Going to Disney while going through Chemo

[kahpets]

Last fall we planned an extended family trip to Disney for this August. I was both looking forward to and dreading the trip – it’s always interesting traveling with a large group (especially with my family).

In February my mother was diagnosed with cancer. Her prognosis is good, but she is currently undergoing chemo every three weeks. She will be mid-cycle when we are at Disney (we arrive eight days after her last chemo). She’s going through chemo like a champ, but the drugs make her extremely sun sensitive, and it has definitely sapped much of her energy. Due to logistics, school schedules, etc. it is not feasible to delay the trip until her treatment is complete, and she did not want to cancel or delay until next year. I don’t think anything would make her give up a trip to Disney with all of her grandchildren. Her doctor encouraged us to take the trip as planned.

I am extremely concerned about her not overdoing it, and just as concerned that I will drive her crazy being overprotective.

We are staying at the CR, so we’ll be able to take the Monorail to Epcot and walk or take the Monorail to MK. We’ll also have a car, so someone can drive my mother home if she wants to leave a non-monorail park early.

I’ve read through this board looking for tips and found some great ideas/suggestions:

• We are renting an ECV from an off-site company. It’s important for her to walk sometimes (she has issues with her knees, they cramp up if she sits too long), so others will drive the EVC during her breaks. I understand a wheelchair may have been a better option, especially if she is very tired, but agreeing to the EVC was a big compromise on her part, and the wheelchair discussion was a non-starter with her.

I’m still not clear if her EVC can go on the Train at MK, so we’ll just ask when we get there.

• We requested a special cleaning for mom’s hotel room. When I told her I was going to do this, she thought I was nuts, but she asked her chemo nurse about this, and the nurse strongly recommended we do this.

• Mom is probably not going to go to the parks with us the first day (we should be at Disney by 11 am), but will instead rest at the hotel. If the room is ready early, she’ll take a nap, if not, we’ll try to find her a quite place she can sit and relax.

• We are going to try very hard to get to the parks as early as possible (goal is rope drop, but we are not all morning people), and get through everything early, and be back at the hotel during the hottest part of the day. She’s already said she probably will not go back to the parks with us at night if we go, except she wants to go back for the parade one night at MK.

• We are bringing loads of sun screen, and a few sun hats which she’ll wear during the day (she usually wears baseball caps, but they leave the back of her head completely exposed to the sun). We’ll also be on the look-out for a new hat at Disney, which covers all of her head. My mother is going to wear her wig to dinner (she said she’ll be more comfortable at dinner in her wig rather than a hat).

We have been to Disney before, and my father (who will not be with us on this trip) uses an EVC regularly, but this is my first trip with someone with a serious illness. My mother is used to being the caretaker, and doesn’t like to put anyone out, or ask for anything extra to accommodate her. She’s the type who will just grin and bear it, rather than interfere with anyone else’s fun. I want to do everything possible to make sure she gets enough rest and has a wonderful trip.

Any thoughts, ideas or advice to help make my mother’s trip more enjoyable and relaxing will be much appreciated.

Any advice for me on how to bite my tongue when I think she’s doing too much would be equally appreciated.

Thanks!

 

[Cheshire Figment]

An ECV cannot go on the MK train. So if you want to do the train with her it would have to be a round trip to the origination point.

 

[buzz for boys]

First id like to wish your mother all the best and a speedy recovery

I would like to say that we did Disney with my ds just after he had finished chemo so shared some of your concerns.
We found that a bandana under his sun cap worked wonders for protecting his head and neck - we kind of left the tied bits big if you see what I mean and he also found it very comfortable.

He did tire easily and we adjusted our plans to suit him - if you really think your mom wont speak up if she is tired why not factor in a midday break back at the resort and then give her the choice if she would like to come out again or have a rest ?? If already at the resort then maybe its not percieved as putting you all out of your way!!

Th other thing we found very difficult for DS was the heat made him smell funny ( reacting with the chemicals in his blood )It was at times quite a strong smell - just thought id mention it as we were quite alarmed and had to phone back to the uk to check all was ok !! As an adult you may get a bit self concious so a small fraganced spray may be an idea !!

If i can help anymore please let me know x x x

 

[WheeledTraveler]

One thing she might want to look for is clothing with UV protection built in. I know you can buy it from catalogs like LL Bean. My mother's very sun sensitive (not due to medical reasons, just sensitive) and she's had luck with the ones from LL Bean. They're not fashionable, but depending on how sensitive she is, it might be a good idea.

Also, while you probably won't need this, she can always use the First Aid stations to lie down if she needs a rest and doesn't want to (or can't) get all the way back to the hotel.

If you haven't already, let the company you're renting the ECV from know that you need one that will break down for car transport (and make sure they will give you written instructions on how to do so). I think that all of the rental companies listed in the Disability FAQ on this board can rent scooters that break down, but won't necessarily give you one that breaks down unless you ask for it.

 

[dvcterry]

we usually get the park maps ahead from concierge and locate the first aid/family centers in the parks. These areas are air conditioned and if anything should happen you could take a rest, drink some water, etc. But you'll have a plan in place. Fluids are very important in the heat. We carry Purell with us to practice hand hygiene. There are still many things to do in the evening when it is cooler. Concierge can also give you a map and list of nearby medical facilities if needed. I wish you and your family a wonderful time.

 

[M5ward]

You can buy stylish and attractive hats with SPF/UPF 50 at coolibar.com

 

[DisneyMim]

Wanted to wish you well on your trip and hope it is magical and wonderful for all of you. Everyone certainly gave you great advice. The only thing I would add is that when you are checking in ask them if you can have a "quiet" room. My husband went through cancer 6 years ago and on our first trip post cancer surgery we stayed at the WL. I spoke with the CM checking us in and told her that my husband was a cancer patient (I'm not usually so bold, but we were all so exhausted by this time) and she gave us a wonderful room (I think it may have been an upgrade, certainly did not expect that) that was very quiet. My husband was able to get the rest he so needed to enjoy his trip. Going through cancer zaps your energy so much that a good sleep is very very important. Again I wish your family the best and...

Enjoy The Magic!!

 

[lovetoscrap]

I love "neck wraps" to help beat the heat and they might be handy for her. Here is a link to see what I am talking about: http://www.polarbreezebandanas.com/ I buy them in the Sporting Goods section of Walmart for a just a few dollars each.

From your description of her it sounds like you are going to have to keep a close eye on her non verbal language. You will probably be able to see in her eyes and her posture and her body language when she is getting tired or not feeling great. But she will probably say that she is just fine. When you notice this it may be a good time for you to realize that you are tired and really need to go back to the resort to rest, or sit in the closest a/c location, or get something to eat etc Or course she is just fine, but as the caretaker of the family she can't argue with the fact that YOU (or another family member) needs a rest.

Be flexible and willing to change plans immediately if you see that she is not handling things well -- the heat and crowds can be very frustrating for someone in an ECV that already is not at 100%. You will probably find that she tires faster than you or she thinks. And realize that everyone probably won't get to do everything you had hoped. With extended family hopefully you can take turns going back to the resort with her (with made up excuses if needed-- foot blisters, headache, indigestion, forgot my meds, need to change clothes, etc while others stay in the park.

Sending lots of pixie dust for a great trip and for a quick recovery for your mom.