Tylers MAW trip Oct 6-12

kissesbykim

Mouseketeer
Joined
Sep 11, 2010
Messages
173
This is our pre-wish report. There are no word to explain the extreme excitement going on in our house! Let me tell you a little about us!

Tyler oh Tyler....born on April 27, 2004 it seems like there has always been something with him. Nothing really life threatening until 8 months ago but a struggle none the less. Surgery at 6 weeks for an abscess, speech and language delays, not meeting his developmental milestones, ADHD and diagnosed with sensory processing disorder. When our life finally settled down and he was doing well in preschool, we decided to try for a second child. We had AJ on March 17 2009. Our house had calmed down a bit, Tyler was doing well in school and we had a new baby boy around. At 5 months, AJ had his first seizure. Really? I thought that was the worst day of my life. Then at 9 months, we unearthed a vicious egg allergy. Ugh, eggs..well, we've survived! Then, on February 6 2010, Tyler had been acting funny....legs and tummy hurt and he had no energy. After a trip to the ER, we learned he was diagnosed with Acute Lymphoblastic Leukemia.

Our road has been long but without too many bumps. Tyler is thriving on treatment. Although his journey will be long, we thank our stars that this is the kind of cancer he has. We consider ourselves blessed.

Disney has always been Tyler's favorite! Living in California, we've done Disneyland a lot. Just about every 6 months up until Feb. When we asked Ty what he wanted for his wish of course he said "Disneyland"...who knew something better was lurking just a plane ride away! So after showing him pictures of DW, he'd made his decision. Now, if I can just keep my self from stressing about plans and reservations and keep Tyler from exploding from excitement, we will be going on October 6 to October 12.

I'm a little long winded and I love to write so I hope people read! Happy Disney everyone!
 
Hello! My cousin had the same cancer when she was 5. She is now 19 and the star of her college field hockey team! She turned down a FH scholarship to play D3 so she could have a life while in college. Glad to see your son is doing so well! Can't wait to read about your plans!
 
So I talked to the MAW DW cordinator and she was giving me the rundown of our vacation. First off...I haven't flown in 12 years. That's right...12 years. The thought of it makes me all jittery :eek:. There is so much to do here in California, we always just drive. So I'm a little nervous about the long flight (red eye of course) to Florida. AJ is just 18 months old...I'm hoping that he doesn't scream the whole flight. I need them to sleep. Any suggestions?

The limo to go to the airport will arrive at 9pm on the 5th. We are about an hour away from the airport. We board our plane at 12:12, smack dab in the middle of the night. MAW is giving us a harness set to use on the plane for the baby. After a short layover in Houston, we are going to arrive in Orlando at 10:30.
GKTW sends us a greeter who will help us get our bags and rental car. I'm really glad we have such a late flight, this will give us plenty of time to rest up and enjoy GKTW.

Our first day will be spent at the Village :lovestruc. This will be my DH's second visit to GKTW. He stayed there when he was 15 during his sisters MAW trip (she had Lymphoma). Our wish coordinator said she's heard of people staying there twice but never as a child then as a parent. I think it's neat. There is going to be a lot going on in DW during our vacation and the MK closes early on both Thursday and Friday that week for MNSSHP. Epcot will be hosting the Food and Wine Festival. So we will be at Epcot day one (Thursday). I'm hoping that it isn't crazy crowded. Day 2 (Friday) will be spent at AK and HS. Day 3 we will be spent at DW....MAW has scheduled Tyler and I at the Pirates League, a wonderful activity that will dress us up and paint our faces as pirates pirate:. This is what Ty's wish is centered around.

We are really having a difficult time deciding what activities to do next. As most of you know, GKTW gives families tickets to US (2 day passes) and SW. There is also possibilities for Kennedy Space Center, Gatorland, Busch Gardens and other tickets that become available. And I've heard there is so much to do at the Village itself! I have one of those personalities....you know, everything has to be planned out to a T. :sunny: I understand that this trip I have to leave that part of me behind and just go with the flow. If you have any suggestions about planning something that someone is already planning? Lord help my family!

So, any tips you could afford me would be greatly appreciated. I really like this forum, glad I found you! :cool1:
 
Just found your trip and am looking forward to reading along. I don't have any real advice for you as to what you should do, just make it all about Tyler and what he wants to do and you will have a wonderful time!
 

Hello! My cousin had the same cancer when she was 5. She is now 19 and the star of her college field hockey team! She turned down a FH scholarship to play D3 so she could have a life while in college. Glad to see your son is doing so well! Can't wait to read about your plans!

I'm so glad to hear about your cousin! Wow! Hockey star! I know Ty will bounce back like that too!
 
Just found your trip and am looking forward to reading along. I don't have any real advice for you as to what you should do, just make it all about Tyler and what he wants to do and you will have a wonderful time!

Oh yes! Ty is definitely the decision maker on this trip! He usually is anyways, nothing makes us happier than to see him happy! I just hope he doesn't wear himself out too much....he doesn't know when to stop and rest! Thank you! :thumbsup2
 
We're going the week before you and I know what you mean about wanting to plan! You can see in my PTR that I have tried to make some sort of plan outline. Maybe it will give you an idea.

Good luck!
 
So I talked to the MAW DW cordinator and she was giving me the rundown of our vacation. First off...I haven't flown in 12 years. That's right...12 years. The thought of it makes me all jittery :eek:. There is so much to do here in California, we always just drive. So I'm a little nervous about the long flight (red eye of course) to Florida. AJ is just 18 months old...I'm hoping that he doesn't scream the whole flight. I need them to sleep. Any suggestions?

The limo to go to the airport will arrive at 9pm on the 5th. We are about an hour away from the airport. We board our plane at 12:12, smack dab in the middle of the night. MAW is giving us a harness set to use on the plane for the baby. After a short layover in Houston, we are going to arrive in Orlando at 10:30.
GKTW sends us a greeter who will help us get our bags and rental car. I'm really glad we have such a late flight, this will give us plenty of time to rest up and enjoy GKTW.

Our first day will be spent at the Village :lovestruc. This will be my DH's second visit to GKTW. He stayed there when he was 15 during his sisters MAW trip (she had Lymphoma). Our wish coordinator said she's heard of people staying there twice but never as a child then as a parent. I think it's neat. There is going to be a lot going on in DW during our vacation and the MK closes early on both Thursday and Friday that week for MNSSHP. Epcot will be hosting the Food and Wine Festival. So we will be at Epcot day one (Thursday). I'm hoping that it isn't crazy crowded. Day 2 (Friday) will be spent at AK and HS. Day 3 we will be spent at DW....MAW has scheduled Tyler and I at the Pirates League, a wonderful activity that will dress us up and paint our faces as pirates pirate:. This is what Ty's wish is centered around.

We are really having a difficult time deciding what activities to do next. As most of you know, GKTW gives families tickets to US (2 day passes) and SW. There is also possibilities for Kennedy Space Center, Gatorland, Busch Gardens and other tickets that become available. And I've heard there is so much to do at the Village itself! I have one of those personalities....you know, everything has to be planned out to a T. :sunny: I understand that this trip I have to leave that part of me behind and just go with the flow. If you have any suggestions about planning something that someone is already planning? Lord help my family!

So, any tips you could afford me would be greatly appreciated. I really like this forum, glad I found you! :cool1:

Hi there and :welcome: to the disboards. You will be getting lots of great info here. Where in So Cal do you live? We are also from here. We live up in the Antelope Valley. Do you go to CHLA? This will be our second time going to GKTW. Our youngest made a wish to go there and now my second daughter choose to go back. Our first time going there was our first time on a plane. I really don't want to get back on, but will do it for my daughter. I did say direct flight as I may not get back on again...lol
 
Hi there and :welcome: to the disboards. You will be getting lots of great info here. Where in So Cal do you live? We are also from here. We live up in the Antelope Valley. Do you go to CHLA? This will be our second time going to GKTW. Our youngest made a wish to go there and now my second daughter choose to go back. Our first time going there was our first time on a plane. I really don't want to get back on, but will do it for my daughter. I did say direct flight as I may not get back on again...lol

We actually live in Nor Cal, somewhere between Sac and Tahoe. So we go to Sutter in Sac for care. Thank God for these wish organizations :earsboy: ! They give these children something WONDERFUL to look forward to! As unfortunate it is that you qualify for two wishes, it is such a blessing :littleangel: ! Thank you for reading our PTR! I love this forum!
 
Hello!!

I found your wish trip pre-trip report! I know you guys are going to have a blast!

I put a link on the Wish Trippers thread to your report...I hope that is ok! :) That way some more of our folks will find ya and come over and say hello!

Feel free to ask any questions on the wish trippers thread, too. It is the blue link in my siggie - just jump right on in! :)

Check out post 2 for some wish trip hints, too!
 
We actually live in Nor Cal, somewhere between Sac and Tahoe. So we go to Sutter in Sac for care. Thank God for these wish organizations :earsboy: ! They give these children something WONDERFUL to look forward to! As unfortunate it is that you qualify for two wishes, it is such a blessing :littleangel: ! Thank you for reading our PTR! I love this forum!

Ok...Some reason when you said Disneyland and a hour from the airport I thought of LAX. This forum is the greatest.
 
Hello!!

I found your wish trip pre-trip report! I know you guys are going to have a blast!

I put a link on the Wish Trippers thread to your report...I hope that is ok! :) That way some more of our folks will find ya and come over and say hello!

Feel free to ask any questions on the wish trippers thread, too. It is the blue link in my siggie - just jump right on in! :)

Check out post 2 for some wish trip hints, too!

Thank you so much! I found the thread and I love meeting other wish families. Thanks again!
 
Joining in here too. I thought So Cal like Kris too, as we are in So. Cal to (about 20 min. from Kris). Look forward to hearing your plans and then hearing about your trip.
 
Here's my wish boy Tyler...

waitingforspinaltap2.jpg


My little monster AJ....

FamilyFun172.jpg
 
Joining in here too. I thought So Cal like Kris too, as we are in So. Cal to (about 20 min. from Kris). Look forward to hearing your plans and then hearing about your trip.

We love SoCal. I've been trying to talk DH into moving although now it's not an option. So much closer to Disneyland!
 
Tonight at 12:12 is our three week mark until departure. :banana: Tyler has no idea how long 3 weeks is so every night we rip a loop off of his Mickey chain that is hanging up in his room. Today, I've been making our shirts to wear our first day at DW. I've also received our itinerary. We would like to do some sort of character dining, maybe 1900 Park Fare. The Supercalifragilistic Breakfast looks like a fun time and since Ty loves Alice in Wonderland, he will enjoy it the most!
So, I need opinions about US and SW...Ty likes Harry Potter and I've asked him if he would like to go see Hogwarts..definate yes. But I need to know how much time should be alloted for both parks. It would be really nice to have a little resting time in the middle of the vacation just for the fact that I don't want Ty to run himself into the ground.
My other concern has to do with his port. He loves roller coasters. A LOT. I'm worried about how the bars will fit on his chest and if it will be too much pressure on his port. I would hate to find out the hard way.
All of a sudden my DH has come down with some kind of flu. He's usually pretty tough when he gets sick but whatever he has has really kicked him hard! If Ty gets this, it might mean another legnthly hospital stay...ugh! His ANC is pretty good...they actually upped one of his home chemo's to bring it down a bit but he's pretty anemic right now. We start a week of steroids tonight (another ugh) so his appitite will be fierce. So glad his trip falls right before the next cycle of steroids...I couldn't imagine dealing with "roid rage" and "disney madness" at the same time! :dance3:
I am enjoying reading everyone's replys and I read them to Ty. He's one great kid.

This is Ty a couple of months pre-cancer

firstday.jpg


Our last visit to DL

woodyandjessie.jpg


Our whole family at the Lilo and Stitch breakfast

disneyfamily.jpg


It's amazing how much Tyler has changed in just the last 8 months. He's getting his spark back and driving me crazy....I love it! :lovestruc
 
Just found your PTR and loved seeing the pictures of your family. I look forward to following along as you plan your trip and can't wait to hear about it when you return. All my best to your family.
 
Just found your PTR and loved seeing the pictures of your family. I look forward to following along as you plan your trip and can't wait to hear about it when you return. All my best to your family.

Thanks!

Here is the picture of my first Mickey tie-dye shirt. We are going to have the characters sign them for a fun souvenir! This was my first try so I will probably make several more so they are perfect.
mickeyshirt.jpg
 














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