bellaririsa (Malia) Wish Trip MAW/GKTW June 2009

[bellairisa]

Hi everyone,

Let me just say that I'm extremely happy that I found these boards, I have so many questions that I know I'll either find the or have answered here. June is almost around the corner. Also I'm pretty new at this entire posting deal so please bear with me.

MAW has granted Malia's wish and is sending us to WDW in June 2009 and we couldn't be more excited. We'll be staying at GKTW and from what I've heard about it, it sounds like a fantastic place to stay at. But before I get into that let me do some introductions:

~Cast of Characters on this trip~
Me - Crystal
Malia - Wish child
Christine - my sister
my Mom & Dad aka Lia's grandparents

Sorry for the brief introduction but I promise to post more later, including Malia's story.

 

[bellairisa]

As previously stated, MAW has granted Malia's wish to go to WDW and this is our story:
When Malia was about 2 1/2 yrs old, she one day told me that her right ear was hurting her and kept trying to stick her fingers in her ear (why I don't know even now). The days prior to that she seemed like she just didn't have her usual amount of energy, the opposite in fact. Taking longer naps, just laying on the couch, and basically tired all the time. So I took her to go see her doctor the next day. After looking at her (and her ear) he said that she had an ear infection, which I knew was pretty common in toddlers. And so I was given a prescription of antibiotics for her. A week later I noticed a bump on her neck underneath her right ear, so I took her back to go see her doctor. After another exam, i was told that sometimes when an ear infection is draining, the lymph nodes nearby can become infected as well and this is probably what has happened, so we get another prescripton, only stronger.

Fast forward to next week, the bump is getting bigger, so on that Weds. I take a washable marker and circle the edge of the bump to mark it's size. Sure enough the next day the bump had grown larger in circurmfence than yesterday. Friday morning we're all eating breakfast and I have this feeling that something is off and I just can't put my finger on it. Later that morning I'm playing with Malia, she's talking to me, and I'm staring at her face trying to see if anything is different, when I realized what was wrong. Her entire right side of her face was not moving! I immediately grab the phone and ask for a appointment with her doctor for that day. 40 minutes later her doctor says he's sending us to the ER/hospital for surgery to have the lymph node drained that day.

So we go to the ER, and all the doctors and the pediatric ear/nose/throat specialty doctors are examing her and they tell me that they need to do some scans first before the surgery. So they start an IV on her ('Lia did not like that one bit) and they take us to the CT scan room, and after that, it's off to the MRI, the catch with the MRI was that they had to intubate her out of safety to her airway since she was so young and the scan takes 45 minutes. I'll never forget how she looked when they brought her out, still intubated, eyelids taped closed. After that they whisked her off to the pre-op area while we waited in the waiting room waiting for the staff to bring us back there. Finally the surgeon that was going to be operating on her comes out and tells us the results of the scans came back in, and they will not be draining the lymph node as planned because the scans reveiled that it was actually a very large tumor. In vain I wished for it to be non-cancerous.

Malia was diagnosised with Stage 4 cancer that had also metasized to a small portion of her lung. The main tumor was in the right side of her neck, growing into her jaw and back to where it was almost pressing into her brainstem. And due to the location of tumor it has caused the right sided facial paralysis which appears to be permanent now.

A long year of very aggressive chemotherapy and radiation followed. For the longest time Malia did not like any of the hosptial staff. Funny side story, I found out from one of her nurses that in her chart was written for any doctors who were going to be seeing her to take off their white coats before entering into her room so they wouldn't tip her off right away. And her nickname that developed from being in the hospital every 3 weeks for chemotherapy for 4 days each time, for a complete year, amongst the staff was "Firecracker." A nurse once told me that they liked seeing fiesty kids because it means that they have the strength to fight.

Fast forward-to present day- Malia has made it through and has been a year off of chemo. Her scans show that the tumor is stable and is not active right now. We were referred to MAW by her nurse manager at the end of her therapy. The MAW volunteers were so wonderful when they came to the house to ask Malia what her wish was, and of course in a very loud and excited voice, "I wish to go to DisneyWorld!"

 

[maroo]

I am so sorry that your precious child has been so sick!

I am so glad that she has been granted a wish. You guys are going to have a wonderful time!

I am going to put a link to your pre-trip report on the Wish Trippers Unite thread so hopefully some more folks will come visit over here!

We are glad you found the boards, too!!

 

[BeckySob]

Aw Malia, your daughter....your story, I'll admit, choked me up a bit. You guys have been through ALOT. I am so glad that Malia is going to DisneyWorld! She and you all will have a wonderful time!

I will begin praying for you.

Becky

 

[Corrine 1973]

I am sorry that your precious daughter has been through so much but am glad that the tumor has remained none active and pray that it remains so.

Congrats on your MaW trip to Disney World. I am sure that your will have a great time.

Keep us updated on things are going.

 

[bellairisa]

So there was a Rock'n'Bowl held at our bowling alley sponserd by the Sacramento’s Architectural and Design community fundraising event for the MAW foundation, all the procedes from that night got donated to MAW. They played a 15 minute video about MAW then they intoduced the guest of honor. The guest of honor for the night: you guess it, Malia!!

Her wish corodinator had asked us if we wanted to participate because the group/and MAW would like to have a local Wish family there, and I said of course we would love to come.

We got to bowl for free, food and drink as well, and everyone we met was so wonderful, Malia even bowl a couple of spares courtesy of the bumper lanes. All in all it was a great night.

 

[maroo]

So there was a Rock'n'Bowl held at our bowling alley sponserd by the Sacramento’s Architectural and Design community fundraising event for the MAW foundation, all the procedes from that night got donated to MAW. They played a 15 minute video about MAW then they intoduced the guest of honor. The guest of honor for the night: you guess it, Malia!!

Her wish corodinator had asked us if we wanted to participate because the group/and MAW would like to have a local Wish family there, and I said of course we would love to come.

We got to bowl for free, food and drink as well, and everyone we met was so wonderful, Malia even bowl a couple of spares courtesy of the bumper lanes. All in all it was a great night.

Aww!!!! How much fun!!

Are you planning on posting pics? I know some families don't feel comfortable posting pics...but I can help you today, if you want, in posting pics. I have some instructions on the Wish Trippers Thread, post #2, if you want to check there, as well.

Thank you for sharing your story with us!

 

[bellairisa]

Yes I plan on posting some pics later today if I get the time, I did see the posting pics instructions that you posted, much appreciated since I'm relatively new at this.
whoops, I'm off now, time to do a GT feeding for my DD...

 

[Corrine 1973]

So there was a Rock'n'Bowl held at our bowling alley sponserd by the Sacramento’s Architectural and Design community fundraising event for the MAW foundation, all the procedes from that night got donated to MAW. They played a 15 minute video about MAW then they intoduced the guest of honor. The guest of honor for the night: you guess it, Malia!!

Her wish corodinator had asked us if we wanted to participate because the group/and MAW would like to have a local Wish family there, and I said of course we would love to come.

We got to bowl for free, food and drink as well, and everyone we met was so wonderful, Malia even bowl a couple of spares courtesy of the bumper lanes. All in all it was a great night.

This sounds like so much fun!!!!

I am glad you were able to participate.

Can't wait to see those pics!!!!

 

[bellairisa]

Whew it's 11 pm and I finally have time to post pics, I was at first only going to post a couple of pics, but then had the idea of posting a sort of picture journey of my DD Malia's story starting when she was 2 1/2 yrs old and ending when she is now 4 1/2 yrs old. And yes, I may look like a teenager still but I swear I'm 28 yrs old lol I hope you all enjoy:

One week prior to her symptoms starting up

During the 1 year chemo:

Dec 2008, 9 months off of chemo, at DL in front of It's a Small World

Last Thursday's Rock'n'Bowl for MAW foundation:

 

[Corrine 1973]

yeah pictures!!!!!!! My favorite part!

Your daughter is beautiful.

Can't wait to see more.

 

[bellairisa]

Whoo-hoo! Finally got a rock solid confirmation from my DD's wish coordinator, our trip is from 6/15-6/21! Now I can really get on things moving and grooving. I was so excited that I went on-line and bought my DD a MAW hat and shirt to celebrate. I hope all the moms out there had a great mother's day yesterday.

 

[maroo]

I am so glad you guys got dates!

Your daughter is beautiful!

Thanks for posting pics!

 

[tinytreasures]

you are going to have so much fun

yah for dates

 

[Matt1026]

What a beautiful little girl! I can not wait to start reading your pre-trip report!

 

[bellairisa]

So I'm starting to plan out where we're going to go during our trip and pls feel free to offer any advice on anything, it's more than welcome. So our flight is at 6:30 am which means the limo is picking my DD Malia, Christine (see cast of characters) and myself at 4:30 am. Wow that's early! LoL We're flying out of Sacramento, and landing in Orlando at 5:30. The good news is that we won't have any baggage to check in. Yes you read that right, no baggage! Are we crazy? Nope, the answer: 'Lia's grandparents (my parents) who MAW are sending on this trip as well are opting to drive to Florida from Sacramento. We've done this drive a couple times with them when my sister and I were younger. It's about a 3 day drive and they'll be taking our suitcases with them in the car, so when we check in at the airport we'll only have our carry-on items and 'Lia's medical bag.

Question: Does anyone know about the flight regulations on metal cans? We G-tube feed 'Lia. I've checked about going over the 3-1-1 policy on fluid restrictions and there is an exemption on baby formula/medical supplies which I would think the G-tube formula counts as. But my question is if anyone knows if they'll let me bring the sealed formula cans on the plane?

On-to the parks:
Must do list Magic Kingdom:
ToonTown
Meet Mickey Mouse & friends (unless they're upfront in the entrance)
Fairy Meet & Greet
ToonTown Hall of Fame and any other characters we come across
The Barnstormer @ Goofy's farm

FantasyLand
Mickey's PhilharMagic
It's a Small World
Many Adventures of Winnie the Pooh
FantasyLand Play area
Mad Tea Party
Dumbo

TomorrowLand
Space Mountain (for the adults, Lia's not tall enough yet)
TomorrowLand Speedway
Buzz Lightyear ride

Adventure Lan
Magic Carpets of Aladdin
Pirates of the Caribbean

FrontierLand
Haunted Mansion
Splash Mountain

Shows:
the daytime parade (i don't know what it's called)
SpectroMagic
Fireworks

Must-Do Epcot:
Character Meet-n-Greet
Ellen's Energy Adventure
Spaceship Earth
Journey into Imagination w/ Figment, maybe?
Maelstrom
Soarin'
Test Track
The Seas w/ Neo n' Friends

World Showcases w/ Kidcot charms
Kim Possible mission

shows:
IllumiNations

 

[kimmylaj]

hi i am new to your report . your daughter is so cute, i love the story about her nickname and the doctors coats. too funny. so far your plans look really good. cant wait to hear more

 

[bellairisa]

hi i am new to your report . your daughter is so cute, i love the story about her nickname and the doctors coats. too funny. so far your plans look really good. cant wait to hear more

Thanks and welcome, when I heard it from the nurse, I laughed so hard, it was a nice feeling to know that the doctors and staff cared enough to try to make my dd as comfortable as possible with them.

Onto the trip:
I got a surprise today! My parents who are coming along on this trip informed me that when our 1 week is up at GKTW, they had booked their timeshare in Orlando, and we are staying there for another full week! I called my dd's wish coordinator and she said that it wouldn't be problem and that it sounded like a great idea! MAW is paying for the first week, and we're paying for the second week but we would still get MAW "magic" on our 2nd week at the parks. I'm even more excited to go now. Two weeks at Disney?! It's so awesome, it's B-awesome! (Sorry, parapharse-ing Rhino from Bolt)

 

[maroo]

Thanks and welcome, when I heard it from the nurse, I laughed so hard, it was a nice feeling to know that the doctors and staff cared enough to try to make my dd as comfortable as possible with them.

Onto the trip:
I got a surprise today! My parents who are coming along on this trip informed me that when our 1 week is up at GKTW, they had booked their timeshare in Orlando, and we are staying there for another full week! I called my dd's wish coordinator and she said that it wouldn't be problem and that it sounded like a great idea! MAW is paying for the first week, and we're paying for the second week but we would still get MAW "magic" on our 2nd week at the parks. I'm even more excited to go now. Two weeks at Disney?! It's so awesome, it's B-awesome! (Sorry, parapharse-ing Rhino from Bolt)

THAT IS AWESOME!!!!!!!!!!!!!!!!!!


Wow!!!!

Do you still need that planner?!? You guys are going to have a TON of time!

Do you plan to buy more Disney tickets? There are other theme parks, too, that you could visit for free while you are at GKTW...

You might want to talk to Nicole, Noah's Mom...although they did not get to stay the whole time, they did plan for a whole 2 weeks.

I think they made sure, on the first week, that they made it to all of the GKTW activities, parties, etc and focused less on the parks.

You could do Universal for 2 full days and Sea World one whole day? And take a full day to do the activities at GKTW and rest. I wish every single family could do two weeks! That is fantastic!

I think you can get other tickets...like to the Space Station and such, too?? Not sure on that.

Also...although you can't sleep at GKTW, you can continue to go to the parties and eat free meals even after your official stay is over. Wish Families have an open invitation to come back at any time and enjoy those things...so you could still do some the second week!

I am so excited for you guys!

 

[Corrine 1973]

Yeah!!!!!

That is so great that they are doing this for you. Can't hear about all the things you get to do in TWO HOLE WEEKS!!!!!!!!