Aidan's X-mas MAW Trip Nov. 29-Dec. 5

Discussion in 'Completed Trip Reports' started by Soon2B4, Oct 17, 2009.

  1. Soon2B4

    Soon2B4 DIS Veteran

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    Well, after having our trip dates since June I guess it’s time I finally start my Pre-trip report. :rolleyes1 I will do my best since I have never been a fan of writing!

    Our family consists of the following:

    Aidan 3 – Our wish child. At age 5 months, he was diagnosed with stage 4 neuroblastoma. He loves everything Disney and will ask you to watch the trip planning every chance he gets. Like most boys, he is into cars, dinosaurs, and trains. Aidan can tell you the names of more dinosaurs than anyone I know. He is an extremely bright child and to look at him you probably wouldn’t know he was ever sick.

    Ian 5 months – Our extremely happy baby. Aidan calls him “his baby”, but says he can’t take care of him b/c he is to small.

    Kevin – Dad. My wonderful husband that help me keep my sanity through many sleepless hospital nights.

    Stephanie – Mom (Me)

    It all started back in November 2006 when Aidan was only 4 months old. He seemed like a normal baby, but he had breathing issues. When he would really get kicking, he would get short of breath. I questioned the doctor at his 4 month check up and he told me it was more than likely asthma. He prescribed breathing treatments any time he got short of breath. Being a first time mom, I went along with it and did exactly as he told me to. It seemed to help, but the problem was still there.

    Fast forward to January 20, 2007, the day our world fell apart. We were at my parent’s house for my dad’s birthday. I took him and laid him down for a nap. He woke up and started screaming and the next thing I new, he stopped breathing. I went running to my mom who was certified in CPR and she started rescue breaths. Aidan finally started to get color back and trying to move his arms. When taken to the hospital, they took x-rays and told us he had aspirated.

    We were transferred to another hospital in the area that had an affiliation with Akron Children’s hospital. We were kept over night and the next morning they repeated the chest x-ray and said his lung was clearing up and we were sent home. When we got home the doctors called and told us that the films were read by the children’s hospital and they felt there was something more there. We had to take him for a CT. No sooner did we get home from the CT the doctors were calling telling us to get the Akron Children’s as soon as possible, they were waiting for us.

    When we got the hospital it was a whirl wind. The next day, he had a biopsy done on what they were calling a solid mass, a port placed, and an MRI. Our worst fears were confirmed, he had cancer. It was approximately 4-5 inches in his right lung cavity and was spreading into his spinal column. The day following the surgery, they started him on his first round of chemo. We spent approximately 2 weeks in the hospital.

    Aidan had 4 rounds of inpatient chemo, consisting of 3-4 day stays every 3-4 weeks. They expected he would have to have 8, but much to there surprise he responded extremely well and the tumor had shrunk to approximately 1 inch. His surgeon was able to go in a remove what was left. It did leave him with Horner’s Syndrome. Basically, his right pupil is smaller than the left and he only sweats on the left side.

    Since his last surgery, Aidan has had countless scans. He went 2 days in a row, was sedated and had a CT, MRI, and MIBG. (Nuclear Medicine scan).

    I am EXTREMELY happy to report that he had scans in October that came back clear and he no longer has to have them. :banana:They still are waiting on his urine test, (neuroblastoma elevates certain levels in urine) but he is doing GREAT!!! He will still see his oncologist and have the urine tests and blood work done, but we are so relieved he no longer has to go for scans.

    When we applied for MAW, I was apprehensive like most families, thinking there were more deserving children. He was doing well and was living a pretty normal life. I was reminded everything we had been through that most families never have to experience.

    We never had a doubt what he would wish for. The child LOVES Disney! He told our volunteers that he wanted to go to Animal Kingdom. We are going November 29-December 5 and are staying at GKTW.

    I ended up being a little more long winded than I had planned, but that is it for now. I will post pictures once I figure out how!
     
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  3. Soon2B4

    Soon2B4 DIS Veteran

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    Here is a picture from Aidan's 3rd birthday. I will post more when I have a chance.

    [​IMG]
     
  4. jessica52877

    jessica52877 DIS Veteran

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    Coming along for the ride! I grew up in Cuyahoga Falls.
     
  5. jessica52877

    jessica52877 DIS Veteran

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    OH my! He is so cute!
     
  6. teresajoy

    teresajoy <font color=deeppink>World's Proudest Aunt!<br><fo

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    Thanks for sharing your story!!! Aidan is such a cutie!!!
     
  7. maroo

    maroo DIS Veteran

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    He is so cute!!

    I have added this trip report to our Wish Trip report page! :)

    Can't wait for more! :)
     
  8. pipersmom

    pipersmom DIS Veteran

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    Aww, he's a doll..so glad you guys are in the clear, scan-wise, anyway! Will look forward to reading more :)
     
  9. kdzbear

    kdzbear DIS Veteran

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    I am joining your journey. He is more than deserving of a Wish. Our trip will miss yours by a few days. We come back on the 25th. I can't wait to read more about your planning! :wizard:
     
  10. Soon2B4

    Soon2B4 DIS Veteran

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    Aidan was actually born at Akron General. We were living in Streetsboro at the time.
     
  11. Soon2B4

    Soon2B4 DIS Veteran

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    Thank you! He may look cute, but he has entered the terrible 3s! Forget what they say about 2s! :rotfl:

    Thanks! I try to stay positive and think that if the doctor is comfortable stopping the scans, she must not be to worried about it coming back.

    What's funny is my DH switched jobs and he had 3 weeks off work. He decided we should take a last minute trip to Disney. (He says it's for the kids, but it's really for him!:rotfl2:) We were supposed to be there Aug. 29
    -Sept. 5. (Aidan got sick, then the baby, then us, so we drove back home after just a few days) Anyway, we just missed you then also!
     
  12. Soon2B4

    Soon2B4 DIS Veteran

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    Here is a picture of both boys. I am not sure how it will come out. My DH took it with his phone about a month or so ago.

    [​IMG]
     
  13. Soon2B4

    Soon2B4 DIS Veteran

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    I just have a few minutes, but I talked to our wish volunteer yesterday and we set up our get together to talk out all of our trip details!!! :woohoo: It's getting so close and I can't believe how fast time went by.

    I will update more tomorrow. We just moved into a new house and things are a bit crazy here trying to finish everything at our apartment before the keys are due back. Tomorrow I plan on posting our itinerary and some of our reservations we have made.
     
  14. teresajoy

    teresajoy <font color=deeppink>World's Proudest Aunt!<br><fo

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    I hope everything is going ok! I'd love to hear your plans!

    :yay::yay::yay:
     
  15. Soon2B4

    Soon2B4 DIS Veteran

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    I finally got out all of my plans for our upcoming trip. I had them all packed from our move and I just got to the box that had them in it. I should start by saying we have been to Disney before and kind of know what we are going to do and what we are going to skip. With Aidan just being 40", there are some things he may or may not want to do.

    Sun. 11/29-Arrival Day I plan on taking the kids with me to get diapers, formula and all that other fun stuff babies require while Kevin sits in on the orientation. That is the plan, but who knows what will happen. We still haven't received our flight times so that may go out the window.

    Mon. 11/30-Magic Kingdom for the day, Studios at night We are going to the Magic Kingdom during the day and leaving for dinner at Mama Melrose's at the Studios. We are looking forward to seeing the park all decorated for Christmas and have heard the Osborne Family Lights are not to be missed.

    Tues. 12/1-Animal Kingdom and MVMCP at night Animal Kingdom has got to be Aidan's favorite place with all of the animals. He is a true animal and dino nut! Since the park closes early, we thought we would head over to eat at the Magic Kingdom and get tickets to the party that night. We have 2 dinner reservations (I know, against the rules), but we aren't sure how Aidan will do with the characters. We currently have Crystal Palace and Liberty Tree booked. If we find he is afraid, we will cancel the Crystal Palace and go to Liberty Tree.

    Wed. 12/2-Nothing solid planned After being at the party the night before, we decided to leave this as a free day to do what Aidan wants. Kevin and I have tickets from a few years ago to the Disney, so if he wants to hit Disney again, we can just buy him a ticket. Maybe it will be a GKTW day or a Universal day. Who knows!

    Thurs. 12/3-Sea World We are all looking forward to Sea World. Kevin and I haven't been to a Sea World since they closed the one in the Cleveland area years ago. We booked Dine with Shamu for 5PM. We really think Aidan would enjoy sitting and eating while watching Shamu. He has been on a huge Adventures with Jack Hanna show kick lately so I hope he loves it!

    Friday 12/4-Back to Animal Kingdom maybe Epcot at night We plan on going to Animal Kingdom again and who knows after that. (Once again, AK closes early.) We are pretty flexible people so we are going to go where the day takes us. Since we have been before, I know Aidan will have some things he will want to do again. Since it's his trip, we are going to do the best we can to accommodate!

    Our wish volunteers will be here on Saturday, so hopefully we will have flight times and a better idea of what to expect. Luckily, the boys and I have had H1N1 vaccines so I feel much better putting them on a plane.

    Well, the baby calls. I have more to write, including a Wish sponsor lunch coming up and a picture of Ian in a wonderful Mickey outfit from the Big Give!!!
     
  16. pipersmom

    pipersmom DIS Veteran

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    Hooray for the volunteers coming Saturday! You're so organized..and I can't wait to see the Big Give goodies :)
     
  17. yinyanggirls

    yinyanggirls DIS Veteran

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    Since Phoebe has never been a typical kid, Tessa has had to make up for it by being extra-typical. :lmao: When she was about 18 mos she really started to cause some trouble. At the park one day I mentioned to some other parents that she had hit the terrible twos early. The dad replied, whoever named it the Terrible Twos hadn't hit three yet. Boy, was he right!!! Three has been the hardest year so far. I have had trouble sleeping because my eyes and ears are always on the lookout for our little trouble maker. So I know exactly what you mean!!!
     
  18. billwendy

    billwendy DIS Veteran

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    I love hearing bout your trip and planning!!:thumbsup2
     
  19. Soon2B4

    Soon2B4 DIS Veteran

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    It was like Christmas when I went to get the mail today! We received so many big give packages. I can't wait for Aidan to get up from his nap so he can open them. When my DH gets home, I will get all of our pictures taken of our Big Give gifts and post them. Thank you to everyone who is apart of the Big Give on the Dis. It takes very special people to take the time to make gifts for complete strangers. I am sure everything is going to be wonderful and I can't wait to see them!

    We also had our volunteers come out on Saturday. We got our flight times (finally!) and all of our paperwork. They brought a DQ icecream cake with Mickey, Minnie, Pluto, Donald, and Goofy on it. That of course was a big hit with Aidan. We also found out that the Ronald McDonald house is going to print up to 100 pictures for us. When we return, we just send them a disc with pictures on it and they will take care of the rest. I have one small issue which is really not an issue at all. When I looked at our flight reservations, we only have 3 seats assigned and they are not all together. They also weren't able to sign us our 4th seat so I will have to try to see what I can do at check in. Also, our flight times have been changed by the airline so I have to talk to the limo company and see if there are any issues in changing our pick-up time. No big deal and just a few small changes to make.

    Aidan was having so much fun playing with their son that he barely noticed what we were talking about. Get 2 boys about the same age together and chaos follows! Ian (the baby) loved the commotion and would cry every time they left the room. But once they left and things calmed down, Aidan wanted to sit down and look at the things they left and talk about Disney. I can't wait to get there!!!
     
  20. HeatherSue

    HeatherSue Join Date: March 2004

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    How exciting that you got some packages today!! I can't wait to see pictures!
     
  21. teresajoy

    teresajoy <font color=deeppink>World's Proudest Aunt!<br><fo

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    YAY!!! I'm so glad you are getting your packages!!!! :banana::banana::banana: :yay::cheer2:

    And what a beautiful attitude you have about the "little" things that you have to take care of for your trip!!! (I put little in quotes, because not having a 4th seat is kind of a big deal I think!) What a wonderful example to set for your kids!
     

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