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

[5dwarves]

Hi everyone!
So glad that I found you! I've spent the last few nights (staying up all hours) Googling "Disney World Make A Wish Trips", and that's how I found this forum. I have to be honest my eyes are tired from trying to read all the great trip reports and advice. I am the type of person who really needs to prepare and wants to do as much research as possible...So I need some HELP, please!!
First, I should introduce my family: there is our beautiful wish child Azaria (her name is pronounced like the word area with an Az in front of it). She is 6 years old and was diagnosed with Aicardi Syndrome at birth. (Aicardi Syndrome consists of daily seizures, the absence of the center part of the brain, retinal lesions that cause blindness, and developmental delays). She does not speak, but tries to communicate in her own way. She is unable to sit unassisted and is unable to stand or walk. We were told her life expectancy is 5-10 years. Azaria has about 8-12 seizures a day, and about once a month she requires medical intervention to stop them. BUT she is doing extremely well, given all that. She is a very happy and precious child!

Our son Aidan is 4 and will turn 5 on the trip, May 12! He is such a sweet little guy and loves his "sissy" so much. He tries to care for her during her seizures, saying "it's ok sissy" while holding her hand or stroking her head. Aidan has a very severe peanut allergy, we almost lost him when he was 2, due to an exposure to peanut butter. We are very careful with Aidan and carry epinephrine with us at all times.

We also have an older son, Christopher, he just turned 21. He lives near San Francisco but comes home often. Christopher is really the only person who helps us care for the kids, he is our only respite. And the kids adore their big brother.

Then there is me and my husband. I'm Debi, and my husband is TJ, we live in Central California. We have annual passes to Disneyland and visit often, especially when we take Azaria to UCLA.

That's us, now where to begin??? Azaria's wish was granted in June of last year. We've been trying to take this trip since then but could never seem to work out the dates. So I called MAW in January and gave dates that we would be available to go in February or March. Never heard back so I called back a couple of weeks ago and our wish rep was so sorry she never got back to us. I guess she kind of dropped the ball. No problem though, we gave her new dates for May and she set it up the next day.

We leave Thursday May 7th on American Airlines at 7:00am. We connect in Dallas to Orlando, arriving at 7:10pm. Initially we were to fly home on the 13th but I asked if we could extend our stay at our own expense, so now we are leaving on Sunday, May 18 at 4:40pm, arriving home at 9:40pm.
(I haven't planned what we will do or where we will stay those extra days but thought the extra time would help us not feel so rushed.)

I would really like some help planning a day to day itinerary. I could really use some help here, my computer research time is only at night when I can barely even think clearly, and Disney World seems so foreign to me.

Things Azaria would like: character meet & greets, "kiddie rides", shows, and she loves animals, specifically dolphins! I thought a visit to Animal Kingdom would be in order, if tickets are available for that park. Seaworld would also be a must. As a family, we just love to hang out together, enjoy shows, we think Azaria would love the Cirque du Soliel show La Nouba, and any other shows. She loves lights and interaction with characters, parades, fireworks.

We will be there on Aidan's birthday, on the 12th he will be 5. We want to do something so that he feels special on his birthday, so we were thinking of taking him to the Kennedy Space Center since he loves spaceships and astronauts. Are tickets given to the space center? I just read online that on May 12th, they are launching Space Shuttle Atlantis. This is something I need to look into more to see if we could view the launch from the beach or somewhere nearby.

Well I should really get some sleep because I am starting to ramble and this is getting really long! I know I will have lots of questions and will begin writing my lists, schedules and plans tomorrow. Again, any help/input would be great.

One last thing, unfortunately MAW is not paying for our son Christopher to come with us, I'm disappointed although I understand. If there are any suggestions on getting his flight or Disney tickets cheap, PLEASE let me know. His one way ticket there on our flight is $300 right now. He is flying back early on the 14th and I can get that ticket for about $100, but with adding the tickets to the parks, it is going to be expensive and we just don't know how we are going to pay for it. I was told he can stay with us at GKTW but don't know what is included with that? Food? Possibly tickets too?

Thank you so much! I look forward to getting to know you all. I feel like I know some of you already since I've been reading your posts and trip reports!

Thanks again, and sorry this first post is so long!

Blessings,
Debi

Debi:

Glad you found us. Welcome to the Dis. A couple of things right off...once you get your schedule planned, call disney dining and speak with them about your son's food allergies. They will prepare special meals for him if they know where you are going to be. If you go to the first page of this thread there was a trip in 2007 by a woman who had several children with multiple food allergies. She did a lot of preplanning for meals both at the parks and at GKTW (who will also need to know about the allergies).

You will also want to talk to GKTW about your adult son. If MAW has him on the list as a guest with GKTW his "benefits" may vary depending on what MAW has told GKTW. I think your best point of reference there will be with GKTW. Tell them what MAW said about him being able to stay with you and ask about tickets and meals. It may be that the only thing you will have to take care of is the air fare. Does he have to fly on the same flight as all of you? If not, then check out the various travel sites (price line, travelocity, orbitz) and also check out Southwest Airlines. They don't participate in any of those other sites and are usually fairly inexpensive.

~Elisa

 

[5dwarves]

Oh gosh...we made Google!

You are so funny. I just looked at Google and YOUR wish trip with Lauren was the 6th listing on google. It is also the first one for the Disboards in the list.

 

[maroo]

You are so funny. I just looked at Google and YOUR wish trip with Lauren was the 6th listing on google. It is also the first one for the Disboards in the list.

No way...


oh my gosh.

 

[WishMom09]

Praying for sweet Noah and his family!

Welcome all the new wish trippers!

 

[keetmommy]

Hi everyone, I'm Nicole and i'm new to this site and i'm still trying to get the hang of so please bear with me. I have posted this once before on a different thread but i forgot where. So here it is again. I'll start with how everything started.

First off I'm a 27yr old separated mom of 3. My kids are Jazmine, 7, Elise, 4, and Elijah, who is 3. Elise is my little miracle. She has been so strong through it all. Let's see.... last year on Wed. May 7th is when Elise first got sick. She was vomiting a lot so I took her to her doctor. They said it was just a stomach virus, she had no fever or any other symptoms and that it will pass in 3-4 days. So I took her home. By Friday she couldn't keep anything down not even water so i took her to the ER. They gave her an IV to hydrate her, did bloodwork, tested for infections, and did x-rays of her stomach. 5 hrs later everything came back normal so they gave her zofran and some sent her home. Saturday she was even worse, now she was just dry heaving all day long so i took her back to ER. They did the same things as before plus an ultrasound of her intestines. Still nothing. We went home again. She is still vomiting, and I don't mean like 1-2 time a day, no now it was 6-7 times a day. Everytime she drank or ate anything she would throw up 5- 15 mins later. On Sunday she slept almost all day long. I would wake her up to try and drink or eat popsicles. Still vomiting.

By then I had no idea what to do. I just let her sleep. Monday morning I got woke her up early to take her back to the ER, before i could even get her dressed she started vomiting up nasty, foul smelling green stuff. When she tired to walk she had no balance and kept falling. I called her father to come take the other kids to school and daycare, then I took her back to the ER. I was not leaving until they found out what was really wrong. So they did a CT and my world crumbled. They told she had several tumors in her brain and a few on her spine. She had never been sick in the whole 3 yrs she'd been alive, only a cold maybe twice a yr. I thought they were dumb and made them get several different doctors. They all said the same thing. So they transferred us to Children's Hospital in DC. She was immediately put in icu. By Wed. she was having seizures. They said that the largest tumors were blocking her spinal fluid from draining which was causing pressure on her brain. That's what was causing all her symptoms. They put a drain (a shunt that's on the outside) in her head. A couple days later they took the drain out, did a biopsy, and put in a permanant shunt. She was diagnosed with Primitive neuroectodermal tumors (PNET). I was going crazy with worry and stress. Everything was happening so fast. I still couldn't get a grip on anything. When she came out of surgery she was worse. Now she couldn't even move her legs or sit up without help. Now i'm like Lord what did they do to my baby! They did another MRI and said it was caused from all the pressure and that she regain her mobility back in time.

Next they put in a double lumen broviac so she could start her chemo. Now that was just terrible. She had 6 rounds of high dose chemo with stem cell replacement. She had terrible side effects. On the night of her 1st day of chemo she got really sick, she became non-responsive to everything, and her eyes rolled around in her head, you know i was in a panic. they rushed her to icu again and gave her some meds. They added triple the amount of sodium to her fluids from then on. Throughout her chemo she had mouth sores, hair loss, nausea and vomiting, and severe diarrhea, she wouldn't eat, infections, headaches, pain.... It was really bad. They put in a feeding tube plus she would get blood and platelets every week, sometimes twice a week. It was horrible. She was also extremely tired and wanted to sleep all the time, which was hard because she had PT and OT each 2x a day. We spent the entire 6 months in the hospital. But through it all she was as sweet as can be, and when she was up to it she fell in love with painting. I also tried to get her to play anything that i thought would make her happy. She always tired to perk up when the family came over. She was and is still a strong child.

She had about a 3wk break after chemo before her radiation. By that time we got her walking again and she was even running a little and her feeding tube was now gone. Her balance was almost completely back too. Next was radiation, Mon-Fri. for 2 1/2 months. Her radiation went smoothly, her side effects was mild. She just ended her mandatory 3 mth break and has recovered almost fully from everything. She still has a few small tumors left and just started a low dose oral chemo regiment (she gets to be home this time that she will be on for the next 6 months. She has been blessed to have made it this far!!! The doctors told us in the beginning that she would have a 5% chance of beating this cancer. But I thank the Lord because she is here and doing good!!!

MAW has granted her wish to see Cinderella. We are going to WDW in May and will be staying at GKTW. We are all excited. It is a well needed vacation for all of us. I do have a question. My kids and I live with my parents plus my 12 yr old nephew. MAW is paying for me and my 3 kids, and since i'm a single mother they are also paying for my mother to go too. I have been looking for a vacation package that is the same that GKTW gives that is affordable for my dad and nephew so that they can enjoy everything that we get to. So i haven't any luck. Does anybody have any suggestions? Thanks

Also i'm trying to start planning an itinerary for the trip but i have no idea where to start. I have read some great tips from the posts and know some of the things i want to put on it. Any thoughts on what to do 1st and what days are better to do certain things? We arrive at MCO at 10:20am on Tues. May 5, 2009 and we depart at 2:55pm on Monday May 11, 2009. Any suggestions would be greatly appreciated.

Sorry this is so long. But I always tell everything so people can know just how far Elise has made it with God's help. I will try and load some pics of the family. Thank you to everyone who reads about Elise's journey and to everyone in advance who replys to this post, and to anyone who already has.

Welcome Nichole, I am sorry to hear everything you have been through with your little girl, (I have to say I figured from the first that you mentioned the vomiting, that it was hydrocephalus, sad part of being part of the Brain tumor world ) I hope you have a wonderful trip and welcome to the thread!!!

 

[5dwarves]

No way...


oh my gosh.

Yes way.

 

[Corrine 1973]

GREAT NEWS!!!!!

Liam's Doctor has officially cleared him for his trip.

Unfortunatly the days in July and August that I suggested were already booked up so that will be a no go. I just emailed Iris that any time in September would be good. Looking more at the second or third week so Liam can get a nice introduction into 1st grade. I didn't want him missing a week of school since we will probably miss lots more with Dr appts and illness but sometimes you need to put your families happiness above school. I am sure he will be able to make it up especially so close to the beginning.

So any way, I should have some real dates real soon.

 

[queengonzo]

to ask some questions....i have not been able to be online too much because my router went KAPUT so i have to go buy a new one and am currently on an unsecure network from probably a motel close by our home!! so, i am usually, on and then off just a quick one to check our emails and such!!

well, really quick, i want to say WELCOME to all the new families that have found there way here....i am also new and found this a bit late because we are going to be going IN ONE WEEK!!! YIKES!!! anyway, i know you well get so much support here as i have!! i still am NO WAY NEAR ready for our trip but we are working on it!!

some good news to tell......WE WERE ABLE TO GET OUR FLIGHT SWITCH FROM 12PM (and get in at 7:30pm) TO 7AM (and get there at 1:30pm)!!!! what a MAJOR difference that will make for our family!! i was afraid with all the airtime and drama matthew would have a low threshold for a SZ and i was so afraid that that would happen....anyway, they were able to switch it THANK YOU GOD!!

ok, onto questions (i shoudl warn you some are SILLY questions!):
1. do we have to bring our own towels?
2. is there a fishing place there at the park for bass fishing??
3. on the PLANE, can we take shampoo and such in our luggage? i heard we could not??? haven't been on one in FOREVER!
4. what do we need to take FOR the GKTW? is there something we should take for our rooms??
5. can we take a PULSE OXIMETER MONITOR on the plane??
6. is there swimming at GKTW? is it still to cold for that?


ok, right this sec, that is all i can think of!!

thanks in advance for any ideas or answers!! thanks and sorry i have to RRRUUUUNNNNN!!!

 

[chcmama]

GREAT NEWS!!!!!

Liam's Doctor has officially cleared him for his trip.

Unfortunatly the days in July and August that I suggested were already booked up so that will be a no go. I just emailed Iris that any time in September would be good. Looking more at the second or third week so Liam can get a nice introduction into 1st grade. I didn't want him missing a week of school since we will probably miss lots more with Dr appts and illness but sometimes you need to put your families happiness above school. I am sure he will be able to make it up especially so close to the beginning.

So any way, I should have some real dates real soon.

Yay, that is exciting. We have taken our kids out of school here and there and it hasn't mattered too much. My dd will be missing a week of school for her wish trip in May.
That is great that Liam hasn't been that sick that he wasn't diagnosed until he was 6. It is great that he has gotten diagnosed so that they can start treating him though. I knew nothing about CF until the dr.s suggested that my dd might have it, it was all pretty overwhelming at the time.

to ask some questions....i have not been able to be online too much because my router went KAPUT so i have to go buy a new one and am currently on an unsecure network from probably a motel close by our home!! so, i am usually, on and then off just a quick one to check our emails and such!!

well, really quick, i want to say WELCOME to all the new families that have found there way here....i am also new and found this a bit late because we are going to be going IN ONE WEEK!!! YIKES!!! anyway, i know you well get so much support here as i have!! i still am NO WAY NEAR ready for our trip but we are working on it!!

some good news to tell......WE WERE ABLE TO GET OUR FLIGHT SWITCH FROM 12PM (and get in at 7:30pm) TO 7AM (and get there at 1:30pm)!!!! what a MAJOR difference that will make for our family!! i was afraid with all the airtime and drama matthew would have a low threshold for a SZ and i was so afraid that that would happen....anyway, they were able to switch it THANK YOU GOD!!

ok, onto questions (i shoudl warn you some are SILLY questions!):
1. do we have to bring our own towels?
2. is there a fishing place there at the park for bass fishing??
3. on the PLANE, can we take shampoo and such in our luggage? i heard we could not??? haven't been on one in FOREVER!
4. what do we need to take FOR the GKTW? is there something we should take for our rooms??
5. can we take a PULSE OXIMETER MONITOR on the plane??
6. is there swimming at GKTW? is it still to cold for that?


ok, right this sec, that is all i can think of!!

thanks in advance for any ideas or answers!! thanks and sorry i have to RRRUUUUNNNNN!!!

I can only answer one or your questions but I am sure that someone will come along to answer the rest. You can take shampoo and such in your luggage, it is your carryon that you have to be careful about. You can only take liquid in 3 oz containers or smaller and all the containers have to fit in a quart sized ziploc bag, if you want to take them in your carryon. In your luggage you can take full sized bottles and it doesn't matter.

Your trip is gettingn close

 

[dmbfan]

I remember you posting the first time, because I remember the part about your Dad and your nephew. I found you on page 80 of this thread, and I wrote something short back on page 81. MAW may not be paying your dad and nephew's way, but they still may be able to stay at GKTW with you. Call GKTW tell them that you live with them and ask if they can stay with you in the villa. The villa can sleep 7 (we did it). There is a master bedroom (king size bed) a kids' room (two twins) a queen sized fold out sofa, a twin bed roll away and a crib. GKTW may ask MAW to verify that they are "residents". I don't know about the ticket packages though. I don't think MAW pays for those, I think the parks donate them...GKTW may be able to help you, but if not, try mousesavers.com and allears.net for advice on good places to buy inexpensive tickets.

I just wanted to go of on what Elisa posted above about your father and nephew. My sister and my oldest son ( who now lives with his mom) were able to come on Jake's trip, stay with us at GKTW, eat their meals free their and get all the same things we got, as far as getting right on the rides and so on. Let your MAW chapter now that your father and nephew will be paying their own ( our MAW even got my sister ticket when they got ours, we just gave them our credit card to pay for hers, my son was coming from CA, we did that ourselves) but you would like them to stay with you at the Villa. I think MAW told me that you can have up to 7 people in the villa at once.

If you have any questions with that, please feel free to PM as we just went thru this and I was sooo nervous about it all, and it worked out just fine...

Oh and we got the park tickets, a 4 day hopper pass, a 7 day US/IA pass and a one day Sea World pass thru AAA for a total of $431.00 a person.

 

[dmbfan]

GREAT NEWS!!!!!

Liam's Doctor has officially cleared him for his trip.

Unfortunatly the days in July and August that I suggested were already booked up so that will be a no go. I just emailed Iris that any time in September would be good. Looking more at the second or third week so Liam can get a nice introduction into 1st grade. I didn't want him missing a week of school since we will probably miss lots more with Dr appts and illness but sometimes you need to put your families happiness above school. I am sure he will be able to make it up especially so close to the beginning.

So any way, I should have some real dates real soon.

Yeah, that is wonderful. Sept of Oct they say is a good time to go, cause July and Aug, the heat and humidity is just down right awful...we went twice in July and it was HOT, like soon as you walked out of AC you were dripping wet hot. And if you have a child with heat intolerance issues, it is not a good time to go.

Can't wait to hear about the dates....

 

[dmbfan]

ok, onto questions (i shoudl warn you some are SILLY questions!):
1. do we have to bring our own towels? Nope, but you are in charge of washing the towels during the week in your washer in your villa, meaning they do not bring new ones every day.
2. is there a fishing place there at the park for bass fishing?? Not that I saw...but you can always call and ask...wait...now after thinking about it, I did see kids bringing back fishing poles to Amberville...so maybe.

3. on the PLANE, can we take shampoo and such in our luggage? i heard we could not??? haven't been on one in FOREVER! We did not, we went to the walmart when we got their and picked that stuff up. However, on the way home, my husband packed what we did not use, such as soaps and shampoos, but make sure they are in plastic bags, so nothing explodes on your clothes, and do not take them as a carry on. Less hassel.

4. what do we need to take FOR the GKTW? is there something we should take for our rooms?? Nope...they have everything you need...

5. can we take a PULSE OXIMETER MONITOR on the plane?? I do not see why not. Jake had his TPN pump going and I also had a carry on of medical supplies and other pumps, needles and meds...no one every asked for the Drs notes that I had. I think when you need to take an oxygen tank with you, that is when you need certain clearance.
6. is there swimming at GKTW? is it still to cold for that? Their is a ONE swimming pool their and it is heated. Of course the week we were their it was 90 all week, but we never got a chance to make it back for a swim. If your not going to be late at the parks, than you can swim until 9pm.


You are going to have such worry free time at GKTW...really...

 

[MamaGist]

Thank you.

Does your child have brain tumors too?

this was in response to Keetmommy.

 

[keetmommy]

Thank you.

Does your child have brain tumors too?

this was in response to Keetmommy.

Yes Emma has a genetic disorder called NF1, this has caused her to have an Optic Chiasm/hypothalamic Glioma, which caused her hydrocephalus, she also had a tumor in her Temporal lobe that had to be resected twice, now she has several bright spots that could just be something people with NF get or they could be new tumors...time shall tell because they are low grade tumors and grow slowly,
Emma finished a year of Chemo, she actually should be having her last chemo this week but she developed an allergy to her Carboplatin and we had to stop.
We about a month of our 3 month MRI so I am developing my PMS (pre-MRI syndrome...) I am sure you all understand that fear in your gut...

 

[MamaGist]

I just wanted to go of on what Elisa posted above about your father and nephew. My sister and my oldest son ( who now lives with his mom) were able to come on Jake's trip, stay with us at GKTW, eat their meals free their and get all the same things we got, as far as getting right on the rides and so on. Let your MAW chapter now that your father and nephew will be paying their own ( our MAW even got my sister ticket when they got ours, we just gave them our credit card to pay for hers, my son was coming from CA, we did that ourselves) but you would like them to stay with you at the Villa. I think MAW told me that you can have up to 7 people in the villa at once.

If you have any questions with that, please feel free to PM as we just went thru this and I was sooo nervous about it all, and it worked out just fine...

Oh and we got the park tickets, a 4 day hopper pass, a 7 day US/IA pass and a one day Sea World pass thru AAA for a total of $431.00 a person.

Thank you for the tips. I will call MAW in the morn to see if they can stay at GKTW with us. That will help a lot.

 

[MamaGist]

Yes Emma has a genetic disorder called NF1, this has caused her to have an Optic Chiasm/hypothalamic Glioma, which caused her hydrocephalus, she also had a tumor in her Temporal lobe that had to be resected twice, now she has several bright spots that could just be something people with NF get or they could be new tumors...time shall tell because they are low grade tumors and grow slowly,
Emma finished a year of Chemo, she actually should be having her last chemo this week but she developed an allergy to her Carboplatin and we had to stop.
We about a month of our 3 month MRI so I am developing my PMS (pre-MRI syndrome...) I am sure you all understand that fear in your gut...

I'm sorry to hear that she is sick. It sounds like Emma is a trooper though. and yes I still feel the same way about the MRIs. Elise get one every month. Her tumors are fast growing. Does Emma have to stay in the hosp. during her chemo? Elise did during the 1st session but know she is taking it orally.

 

[keetmommy]

I'm sorry to hear that she is sick. It sounds like Emma is a trooper though. and yes I still feel the same way about the MRIs. Elise get one every month. Her tumors are fast growing. Does Emma have to stay in the hosp. during her chemo? Elise did during the 1st session but know she is taking it orally.

To be honest with you most people don't realize Emma's issues, she actually is legally blind from the tumors. Her Chemo was all done out patient, so that was good, but our hospital is 2 hours away so we did a lot of driving. Does Elise have a web site?? Emmas is carepages.com/Emmafaye if anyone is interested...

 

[MamaGist]

Of course you have to do a character lunch!!!!



Wow!! Another trip!!! Congrats!!!

Do you guys want them to stay on Disney property or off property?

I would suggest just a simple hotel close to GKTW, if they are ok with that. Then you can get discounted tickets from one of the discount ticket places...

is one place you can get discounted tickets. Let them know this is a Make a Wish trip and hopefully they can give you the very best deal they can find. I have never used this site, but it is advertised often on a podcast that I listen to a lot.

Then you can buy "bunny bucks" when you get there and they can eat meals with you. They are $1 per meal. Very cheap!! It is possible they will let them eat free with you, but I am not sure how that works and it changes often!

Hi, thank you for all your help. I got your messages. I will send you a reply later tonight when i have more time to really sit down and get everything together. Oh where do i ask for the bunny bucks?

 

[MamaGist]

To be honest with you most people don't realize Emma's issues, she actually is legally blind from the tumors. Her Chemo was all done out patient, so that was good, but our hospital is 2 hours away so we did a lot of driving. Does Elise have a web site?? Emmas is carepages.com/Emmafaye if anyone is interested...

I will keep your family in my prayers.

Was/is Emma on chemo for the entire year? If so i'm so sorry. It is really hard when you have a child that's sick. We as moms have to make sure that they are getting all the help they need and then some to get them well again, plus try and give the other children everything you normally did before the illness.

How old is Emma? Elise just turned 4 in Feb. No I have not set up a site for her. I'm so use to calling people to update them on what's happening with Elise. I do have pics of the family on my facebook page. I will try and post a link for it in a min. I will check out Emma's site.

 

[keetmommy]

I will keep your family in my prayers.

Was/is Emma on chemo for the entire year? If so i'm so sorry. It is really hard when you have a child that's sick. We as moms have to make sure that they are getting all the help they need and then some to get them well again, plus try and give the other children everything you normally did before the illness.

How old is Emma? Elise just turned 4 in Feb. No I have not set up a site for her. I'm so use to calling people to update them on what's happening with Elise. I do have pics of the family on my facebook page. I will try and post a link for it in a min. I will check out Emma's site.

Emma just turned 7, I will PM you my name and you can add me to facebook...
yah we did a year of chemo, we found the tumors in June 07, by Feb 08 we had gone through 7 brain surgeries...she had LOTS of issues with her VP shunt...