check in. Cheryl and Michelle from Make-A-Wish were there to see us off. Then the flight attendant came and took Michael took check out the cockpit before anyone else boarded. Michael enjoyed the flight. In fact - he said that it was the "bestest day of his life" while we were in the air. We changed planes in Cincinnati and everything went smoothly. We thought Michael would fall asleep on this leg of the trip (4 hours) but he didn't. He was WAY too excited.
We landed in Los Angeles and picked up our luggage, caught a shuttle to our rental car and found our hotel with no problem. After we settled in we had dinner at our hotel and went for a swim. Jeff and I took a walk to check out Downtown Disney , which was awesome. Then we went to bed fairly early (early California time, not New York time!) .
Monday morning Michael woke up and didn't feel very well. Over the last week, the Vincristine side effects started showing up. Michael has been walking with "heavy" feet. He woke up during the night Sunday and complained of the "sand" feelings in his hands and yesterday morning, he had terrible pains in his stomach. And although he was somewhat cranky - we headed to Disneyland bright and early.
We took the monorail and Michael was thrilled (he calls it the bullet train like the one in Japan he wants to ride someday). We tried to get him interested in some of the rides but he just wanted to meet Darby. So we headed to the Wish Lounge early and waited for his character meet and greet (which we thought was going to be Darby).
Pooh, Tigger and Eyeore came and Michael was shy at first but eventually warmed up. He even played a game of Candyland with them. When I asked if Darby would be coming, we were told that there was no Darby. I asked if she would be here later this week and was told I misunderstood, there is no Darby at Disneyland. Needless to say, Michael spent the whole day looking for Darby and asking when he was going to meet her and we didn't know what to tell him.
So, I called Make-A-Wish back home and they checked with the Los Angeles chapter and were told that Michael wouldn't be "meeting" Darby at all. He was going to meet Handy Manny at Disney's California Adventure who would escort him to the Playhouse Disney Live Show. There he could watch a Darby puppet but wouldn't be able to interact with her.
Michael enjoyed meeting Handy Manny and the show was a lot of fun but it wasn't what he wished for. I don't want to complain because this trip is incredible and was very generous of Make-A-Wish but I would be lying if I didn't say we are all disappointed (especially Michael) that Michael won't be meeting Darby (and I will leave it at that).
We spent most of the day at Disney's California Adventure and had great time (we all liked it better than Disneyland). We came back to the hotel for a while. We are all rested and cooled off now and are going to go for a swim and then head back to the park.
The rest of the week, we are going to buy another ticket to go to the Disney parks for another day, visit Legoland and check out one of the beaches. I will post again if I get a chance but time seems to be flying. Please keep Michael in your thoughts and prayers, JoAnne
Sunday, July 20, 2008
Six years ago today, Jeff and I exchanged wedding vows at a romantic castle on an island surrounded by those closest to us. We picked this date to start our new life together because it is the day my parents got married, my brother and sister-in-law exchanged vows and most recently, my nephew took a bride.
Unfortunately all of those happy occurrences were overshadowed one year ago today when our world came crashing down around us. You see, that was the day we headed home from our Vermont vacation with a little boy that was sick - we just didn't know how sick but we would soon find out.
July 20th, 2007 was the day that Michael was admitted to our local hospital where we were told that the episodes we had been witnessing were partial seizures. And the night would close with our pediatrician gently telling us that the CT-scan that had been done earlier in the evening showed a mass in Michael's brain and that he should be transferred to Rochester immediately for more specialized care. And so began our year of darkness and uncertainty.
And that brings us to today, July 20th, 2008. This dawn is returning this date on the calender back to happy memories for us as we wait for the limousine to arrive to take us to the airport where we will head to California. As you know, we recently learned that Michael's arduous treatments are working and the tumor is shrinking. And now, through the generosity of others, our family can get away from the daily strain of doctor's appointments, needles, medicines and tests and celebrate the future that is looking brighter than it has in a year.
Please keep Michael in your thoughts and prayers, JoAnne
Saturday, July 19, 2008
We received our itinerary yesterday and that increased our excitement level tremendously. Make-A-Wish has rented a car for us and we have 2 rooms at the Disney Paradise Pier Hotel. We have passes to Disneyland and Disney's California Adventure Park for Monday and Tuesday. Michael also has a meeting with the Pooh characters on Monday and Handy Manny on Tuesday. Wednesday, Thursday and Friday are free days and they have reserved tickets to Legoland for us to use one of those days. We would also like to take Michael to see the ocean one day so we are going to have a busy week. Then we will be flying home on Saturday.
I am going to try to get some sleep now (all of us adults are as excited as Michael) as the limo will be here to pick us up at 8:30am. I will post as often as I can during the week to share our fun with everyone. (It's nice having something positive and upbeat to share with Michael's readers.) Until then - Please keep Michael in your thoughts and prayers, JoAnne
Wednesday, July 16, 2008
Jeff's Mom came and picked Michael up after work so that everything could be set up in secret. Tammy and Cheryl turned our backyard into the 100 Acre Woods as they laid out blankets, tablecloths and a whole family of Teddy Bears. Then they added decorations and set up a smorgasbord of pizza, fresh fruits and vegetables, chips and dip and plenty of drinks. A selection of Disney tunes played in the background.
Then all of our family (that lives locally) arrived and we waited for the guest of honor to come home. The 2 ladies on the left in the picture below are Tammy and Cheryl.
And as I said, Michael was overwhelmed when he arrived and saw everyone waiting for him. He went up on the deck and I talked to him for a minute before he finally understood what was going on and happily joined the party.
After our picnic dinner, there was a gift for Michael from Darby.
And you will never guess what it was - a karaoke machine and a stack of karaoke CD's! Michael was thrilled. When we set up the machine, he told Brian that this was the best day of his life.
And then to wrap up the party we had cake delivered by Pooh himself. (That is really Tim but sshhh... don't tell Michael.)
There was a little singing, a little dancing and a whole lot of fun at our home tonight. And now we will count down the hours until Jeff, Michael, Jenny, Brian and I begin our week long adventure. Of course, I will take my laptop and share all the details as they happen so check back often.
Please keep Michael in your thoughts and prayers, JoAnne.
Friday, July 11, 2008
Yesterday, after leaving Dr. Korones we went back to the hotel for one last swim and then we headed to the Strong National Play Museum. We thought this was going to be a small museum that we would spend an hour or so at and then head for home. Boy were we wrong! We stayed all afternoon and didn't see and do half the things there. So, sit back and relax and I will share with you some of the fun that we had.
First, we checked out the Discovery Garden just outside the front entrance.
When you enter the museum, there is a large atrium in which they have relocated an authentic 50's diner in front of a life size facade of a city building. (We grabbed a hot dog in here and it was really fun.)
Next to the diner is an antique carousel.
As you make your way through the museum, the next thing you come across is a replica of the Sesame Street sound stage. It was really neat - did you notice Big Bird and Oscar's garbage can?
Moving right along - we came upon an area dedicated to toy trains including a hands on train table.
And a train you could ride.
The most memorable part of the day for Michael was when a butterfly in the butterfly house (which was one of the most incredible things I have ever experienced) landed on his hand and"tasted" him.
Then Michael got to sit in the cockpit and pilot a helicopter.
This was part of an old Victorian house completely set up. Behind Michael - to the right is a child size table and chairs set up for a tea party and to the left is a parlor complete with a small library and velvet chairs where you can take a break and read a book with your child (there were a lot of reading nooks and shelves full of books throughout the museum).
Here is the house's kitchen. (Remember everything here is touchable and hands on.)
This area is dedicated to nursery rhymes, fairy tales and everything make believe.
There were lots of little stages and play costumes where make believe is encouraged - and our little boy can be King for a day.
This is a giant giant that you could control his arm and head movements with some levers at his feet. (And you can get a good idea of just how big the giant is.)
I guess Michael wasn't meant to be the next King of England!!
There was a huge pirate ship that you could climb and play on and at the base there was a "beach" of fake sand. Michael spent quite a bit of time playing in here.
The last part we visited was the Bernstein Bears.
Michael spent a long time playing in Papa Bear's workshop. There was also a quilt shop, a farm, a restaurant and much more. The kids around Michael's age seem to enjoy this part the most.
Well - I hope you enjoyed our little adventure. As I said, we didn't get through a lot of the museum and I can't wait to go back and see the rest. Please keep Michael in your thoughts and prayers, JoAnne