Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Pre-Trip Reports and Plans
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS Updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read


Reply
 
Thread Tools Rate Thread
Old 07-25-2010, 01:40 AM   #1
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

The TRIP of all Trips... Ana's MAW PTR... *TR STARTED* Link- Post #1901 Pg. 127

This PTR is going to be all about my daughter's Make-A-Wish (MAW) trip to Disney. Although we have been to Disney a few times, this trip is going to be totally different. There are so many different factors that will make this planning unlike any trip in the past- including the fact that as of today, we still don't have confirmed dates!

I guess I should start with who 'WE' are....


First is Juliana (4) our WISH kid.



Juliana is a vibrant, caring, smart kid who loves everything Disney and princesses.



My DW Melody (33)



Melody is known to pop her head into my TRs from time to time. Hi Mel!



Then there is me, Tim (32)



I am the DIS addict of the family. I love boating, snowboarding, and spending time with my friends & family.


I'm going to need your help! Not only are we going to be going to Disney, we are also going to Sea World and Universal Studios. We have never been to SW or US, so I don't have a clue about either park. I will tell you Juliana's story of why she was selected for MAW in my next update.

Help us plan!

Last edited by that's nice; 12-10-2010 at 12:22 PM.
that's nice is offline   Reply With Quote
Old 07-25-2010, 01:41 AM   #2
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

1) Why A Wish? P.1 Post #5
2) Why A Wish? Pt.2 P.1 Post #7
3) MAW Is Coming! P.7 Post #97
4) The Beginning of the plans.... The VERY beginning P.10 Post #139
5) Doctor Update 8.10.10 P.14 Post #209
6) Pixie Dust from a DISer...P. 16 Post #240
7) Our schedule... Take 1! P. 18 Post# 269
8) JoBros Pics P.20 Post# 294
9) BREAKING NEWS... P.21 Post #312
10) MAW called.... we are official! P. 25 Post #367
11) First Reservation made.... P.26 Post #384
12) Our schedule... Take 2!... 8/27 P.30 Post # 445
13) Schedule with new ADRs! 9/1 P.33 Post #486
14) Trip News.... 9/8 P.37 Post #551
15) Pic Update! 9/9 P.39 Post #571
16) Mini Update 9/15 P.43 Post #632
17) Update 9/21 P.47 Post#695
18) Update 9/27 & Cinderella sent Ana a card! P. 51 Post #757
19) More Pixie Dust & some BIG news!!! 10/5 P.57 Post#851
20) What could this be at the door? Pt.1 10/8 P. 61 Post# 913
21) What could this be at the door? Pt.2 10/8 P. 62 Post# 917
22) Even More Pixie Dust!!!!! Pt.1 10/11 P.67 Post #996
23) Even More Pixie Dust!!!!! Pt.2 10/11 P.67 Post #1000
24) The Big Give Strikes Again!!! 10/18 P.74 Post #1108
25) Is it crunch time yet? Updated plans 10/20 P.76 Post #1136
26) Just when you think it can't get any cooler.... Pt.1 10/25 P.79 Post #1185
27) Just when you think it can't get any cooler.... Pt.2 10/26 P.80 Post #1191
28) Halloween Pics 11/1 P.85 Post #1262
29) Countdown Calendar T-minus 30! 11/2 P.87 Post #1293
30) Big Give Weekend Pt.1 11/2 P.87 Post #1295
31) Big Give Weekend Pt.2 11/2 P.87 Post #1297
32) Big Give Weekend Pt.3 11/2 P.88 Post #1314
33) 3 guesses??? 11/5 P.91 Post #1352
34) MAW News.... Kinda Sorta 11/7 P.92 Post #1380
35) Big Give Central.... 11/9 P.95 Post #1420
36) Who says Saturday is a day off? 11/9 P.95 Post #1423
37) 19 days to go!!! More Big Gives! 11/12 P.98 Post#1456
38) 13 days and counting.... 11/18 P.102 Post# 1519
39) Keeping up with the Big Give! 11/18 P.103 Post#1536
40) MAW meeting 11/23! P.107 Post#1592
41) We are almost there!!!!! 11/28 P.110 Post# 1649
42) Pixie Dust & Big Gives 11/28 P.110 Post# 1650
43) The Final Big Gives! 11/29 P.111 Post# 1651

Last edited by that's nice; 11-29-2010 at 01:17 AM.
that's nice is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 07-25-2010, 07:57 AM   #3
Flossbolna
Sea days are just so relaxing!
Once you are as old as I am, you will understand!
 
Flossbolna's Avatar
 
Join Date: Sep 2006
Location: Nuremberg, Germany
Posts: 6,949

Hi Tim! I am looking forward to read about all your planning! I am sure it will be a wonderful trip!
__________________
Disneyland 1992, 2005 Disneyland Paris 1995, 1997, 2003, 2007, 2011, 2x2012, 2014 Walt Disney World 2004 POR, 2007 AKL, 2008 AKL, 2009 Poly, 2010 AKL, 2011 BWV, May 2013 AKV Jambo Disney Cruise Line 2013 Wonder, 2014 Wonder
Trip Reports: 2013 TR DCL and WDW 2011 TR 2010 TR 2010 PTR Dining Reviews: 2009 2008 2007
New Trip Report: If You See It: Eat It! – Via Panama to Disneyland

Flossbolna is offline   Reply With Quote
Old 07-25-2010, 09:15 AM   #4
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

Quote:
Originally Posted by Flossbolna View Post
Hi Tim! I am looking forward to read about all your planning! I am sure it will be a wonderful trip!


You are first!!!!

I started this without telling anybody.. LOL I wanted to get some of the info on here before I spread the news. Although the observant ones will see the link in my signature.
that's nice is offline   Reply With Quote
Old 07-27-2010, 12:18 AM   #5
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

Why a Wish?

When we found out Melody was pregnant, we were ecstatic! We were living with Melody's mom at the time and were closing on our first house. Mel's pregnancy went as planned and on March 11th, 2006 our baby was born. She was the most beautiful sight I've ever seen.



Of course she had to tell the world she was here!



Like other first time parents we were learning as we went, but we settled into a nice routine. A few pics after we were home....





Throughout her first year, Juliana hit every milestone early. By Christmas (9 months) she was walking saying a few words. Her first word was hot. She was a very healthy kid. She only had 1 real cold and a stomach virus about 2 weeks before her birthday which lasted about 24 hours.

We had a big party for her first birthday. And she apparently loved her cake!



The day after her party we brought her to her 1 year well checkup. Her regular pediatrician was on vacation so we saw another doctor in the office. Everything went as planned except when the doctor felt her abdomen. The doctor told us she thought Juliana's spleen was a little enlarged- probably due to her recent sickness. They took some blood to run labs and she wanted us to come back in a few weeks because she just wanted to check her stomach again. They called us the day after her visit and said her bloodwork came back normal.

We were a little worried, but it seemed like it was not a big deal. We just continued on with every day life. 2 days before our visit back to the doctor I shot this short video of Juliana.



It seemed like we had a normal, healthy baby.

When the day came, Wednesday March 28th, we thought we would just have a quick stop in the office and be done. Melody was going to go straight to work from Juliana's appointment. We went to have her abdomen rechecked and we were very surprised to learn it was still enlarged. She sent us to Waterbury Hospital for an abdominal ultrasound. The radiologist confirmed that it was not her spleen at all, but a mass in her kidney or possibly an enlarged lymph node.

We were immediately sent back to her office. We knew right away...something was wrong. When we walked into her office, the receptionist ushered us directly to the doctors office. Her doctor informed us that we would be referred to an oncology specialist at Connecticut Childrens Medical Center. We felt like our life was about to be turned upside down. Why was our perfectly happy & normal one year old going to an oncologist!?!?!??!!

We met with a doctor at CCMC who discussed with us possible causes/ diagnosis related to her 'kidney mass'. He informed us of important bloodwork, urine specimens, & a CT scan that needed to be completed ASAP. We went home that night not knowing what was in store for Juliana. The next morning we had to force Juliana to drink a contrast which was needed for the CAT scan.

When we arrived back to the hospital we found out that Juliana needed to drink more of the contrast. We met a nurse in the oncology department who ended up have to force over 100cc's of this nasty stuff into our kicking screaming CRYING little girl. (Her name is Barbara... and she is still traumatized by this to this day. Barbara still talks about this day when we see her for Juliana's checkups. She has been Juliana's oncology nurse from day 1)

Once Juliana drank all the contrast, it was time for the CAT scan. The test went as well as we could have hoped & did not need to be repeated. What we didnt expect to happen next was we were about to be informed of the worst news we could have ever heard. Our daughter had a malignant tumor on her left kidney.Juliana was diagnosed with a Wilms Tumor. There are 500 cases each year diagnosed in the U.S. Wilms is a type of cancer that grows in the kidney.

After her scan, Juliana had a fever and we were admitted to the hospital. Her fever never went away. We stayed there for a 3 days and we were finally allowed to go home on Sunday evening April 1.

We were scared and we just couldn't believe what was happening. Here are a few pictures we took the night before her surgery.







To be continued......

Last edited by that's nice; 07-27-2010 at 01:08 AM.
that's nice is offline   Reply With Quote
Old 07-27-2010, 12:26 AM   #6
Mom2mitokids
DIS Veteran
 
Mom2mitokids's Avatar
 
Join Date: Jul 2010
Location: So. Cal
Posts: 1,583

Waiting to hear more about your beautiful daughters story.
__________________
Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
Mom2mitokids is offline   Reply With Quote
Old 07-27-2010, 12:48 AM   #7
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

Why a Wish? Pt.2

We were up early on Tuesday April 3rd, 2007, and on our way to the hospital. Our family met us at the hospital. They were very supportive and I am thankful they were there. During the surgery, her left kidney & tumor were carefully removed. A port was put in under her skin to receive the chemo treatments. All her surrounding organs were checked and were fine. Also her lymph nodes and glands around her kidney were biopsied and were fine. This meant there was no spreading of the cancer. We felt relieved that her prognosis had improved.

It was hard to see all the tubes coming out of our baby girl. I felt it was important to take some pictures to show her when she could understand. She slept in a hospital crib, which for the first few nights Melody or I slept in it with her. I'm 6'1'' and I don't think those cribs were designed with someone my size to sleep in.



After 2 days we were actually able to pick Juliana up for the first time after her surgery. It was a very emotional moment.







We were overwhelmed with the outpouring of cards, gifts, and prayers from family & friends. Every day, Juliana got stronger and stronger. We were able to take her for wagon rides around the floor.





Slowly, she was getting her appetite back. Her first shot at jello.



Her personality was coming back too. She must of been starting to feel better.



Here you can see her port accessed and if you look closely you can see where her incision was on her abdomen.



Easter was Sunday April 8th, 2007 and we were still in the hospital. Our parents brought us Easter dinner and it was the best tasting food I ever had.

Our little bunny..



On Monday morning April 9th 2007, Juliana received her first dose of chemotherapy. Shortly there after, we were discharged from the hospital. It was such a relief to be heading home.





Once we got home, Juliana was running around and acting like nothing ever happened. Every day was an adventure once home though. Somedays we almost forget that she was sick and other days we were reminded every minute. Somedays she ate good- others not so good. Somedays she was very cranky; others she was fine.

We had to bring Juliana weekly to CCMC for her chemo. Everytime she had a fever we had to go to the hospital (about 30 minutes away) sometimes at 2, 3, or 4am. While she didn't lose all of her hair, it thinned out quite a bit.



On August 13, 2007 Juliana received her last chemo treatment and about 1 month later her port was removed.

Juliana now goes every 6 months for an ultrasound, x-ray, and bloodwork. Her visits have gone from weekly, to monthly, to every 3 months to every 6 months. Up to today, her cancer hasn't returned and she will be considered 'cured' when she is cancer free for 5 years from her last chemo- which will be August of 2012. Our little girl has been through so much in her short life already, and I am thankful everyday I have with her.


Up next... Time to leave!!!!

Last edited by that's nice; 12-12-2010 at 01:38 AM.
that's nice is offline   Reply With Quote
Old 07-27-2010, 12:54 AM   #8
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

Quote:
Originally Posted by Mom2mitokids View Post
Waiting to hear more about your beautiful daughters story.


Thanks for joining! I see you have a MAW PTR going on too... I have to stop by and check it out!!!!!
that's nice is offline   Reply With Quote
Old 07-27-2010, 01:04 AM   #9
disney<333
DIS Veteran
 
disney<333's Avatar
 
Join Date: Jul 2009
Location: 3 hours from home
Posts: 1,760

Wow, you all have been through so much and you really all deserve this trip! I can't imagine, as a parent what it must of felt like to hear those horrible words that no parent should ever have to hear!! Juliana is such a strong trooper, and a cute one, too.
disney<333 is offline   Reply With Quote
Old 07-27-2010, 01:04 AM   #10
All7OfUs
We too are so very NOT into traipsing through the dark when a bucket will do just great
What a fun way to meet new folks and say howdy
 
All7OfUs's Avatar
 
Join Date: Dec 2007
Location: Salem, OR; formerly from Crapistan- Really!!
Posts: 13,089

You've started Ana's PTR!!! You know I"m in for this!!

ETA: I had already heard/read Ana's story, but am still amazed each time I see it! What a triumph!!
__________________


Last edited by All7OfUs; 07-27-2010 at 01:17 AM.
All7OfUs is offline   Reply With Quote
Old 07-27-2010, 01:16 AM   #11
that's nice
DDC #330

Maybe the entire internet is slowing down because of this thread
 
that's nice's Avatar
 
Join Date: Nov 2008
Location: CT
Posts: 13,065

Quote:
Originally Posted by disney<333 View Post
Wow, you all have been through so much and you really all deserve this trip! I can't imagine, as a parent what it must of felt like to hear those horrible words that no parent should ever have to hear!! Juliana is such a strong trooper, and a cute one, too.
Hey Barbara!!!

Yes, it was very hard to hear all the talk... especially that 'C' word. We are just thankful that Juliana is as strong as she is. We love her so much!!!



Quote:
Originally Posted by All7OfUs View Post
You've started Ana's PTR!!! You know I"m in for this!!
I know you'd be here!!!! So did you see the link in my siggy? It was there for a few days! LOL
that's nice is offline   Reply With Quote
Old 07-27-2010, 04:40 AM   #12
dizneeat
DIS Veteran
 
dizneeat's Avatar
 
Join Date: Apr 2006
Location: Austria
Posts: 14,669

Oh my god what a nightmare to go through! And yet, such a beautiful and cheerful little girl!
I really want to follow along her WDW adventures!
__________________
Players: Karin Tom Find our trips here: Magicaldisneytrips
DCL: March 29 Magic/Western Aug 22 Fantasy/Western Aug 29 Fantasy/Eastern
WDW: March 28-29, April 5-6, August 15 - 22 and September 5 - 12
TR Summer 2014: We're out of it! A MAGICal Med adventure TR 2013: Get off the ship .....
Visit my other TRs/dining reviews here:

dizneeat is offline   Reply With Quote
Old 07-27-2010, 08:42 AM   #13
jenseib
Mommy to Claire
 
jenseib's Avatar
 
Join Date: Oct 2006
Location: Ohio
Posts: 26,726

I'm here too Tim.
I get tears in my eyes everytime I read your story.
Claire was an early walker too. She walked at 8 1/2 months and never stopped. LOL!
jenseib is online now   Reply With Quote
Old 07-27-2010, 09:11 AM   #14
casper_jj11
DIS Veteran
 
Join Date: Jun 2006
Location: Ottawa, Ontario
Posts: 919

Hi Tim! Juliana is just precious. It breaks my heart to see little ones going through so much. Our Sydney had her surgery to have her left adrenal gland removed (neuroblastoma) exactly one month before Juliana's surgery... they were the same age.

I can't wait to hear about the planning for your trip. I hope you get your dates soon. It's amazing how real the trip becomes. We've been to Disney several times before as well but as you said, this is completely different and a little overwhelming at times, trying to make it the 'perfect' wish. We're going in less than two weeks now. This will also be our first trip to US so I'll be sure to update you when we get back.
__________________
Joanne (Our cast: me DH DS8 DD5 DS3)
August 2006 - ASMo (7 days); March 2007 - ASMo (5 days); July 2008 - POR and Dolphin (14 days); February 2009 - Poly and Swan (10 days)
August 2010 - DD's Wish Trip! Grand Floridian (11 days) (PreTrip Report http://www.disboards.com/showthread.php?t=2443630)
Princess Sydney's Magical Wish Trip Report http://www.disboards.com/showthread....1#post38079645
casper_jj11 is offline   Reply With Quote
Old 07-27-2010, 09:15 AM   #15
wasnotafan
DIS Dad #481
Unfortunately my smartphone is smatter than I am
All that fresh air over the years has done me good
 
wasnotafan's Avatar
 
Join Date: Jul 2010
Location: Kentucky
Posts: 3,432

What a trooper! Looking forward to the report.
__________________
May/June 98 - All Star Music Calypso
July 03 - All Star Music Rock
Sept/Oct 05 - POP Century 50's
Sept/Oct 06 - POR Riverside Alligator Bayou
July 08 - POR Riverside Magnolia Bend
wasnotafan is offline   Reply With Quote
Reply



Thread Tools
Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 10:07 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: