Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[WishMom09]

How fun Maroo! I love spontaneous trips like that! I know you will have a great time!

 

[WishMom09]

pre trip report question.....
do you start that on the trip report board?

 

[maroo]

pre trip report question.....
do you start that on the trip report board?

Within the TR board, there is a pre-trip report and plans board. It is at the top. You will click on that and start the thread there!

I am SOOO excited you are starting a pre-trippie!!! Woo Hoo!

 

[WishMom09]

OK...I added our pre trip.
I got carried away.....it was way longer than I meant it to be!
oops!!

 

[maroo]

OK...I added our pre trip.
I got carried away.....it was way longer than I meant it to be!
oops!!

Woo Hoo!

Sorry I did not get to post earlier. Disboards went down right as I was posting to your trippie!! Great job!

Here is the link so everyone can take a look!!

WishMom09 (Caleb's Mom) Wish Pre-Trippie!

 

[iu97alum]

Hello all!

I am new here and thought I would just say hi. I have sent in my paper work to my MAW and am just waiting response. I didn't even know I qualified until my sons oncologist told us to get in touch with them. Aidan was born with neuroblastoma cancer in his right lung cavity, but it wasn't found until he was 5 months old at stage 4. Short version-One night he stopped breathing and they did x-rays. They kept us over night and told us he more than likely aspirated. They sent us home and called later that day to tell us he needed a CT, that someone at the local children's hospital read his films and felt there was more there. So we took him and no sooner did we get home, they called and told us to get to the hospital right away that they were waiting for us. So 4 rounds of chemo, 3 surgeries later, we now have what seems to be a healthy 2 1/2 year old. He is currently in a watch and make sure state with scans and urine tests. We are just waiting an a urine sample to come back, having the last one about 2 months ago come back elevated. (Neuroblastoma increases something in your urine when it is present.) I am hoping for the best!

I can't imagine MAW saying no, but I am not really that familiar with the whole process. If anyone has any experience with the Ohio chapter, I would appreciate hearing your experience!

Also, how long from the time you are approved do you generally go to Disney. We are currently planning our own trip in November.

Welcome!!!

I don't have any info on the ohio chapter but thought I'd say hello! We met many many families up in NY (Sloan Kettering) that had neuroblastoma.

I believe our MAW says that the child must be between the ages of 3-18 and w/in six months of treatment (at least for a cancer child??).

For us, we were applied in August and (chose to) had her trip in January. We wanted to make sure all tubes, ports, etc, were out.

Welcome!!

 

[maroo]

Hello all!

I am new here and thought I would just say hi. I have sent in my paper work to my MAW and am just waiting response. I didn't even know I qualified until my sons oncologist told us to get in touch with them. Aidan was born with neuroblastoma cancer in his right lung cavity, but it wasn't found until he was 5 months old at stage 4. Short version-One night he stopped breathing and they did x-rays. They kept us over night and told us he more than likely aspirated. They sent us home and called later that day to tell us he needed a CT, that someone at the local children's hospital read his films and felt there was more there. So we took him and no sooner did we get home, they called and told us to get to the hospital right away that they were waiting for us. So 4 rounds of chemo, 3 surgeries later, we now have what seems to be a healthy 2 1/2 year old. He is currently in a watch and make sure state with scans and urine tests. We are just waiting an a urine sample to come back, having the last one about 2 months ago come back elevated. (Neuroblastoma increases something in your urine when it is present.) I am hoping for the best!

I can't imagine MAW saying no, but I am not really that familiar with the whole process. If anyone has any experience with the Ohio chapter, I would appreciate hearing your experience!

Also, how long from the time you are approved do you generally go to Disney. We are currently planning our own trip in November.

First, I am SO sorry that I missed your post! It was at the bottom of the page and I just missed it!!

Becca, one of our wish children, is from Ohio. You can find her thread here:

Link to Becca's Pre-Trip Thread - another Ohio family

They are from Ohio. And Becca went and had what I understand was an awesome trip. They got back at the end of January and she had to have emergency surgery a week or so ago and has been in the PICU ever since.

But, her Mom, Mandy, would probably be able to help you with this. Once Becca starts to feeling better! Mandy has been very active on the DISboards and would be excited to help someone else. As soon as she gets over this hard spot.

Our MAW chapter told us that once a child is approved for a wish - they can take it ANY time! They can wait years and take it! For a child that will get progressively worse with their disease, most parents and children opt to go ahead and take it while they are feeling the best. For parents of children with cancer, sometimes they wait a while. I have seen several wait until the port is out, because that is usually a good sign that they won't be doing much more in the way of treatment. Of course, some wish kids need to go on their trips right away, which is understandable, too.

And some kids just want to go right away! And I say...they have been through heck, let em go!

As far as the time it takes...totally varies by chapter and according to how many kids they have on a waiting list. It also depends on how urgent the trip is, both for your child and the others on the list. GKTW tends to fill up and November is a good time to go! Especially once they put those Christmas decorations up....a magical time!

I do hope you keep up with us on this thread! I am so glad that someone quoted your post!!! Because I had missed it completely!!!

 

[AmberGreenawalt]

Hi my beloved DIS buddies! I'm sorry I have been so MIA. Life has kept us quite occupied. If you still would like to keep up with our adventures you can visit my blog at http://greenawaltfamilylife.blogspot.com/ Someday I still hope to write a fabulous trip report. In the meantime I have started to post the photos from Sebastian's Wish Trip on face book. I have days 1-4 on there and part 1 of day 5. Must get crakin' on that too! Anyway, I just wanted to say that I miss ya'll!!!

 

[daddyto8]

Hi, I'm new here and have found this thread and the links to be wonderful.

My pre-trip report (or what I have so far ) posted and it is in my signature line.

Tom

 

[maroo]

Hi, I'm new here and have found this thread and the links to be wonderful.

My pre-trip report (or what I have so far ) posted and it is in my signature line.

Tom

Hello! Welcome!

I can't find your pre-trip report. Can you post a link? It isn't showing up in your signature and I can't seem to find it in the pre-trip report...but I may have overlooked it.

At any rate...welcome!!

 

[maroo]

Hi, I'm new here and have found this thread and the links to be wonderful.

My pre-trip report (or what I have so far ) posted and it is in my signature line.

Tom

I found it!!!

Yeah!!!

http://www.disboards.com/showthread.php?t=2092028

A new wish pre-trip report!

Thank you so much for introducing yourself! *runs off to read*

 

[QueenMomof2]

Thanks for the advice on the WDW guides everyone. I ordered the Passporter 2009, PassPorter Open Mouse & Birnbaums Guide to WDW for KIDS. With the great deals on Amazon I couldn't pick just one.

They arrived yesterday and the kids LOVE the Birnbaum one. DD slept with it.

DH and I spent the evening going through the Passporters they are so great with all the amazing info and advice.

We dropped our paper work off at MAW last week so now we just wait and see.

I'm so excited by all the new Wish Pre Trip reports that have started. I can't wait to read about all the magic everyone experiences.

I'm a nervous wreak getting ready for DD to be admitted on Monday, she's having a 5 day VEEG done. So it's great the guides came they can do their job of keeping me occupied.

I'm so so happy to hear that Becca is doing better. We'll be praying that she continues to make positive progress. Then that Noah is out of the hospital and getting ready to make his trip soon is another blessing.

I can't wait to read the TR.

 

[maroo]

QueenMomof2,

How was the Passporters guide? Does it have good disability information? Or is it more of the same you get on this website? I am curious if we should order it when Lauren gets to go back.

I am also so glad to hear that Becca is doing better and that Noah is off to the World in a few days!



Forgive my ignorance on this...but what is VEEG?

 

[littlewarriorsmom]

I posted on Renn's PTR, but wanted to get as much advice as possible.

Oh, first ... GREAT news ... she had scans yesterday and they were NED -- No Evidence of Disease!

Okay, now:

Our MAW rep emailed me ... GKTW was full up, so a very slight date adjustment -- we'll now be going April 23 - 29. I like this better! We'll be getting in Thursday night, so we won't have to worry about coming home early from a park to be there in time for "Christmas."

Okay, now tell me ... I figured we would want to avoid going to MK on a weekend. We're going to be so impatient for it, I don't want to wait til Monday -- a) is Friday an okay day to go and b) What about the GKTW Pirates and Princesses party? Is it a "don't miss"? (We have three daughters, ages 3-6-9.)

Guide me, teach me, you GKTW/Disney gurus!

 

[QueenMomof2]

QueenMomof2,

How was the Passporters guide? Does it have good disability information? Or is it more of the same you get on this website? I am curious if we should order it when Lauren gets to go back.

I am also so glad to hear that Becca is doing better and that Noah is off to the World in a few days!



Forgive my ignorance on this...but what is VEEG?

The Open Mouse Passporter is great, so far. I like how it has different sections for different types of disabilities and special needs. The info is useful and honestly I have found some interesting "tid bits" from all over.

The first thing I noticed that I thought was AWESOME is they have pictures of the different ride "seats". So you can see how accessible it is and plan sitting arrangements etc.

The regular Passporter is great too. It has some basic disability info. Lots of work sheets, which I plan on photo copying to do rough drafts, and schedules.

Great budgeting info.

I LOVE how the resorts are done so you can easily compare them, they have pics of the standard room layouts, but the neatest thing is the chart for the resorts that breaks down how long it takes you to get from the resort to the different parks. SWEET!

It's probably mostly all info you could get here and on the other various sites but I like having it in the book easily accessible.

I also like the pockets and day schedule folders at the back for doing your trip report as you go. That will be handy.

So ya I recommend them. I got the Passporter for 19.31 (or so) Open Mouse was 18.00 something on Amazon so it was a good deal. I also found a 10.00 off coupon code.

A VEEG is a Video EEG. So it's like a normal EEG but monitors 24/7 even while they are sleeping and also adds video.

 

[macntosh]

I know quite a few of us will be traveling to Disney in the next few days and I never really offered. I am in charge of a Photo Pass Swap and knowing that most Medically Enriched Families are on a Budget I wanted to offer inclusion in our swap. This has already been paid for by a group of people, but if your interested in jumping in at a small fee so that I can give a few bucks back to those that already paid, I would be willing to handle the influx.

Let me know ASAP if this is something you would be interested in. I have posted a message at our board just to let them know I was doing this.

http://www.disboards.com/showthread.php?t=2024128 That is a link to my Photo Swap if you have an interest.

 

[ndloewen]

I know quite a few of us will be traveling to Disney in the next few days and I never really offered. I am in charge of a Photo Pass Swap and knowing that most Medically Enriched Families are on a Budget I wanted to offer inclusion in our swap. This has already been paid for by a group of people, but if your interested in jumping in at a small fee so that I can give a few bucks back to those that already paid, I would be willing to handle the influx.

Let me know ASAP if this is something you would be interested in. I have posted a message at our board just to let them know I was doing this.

http://www.disboards.com/showthread.php?t=2024128 That is a link to my Photo Swap if you have an interest.

Thanks for the offer. I already joined another group though. So excited about getting lots of pictures!!

 

[dmbfan]

I posted some pictures on Jake's pre-trip thread of two wonderful gifts Jake and Hannah received yesterday from the Big Give.....I feel really bad cause I do not remember the name off the top of my head of the lady that made these and sent them to us as the box is at home.... But I just had to get my pictures up to share with you...

http://www.disboards.com/showthread.php?p=30368667#post30368667

I hate to ask, but I was wondering if you keep Jake in your thoughts and prayers over the next couple of days. He was admitted back into the hospital tonight with a g-tube infection, but a possiable line infection as well. A line infection would not be a good thing, so if you could please say a little pray that this fever and such is just from his g-tube and that it has not spread anywhere else such as his line.

I did post more on his CB site, there is a link at the bottom of my siggy if you would like to read. Thank you all so much...

 

[twinmum]

So sorry to hear about Jakob's admission to hospital - I hope you'll learn that there's no port infection, but this is just a common cold, plus an issue just with the tube. Makes me realize how lucky we've been with Mark's g-tube. We've never had any issues and it's often been called the "cleanest tube I've seen." Mind you, it is looking a little red and wee bit crusty right now, but I think it's just really dry around there right now.

Enough about us, because I am thinking of you. It's never fun being in hospital, but I am glad you were admitted directly to the floor, and with a favourite nurse as well.

I'll be praying that there's no line infection and that you get the g-tube cleared up and fever down soon.

Hugs to Jakob!
Alison

 

[maroo]

I posted on Renn's PTR, but wanted to get as much advice as possible.

Oh, first ... GREAT news ... she had scans yesterday and they were NED -- No Evidence of Disease!

Okay, now:

Our MAW rep emailed me ... GKTW was full up, so a very slight date adjustment -- we'll now be going April 23 - 29. I like this better! We'll be getting in Thursday night, so we won't have to worry about coming home early from a park to be there in time for "Christmas."

Okay, now tell me ... I figured we would want to avoid going to MK on a weekend. We're going to be so impatient for it, I don't want to wait til Monday -- a) is Friday an okay day to go and b) What about the GKTW Pirates and Princesses party? Is it a "don't miss"? (We have three daughters, ages 3-6-9.)

Guide me, teach me, you GKTW/Disney gurus!

I am so excited for DATES!! And an arrival on Thursday will be great!!

I do think the P&P party is fun...especially if your kids are into that sort of thing. But you could miss it, if you wanted. The only "don't miss" is Christmas, really. But that is just my opinion!

All of your park days (Friday - Tuesday) are currently listed as 5 or 6 out of 10 on the crowd score list. Which is great!

The "Good parks" for Friday are MK/AK, for Saturday is DS, for Sunday is EP, for Monday is MK and Tuesday is DS/AK. There are also a list of "parks to avoid" for these days as well. But that may give you a start.

Just on face value...I would think Friday MK all day (long day) for sure (it is great to start there and low crowd score (5) and a "good park!" The rest of the week depends on which parks you also want to go to, parades, etc.

I can make a planner for you...but it will be when I get back from Disney...as I am leaving in about 6 hours!!! But it should give you some guidance. I think the big question for now, to ask your kids and figure out, is which parks are going to be your "big ones" and which will be your half day ones.

I would see if you can get a list from each child of "must do attractions" and go from there, honestly.

Also...it would help me to know, in order of importance, which parades and fireworks are MUST see, too. For me it is: Wishes, SpectroMagic, Illuminations, the day parades and I didn't like Fantasmic. But each family is different on this! Some love Fantasmic and it is not showing as much anymore and sometimes a plan is worked around that, for instance.

Once I get back, I can help you sort of figure out which parks for full days and which for half day and then look at the hours, parades, etc and see if we can work out a sort of schedule that would fit everything you want to do in!

I know you are so excited about planning! And I hate I can't stop and do it right now. And I am sure I won't have time when I am in the World.

I posted some pictures on Jake's pre-trip thread of two wonderful gifts Jake and Hannah received yesterday from the Big Give.....I feel really bad cause I do not remember the name off the top of my head of the lady that made these and sent them to us as the box is at home.... But I just had to get my pictures up to share with you...

http://www.disboards.com/showthread.php?p=30368667#post30368667

I hate to ask, but I was wondering if you keep Jake in your thoughts and prayers over the next couple of days. He was admitted back into the hospital tonight with a g-tube infection, but a possiable line infection as well. A line infection would not be a good thing, so if you could please say a little pray that this fever and such is just from his g-tube and that it has not spread anywhere else such as his line.

I did post more on his CB site, there is a link at the bottom of my siggy if you would like to read. Thank you all so much...

We are definitely praying for Jake!!!!!! Get better, Jake!!

And please keep us updated, as you can. I will follow his blog, too!