Angel's Make a Wish DREAM Cruise/extended days at wdw 4/13-25 PTR :)

[Lilfoot93]

I hope you hear back soon! That would be great if she gets the cruise she wished for!

Jackie

 

[angel's momma]

Thanks Jackie

 

[NCConch]

Our son is being grated a wish from MAW. He is 12 and has Spina Bifida. He has had 24 surgeries but is otherwise healthy. We thought MAW was for really sick kids but found out it was also for kids and their families that have been through a lot. We originally contacted MAW this past summer when we wanted to get him backstage for the Big Time Rush concert that was coming. We found out it takes much longer than that and went to the show and more or less forgot about MAW. Well, they called recently and we met with them last week. One wish granted is a young professional without kids but the other is the mom of a kid that got a WDW wish trip and she was a big help with what to expect. Our son loves TV and still watches Nick and Disney Channel, so his first wish is to attend the Kids Choice Awards and his 2nd is to go to the taping of the Disney Christmas parade.

I hope Angel is feeling good and all her dreams come true.

 

[angel's momma]

Thank you Dave Glad your son will be getting a wish. Sorry it wasn't in time for him to go backstage at the Big Time Rush concert, but hope he gets to go to the Kids Choice Awards. Are you familiar with how the Christmas Parade is taped? If not, if you should do a DIS search, because some people don't find it as enjoyable as they thought it would be. Have you seen the Wish Trippers thread? - http://www.disboards.com/showthread.php?t=2807833



After weeks of searching both houses for Angel's birth certificate, we finally found it.

 

[angel's momma]

Angel returns to school tomorrow. All of the sickness going around has us very concerned. She's also very much feeling like a "new girl" - it's been 3 months since she was in school, and the short time that she attended when school began didn't go very well for her socially.

 

[angel's momma]

First day back to school didn't last long - there was a gas leak before school even began, so they sent all the kids to the gym while they decided what to do, and ended up sending them home about an hour later.

School is going well for Angel. It's a big physical adjustment though, and she's exhausted.

Tomorrow is clinic (haven't been there in close to a month). Hoping for improvement in her counts. She's very nervous because this is the first time having blood drawn since she had her line removed, and they had problems with the IV that day.

 

[blessedmom4]

Hijacking your thread Christi...

Our son is being grated a wish from MAW. He is 12 and has Spina Bifida. He has had 24 surgeries but is otherwise healthy. We thought MAW was for really sick kids but found out it was also for kids and their families that have been through a lot. We originally contacted MAW this past summer when we wanted to get him backstage for the Big Time Rush concert that was coming. We found out it takes much longer than that and went to the show and more or less forgot about MAW. Well, they called recently and we met with them last week. One wish granted is a young professional without kids but the other is the mom of a kid that got a WDW wish trip and she was a big help with what to expect. Our son loves TV and still watches Nick and Disney Channel, so his first wish is to attend the Kids Choice Awards and his 2nd is to go to the taping of the Disney Christmas parade.

I hope Angel is feeling good and all her dreams come true.

Actually, Make a Wish is for children with Life threatening conditions and I am jumping in here because we should be part of your chapter and there has recently been a huge stink about this and the chapter not granting wishes to Mito kids. I would love to know if your son's wish is approved and I am very sorry for all you have been through. It is chroniclaed over on the family's PTR. The Mom is Amber Greenawalt. Best of luck to you and your son on getting a wish.

First day back to school didn't last long - there was a gas leak before school even began, so they sent all the kids to the gym while they decided what to do, and ended up sending them home about an hour later.

School is going well for Angel. It's a big physical adjustment though, and she's exhausted.

Tomorrow is clinic (haven't been there in close to a month). Hoping for improvement in her counts. She's very nervous because this is the first time having blood drawn since she had her line removed, and they had problems with the IV that day.

Christi, I am truly sorry for all Angel continues to endure. It must feel like 2 steps forward and 20 back. I AM happy to read she is adjusting; however, I am positive she is exhausted. Is there any way for her to have a short rest/break in the middle of the day as she builds up her stamina or for her to start with half days?

Give her a hug from me, having labs drawn is never fun, no matter what the age. I just want you to have some peace!

YEA for finding the birth certificate!

Any more news on the cruise?

 

[NEmel]

Sorry to hear school is a challange I bet she will be doing great in no time. I totally understand the sickness going around. I reminded the boys to wash their hands a bunch!! I hope that the blood draw went good today!

 

[angel's momma]

Judy, you are welcome to hijack the thread any time The decision to not grant Savannah her wish was one of the first things I read when I found the wish trippers thread. Was so happy that they're getting some help from another source. Thank you always for your support. The Dr. said she could start with half days, but it was complicated with the way her classes are set up, so she really wanted to go back full time. We're hoping it will just take some more time to re-adjust. Haven't heard back from the wish coordinator - her 1 or 2 days has now been 9.


Thank you Melissa I hope your boys stay well.


Clinic brought good news, and disappointing news - her hemoglobin & platelets both increased, but her ANC dropped from 2130 to 840. Grateful the new Dr.'s criteria means she's not back on her many restrictions.

She had been told she could have her blood drawn through her finger, and that is normally correct, but one of her labs requires it be drawn in the arm. She had a lot of pain & bruising, but at least it went better than the IV attempt.

It was hard enough sending her to school knowing her immune system was still low but had improved significantly, but now it's dropped a lot & she doesn't have it checked again for a whole month. Angel came home today & said that 50 kids from her building were either out sick or went home sick today, as well as quite a few teachers. There's only around 200 students in that building. They were waiting for attendance reports from the lower grades, and were discussing possibly shutting down school next week.
Very grateful the school is taking precautions to keep Angel well (like letting her change desks, asking students to stay away from her if they're not feeling well) but I sure would like to just keep her at home.

 

[angel's momma]

Angel has been coughing all day.

Wish update: Today we got a form letter in the mail from the wish coordinator, with details of the 4 night Dream cruise. She could have at least called DH back, because he had some other questions for her if she said they couldn't grant Angel's specific wish. The form letter says that we can add days at wdw after the cruise at our own expense. DH is going to ask if we could pay the difference from the 4 night Dream to the 7 night Fantasy. It's a significant amount of money though, so I'm not sure how we'll do it, but it means so much to her so we're going to try our best.

 

[Lilfoot93]

I hope Angel feels better quickly!

Sorry they sent a letter instead of calling you saying you couldn't do the fantasy. Hopefully they will let you upgrade your cruise.

Jackie

 

[angel's momma]

Thanks Jackie

 

[NEmel]

So sorry that the cordinator couldn't get in touch with you in person. It amazes me how different each chapter is, ours won't let us extend. Hope Angel stays healthy and continues to get the swing of school back!

 

[angel's momma]

Thanks Melissa

I don't understand why it varies so much from chapter to chapter. We received a printed MAW Disney Cruise pamphlet, and our coordinator told us that it was National, but that's not accurate because it says the trip can be extended at our own expense. I'm so sorry that you don't have that option.



Irelandsmom - I finally had a chance to read the trip report - so glad she had a wonderful time Thanks again for sharing the link.



DH called the coordinator yesterday. He didn't mention getting the letter, just said he hadn't heard back from her. She said that she had called the wish granters, and they were supposed to have called us to tell us the Fantasy is not an option. Our initial meeting with the granters made me apprehensive about their lack of organization, and this doesn't help. DH asked the coordinator about us paying the differnce so Angel can go on the Fantasy, but the coordinator has never had a family ask that, so she said she'd call him back yesterday afternoon. As of now, he hasn't heard back from her. I know people get busy, or it may be taking her longer to find out the info, but it's also not the first time that she said she'd call back but never did.

 

[Lilfoot93]

I don't get why it varies either. We tried to extend but we were told no also. That is great you have the chance to extend if that is something you wanted to do. I hope you guys find out soon if you are able to pay the difference of the the other cruise. Since they are letting you extend I don't see why they wouldn't let you pay the difference of cruises.

Jackie

 

[blessedmom4]

Judy, you are welcome to hijack the thread any time The decision to not grant Savannah her wish was one of the first things I read when I found the wish trippers thread. Was so happy that they're getting some help from another source. Thank you always for your support. The Dr. said she could start with half days, but it was complicated with the way her classes are set up, so she really wanted to go back full time. We're hoping it will just take some more time to re-adjust. Haven't heard back from the wish coordinator - her 1 or 2 days has now been 9.
I pray things are going as well as hoped for. Sorry I have ben MIA, I know you know why.
Clinic brought good news, and disappointing news - her hemoglobin & platelets both increased, but her ANC dropped from 2130 to 840. Grateful the new Dr.'s criteria means she's not back on her many restrictions.
I hate when the labs bounce all over the place, super sorry for the poke!
She had been told she could have her blood drawn through her finger, and that is normally correct, but one of her labs requires it be drawn in the arm. She had a lot of pain & bruising, but at least it went better than the IV attempt.

It was hard enough sending her to school knowing her immune system was still low but had improved significantly, but now it's dropped a lot & she doesn't have it checked again for a whole month. Angel came home today & said that 50 kids from her building were either out sick or went home sick today, as well as quite a few teachers. There's only around 200 students in that building. They were waiting for attendance reports from the lower grades, and were discussing possibly shutting down school next week.
Very grateful the school is taking precautions to keep Angel well (like letting her change desks, asking students to stay away from her if they're not feeling well) but I sure would like to just keep her at home.

Homeschooling is a gift! The germs are why Lisa is home.

Angel has been coughing all day.
Praying she is better soon!
Wish update: Today we got a form letter in the mail from the wish coordinator, with details of the 4 night Dream cruise. She could have at least called DH back, because he had some other questions for her if she said they couldn't grant Angel's specific wish. The form letter says that we can add days at wdw after the cruise at our own expense. DH is going to ask if we could pay the difference from the 4 night Dream to the 7 night Fantasy. It's a significant amount of money though, so I'm not sure how we'll do it, but it means so much to her so we're going to try our best.

Thanks Melissa

I don't understand why it varies so much from chapter to chapter. We received a printed MAW Disney Cruise pamphlet, and our coordinator told us that it was National, but that's not accurate because it says the trip can be extended at our own expense. I'm so sorry that you don't have that option.



Irelandsmom - I fianlly had a chance to read the trip report - so glad she had a wonderful time Thanks again for sharing the link.



DH called the coordinator yesterday. He didn't mention getting the letter, just said he hadn't heard back from her. She said that she had called the wish granters, and they were supposed to have called us to tell us the Fantasy is not an option. Our initial meeting with the granters made me apprehensive about their lack of organization, and this doesn't help. DH asked the coordinator about us paying the differnce so Angel can go on the Fantasy, but the coordinator has never had a family ask that, so she said she'd call him back yesterday afternoon. As of now, he hasn't heard back from her. I know people get busy, or it may be taking her longer to find out the info, but it's also not the first time that she said she'd call back but never did.

OK, hijacking again....On the MAW front: Just going to say I have said from the beginning of this journey I wish there was some uniformity in how MAW administers things. I have known quite a few folks whose children don't meet the criteria of our chapter, or who can't extend trips, or ______fill in the blank. Some wish granters are spectacular, some gifts are out of this world, some reveal s are amazing (that was the one we got and Lisa loved it), some sendoff parties are phenomenal....but EVERY TRIP is just what it should be in the end...(except for one that I know of and that played out a few months ago on the wishtrippers thread too...absolutely heartbreaking). I WANT Angel to have her wish; however, if the cruise isn't to be on the Fantasy, I KNOW you will make the entire trip special!!!

 

[OhanaDreams]

Thanks Melissa

DH called the coordinator yesterday. He didn't mention getting the letter, just said he hadn't heard back from her. She said that she had called the wish granters, and they were supposed to have called us to tell us the Fantasy is not an option. Our initial meeting with the granters made me apprehensive about their lack of organization, and this doesn't help. DH asked the coordinator about us paying the differnce so Angel can go on the Fantasy, but the coordinator has never had a family ask that, so she said she'd call him back yesterday afternoon. As of now, he hasn't heard back from her. I know people get busy, or it may be taking her longer to find out the info, but it's also not the first time that she said she'd call back but never did.

I hope you hear good news soon.

 

[angel's momma]

Thanks Jackie Sorry you don't have the option of extending.

Thank you Amy.

Judy - I'm always amazed you have time for DIS at all. Thank you always for your prayers & support. After the mess we went through with school last semester, I was definitely considering homeschool, but Angel really wanted to stay in public school, so I hope we made the right decision. I read about the family you are referring to, and it is absolutely heartbreaking. I'm not even expecting a reveal, send off, etc. - at this point I am just hoping that the wish granters take care of what they need to do.


We're not allowed to pay the difference for the Fantasy because "if they allowed us to, they'd have to allow everyone else to also." Even if "everyone" did decide to pay the difference, how would that create a problem for MAW?

A boy we see at clinic just came back from a Disney Cruise, and his mom posted a few things about the trip on his caring bridge. Every MAW cruise trip report we've read here has had a lot of the same details, so we thought we had a pretty good idea of what to expect, like flying in the night before & staying at the Hyatt, and being able to get to port & on the ship pretty early. This family didn't do that though, they had 4 hour trip to the airport, even though there's 3 other airports less than 60 miles from their home, they stayed overnight near the airport, and then flew down the day of the cruise. Like Cassondra, they had lugagge that didn't arrive with them.

Did some pricing on possibly adding on days at wdw, because we haven't been there since 5/2010, and it's highly unlikely we'll be able to afford a trip on our own in the next few years. Wow, prices have gone up a lot. Doesn't help that we're used to going in value season with free dining. Still trying to figure out what we should do, and also waiting to find out if there's criteria for how many days we can add on.

School is getting out earlier than usual this year. With the timing of the school band concert and finals, it's not working out to go in May after all, unless it's the very last week. If we do that, and add wdw days, that puts us into a busier, more expensive week at wdw. Looking into possibly going in April instead.

I wrongly assumed the details of the cruise was all handled by MAW, like booking the excursion, check in, etc. Now that I know that I have to take care of some things, I need to figure out how to do it so I'm ready when the time comes.

 

[Lilfoot93]

Sorry to hear you can't pay the difference for the cruise. I don't understand the differences between chapters either. Our chapter said kinda the same thing about extending. If they let us do it they would have to let everyone do it. If someone got talking and found out we got to extend and they didn't then it wouldn't be fair to those who could not afford to do it. Not saying we could afford a trip to Disney World ourselves but adding a couple days hotel isn't so bad when everything else has been taken care of!

I too thought some of the planning would be by MAW for Disney also but glad I asked because even though Star Wars Weekend and being a Jedi and fighting Darth Vader was Trev's wish we may have to take care of all that ourselves! Still waiting to hear details on that.

That would be great if you guys could find a way to extend. Hope you get the dates you want!

Jackie

 

[angel's momma]

Jackie, I hope they're able to help you arrange for Trev to fight Darth Vader.



We spent some time last night looking at the excursions, and Angel would like to do the Sea Lion encounter at Blue Lagoon. It's limited to only 2 sessions of 10 people though, so it may be full.