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

[that's nice]

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!

 

[that's nice]

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

 

[Flossbolna]

Hi Tim! I am looking forward to read about all your planning! I am sure it will be a wonderful trip!

 

[that's nice]

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]

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......

 

[Mom2mitokids]

Waiting to hear more about your beautiful daughters story.

 

[that's nice]

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!!!!

 

[that's nice]

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!!!!!

 

[disney<333]

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.

 

[All7OfUs]

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!!

 

[that's nice]

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!!!

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

 

[dizneeat]

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!

 

[jenseib]

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!

 

[casper_jj11]

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.

 

[wasnotafan]

What a trooper! Looking forward to the report.

 

[rcq925]

Ana is such a beautiful little girl! I am so sorry for all she has been through! I an definitely subbing in for this PTR and I hope you get your dates soon!

 

[maroo]

I am here! I am here!

Slow....I know. But I am here!

Can't wait for more....

 

[FreezinRafiki]

Tim!
I'm here! I'm so sorry for what you guys had to go through. Ana is a vibrant and bright little girl, and she's pretty lucky to have awesome parents like you guys. I hope the dates for your trip come in soon and they overlap with our trip. I'd love to see you guys again!

 

[kayrason333]

she is a cutie! Cant wait to hear about your plans.

 

[Captain_Oblivious]

Wow, Tim. I had no idea what you 3 have been through! I hope this trip helps to make you feel like it was all worthwhile. And I'm thankful that your daughter has spent the last couple of years cancer free!