Finding cancer's cure...by way of Disney!

[lotferg]

I spent so much time with my aunt as a child, people believed she was my mother. She married and had her own kids and I smothered the children with my love for all things Disney, and vowed to her that I would take her kids one day. About five years ago, she passed away suddenly. She left to cherish her memory a husband and three children; 4 year old twins and a 7 year old son. Three years later, my husband and I took all three of her children on a surprise trip to Orlando. I sobbed uncontrollably the minute we hit Main Street at the MK. Fulfilling the promise to my aunt was SO emotionally overwhelming. The kids had so much fun on the trip, they began talking about the return trip on the plane ride home.

The very next summer, Evan, one of the twins, was diagnosed with a form of cancer called Rhabdomyosarcoma. The tumor was in his brain, on a nerve behind his left eye. This caused his eye to close completely. Children with this rare form of cancer are given about a 50% chance of survival. After completion of one round of radiation and chemotherapy, the tumor is no longer living. Since this form of cancer travels through the nervous system, we learned Christmas 2007 that it had spread to his leg and lungs. The second round of chemo and radiation began immediately, so did talk of granting Evan a wish.

Evan's wish was not unlike most children his age; he wanted to go to DisneyWorld. This time, he wanted his father, who had never been, to go with him. Of course, his twin sister and older brother would also go. MAW wanted another adult to go. That's where I come in. I love these kids, and they love me. Reminiscent of the relationship between me and my aunt...times three.

We initially were planning to go in March, however, Evan's immune system was too fragile to even attempt the trip. His treatments have been scheduled so that doctors believe he will be well enough to go, May 19 - 24. I am an anal retentive trip planner. Surrendering control to the MAW Foundation has been very difficult. The letter we received on April 14 only gave flight information and dates, and informed us that we would not be staying at GKTW, as previously planned. There was no indication of where we would be staying. On resort? Off resort? OMG! I don't know! Twenty-one days away...I'm freaking out! I need to plan!

Thankfully, I found this board and it's plethora of TRs. It's making me feel a little better. My hope is that my TR, (which will be a reflection of my anal retentive, Type A personality) will be filled with lots of ridiculous details and funny stories. (These kids are HILARIOUS!)

Going May 19 - 24 are...
Evan (aka "Spill Master" & our wish child) - 10
Savannah (Savannah Banana Hannah Montana) - 10
Alphonso II (Fly Boy) - 12
Alphonso I, (aka "Uncle Foster") - he'd be mad if I told you...
Lottie (Me!) - 29

Pictures soon...

 

[happybratpack]

Wow, what a story. I can't wait to read more!!

 

[lotferg]

I'm attempting to post photos...hope this works!

Me, my husband, my brother, Alphonso II (with hat), Savannah & Evan. This was taken two months before Evan was diagnosed with cancer. (Easter Sunday 2006) Al II us now 5'11"...he won't be 13 'till June.

This is my favorite recent picture of the Spill Master feeding a chipmunk at the University of Michigan Children's Hospital.

 

[lotferg]

"Let's get jumpin', surf's up and pumpin'
Coastin' with the motion of the ocean
Whirlpools swirling, cascading, twirling
Hawaiian roller coaster ride"

We were staying at GKTW, then were told it was booked, now we're back at GKTW! The Hawaiian roller coaster ride song is stuck in my head. My incessant need to plan is being halted by the swirling, cascading, and twirling of plans beyond my control being changed. Maybe I should wait another week before making ADRs....

Good news is that Evan's latest scan results came back. The tumor in his head, which is no longer cancerous, is continuing to shrink. There has been no change to the spot on his leg. The spots in his lungs also appear to be improving. Little steps...that's all we're asking for, and we're very grateful for those.

 

[Princesskeyblade]

I am so glad that Evan is getting his wish and that you get to be with him. Make a wish is an awesome charity and one the DBF and I have begun to donate to regularly.

Evan looks like such a great kid. I mean I can't think of another boy his age feeding chipmunks.

I am glad that everything is improving. Small improvements will come together some day to equal one big ones.

I can not wait to read more!

 

[LeeLee2U]

Oh How I do NOT need another TR right now. Any kind!! TR or PTR. I'm so far behind on all the ones I'm on, BUT i'm loving this one already.

I'm glad taht you are getting to stay at GKTW since that seems like what you want. However if you get switched around remember it's o.k! We stayed on property at WDW and it was GREAT. In fact I think it worked out better for us. My DH had to go off a couple of times for Dialysis so if we would have already been off site this would have left me stranded wherever he was untill he was finished. This way me and th kids took Disney transp. everywhere and were able to go back to our room the couple of times my son HAD to rest. However there are places at the park. First Aid stations, the Wish lounge however if someone needs to rest. This proved great for us with both DH (who NEVER got the wheelchair he was supposed to get. "Oh I'll rent one tomorow baby!!" ) and our wish child.
I do want to give your Type A personality a little warning this way you can "plan" for it!!! I "planned" for it with a little encouragement by Wendy and Elisa and it REALLY helped me.
The plan is great. It really is great. However Plan within your Plan to veer away from the plan!!!
It is inevitable with our kids especially that something may happen to change your plans. not something necessarily bad either. Something special may happen. A Dream may get granted, you may have to rest more than you planned for. It might not longer or less time to do a certain activity and IT"S O.K> Also I know this NEVER happens to hardly anyone, BUT you may accidently leave your plans. Yep you might I know someone who did. ME!!!
I did have a little notebook and a pocket calendar where i had written down all of our ADRS because staying on property our wish Found had bought us the dining plan so all our meals were covered and we still had our spending money!!! Yee Haw!! (Remember I'm from Texas!! ) And yes I was such an avid planner that I kne most of our plans. O.k. All of them by heart but this gave me permission to be o.k. when something didn't go the way it was "supposed to go.
I have to say this trip was the best!!!For us it came at just the right time, ( Doesn't God hae a way of doing things like that? ) it was very needed and gave us the best memories that wehave really used in the last several vey hectic months.
Best Wishes and I will be Following along!!!

 

[lotferg]

Oh How I do NOT need another TR right now. Any kind!! TR or PTR. I'm so far behind on all the ones I'm on, BUT i'm loving this one already.

I'm glad taht you are getting to stay at GKTW since that seems like what you want. However if you get switched around remember it's o.k! We stayed on property at WDW and it was GREAT. In fact I think it worked out better for us. My DH had to go off a couple of times for Dialysis so if we would have already been off site this would have left me stranded wherever he was untill he was finished. This way me and th kids took Disney transp. everywhere and were able to go back to our room the couple of times my son HAD to rest. However there are places at the park. First Aid stations, the Wish lounge however if someone needs to rest. This proved great for us with both DH (who NEVER got the wheelchair he was supposed to get. "Oh I'll rent one tomorow baby!!" ) and our wish child.
I do want to give your Type A personality a little warning this way you can "plan" for it!!! I "planned" for it with a little encouragement by Wendy and Elisa and it REALLY helped me.
The plan is great. It really is great. However Plan within your Plan to veer away from the plan!!!
It is inevitable with our kids especially that something may happen to change your plans. not something necessarily bad either. Something special may happen. A Dream may get granted, you may have to rest more than you planned for. It might not longer or less time to do a certain activity and IT"S O.K> Also I know this NEVER happens to hardly anyone, BUT you may accidently leave your plans. Yep you might I know someone who did. ME!!!
I did have a little notebook and a pocket calendar where i had written down all of our ADRS because staying on property our wish Found had bought us the dining plan so all our meals were covered and we still had our spending money!!! Yee Haw!! (Remember I'm from Texas!! ) And yes I was such an avid planner that I kne most of our plans. O.k. All of them by heart but this gave me permission to be o.k. when something didn't go the way it was "supposed to go.
I have to say this trip was the best!!!For us it came at just the right time, ( Doesn't God hae a way of doing things like that? ) it was very needed and gave us the best memories that wehave really used in the last several vey hectic months.
Best Wishes and I will be Following along!!!

Thank you for your words of encouragement and caution! I have been trying (in vain) to read several of the wonderful TRs, (including yours) so I understand how overwhelmed you feel. It's just so much dang fun reading about everyone's escapades...laughing with the funny stories, crying over the little triumphs.

It is quite possible that I will stray from our trip plan, but there is NO POSSIBLE WAY for me to leave my plans at home...they are programmed into my phone/pda, which is glued to my hand. *lotferg shakes hand quickly* Gotta get this thing off before the trip or I can't ride EE!

 

[lotferg]

Pretty regularly, my mom takes Evan to the bookstore to buy books. On the most recent trip, he did not pick books for himself, he bought books for others. He happened to find a Tinkerbell book he knew I didn't have and asked my mom to buy it for me. As soon as he got home, he had to call and tell me about it, to make sure I wouldn't buy the book if I saw it.

This little story is just a testament to how wonderful Evan is. No matter how ill he feels, he is always concerned about others. I am looking forward to making sure this trip is about making him happy. Don't know how we're going to cram it all in, but here's the plan so far...

Monday, May 19 - Downtown Disney
If there are no travel problems, we'll get there in time for lunch and a trip to Downtown Disney and DisneyQuest.

Tuesday, May 20 - Hollywood Studios
When my husband and I took the kids three years ago, Evan rode ToT for the first time. The only thing I remember seeing when the doors opened and the elevator dropped was his arms flying all over the place. He screamed and screamed and screamed! When the ride was over, we had to go find first aid. Evan had scratched Savannah so bad, there was blood running down her arm. She thought it was funny. Evan has vowed to never ride it again, but can't wait to hear his dad screaming while he's sitting on the benches outside.

Wednesday, May 21 - Magic Kingdom
Last time, my mom bought Savannah a beautiful Snow White dress to wear. She begged...I told her it was much too hot to wear around the park. She cried, and I relented. We put the dress on her, caught the shuttle to the transportation center & rode the monorail in. By the time we got to the gates, she was drenched in sweat and begged to go back to the hotel and change. After I stopped crying (read PTR entry #1) and we took pictures in front of the castle, I pulled an pair of shorts and a t-shirt out of my bag and she changed, only to beg for the dress again to take a picture with Snow White.

Thursday, May 22 - Universal Studios & Islands of Adventure
Evan loves it, I love it, Savannah and Al love it, so we gotta go! Savannah thinks she's a roller coaster diva like me. She thinks she can handle the Hulk Coaster. She was too small last time. Let's see if I get off the ride with blood running down my arm! Evan doesn't care...he's only there for Spiderman, MIB and the Simpsons. Alphonso rides anything that moves.

Friday, May 23 - Epcot and Animal Kingdom
I don't have a clue how we're gonna do both in one day, but we'll make it happen. Al & Savannah watched Corbin Blue on the Disney Channel riding EE and want to save the best for last. Fly Boy (Al) thinks Mission Space isn't a ride, but training for his future career. Evan really likes Test Track and can't wait to do Living Seas with Nemo...he loves fish! Uncle Foster and Evan are both artists. University of Michigan Children's Hospital is hosting a father/son art show for them when we return. We have to get some good pictures on Kilimanjaro Safari & the Tree of Life for sketching later.

Saturday, May 24 - Travel day
We'll have some time in the morning to rest and go swimming before checkout.

I still have yet to add GKTW activities and dining plans...so much to do, so little time!

 

[kindakrazy2]

I am so in on your trip report!

I am a sucker for wish trips even if I tend to go through way too many tissues as I read them. Ask LeeLee, she'll tell you!

Can't wait to hear more about your plans!

 

[AURORA73]

I am so excited to hear about your trip. Glad to hear Evan is doing better.
My co-worker lurker is also excited to hear about your trip. They are in the early stages of planning a Make A Wish trip for their granddaughter and are excited to hear how your trip turns out.

 

[rebecca06261]

I'm so glad I found your TR! Despite your family's hardships, it's very inspiring! Keep planning!

 

[lotferg]

kindakrazy2, AURORA73 & rebecca06261...

Thanks a lot for reading! This board is flooded with so much information, I was hoping I'd get some readers.

Got a call from MAW, yesterday...stay tuned for more updates.

 

[lotferg]

Evan punched me yesterday. It really hurt...

Now before you start believing that I allow abuse from children, let me clarify the situation. Evan and his siblings know very well that physical violence is not tolerated EVER...unless a thumb war is declared or someone steals my cheese.

There was no thumb war or colby jack stolen. I stopped by their house to discuss trip plans with Uncle Foster after my kick boxing class. While sparing with Al, he got a little too close, and I blasted a good punch right into his chest. Wrestling ensued. Out of nowhere, Evan comes flying in and punches both of us. Everybody stopped in shock. I wanted to cry. I wanted to cry, not only because it hurt like heck, but my little Evan-monster was acting like a little boy...a real boy.

Evan, noticing the pause in play, smiled, threw his hands up and said his favorite word, "What?" He knew very well why there were strange looks on our faces. He had a chemotherapy treatment earlier that day and was feeling well enough to wrestle. Fantastic! The play fighting continued, with everyone being super careful not to get near his g-tube or do anything that would cause him any harm. Uncle Foster watched us and laughed. Al, Evan and I were all giggling like little school kids, wrestling on the kitchen floor.

MAW called and finalized all the plans and I have all of my ADRs! Evan picked all the restaurants. I was SO surprised to be able to get them this close to leaving!

Monday - Planet Hollywood
Tuesday - Sci-Fi Drive-In
Wednesday - NASCAR Cafe' (Universal...no ADR )
Friday - San Angel Inn

It's finally all coming together...just gotta wash clothes and pack now!

 

[pooksma]

I will be following closely your adventures.

I wish your family the best for a fabulous trip.

 

[Iluvmickeymouse!]

YAY!! Another wish trip TR! Sorry I didn't make it over sooner! You have done a wonderful job so far! I can't wait to read more!

 

[lotferg]

To pooksma and Iluvmickeymouse...

Today is Mother's Day. It's a wonderful day for most, but really hard on those who have lost their mother. For the past five years, I have been the recipient of the "Happy Mother's Day" projects the kids have done at school. The older they get, the easier it is for them to explain to their classmates why my name is on their cards instead of "Mom." Savannah, simply explains to her friends that her mom died and is with the angels, and that's OK, because she left someone here to take care of her.

Every year, on Mother's Day and on their mom's birthday, they buy balloons and release them in hopes that their mom will catch them in heaven. I am certain the same will happen today. The day we leave for Orlando is also the anniversary of her death. This trip means so much to the kids and their father. They've been through so much together. I'm so honored to be the "someone" left behind to help take care of them.

 

[Iluvmickeymouse!]

To pooksma and Iluvmickeymouse...

Today is Mother's Day. It's a wonderful day for most, but really hard on those who have lost their mother. For the past five years, I have been the recipient of the "Happy Mother's Day" projects the kids have done at school. The older they get, the easier it is for them to explain to their classmates why my name is on their cards instead of "Mom." Savannah, simply explains to her friends that her mom died and is with the angels, and that's OK, because she left someone here to take care of her.

Every year, on Mother's Day and on their mom's birthday, they buy balloons and release them in hopes that their mom will catch them in heaven. I am certain the same will happen today. The day we leave for Orlando is also the anniversary of her death. This trip means so much to the kids and their father. They've been through so much together. I'm so honored to be the "someone" left behind to help take care of them.

ok....that got me .....Happy Mother's Day!!!!!

 

[lotferg]

We're back and all suffering from Disney Depression. No one but Uncle Foster was ready to leave. Guess I will get started with the TR to overcome my depression. I apologize ahead of time for the potty humor, but it's part of the evils of having 10 & 12 year old boys around.

If you remember, my uncle and I did not tell the kids when we were leaving, but they knew that we were going. They spent several evenings crowded around the calendar in the hallway trying to figure out when we were leaving on Evan's Wish Trip.

Sunday, May 18, 2008

After church, I spent the evening at their house, trying to help my uncle wash and pack. It's still pretty cool here in Michigan, so most of the kids summer clothes were still packed away in the basement, needed to be washed and sorted, and the old stuff needed to be given to charity.

My uncle has had suitcases in his bedroom for a week. Savannah and Al were oblivious to their presence. Evan, on the other hand, pays attention to everything and noticed what was going on.

Evan - "Daddy, why are you packing my medicine in a suitcase?"

Uncle Foster - "I'm just getting rid of everything that has expired or you aren't using anymore."

Evan - "Oh. (long pause) If you're getting rid of it, why are you putting it in a suitcase?"

Uncle Foster - "I gotta put it somewhere! Go watch TV"

Later that evening....

Evan - "Daddy, why are you taking all of Al's shirts out of his drawer?"

Uncle Foster - "I've got to take advantage of Little More (don't know why they call me that) while she's here helping us sort of all the old clothes."

Evan - "But Little More left already."

Back I home, I tried to pack the rest of my things. Taking note of something I've read on Wendygrace's TR, I pack my clothes in a medium-sized suitcase, and pack that suitcase inside of a large one. This way, we have an extra bag on the way home for all of the goodies to be brought back. If you decide to do this, weigh your bag before you leave the house. Most airlines have a weight limit, about 50 lbs. Anything over that is an additional charge. On my digital home scale, the bag was 49.5 lbs! Airlines are also charging additional money if there is more than one bag per passenger, so I didn't want to split them. Cross your fingers! I'd rather spend the extra money on gifts.

Monday, May 19, 2008

All four alarm clocks went off as planned! Whew! That nightmare isn't coming true on THIS trip. My husband packs my bag into the car, and off we go to Uncle Foster's house. I make a quick stop at Walgreen's and while there, I get a phone call...

Uncle Foster - "You awake?"

Me - "Yep. At Walgreen's on my way to your place. Are the kids awake?"

UF - "They're walking around in disbelief. They had a conference in the hallway a little while ago, trying to decide whether or not I was kidding."

After I arrive and get mauled by the super excited kids, the limousine, a black Lincoln Town Car, arrives, much to the envy of the other neighborhood kids going to school.

Al - "Daddy, you need to pack extra underwear for me. I think I'm gonna crap my pants. This is SO cool."

Evan - "I knew we were leaving today! You guys are not good at lying."

After meeting our driver, a dead ringer for Matlock, we take a few pictures, jump in the car and are off to Detroit Metro Airport, about an hour away.

Matlock - "All aboard?"

Savannah - "All bored? No, we're not bored!"

The giggling starts...

Next episode....
"Why do you smell like that, Al?
"I KNOW I packed it. I can't believe it isn't here! Evan has to have that...what's the emergency phone number for MAW-Mi?"
"You kissed, what? Oh my God...that's so disgusting!"

 

[Iluvmickeymouse!]

Woohoo...you started!!!!!!! I can't believe you are back already! We welcome potty humor...it's what you get when you are around kids! I love that you didn't tell the kids exactly when you were going! Always fun to surprise them!!!!! I can't wait for more!!!!!!!!

 

[pooksma]

yay!!!! You're home safe and sound and the Trippie has started . Looking forward to more.