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

[praisehisname]

The planning fanatic, OCD, part of me would be losing my mind over not knowing the details until October! Maybe it will force you to have a more relaxed trip? I agree, though, with what dvczerfs said about making ADRS and just cancelling what you can't use.

Did they explain *why* you can't extend your trip?

 

[KatMark]

Juliana looks like she had the best care...you can tell by the photos how much the nurses care. And I love the photo of Ana in the rocking chair with all her stuffed animals.

I'm sure you are going crazy not being able to plan...I know I would.

 

[tinacaplan]

Our son had a (minor) procedure done at the CCMC and we were just overwhelmed by how wonderful the entire staff was. It was so obvious that they all really wanted to be there, working with kids, from the front desk clerks to the nurses to the doctors. It was an incredible experience.

And I can't believe you have to wait until October. I would have a really tough time with that, too.

 

[Mom2mitokids]

Great pictures of Ana. Let me get this straight..you had your MAW granter there in January and they can't tell you until October when you are going? That is just plan nuts. We just had our granters here a week ago and they told me within 2 weeks we will have dates. All they have to do is call GKTW and make reservation. If they have space they pencil you in. If they are booked they ask for other dates. That's why they ask you for 3 dates. For the extension...our MAW does it. They said it's no problem to book the airline for coming home when you want. It's doesn't cost them anything to tell them when we want to go home. They just make sure you know that they aren't responsible for the rental van and hotels. We extended our trip last time by 2 days and this time we are doing 3 days. We know we will never get back to Florida again. I'm such a planner that not sure how I would do without knowing. I guess just plan that you are going in Dec.

 

[Mom2mitokids]

Oh....Kylee's wish was Disney World, but it was Sea World that all she talks about. Everything is Shamu. Universal Studios was the best when it comes to the wish kids. They were so much better than Disney World. They came up to us grabbed our hands and took us to the characters and made sure where the kids wanted to sit on rides. You just felt special. We even went to our Universal in So Cal with the Starlight Foundation in June and they did they same thing. We had no GAC(beside Kylees SN stroller as a wheelchair pass) and they still made us feel special. All they saw was Kylee wearing her feeding backpack.

 

[maroo]

It really does seem strange that you won't get your dates confirmed until October?

I think I know who that DISer was?

he he

I am enjoying your TR - especially all of the pictures!

 

[yinyanggirls]

So as of now we think we are going December 1-7th. I say think because our granters have told us they will not let us know any information till OCTOBER!!!!!

Wow, I just realized your wait is even longer than ours was! We found out she was approved for her wish in August, but didn't get our dates (in April) until November.

So basically Melody and I have to try to plan for a trip that isn't guaranteed to even happen in December. What happens if GKTW is filled up by October and we don't have a spot? We have to try to plan out park days with out knowing what time we leave/arrive and what time we come home. Not to even mention the fact that I asked about extending the trip by a few days (on our own dime) and was told that our MAW does not do that. We have family in the Orlando area and it would of been nice to see them. (Melody's cousin & family- including Melody's godson)

If there is no other way to extend, what do you think about inviting them to come visit you guys at GKTW? It would probably be the only chance they will ever to see it (unless they ever volunteer) and it certainly has fun stuff for all the kids. I believe they can eat there also for something like $1 each...

We also want to possibly try to fit in the tea party at the GF and who knows maybe MVMCP. We have never been to Sea World or Universal (Florida) and I have no clue about these parks...well besides reading other TRs.

So that is it in a nutshell... Let the planning begin!!!!!!!!!

I love the pics with the doc and nurses. It's awesome to have people you like and trust when you are in that position of putting your child's life in their hands. My good friend whose DD survived leukemia (now 13) just graduated with her RN. She felt like she learned so much just being there every day, and was inspired by the great nurses they had, she wanted to be able to do that for someone else.

 

[jenseib]

I think it is weird they won't let you extend your stay.

 

[brookelizabeth]

Well...I sure hope it all pans out and works perfectly! We'll be along for the PTR ride ups and downs!

I love how Julianna got prizes before AND after treatment. Something tells me she had those nurses wrapped around her little finger!

How won't GKTW allow you to extend your trip? The airplane tickets? Maybe you can just buy your own one-ways back? Seems strange....

 

[xoktenox]

Hey Tim! Just wanted to let you know I'm hear reading!

That's so amazing that Juliana is getting a Wish trip...she soooo deserves it for everything she went through as just a little peanut. I've seen pictures of the Give Kids the World village and it looks soooo cool!

I've been to Universal and Islands of Adventure so if you have any questions, feel free to ask!

 

[that's nice]

I love it when I see health professionals who atually LOVE their jobs and find joy in them!!

The oncology clinic at CCMC is really filled with wonderful people!

I can totally understand your frustration about planning a trip that is so uncertain. UGH!!! I guess it will all unfold over time, and that's what a PTR is for- it'll be fun for all of us to see how it all falls into place. And to share your ups and downs with you.

I'm sure you all will get a kick out of me booking ADRs and trying to make up a plan.

I am open to any/ all suggestions!

good for her, two prizes a treatment! that is a tuff one, trying to plan a trip that you have no idea when it is. i would make my adrs and just cancel the ones i didnt need when i found out what was going on.

I think that is what I'm going to have to do. Now I need to put up a tentative schedule in the next day or 2... I need to make some ADRs because I'm going to be competing with all those Free Dining ADRs.

Hi Tim, Mel & Juliana!! I'm here and I'm sorry I'm later than I wanted to be! It doesn't mean I love ya guys any less!!

No prob!!!!! Thanks for coming Heather!!!!

Every time I read the details of Juliana's story and what you went through, I tear up every time. She is such a sweet angel and I'm so very happy she has done so well since then. YAY for Juliana!!!

She is doing well We've been calling her doctor trying to schedule her 3 month appointment. That is a tad stressful dealing with the scheduler!!!

I can't wait to hear about all the details of the trip but I know it's really hard not to be able to plan like you like to! I guess things happen for a reason and you guys always make the best of it! I would love to do the Tea!! I guess I'll save this for a girls trip, one day...

You think I am an OCD planner?

So if the girls do the tea, what am I gonna do? hummmmm

The planning fanatic, OCD, part of me would be losing my mind over not knowing the details until October! Maybe it will force you to have a more relaxed trip? I agree, though, with what dvczerfs said about making ADRS and just cancelling what you can't use.

Did they explain *why* you can't extend your trip?

I doubt we will have a more relaxed trip... that doesn't happen with us!

I think in the next few days I will have to try to get a few ADRs

I don't have a concrete explanation why, but I was told that MAW (CT chapter) does not allow Wish trip extensions. Maybe something happened in the past or something? I donno?

Juliana looks like she had the best care...you can tell by the photos how much the nurses care. And I love the photo of Ana in the rocking chair with all her stuffed animals.

I'm sure you are going crazy not being able to plan...I know I would.

She used to get in the chair and have us pile on some of her dolls. She used to get a kick out of that!

I am going to try not to get nuts.... you can help keep me sane ok?

 

[that's nice]

Our son had a (minor) procedure done at the CCMC and we were just overwhelmed by how wonderful the entire staff was. It was so obvious that they all really wanted to be there, working with kids, from the front desk clerks to the nurses to the doctors. It was an incredible experience.

CCMC is a great hospital. We were very happy going there, although it wasn't really our choice.

And I can't believe you have to wait until October. I would have a really tough time with that, too.

I am going to make the best of it! You guys can help me!

Great pictures of Ana.

Thank you!

Let me get this straight..you had your MAW granter there in January and they can't tell you until October when you are going? That is just plan nuts. We just had our granters here a week ago and they told me within 2 weeks we will have dates. All they have to do is call GKTW and make reservation. If they have space they pencil you in. If they are booked they ask for other dates. That's why they ask you for 3 dates.

We wanted to get the ball rolling with MAW, that is why we set up the appointment. I don't understand why is takes this long to get a conformation from them. But it is what it is... Hopefully after all the planniong that is about to take place, we don't get a call to pick more dates!

For the extension...our MAW does it. They said it's no problem to book the airline for coming home when you want. It's doesn't cost them anything to tell them when we want to go home. They just make sure you know that they aren't responsible for the rental van and hotels. We extended our trip last time by 2 days and this time we are doing 3 days. We know we will never get back to Florida again. I'm such a planner that not sure how I would do without knowing. I guess just plan that you are going in Dec.

Every MAW is different....That is awesome that you are able to extend your trip. Someone suggested once I get the airline info I might be able to change my flight home. I am up in the air about this. (no pun intended!)

Oh....Kylee's wish was Disney World, but it was Sea World that all she talks about. Everything is Shamu. Universal Studios was the best when it comes to the wish kids. They were so much better than Disney World. They came up to us grabbed our hands and took us to the characters and made sure where the kids wanted to sit on rides. You just felt special. We even went to our Universal in So Cal with the Starlight Foundation in June and they did they same thing. We had no GAC(beside Kylees SN stroller as a wheelchair pass) and they still made us feel special. All they saw was Kylee wearing her feeding backpack.

That is awesome!!!!These are the moments you didn't plan that make the best memories! I would like for Juliana to see the killer what show. Hopefully it is going on when we are there.

It really does seem strange that you won't get your dates confirmed until October?

I know... but you guys are going to help me through this!

I think I know who that DISer was?

I'm sure you might... I still have the PM saved.

I am enjoying your TR - especially all of the pictures!

Thanks Mary... I'm glad you're here (I knew you wouldn't miss it! )

 

[All7OfUs]

I'm sure you all will get a kick out of me booking ADRs and trying to make up a plan.

Yes, maybe we'll even get some cake drama to go with it...

 

[that's nice]

I love the pics with the doc and nurses. It's awesome to have people you like and trust when you are in that position of putting your child's life in their hands. My good friend whose DD survived leukemia (now 13) just graduated with her RN. She felt like she learned so much just being there every day, and was inspired by the great nurses they had, she wanted to be able to do that for someone else.

Good idea having her family come visit us a GKTW... I was thinking meeting them at DTD one night or 2.

Leukemia is one of the worst... a friend of mine's son had it and it was such a long road for him. Now your friends DD is going to make a difference in people's lives.

I think it is weird they won't let you extend your stay.

I know... but it was already weird asking about it once. I might ask one more time... but I doubt it.

Well...I sure hope it all pans out and works perfectly! We'll be along for the PTR ride ups and downs!

!!!!!!! thanks for joining!

I love how Julianna got prizes before AND after treatment. Something tells me she had those nurses wrapped around her little finger!

Good to know that I'm not the only one she has wrapped around her finger!!! She got good at milking the prizes!

How won't GKTW allow you to extend your trip? The airplane tickets? Maybe you can just buy your own one-ways back? Seems strange....

It is not GKTW.. it is our local MAW. I thought about buying our own 1 way back. It seems like a waste to have them buy us round trip tix though.

Hey Tim! Just wanted to let you know I'm hear reading!

That's so amazing that Juliana is getting a Wish trip...she soooo deserves it for everything she went through as just a little peanut. I've seen pictures of the Give Kids the World village and it looks soooo cool!

I've been to Universal and Islands of Adventure so if you have any questions, feel free to ask!

WHATS UP!!!!! I can't wait to hear about your trip!

I'm glad you have some US knowledge... I'm sure you will be able to answer some questions!

 

[that's nice]

Yes, maybe we'll even get some cake drama to go with it...

LOL.. do I even dare get another cake? Maybe I can just have Mel's cousin make it for us. Her cakes are the BOMB anyways. She blows the WDW cakes away!!!

 

[All7OfUs]

LOL.. do I even dare get another cake? Maybe I can just have Mel's cousin make it for us. Hers are the BOMB anyways. She blows the WDW cakes away!!!

Yeah, I gathered that from the photos!! She's an artist!!

 

[Mom2mitokids]

I like the idea of when you get the plane conformation to just see about extending the ticket.

 

[FreezinRafiki]

Late to the party...but Barry and Dr. thatsnice...this is for you...

Link

So far, I've only seen one episode of Phineas and Ferb - my kids just aren't quite old enough yet. But I can't wait until they are - it looks like a show I could actually get into.

**Team Tim** Even I am not Ba**sy enought to call him Timmy...

Now, about that cold one...................

Man, all this recruitment is draining. All this paperwork and NCAA-style recruitment rules and violations. Sometimes I wish we could go back to simpler times when all we did was sit around plotting each other's doom...

I know how important a good nurse is. My kids have never been really sick like Juliana, but we've been in the doctor's office for all sorts of little things - ear infections, strep throat, bronchitis, etc. The kids just love our doctor's nurse and always have to seek her out for a hug, even if she's not the one that calls us back to the exam room.

 

[that's nice]

Yeah, I gathered that from the photos!! She's an artist!!

She is an artist.... too bad her full time job keeps her away from baking.

I like the idea of when you get the plane conformation to just see about extending the ticket.

This is just going to have to be a wait and see thing.... if it doesn't happen then so be it.

So far, I've only seen one episode of Phineas and Ferb - my kids just aren't quite old enough yet. But I can't wait until they are - it looks like a show I could actually get into.

We don't watch it either... but I have sneaked a few episodes on my own.

Man, all this recruitment is draining. All this paperwork and NCAA-style recruitment rules and violations. Sometimes I wish we could go back to simpler times when all we did was sit around plotting each other's doom...

I know how important a good nurse is. My kids have never been really sick like Juliana, but we've been in the doctor's office for all sorts of little things - ear infections, strep throat, bronchitis, etc. The kids just love our doctor's nurse and always have to seek her out for a hug, even if she's not the one that calls us back to the exam room.

The nurses are the one's we have to deal with most of the time. The doctor comes in for the 'serious' stuff then we have 'fun' with the nurses... if drawing blood is fun.

 

[KatMark]

She used to get in the chair and have us pile on some of her dolls. She used to get a kick out of that!

I am going to try not to get nuts.... you can help keep me sane ok?

Sure, we can TRY to keep you sane. The problem is--YOU DIS as much as us, and it is hard to sane around here with all the Goofy people.