Adult with cancer?

[mirthmaiden]

I wasn't sure where to post this question so I'll start here. My DH is terminally ill with cancer. We are planning a trip to WDW in August, based of course on his ability to travel. My question: This is likely going to be our last family vacation together. All our children are going. It's going to be a very special and emotional time. Are there any *special* sort of arrangements I can make with Disney to give him extra love and attention from cast members? I hope nobody flames me for this. I realize that everybody has something special going on, and I certainly don't mean to imply that we are better or more deserving. It's just that I know there are programs in place for kids who are suffering from cancer and such, but nothing for adults that I know of. Any ideas out there?

 

[Cheshire Figment]

First of all, to the disABILITIES! Forum.

Someone else may be able to give information about wish-granting organizations that will work with adults. When Judy was diagnosed with cancer we had both been retired and moved down here less than six months previously.

The first suggestion I have is to make sure that he uses either a wheelchair or, if he is able to drive it, an ECV.

If he has invisible needs, such as being out of the sun due to chemotherapy (check with the doctor) or vision problems and needs to sit up close at a show (since most wheelchair seating is at the back), obtain a Guest Assistance Card at the Guest Relations Office of the first park you go to. (See the "disABILITIES! FAQ" which is the first sticky at the index for more about the GAC.)

If you will be staying on property I would suggest investing in a deluxe hotel for several reasons. One is that for some of them you do not have to go outside to get to a restaurant. Another is if there is a need you can get meals sent using room service. Also, they tend to have better park transportation available.

If he does get worn out and needs to rest, you can take him to First Aid at any park and they can give him a place to lie down for a while.

 

[mirthmaiden]

First of all, to the disABILITIES! Forum.

Someone else may be able to give information about wish-granting organizations that will work with adults. When Judy was diagnosed with cancer we had both been retired and moved down here less than six months previously.

The first suggestion I have is to make sure that he uses either a wheelchair or, if he is able to drive it, an ECV. Yes, we are bringing his wheelchair. I haven't decided on the ECV yet. I'm sure it would help, but I also wonder how much it will impact getting around. We don't have an accessible vehicle of our own. Right now he only uses his wheelchair at work when he gets tired, so we don't have a lot of experience in actually moving around with one. I'll have to do more research on that.

If he has invisible needs, such as being out of the sun due to chemotherapy (check with the doctor) or vision problems and needs to sit up close at a show (since most wheelchair seating is at the back), obtain a Guest Assistance Card at the Guest Relations Office of the first park you go to. (See the "disABILITIES! FAQ" which is the first sticky at the index for more about the GAC.) I'm sure he will need a GAC. I think I read that he doesn't need a doctor's note to get it, but we'll probably feel more comfortable having a note. He does have invisible needs.

If you will be staying on property I would suggest investing in a deluxe hotel for several reasons. One is that for some of them you do not have to go outside to get to a restaurant. Another is if there is a need you can get meals sent using room service. Also, they tend to have better park transportation available. Unfortunately, with 6 people in the family, it just isn't an option. We are staying at POP and even that is pushing the financial limits a lot. I did opt for a preferred room location to minimize the distance to/from the food court, etc.

If he does get worn out and needs to rest, you can take him to First Aid at any park and they can give him a place to lie down for a while. Thanks for the info. That is one of the main reasons we decided to stay on property. If he needs to go back to the room, we can separate from the kids and still have transportation. I'm sure he will be very limited on how much he can do in a day. I really appreciate your help

 

[dclfun]

Unfortunately there is nothing special that WDW will do for adults, including not giving a front of line pass as they do for terminally ill and "life threatening" conditions for children. They also changed their policy to give these passes to children only on a wish trip, and not returning children who are able to come back again, for whatever reason. The initiatives changed to support only organizations who work for children's causes ( not just the wish programs but others as well ). That said, you should still be able to get a GAC to allow alternate entrance, and if he is using a w/c he should be able to use those entrances without a GAC. CM's do not wish to read a letter as a diagnosis, etc. doesn't help them figure out what a person would need in order to enjoy their vacation. Your husband shouldn't hesitate to ask for what he needs. While he won't be able to bypass lines, he should be able to either wait in an alternate line, wait out of the sun, etc. The GAC should accomodate your party of 6 to stay together. I truly wish there was a national organization to support terminally ill adults who would also have a wish to make a memory with their children. These children suffer greatly- emotionally and financially, and they really need the respite that a special trip could give them. The ill parent, of course, could also benefit greatly from such a trip. Perhaps your community, church, or workplace could assist with fundraisers to help your family realize this vacation.---Kathy

 

[mirthmaiden]

I truly wish there was a national organization to support terminally ill adults who would also have a wish to make a memory with their children. These children suffer greatly- emotionally and financially, and they really need the respite that a special trip could give them. The ill parent, of course, could also benefit greatly from such a trip. Perhaps your community, church, or workplace could assist with fundraisers to help your family realize this vacation.---Kathy

Thanks so much for your advice. I agree that there should be such an organization, especially geared toward adults who have young children. DH is only 48 yrs old and we have been living with this diagnosis for 5 years now. Just in the past year he has been going downhill fast and, although our kids don't talk about it much, I know it is just as devastating for them to watch their dad waste away as it is for me I beat myself up a lot for spending time planning this trip as if there isn't a thing in the world that's wrong, but this is my escape. When I think of all of us at WDW having fun, I can pretend that everything is alright. <-- me in my tinted glasses!

Thanks for listening

 

[dclfun]

Is there anything special you wanted to plan? Perhaps someone here can think of suggestions if we know more what you might like to do. My husband died in 2001 and watching my children suffer was horrible. We lost his income, lost our home, and my children thus lost all their security as well as their precious father. Meanwhile I was also diagnosed with a terminal illness (ALS) but I have been doing well, albeit living on a ventilator and feeding pump. While I don't want to take away from children who receive a wish and deserve it, there are several families I know of who have received a wish recently and I have to wonder how they qualified. One child, age 12 has mild, infrequent asthma and is otherwise healthy...her mother bragged on how she got the pediatrician to sign a letter because it "could" be life threatening if her condition ever worsened. Meanwhile there are adults with young children who truly are terminally ill and could desperately use a vacation with their family...something to remember other than hospitalizations and watching their parents both suffer. --- Kathy

 

[thadlo]

I'm sorry about your husband! I lost my dad to cancer a few years ago at the age of 55. One thing we did (my sister and I) was to ask anyone we knew for some help. We wanted to give my dad his own "make a wish" and we asked around to see if anyone wanted to contribute (mind you nothing big and certainly no pressure). My dad wanted to drive a race car so we gave him the Richard Petty driving experience. He loved it.
We had a "make a wish" party for family so everyone could see my dad's reaction when he recieved his gift.
Have a wonderful memorable trip. The family time alone will be so special and wonderful. That is all you really need.

 

[tophee99]

I had a similar plan to take my Mom to WDW this past October.....figured the crowds were less, weather was still good, etc. To be honest, it was a memory I wanted to create for my children (3 and 7). I had discussed it with my dad and we had thought maybe a last minute, couple days surprise trip. Unfortunately, my Mom passed away in September........very suddenly. We knew that she was slowly getting worse, but doctors had predicted early spring..............
May your trip be everything you want and more......

 

[mickeypitchford]

I wish that thing I can do for something a moment that will not be forget.

I am kind of not happy but hope to get improve on condition health. I am only 26 years old but I am not asking for pity. I understand what you are try to figure as I am watch my wife. I don't like to see her pressure and take care of money to put into this because my health is getting worse with suffer of pain. The doctor couldn't figure what went wrong and want me to get well!

I understand how it is and if one day I have extra money to send that program to get your husband have enough attention. It would be peace for him and enjoy.

I hope CM thinks about it and you can send the letter to Disney World and see if they have done that before for life threating. They are not looking for pity, they are looking for your memories not be forgotten.

It is like your husband can enjoy while his peace drain. So he could have enjoy without suffer. So he can join of Magic Kingdom where he can dwelling of happy but no pain. So you and kids will remain remember each time kids taken their kid to Disney World and remember him.

It is nice thing and that he lucky have you but sometime I don't want my wife input and patient with aside me. It kind of hard for me. I am looking forward for any improvement on my health.

We just married last summer 2006 and went to Disney World. My wife never went Disney World which our honeymoon went her FIRST time. It is amazing time and spend time there like we are kids again.

After one month, my illness got worse.


My pray with you and your family. Hope there will precious moment like there is a magic will come true.

 

[Juliah]

Have you heard of the Fairy Godmother Foundation? It is an organization that grants wishes for adults with terminal illnesses. I don't have any personal knowledge of them, but here's the link if you want to check it out:

http://www.fairygodmother.org/

Here's another one I found called Dream Foundation that serves terminally ill adults:

http://www.dreamfoundation.org/content.asp?page=aboutus

I have also heard of one called Memories of Love, but I can't find a link for it.

Hope you have a trip full of lots of good memories.

 

[pearlieq]

I had a similar plan to take my Mom to WDW this past October.....figured the crowds were less, weather was still good, etc. To be honest, it was a memory I wanted to create for my children (3 and 7). I had discussed it with my dad and we had thought maybe a last minute, couple days surprise trip. Unfortunately, my Mom passed away in September........very suddenly. We knew that she was slowly getting worse, but doctors had predicted early spring..............
May your trip be everything you want and more......

I'm so very sorry for your loss.

 

[Momof-3]

Mirthmaiden,


I hope you and your family have a wonderful trip. Im so sorry to hear about your husband.

Maybe try searching on the internet by the type of cancer he has...maybe they might have some links to a wish organization or try a social worker at the hospital you guys are associated with. Maybe they might know of some place....but I have heard of them.

I wish you all the best....and keep us posted.

 

[SueM in MN]

Sorry to hear about your sad news.

I have heard of the organizations that Juliah posted, although I don't know anyone who actually used them. It's worth checking out though.
Also, check with the Social Worker at the hospital as Momof-3 suggested.

Depending on his energy level, he may find driving an ECV is too fatiguing. It would give him more independence, but he would need to be alert to drive around and some people find that more tiring than sitting in a wheelchair an being pushed.

Another thing you may want to look into is a service like Tour Guide Mike. He is a sponsor of the Theme Parks Board and was a Disney employed VIP Tour Guide for a number of years before going out on his own as a VIP Guide. At the very least, his advice can help you to know where to go to find the fewest crowds. He may know some things we don't about organizations to help people with terminal illnesses.

Besides First Aid, you can go to one of the resorts close by the park you are visiting, if he needs to get away from the park, but doesn't want to actually lie down in First Aid and sleep. You can take the monorail to the MK resorts or the boats at Epcot to get to the Epcot resorts.
Attached is a picture of one of the rooms at First Aid.

 

[mirthmaiden]

Thanks so much to all who have responded. It sure is nice to know we are not alone. dclfun...I am so sorry for your loss. My heart goes out to you and also to you tophee99 and mickeypitchford It is so difficult to watch your loved one suffer, and then to have health problems of your own too!

I really appreciate the advice. I will check into the foundations you mentioned Juliah. For us, although we are spending our last dime on this vacation, it isn't so much a question of coming up with the money. We have it covered, although getting a bit of help would be wonderful since there are the never-ending hospital and medicine bills to deal with, not to mention two DD's going off to college in August. But we'll get by. One thing we're not doing that I wish we could afford is to stay at AKL instead of POP. I don't have anything against POP. It's just that DH absolutely adores lions and I think he would be so enthralled to have a savannah-view room, even if he wouldn't see any lions out there.

This post was more about trying to do "special" things for DH within the trip. Although our agenda may need to be seriously cut back, depending on his stamina, we have reservations for CRT breakfast, Hoop Dee Do, Fantasmic dinner package at Mama Melrose's, lunch at Coral Reef, character breakfast at Crystal Palace, tickets for Cirque du Soleil, and a few other restaurants. DH gets a lot of pleasure from food right now, when he has an appetite, so I'm trying to give him plenty of opportunity to eat

I was just wondering if it's possible to arrange things like having him participate in a show, or getting some extra attention from characters at the meals. - something special that can't be "bought." I guess I can hope and pray to win one of those "million dreams" or something like that.

 

[Cheshire Figment]

I was just wondering if it's possible to arrange things like having him participate in a show, or getting some extra attention from characters at the meals. - something special that can't be "bought." I guess I can hope and pray to win one of those "million dreams" or something like that.

What you can try, especially if you are at a meal, is to talk to the character "handlers" They will be either wearing a white and yellow shirt or a varsity-type jacket with a Mickey "hand" on the back. A brief explanation of teh situation may work; the handler will then pass on instructions to the character(s).

Similarly, as far as shows are concerned, you might try a friendly conversation with someone in crowd control, especially one that does not look harried.

In either case you can't tell, but there is always a possibility that good things can happen.