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

[cantwaittoseemickey]

I would definately call MAW and talk to them.Back when we originally were planning I specifically asked what kind of vehicle we would get b/c of Ty's wheelchair and they had no problem with making sure we had a van . I do not think they will mind at all. They want you to have a wonderful trip and have NO worries

 

[pacrosby]

Melissa,

Honestly, just call them. It is possible for mistakes to be made and I'm sure MAW would never want a family to be inconvienced as a result of a mix-up. But they can't fix it if you don't tell them. Obviously I don't have to tell you what to say, you're intelligent enough to figure it out on your own but really..................I just want to encourage you to pick up the phone. There really isn't any reason for you to feel badly

 

[that's nice]

I agree with the pp.....

Call them, be super nice, and just ask if changing to a minivan is a possibliity. If it is great. If not then it didn't hurt to try!

1 day to go!!!!!!

 

[pnutallergymom]

Melissa,

If you do some digging on the GKTW site, you can find out what MAW pays them for their families. If I read it right, it is a set amount for whether you have a car or not. My understanding from everything that has been explained to me.........and it could be wrong.......but if a family gets a rental car it us usually one price, if they don't it is another. GKTW sets up the rental etc......They have contracts with the car rental agencies. I don't believe they pay different prices. MAW pays GKTW a set price based on whether a family gets a car or not and it doesn't matter what type of car it is (it said family choice) Actually, I just looked it up.....look here http://www.gktw.com/newsletter/cc_winter_10.html

I knew I read it somewhere.....

Hope that helps. Good luck.

 

[casper_jj11]

Just wanted to update on Sydney. We still haven't spoken directly with her oncologist, just the oncology nurse and her paediatrician. Both are pushing for a face to face with the oncologist for early next week. We should know today. I was told yesterday by the nurse that the oncologists believe neuroblastoma cells are giving positive results on the test. They've said that once these mature, they become normal cells and the test comes back normal until others activate again. That's all I've been told. What I know though, from my own research and speaking with her paed is that after age 2, neuroblastoma cells will rarely mature completely and become normal cells. That means, its back. The onc nurse said that there's a little girl in the under 2yrs clinic that has fluctuating levels and they even did a full body scan to find out why but nothing so they figure for some children, this just happens. Two concerns there: that child was under 2, Sydney isn't and Sydney hasn't had a scan since 2007 and then it was just abdominal because that's where the tumor was. We're now pushing not only for a meeting but for a full body scan to see if there is a tumor lurking in her. I want the meeting by early next week with a scan within a week afterwards. DH has contacts (he's a pharmaceutical patent lawyer) and is trying to find the best paed oncologist to take her on and work with the hospital here to do the testing/treatment. Our hospital is amazing but things work slowly here and right now, I want things done quickly. Any advice would be great but in any event, please send a little prayer for her.

 

[maroo]

We met with the wish granters tonight to get the final details for our trip (we leave Sat morning). After they left I was reading through the booklet they left with us and noticed that the rental car they show as reserved for us is a FULL size (Chevy Impala or similar).

I'm not done packing, so I'm not positive how many bags we will have, but probably 2 large, 1 medium and 2 small, plus backpacks, purse and camera bag. We could probably make this all fit along with our family of four if it weren't for the wheelchair. It does come apart but it still takes up a fair amount of room, probably the equivalent of two medium suitcases? I just don't think we will fit.

We both feel so grateful for everything MAW and GKTW has prepared for us that we hesitate to question this. DH actually objects to asking anything about it pretty strongly. I wasn't sure how I felt at first but as I thought about it, I decided that it really is a pretty big inconvenience. DH suggested he make two trips from the airport to get it all to GKTW. Who will watch our stuff while he does that? We leave our house at 6 and arrive in Orlando at 7 (local time) so after 10 hours of travelling I don't want to sit at the airport any longer than we have to. He suggested that the GKTW greeter take some of our stuff, but I don't think he understood that they probably don't go back to the village after seeing us. He suggested we just ask AVIS when we get there if we can upgrade on our own, but I'm afraid they won't have anything left by the time we get there that evening. I already checked for availability of a minivan at MCO Avis and they are sold out. What if the SUVs are gone when we check in? (I'm assuming we could fit in an SUV, since it at least has a taller roof for us to stack things) As you can tell, he is really very uncomfortable with saying anything to anyone about it (although I did get his permission to ask you all for your opinions).

It crossed my mind to ask about what kind of rental way back when, but I had already asked so many questions I felt uncomfortable doing so. Now I wish I had! I guess I also assumed that our wish granter had said something to whoever was in charge of that part, because I picked her up and drove her with us in our minivan to a MAW Christmas activity. Maybe they just go directly off of family size? What would you guys do? I think I can figure out a gracious way of asking about other possibilities but I'm not even sure who to ask. From past experience I know that our wish granters don't have the answers to direct questions, they have to ask the main office and get back to us which we don't have time for at this point. Does MAW pay for the rental or GKTW? Which one should I talk to if we decide to bring it up?

My first reaction here was to hang on until you get to the airport...Honestly, I think when you show up with the bags and wheelchair and it doesn't fit that they will take care of it for you there. IF you don't want to have to call, which I totally understand.

But...I also agree with all of the previous posters. I don't think it would be out of line at all to call. I don't think this would sound ungrateful...just a logistical problem. And I am sure by the tone of your post here that your phone call to them would be very kind and that they would probably appreciate knowing what you guys are thinking about.

I do know of one other family that had issues with the car when they got to the airport and a call was made by the car rental place and they had a van pretty quickly.

Just wanted to update on Sydney. We still haven't spoken directly with her oncologist, just the oncology nurse and her paediatrician. Both are pushing for a face to face with the oncologist for early next week. We should know today. I was told yesterday by the nurse that the oncologists believe neuroblastoma cells are giving positive results on the test. They've said that once these mature, they become normal cells and the test comes back normal until others activate again. That's all I've been told. What I know though, from my own research and speaking with her paed is that after age 2, neuroblastoma cells will rarely mature completely and become normal cells. That means, its back. The onc nurse said that there's a little girl in the under 2yrs clinic that has fluctuating levels and they even did a full body scan to find out why but nothing so they figure for some children, this just happens. Two concerns there: that child was under 2, Sydney isn't and Sydney hasn't had a scan since 2007 and then it was just abdominal because that's where the tumor was. We're now pushing not only for a meeting but for a full body scan to see if there is a tumor lurking in her. I want the meeting by early next week with a scan within a week afterwards. DH has contacts (he's a pharmaceutical patent lawyer) and is trying to find the best paed oncologist to take her on and work with the hospital here to do the testing/treatment. Our hospital is amazing but things work slowly here and right now, I want things done quickly. Any advice would be great but in any event, please send a little prayer for her.

Thank you so much for the update. Definitely praying! Sounds like you are definitely on the right track to getting a full picture of her tumor status. Hang in there. We are praying!

 

[owensdad]

Hi folks, bit of help needed here. Due to MAW policy of not sending any other family memebers we tried hard to get Owen's gran to be included but to no avail, they have spoken to GKTW and they are fine with it but she would have to provide her own park tickets, everything else would be ok. Now from what ive read we should get a 3 day Disney hopper ticket, 2 day Universal and a 1 day Seaworld. We will probably give US a miss so would just need a Disney 3 day hopper and the Seaworld 1 day ticket.

Over here in England its quite expensive and there aren't any 3 day hoppers for Disney available here. What is the price like over there now? is it worth trying to source them from the US?

any help appreciated folks, cheers

 

[kdzbear]

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I know that many of you are talking about checking out the new Ridemakerz shop in Downtown Disney. The link above is for a $10 coupon. I hope it helps!

Try this link: http://www.facebook.com/note.php?note_id=120273829473

 

[maroo]

Hi folks, bit of help needed here. Due to MAW policy of not sending any other family memebers we tried hard to get Owen's gran to be included but to no avail, they have spoken to GKTW and they are fine with it but she would have to provide her own park tickets, everything else would be ok. Now from what ive read we should get a 3 day Disney hopper ticket, 2 day Universal and a 1 day Seaworld. We will probably give US a miss so would just need a Disney 3 day hopper and the Seaworld 1 day ticket.

Over here in England its quite expensive and there aren't any 3 day hoppers for Disney available here. What is the price like over there now? is it worth trying to source them from the US?

any help appreciated folks, cheers

A three day park hopper runs about $285. Not sure about the Sea World Ticket...but hopefully someone can come along shortly and help you with that information.

 

[TTomlinson]

Organizing tips anyone? I'm realizing I have a lot of printed out material, info from websites, plans and schedules and emails printed with reservations, etc... I'm trying to figure out what is the best way to get all this organized to take with me etc... I'm thinking maybe a 3 ring binder with sections for each "type" of info and poly pockets to hold other paperwork/tickets etc? I know there are lots of you that have done this before and just wondering what worked best for you to keep it organized, at your fingertips, easy to travel with etc...

 

[casper_jj11]

I take three things. One of those pocket folders from the dollar store with an internal pocket on each side for emails, print outs etc. I also include a full size copy of our itinerary. I take it on the plane with me to have on hand but I leave it in the hotel room. I also have two mini photoalbum (soft sided) also from the dollar store. I put our itinerary on 4 x 6 cards and place them all in one album. I leave this in the hotel as well. In the second album I put only the 4x6 itinerary cards for the park we'll visit that day. I also have on the last page of the album all our ressies with numbers and times and a list of people I need souvenirs for. The cards fit perfectly in my fanny pack and we're set for the day.

 

[cantwaittoseemickey]

Just wanted to update on Sydney. We still haven't spoken directly with her oncologist, just the oncology nurse and her paediatrician. Both are pushing for a face to face with the oncologist for early next week. We should know today. I was told yesterday by the nurse that the oncologists believe neuroblastoma cells are giving positive results on the test. They've said that once these mature, they become normal cells and the test comes back normal until others activate again. That's all I've been told. What I know though, from my own research and speaking with her paed is that after age 2, neuroblastoma cells will rarely mature completely and become normal cells. That means, its back. The onc nurse said that there's a little girl in the under 2yrs clinic that has fluctuating levels and they even did a full body scan to find out why but nothing so they figure for some children, this just happens. Two concerns there: that child was under 2, Sydney isn't and Sydney hasn't had a scan since 2007 and then it was just abdominal because that's where the tumor was. We're now pushing not only for a meeting but for a full body scan to see if there is a tumor lurking in her. I want the meeting by early next week with a scan within a week afterwards. DH has contacts (he's a pharmaceutical patent lawyer) and is trying to find the best paed oncologist to take her on and work with the hospital here to do the testing/treatment. Our hospital is amazing but things work slowly here and right now, I want things done quickly. Any advice would be great but in any event, please send a little prayer for her.

Joanne, we are praying for Syndey and your family hun. We are also praying that you are able to find a dr to help in her treatment and get things done as quickly as possible. Lots of hugs!

 

[Adrismommy]

The talk about a rental has me wondering... we live in SC and will be driving to GKTW. It's about an 8 or 9 hour drive. Our wish granters said that because of the economy they aren't flying anyone right now (anyone within driving distance, of course), and that was perfectly fine with us. They gave us the option of using a rental or driving our own vehicle. Well our van has 180K miles on it so anytime we can avoid putting more miles on it, we do. So I explained that to them and they just said, of course, it was fine for us to do whatever. But I assumed we would get a van... maybe I'm wrong? I would much rather put miles on my van than drive that kind of distance with an infant and a 3 year old in a small car. Now I'm wondering if I should call and find out... anyone else ever driven before?

 

[pudge the fish]

Hi folks, bit of help needed here. Due to MAW policy of not sending any other family memebers we tried hard to get Owen's gran to be included but to no avail, they have spoken to GKTW and they are fine with it but she would have to provide her own park tickets, everything else would be ok. Now from what ive read we should get a 3 day Disney hopper ticket, 2 day Universal and a 1 day Seaworld. We will probably give US a miss so would just need a Disney 3 day hopper and the Seaworld 1 day ticket.

Over here in England its quite expensive and there aren't any 3 day hoppers for Disney available here. What is the price like over there now? is it worth trying to source them from the US?

any help appreciated folks, cheers

Tickets for Sea world run about 78.95 for adults.
Now you can buy online but i am not sure it's available to those overseas...
But it's 10.00 cheaper to buy online for sea world
here the Website for Sea world tickets

http://www.seaworld.com/Tickets/Visitors.aspx
hope this helps

 

[Mtopher4]

Joanne, we are praying for Syndey and your family hun. We are also praying that you are able to find a dr to help in her treatment and get things done as quickly as possible. Lots of hugs!

Praying for Sydney ((((((Hugs)))))

The talk about a rental has me wondering... we live in SC and will be driving to GKTW. It's about an 8 or 9 hour drive. Our wish granters said that because of the economy they aren't flying anyone right now (anyone within driving distance, of course), and that was perfectly fine with us. They gave us the option of using a rental or driving our own vehicle. Well our van has 180K miles on it so anytime we can avoid putting more miles on it, we do. So I explained that to them and they just said, of course, it was fine for us to do whatever. But I assumed we would get a van... maybe I'm wrong? I would much rather put miles on my van than drive that kind of distance with an infant and a 3 year old in a small car. Now I'm wondering if I should call and find out... anyone else ever driven before?

Vans are way more expensive to rent than cars.. My guess if they have you booked in a car. I'd call if you have questions. Ask if you can have a midsize car for safety reasons

 

[pacrosby]

Vans are way more expensive to rent than cars.. My guess if they have you booked in a car. I'd call if you have questions. Ask if you can have a midsize car for safety reasons

I think someone earlier posted about how the rental system works and suggested that they are not paying the going rate (in fact I think they said the info they had read indicated that the rental rate for the Wish organizations was a flat fee regardless of what size the vehicle). Whether that's true across the board I don't know but I guess my point is that a van may actually not cost anymore for them. The best thing to do might just be to ask them directly i.e. "would it be possible for us to have a van since that's what we are used to driving and feel that it is so much safer for our family than a compact?" Let them take it from there. Either they'll say "oh sure", or they'll say "how 'bout a midsize (or whatever), or they'll say "we're sorry we can only offer you a compact".

Always best to just let your concerns be known and ask for what you think you'll really be needing........................that would be my opinion anyway

 

[Mtopher4]

I think someone earlier posted about how the rental system works and suggested that they are not paying the going rate (in fact I think they said the info they had read indicated that the rental rate for the Wish organizations was a flat fee regardless of what size the vehicle). Whether that's true across the board I don't know but I guess my point is that a van may actually not cost anymore for them. The best thing to do might just be to ask them directly i.e. "would it be possible for us to have a van since that's what we are used to driving and feel that it is so much safer for our family than a compact?" Let them take it from there. Either they'll say "oh sure", or they'll say "how 'bout a midsize (or whatever), or they'll say "we're sorry we can only offer you a compact".

Always best to just let your concerns be known and ask for what you think you'll really be needing........................that would be my opinion anyway

Opps.. thought they were referring to GKTW and not make a wish?

 

[pacrosby]

Opps.. thought they were referring to GKTW and not make a wish?

"I think" they had said the rental car is paid to GKTW by MAW as part of the whole package. That's how I understood it anyway. If a Wish tripper is not staying at GKTW that's something else entirely but I'm still guessing MAW isn't paying the going rate for the rental. Given that it is a charitable organization and all it's likely that they have special agreements with different companies (some may donate goods/services; others may offer their goods/services at a discount). Obviously I don't have an insider info but if I were the betting type, I'd be putting some money on that



edited to add: but hey, I just had a flashback. I do "know" that our chapter in fact did pay for the rental themselves. I know that because they allowed us to use their confirmation number to add a couple of days at our own expense. It was at a significant discounted rate as I remember though. "Significant".

Lesson learned..........................there is no rhyme nor reason to how things are handled from chapter to chapter LOL So when in doubt maybe just best to ask directly.

 

[jen-y]

Just wanted to update on Sydney. We still haven't spoken directly with her oncologist, just the oncology nurse and her paediatrician. Both are pushing for a face to face with the oncologist for early next week. We should know today. I was told yesterday by the nurse that the oncologists believe neuroblastoma cells are giving positive results on the test. They've said that once these mature, they become normal cells and the test comes back normal until others activate again. That's all I've been told. What I know though, from my own research and speaking with her paed is that after age 2, neuroblastoma cells will rarely mature completely and become normal cells. That means, its back. The onc nurse said that there's a little girl in the under 2yrs clinic that has fluctuating levels and they even did a full body scan to find out why but nothing so they figure for some children, this just happens. Two concerns there: that child was under 2, Sydney isn't and Sydney hasn't had a scan since 2007 and then it was just abdominal because that's where the tumor was. We're now pushing not only for a meeting but for a full body scan to see if there is a tumor lurking in her. I want the meeting by early next week with a scan within a week afterwards. DH has contacts (he's a pharmaceutical patent lawyer) and is trying to find the best paed oncologist to take her on and work with the hospital here to do the testing/treatment. Our hospital is amazing but things work slowly here and right now, I want things done quickly. Any advice would be great but in any event, please send a little prayer for her.

We are praying for Sydney. If there is a possibility it is back, then things definately need to move faster. I am not sure how things work there, but my son has leukemia and goes to Children's Memorial Hospital in Chicago. I can get his oncologist or the oncologist on call on the phone 24/7 with questions or problems and we have never had to wait or push for a test. If it were me, I would look to go someplace else. If that is not an option, then I would continue to push till they get tired of me. Whats that saying??? "The squeeky wheel gets the grease"

 

[maroo]

The talk about a rental has me wondering... we live in SC and will be driving to GKTW. It's about an 8 or 9 hour drive. Our wish granters said that because of the economy they aren't flying anyone right now (anyone within driving distance, of course), and that was perfectly fine with us. They gave us the option of using a rental or driving our own vehicle. Well our van has 180K miles on it so anytime we can avoid putting more miles on it, we do. So I explained that to them and they just said, of course, it was fine for us to do whatever. But I assumed we would get a van... maybe I'm wrong? I would much rather put miles on my van than drive that kind of distance with an infant and a 3 year old in a small car. Now I'm wondering if I should call and find out... anyone else ever driven before?

We flew and drove. Confusing, huh!

They actually sent Lauren, her brother and her parents on the plane - but we could not fly Lauren's wheelchair (too tall and her specific wheelchair configuration would not allow it to be turned on it's side to be stored) - so I drove their van down. They had to have their van, since it has her lift and tie downs and all of that. I just drove her wheelchair strapped in the van and then met them at the airport.

They were willing to fly us or let me drive. It was basically a "wash" for them to let me just drive - they saved on my plane ticket AND didn't have to rent a wheelchair accessible van for us - and the comfort level of me driving their van was much easier. A lot of those vans can be bulky and cumbersome to drive.

These things vary so much by chapter. I think it is awesome that you guys plan to drive! You will have so much fun on the drive, I think!

I guess see what they are planning for vehicles - I think they would do everything they could to accommodate you guys.

"I think" they had said the rental car is paid to GKTW by MAW as part of the whole package. That's how I understood it anyway. If a Wish tripper is not staying at GKTW that's something else entirely but I'm still guessing MAW isn't paying the going rate for the rental. Given that it is a charitable organization and all it's likely that they have special agreements with different companies (some may donate goods/services; others may offer their goods/services at a discount). Obviously I don't have an insider info but if I were the betting type, I'd be putting some money on that



edited to add: but hey, I just had a flashback. I do "know" that our chapter in fact did pay for the rental themselves. I know that because they allowed us to use their confirmation number to add a couple of days at our own expense. It was at a significant discounted rate as I remember though. "Significant".

Lesson learned..........................there is no rhyme nor reason to how things are handled from chapter to chapter LOL So when in doubt maybe just best to ask directly.

Totally agree with this! There does not seem to be any rhyme or reason on how things are handled by different states and chapters.

We are praying for Sydney. If there is a possibility it is back, then things definately need to move faster. I am not sure how things work there, but my son has leukemia and goes to Children's Memorial Hospital in Chicago. I can get his oncologist or the oncologist on call on the phone 24/7 with questions or problems and we have never had to wait or push for a test. If it were me, I would look to go someplace else. If that is not an option, then I would continue to push till they get tired of me. Whats that saying??? "The squeeky wheel gets the grease"

They are from Canada - and I think the healthcare system there is completely different from the States. It is free, if I understand it, but it is specifically organized - which I think is the difference from the States.

I don't really know how it all works - but I think that is factoring in to the situation for them.

We are praying for you guys!!!!