Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

Discussion in 'disABILITIES!' started by maroo, Dec 25, 2009.

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  1. casper_jj11

    casper_jj11 DIS Veteran

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    Thanks everyone for the positive thoughts and prayers and for the info on other hospitals. Maroo is right, we're in Canada and its a bit different here but we are considering taking her to the US if needed which is why I'm trying to find the best doctors around.

    Medical care is free for us but it sometimes means taking a bit longer to see a specialist as you must have a gp referral. Sydney has been with the oncology team at the children's hospital here since two hours after her test results came back when she was 13mo old. She's always had wonderful care but I know that testing in particular can be slower here. There is no 'able to pay' route that we can take so testing is ordered for those that its deemed to be needed and it must be the specialist that orders it. There's our problem. They haven't determined that she needs it yet. Our paed is wonderful and called us Friday night to update us on a call she received from our oncologist. They will definitely do a face to face with us but they want a repeat of her urine test first to see waht her catecholamines are doing. Great. TEst was done today on a stat basis. We should have it back by end of teh week. If its high, they'll send her directly for scans. Which ones, I'm not sure. If its back to normal, they'll meet us but it may not be same day, or same week. They'll discuss then what we do next. Personally, I'm more of an action person than a wait and see and I have no intention of waiting for them to decide what to do. Problem is that if we take her outside our system, it really needs to be with their support becuase if she does need treatment, I'd like it done here, near her home where life can stay as close as possible to normal for her and her brothers. Its always moved quickly for us in the past with her and I'm not used to having to wait... and I don't like it much and I'm not planning on doing it for long. I told our paed that we'll wait til the results get back later this week but I won't be waiting much longer. So we'll see. I've taken the names of all the hospitals mentioned here. I also know that Philidelphia does a lot of research on neuroblastoma so that may be another option. Everyone we've spoken with here is discussing doctors in other Cdn locations but our problem is not the doctors here (they're incredibly good at what they do) its the speed with which things happen so for a change in that, we may need to go outside this system.
     
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  3. jen-y

    jen-y Mouseketeer

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    Just made ADR for character breakfast at Nickelodeon Suites Hotel:cool1:
    I left a message w/a manager to see if there is anything special they can do for Nicky - even though we will be staying there after we check out of GKTW, so technically MAW won't be involved, but it does not hurt to explain the situation and ask. I don't know how customer service oriented they are (compared to Disney) We shall see.
     
  4. jen-y

    jen-y Mouseketeer

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    Casper jj11

    I would recommend Children's Memorial Hospital in Chicago. Everyone there is awesome, and there is a Ronald McDonald house there you could stay in if need be, and I have stayed there before, it is nice.
    On the other hand, I would not recommend the Children's hospital in Detroit. I am originally from Detroit and have been there several times for different things.
     
  5. wishin' on a star

    wishin' on a star DIS Veteran

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    Oh goodness, I can't imagine the anxiety this must be causing you. I hope that you get some answers soon, and the response you need from the doctors. :hug: I'm praying that this turns out to be nothing.
     
  6. wishin' on a star

    wishin' on a star DIS Veteran

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    Sounds like fun!!:cool1:
     
  7. noahsketomom

    noahsketomom DIS Veteran

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    Couldn't agree more! We left with 5 bags and came back with 8, including the one given us at GKTW! AND a lot of what we came with was FOOD for Noah, which he ate and so we did not repack it!

    All of this had to do with the fact that

    a) the kids got tons of stuff at GKTW :love:
    b) we bought way more souvenirs than we would normally due to the generosity of MAW :love:
    and c) I only had 2 hours :confused3 to pack us out of our villa so I was WAY less efficient with the packing!! :laughing:

    KEEP TRYING KEEP TRYING! We couldn't get Chef Mickey's when we wanted either. I had bookmarked the online request form and checked every morning. We were able to get a dinner for a perfect time and it was awesome. We had a 5:20 res and it was perfect -- minimal wait time, food was AWESOME and we all had a good time....we were able to head back to MK for the parade/fireworks. It made for a long day, but it was fun. When we left (close to 7) the wait was considerable.
    So keep trying --hopefully persistence will pay off!!!!!!! :cheer2:
     
  8. Adrismommy

    Adrismommy Earning My Ears

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    Okay, so I called to inquire about the rental car and my wish granter said that she was sure we'd have a van. I guess since our chapter isn't flying anyone, it's just standard to rent a van. She was going to call to confirm that for me but she said she felt very confident in that. I told her that we obviously were thankful for whatever, but if we were going to be renting a smaller car, we'd just prefer to drive our own.
     
  9. TTomlinson

    TTomlinson Mouseketeer

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    Another rental car question... maybe it depends on your wish granters, but do you have to have a credit card to pick up your rental car? My mom and I both have debit cards and I do have one card but its maxed at the moment. I just want to be prepared if they are going to put a hold on our cards (usually is a couple of hundred $) so that we know what to expect?

    My 8 year old had a really emotional, sad moment the other night. He was telling his friends and teacher at school about our wish trip and how excited he was about it and I guess a few kids asked when his brother was going to die because that's why kids get a MAW trip. He was heartbroken that night worrying about his brother dieing. We have talked to them about Tyler's condition and the truth (I believe in honesty) about the reality that Tyler may not live to be an adult, but he is doing pretty good right now and we don't know how fast his disease will progress. There is no treatment or cure for his condition so there is a distinct possibility that he won't see the age of 18. I'm just struggling with how to help my other boys with this reality without overwhelming them with the seriousness of this. I'm so excited we get a MAW trip because we really need the family bonding time together and happy memories with Tyler, but I know that telling people you are getting a wish immediately makes them think that Tyler is going to die soon. Any suggestions?
     
  10. alaskanabbott

    alaskanabbott DIS Veteran

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    we had the same thing happen with many people. We even had family call after they saw us on the news and ask why we hadn't told them James was terminal. Never mind that they never said that during the newscast...just the mention of a wish trip and everyone assumes it. Plus, terminal is well defined as having 6 months to live, James is in the same boat as your son, we have no idea how his illness will progress, there is no cure yet, but he could spontaneously heal, we believe it. James' twin sister gets those questions a lot at school, especially before James got his GI tube, he had a NG tube and everyone kept telling her he must have cancer. I guess kids see an NG and figure cancer. For us the hardest part is we don't actually have a diagnosis, we just know he has a degenerative neurological disorder, so we don't really know what to expect, good or bad. I think the siblings of our special kids are almost as heroic, going through things no brother or sister should have to go through, at an age where what they should be doing is wrestling on the floor, not helping with nighttime feedings and medicine.
     
  11. maroo

    maroo DIS Veteran

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    Photopass Tutorial:

    Children going on Wish Trips through Give Kids the World are provided a coupon for a FREE PhotoPass at Orientation at GKTW.

    How Photopass Works - When you get to Disney and go into the parks, you will find many official Disney Photographers at various spots in the parks. They will take pictures of your family. They will also take your picture with YOUR camera, if you want. And they will give you a card (the size of a credit card) that will have a set of numbers. Each time you get your picture taken, give them the card and the pictures will be assigned to that number on the card. When you get home, you can input the number from the card into the computer and look at all of your pictures. You can purchase individual pictures (they are expensive) or buy the whole CD of pictures. You can also make mugs, calendars, and even photo books that you design yourself. Many character spots have photopass photographers, too! So you can get all of your character pics on the CD, too.

    Some tips:
    - Take LOTS of pictures, even in the same spots on different days or different times of the day. The more pictures you take, the more likely you are to get a good picture.

    - Take a picture of your photopass card, in case you lose it. You only need the number on the card to get your pictures. You might also want to write it down for future reference.

    - You can actually have as many photopass cards as you want. It is easier to just keep up with one or a few, but you can actually have a BUNCH, you just input each number when you get back.

    - Make sure each adult in your party understands the photopass and that they can get a new card if they have a photograph moment and you are not there with them. If you get separated, they can just get a new card and jot the number down and you will be able to claim the pictures.

    - Wish Trips are a GREAT time to get LOTS of pictures, because you tend to visit a LOT of characters - so take advantage of the Free PhotoPass CD and get LOTS of pics!

    - Have the photopass photographer take the same pictures with your camera, too!

    - Some rides allow you to load the "ride picture" on your photopass... so feel free to ask a CM. Test Track allows your "ride pictures" to be put on your PhotoPass card. Some other rides may allow this in the future.
     
  12. maroo

    maroo DIS Veteran

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    You guys can all ignore that random post about the PhotoPass cards. :)

    Just need to update some info on there and could not edit the post since it was part of the 2nd thread.
     
  13. maroo

    maroo DIS Veteran

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    Totally agree with this.

    I am so sorry that you guys don't really have a diagnosis - that is so frustrating. :hug:
     
  14. TTomlinson

    TTomlinson Mouseketeer

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    Actually thanks Maroo for the info on photopass! I was wondering if we should buy the CD before we go or what. Now I know just to wait :)
     
  15. pacrosby

    pacrosby DIS Veteran

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    Thanx Tami! I appreciate the words of encouragement. Fortunately I was able to get in touch with the Entertainment Director who is going to get me a copy of the photo cd. I haven't been that happy to hear someone's voice over the telephone in a looooong time LOL We're actually going to try and meet up with him when we go next week (if our schedules don't mesh he'll just leave it for me). I am soooo relieved!

    I am so NOT into this whole digital px thing. I'm fine with having copies on photobucket or some other personal photo file BUT I need to have something in my hand too. Guess that can be attributed to my age :rotfl:




    I was able to to get in touch with Mike (as noted above) and will hopefully meet up with him next week. I appreciate the offer though.
     
  16. jen-y

    jen-y Mouseketeer

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    Unfortunately people do associate MAW with terminal. Before I got my education, I assumed the same thing. My son has leukemia, and my 8 year old daughter also hears it refered to as cancer. She saw something on tv about someone dying of cancer, and she looked at me and said "mom, does Nicky have cancer??" I just tried to answer in an age appropriate way and told her it was nothing to worry about. I would suggest you contact the social worker or child life specialist at the hospital (or a professional) to find out the best way to handle it. When Nicky was first diagnosed, the child life specialist explained the situation to my daughter and I was glad to have the professionals handle it.
     
  17. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    You did answer my question;)
    I have a rolling duffel I thought about bringing. But I wasn't sure if I should check it or make it a carry on. But I like the idea of bringing a few suit cases and not filling them up. If I do that then I can combine them before we leave and make an empty one. Im trying to stay with rolling since they seem to be easier to handle.
     
  18. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    That sounds tough. I hope they will work with you and speed up a bit.Hugs!!
     
  19. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    Awsome!! I hope they get back to you soon.
     
  20. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    Thank you for the heads up. That is quite a few extra bags!

    :hug: Bless his heart! And your mommy heart too!
     
  21. maroo

    maroo DIS Veteran

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    That will be perfect!! You guys can meet up again and get the CD at the same time! Tell him I said hello! :)

    And I hope you guys have a blast on your trip!

    Yeah...I think you will probably go home with more than you came with...I am SURE of that, actually... ;)
     
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