Disney World with a Cancer Patient... What do I need to consider?

[Gracefulskinny]

So DH and I hemmed and hawed and finally decided to pull the trigger on a spring trip to WDW. About 1 week later all hell broke loose and we ended up in the ER with a serious cancer diagnosis. We are weighing many factors on whether we actually keep the trip at this point. I am looking for insights on what we need to factor in and consider when going to Disney with a cancer patient. Does anyone have experience in this arena have insights to share that might help us make our decision on whether to keep or cancel the trip?

Note: as both my daughter and I have sensory processing disorder we were already planning on getting the DAS

 

[kirstenb1]

I'm so sorry. Considerations will depend on the treatment and how close it will be to your trip. Surgery? Radiation? Chemo? Spring can be a really busy time at WDW, so crowds may be tough, if immunity is weakened

 

[Maggie'sMom]

So DH and I hemmed and hawed and finally decided to pull the trigger on a spring trip to WDW. About 1 week later all hell broke loose and we ended up in the ER with a serious cancer diagnosis. We are weighing many factors on whether we actually keep the trip at this point. I am looking for insights on what we need to factor in and consider when going to Disney with a cancer patient. Does anyone have experience in this arena have insights to share that might help us make our decision on whether to keep or cancel the trip?

Note: as both my daughter and I have sensory processing disorder we were already planning on getting the DAS

I think this will be a difficult question to answer without knowing a little more about where the patient (you don't mention if it's you, your DH, or your child) is in terms of treatment and level of health. For example, my dad had bladder cancer, but during the first round of treatment, he was in really good shape because of the type of treatment they were doing. He had no loss of stamina and appetite and his immune system was fine. Nine months later, he was in heavy duty chemo and radiation and wouldn't have been in any shape to take a trip.

In general, the biggest issues that come to my mind are immune system and stamina. For stamina, rent an ECV (unless the patient is your child). Where are you staying? You might need to make the days short or go back to the room mid-day to rest. If the patient's immune system is compromised, you will need to be extremely careful about germs. Lots of hand washing and/or hand sanitizer. Keep hands away from your face.

 

[SteveMouse]

I think there are both physical and emotional considerations.

Depending on the prognosis, I would lean to going. Factors I'd consider are what does treatment look like from a duration, impact on energy, and recovery level.

I'd also think about creating happy memories, in case things don't turn out well.

Economics also come into play. If you play now, are there resources available to support a "prize" for finishing treatment or when needed if life gets a bit tiring? (You don't have to answer, but do think about it).

if you go while under treatment, understand how the treatment may impact energy levels and whether one needs to stay out of the sun (while the lines are mostly covered, the area between attractions is not).

safe travels!

 

[Gracefulskinny]

I think this will be a difficult question to answer without knowing a little more about where the patient (you don't mention if it's you, your DH, or your child) is in terms of treatment and level of health.

DH is the one sick. As to where we are in terms of treatment we are at the limbo phase where the first biopsy was enough to verify that it's cancer but not enough to tell us type or markers. We won't know our prognosis until next week. However, 2 of the 3 suspicions for what we are dealing with would mean it's stage 4. As for level of health, he was aboslutely fine 3 weeks ago. no signs of this at all. It's been an enormous shock to our family.

In general, the biggest issues that come to my mind are immune system and stamina.

That was my immediate thought.

Where are you staying?

Buena Vista Palace

I'd also think about creating happy memories, in case things don't turn out well.

Yeah..... the Docs suspicions of it possibly being stage 4 have us thinking this as well.

whether one needs to stay out of the sun

Hmm I didn't think about that being an issue. That's good to keep in mind.

 

[lanejudy]

In addition to what others have mentioned, I'll point out the obvious -- please check with his medical team as well. They may have some suggestions or concerns, things to think about.

Good luck with diagnosis and treatment, and I hope you enjoy your trip whenever it occurs!

 

[Gracefulskinny]

please check with his medical team as well.

They seem to be in the "Your daughter is going to need the magic and memories we can find a way to make it work" camp.

 

[cedricandsophie]

I had lymphoma a few years ago and underwent six round of chemo. i Was lucky, lost my hair, but little to no nausea. I was tired and my bones ached all the time, plus a lot of heartburn. We went to vero beach during that time but not the parks. I hung out at the pool although my doctor told me to avoid going into the pool because of bacteria. Right after chemo ended we went On a trip to Europe as a thank god it’s over gift to myself. It was heaven and did my first balloon ride over the alps. Then when we got back I fell on ice walking the dog and broke my wrist. That hurt way more than chemo. I’ve been cancer free ever since.

For me, the trick During that period was to remain positive and happy. my husband was more worried than me. For every chemo treatment I had girlfriends come to hang out and we usually laughed through the whole thing, people brought food to the house. I cuddled my dog. I continued to work out.
I wouldn’t give up a trip to the parks but I would plan on shorter Days. I’d hang out at pool more often. I’d make sure that the doctors didnt have any serious concerns about germs. if it were me, I’d give my family permission, with love, to do full park days and then meet them for a great dinner.
Having cancer is a ***** but I learned a lot during that time about what is important and how blessed I am to have Incredible friends and family, I appreciate everything so much more. And my husband and I started traveling the world to make more memories.

 

[Caitttmeetsworld]

So DH and I hemmed and hawed and finally decided to pull the trigger on a spring trip to WDW. About 1 week later all hell broke loose and we ended up in the ER with a serious cancer diagnosis. We are weighing many factors on whether we actually keep the trip at this point. I am looking for insights on what we need to factor in and consider when going to Disney with a cancer patient. Does anyone have experience in this arena have insights to share that might help us make our decision on whether to keep or cancel the trip?

Note: as both my daughter and I have sensory processing disorder we were already planning on getting the DAS

Hi there! If anything just plan to take breaks throughout your trip. Don’t try to do everything in one visit. Take your time. And get the ONE ride/attraction, one restaurant, one character and one snack everyone would want to do. Try to break it down from there. Don’t forget to relax!

 

[mamabunny]

@Gracefulskinny

First of all, I will hold a happy thought for y'all that it isn't as bad as they think right now. I know how disorienting this stage can be; when my dad was diagnosed, things either happened way too fast, or not fast enough at all it seemed.

A few thoughts: Speak directly about the destination, distance & duration of the trip to his medical team, and make sure you find out if there will be any restrictions for the trip. Plan ahead for any medications or personal care items that he may need; Amazon can drop ship to the Resort, but some medications may be required to be filled locally.

Sun issues can be addressed with clothing (long sleeves, hats, long pants, etc.). Remember that if he is sitting in a chair or on a scooter for long periods it will be important to think about the tops of his ears, shoulders, hands, arms, upper legs and the tops of his feet for sun protection.

Because his stamina may be affected, plan now for your DH to use a mobility device, like a wheelchair, Rollator or scooter. Far better to have it arranged and NOT need it, than to get there and have to arrange it on the fly. There are lots of places to rent from in Orlando. You can rent scooters and wheelchairs from WDW, but you can't take use them anywhere but in the Parks. Some Resorts are pretty big, so you will probably want to rent from an outside vendor so that he will have the device for use at the Resort as well as at the Parks.

Remember that medical equipment flies for free, so if you can borrow a wheelchair or scooter (or Rollator) for the trip from someone in your hometown, in the US the airlines won't charge for it. It goes in the hold under the plane. (Lots of airports are big and exhausting for the able-bodied - so if you are flying, think ahead about your airport(s) that you will use. Don't arrive with your DH already exhausted just from getting there!)

If you are worried about the kids being freaked out about the wheelchair (or whatever device he may need) just tell them that it's only because you all are so busy at Disney World, and daddy gets tired right now. Most kids will accept that and then go right back to being excited about Disney World. The kids will take their cues from how you all handle it; if you are chill-no big deal about the use of a mobility device they will accept it and go on. If they see you and/or your DH get upset or emotional about it, then they may think that they should be upset too. If your DH is cool with it, let the kids "decorate" the chair or scooter!

Remember if you are going to push him in a chair to plan for yourself - make sure you have good comfy supportive shoes on (you will be pushing up and down a LOT of hills, ramps and inclines, so think more like tennies, not sandals) and resist the temptation to hang a bunch of stuff off the back of the chair; it makes it heavier and more awkward to push - and can be uncomfortable for the person in the chair. Most people can't self-propel at WDW because the distances are so great; the average Guest walks between 3 & 10 miles *per day* at WDW, and only folks who live full-time in a chair can deal with that. People who are not used to self-propelling a chair will find that if they can (somehow) make it through the first full day, the second day they will find that their hands and arms are like limp noodles. Vendors will not generally rent a power chair (or "electric wheelchair) to anyone who doesn't use one in their daily life; they are *very* different to drive, and have a steeper learning curve than an ECV or scooter.

Don't try to overplan; he may not be up to anything resembling a standard "Disney Day". Consider breaking your days into segments, and returning to the Resort for rest breaks; the kids can enjoy the pool while you and DH sit and relax, and then you can all go back to the Parks again after the break. You may even want to try and plan a whole "down day" between Parks days to let everyone recuperate a bit.

Consider getting MemoryMaker so that you can just approach any PhotoPass photographer and take all the pictures you want! If he is feeling good enough, he can stand for the photos; the mobility device doesn't have to be in the photos if he can manage.

Remember that there is a First Aid station in each of the four Parks, in case you need it.

And last, but not least, if I were in your shoes, I might consider a Disney cruise instead of the Parks. Mostly because it might be more relaxing, less tiring than the Parks, and you still get all of the wonderful Disney Magic (and characters, and wonderful meals, and great memories) that you would at the Parks.

 

[lahobbs4]

I'm so sorry about your news. As long as the medical team agrees, then I would definitely go on the trip as planned. Do you have trip insurance? We were thankful to have it before a cruise 2 years ago when we had a diagnosis and had no idea what my father-in-law's health would look like from then on. The trip was soon after finding out (stage 4) and we cancelled. Looking back, we wish we had gone because that was the best he felt during the entire 1 year cancer journey. But, every single case is different.

Hoping you get good news from all his results.

 

[Gracefulskinny]

First of all, I will hold a happy thought for y'all that it isn't as bad as they think right now.

Thank you.

things either happened way too fast, or not fast enough at all it seemed.

I never knew that Doctors would line up outside your hospital room waiting for their turn to see you. I'm beginning to adjust to it all though. Learning to embrace the quiet moments and use them to recharge so I have the endurance for the crazy ones.

Sun issues can be addressed with clothing (long sleeves, hats, long pants, etc.). Remember that if he is sitting in a chair or on a scooter for long periods it will be important to think about the tops of his ears, shoulders, hands, arms, upper legs and the tops of his feet for sun protection.

Ooo good call there. Is it worth the extra cost per day to rent a sun shade?

Remember that medical equipment flies for free, so if you can borrow a wheelchair or scooter (or Rollator) for the trip from someone in your hometown, in the US the airlines won't charge for it. It goes in the hold under the plane. (Lots of airports are big and exhausting for the able-bodied - so if you are flying, think ahead about your airport(s) that you will use. Don't arrive with your DH already exhausted just from getting there!)

Driving down not flying so that's one less thing to worry about thankfully.

If you are worried about the kids being freaked out about the wheelchair (or whatever device he may need) just tell them that it's only because you all are so busy at Disney World, and daddy gets tired right now.

DD is going to have to Daddy needing medical equipment sooner than that. He was sent home from the hospital with a walker. She'll have to adjust to that once she's home from Nana's.

Remember if you are going to push him in a chair to plan for yourself - make sure you have good comfy supportive shoes on (you will be pushing up and down a LOT of hills, ramps and inclines, so think more like tennies, not sandals) and resist the temptation to hang a bunch of stuff off the back of the chair; it makes it heavier and more awkward to push - and can be uncomfortable for the person in the chair. Most people can't self-propel at WDW because the distances are so great; the average Guest walks between 3 & 10 miles *per day* at WDW, and only folks who live full-time in a chair can deal with that. People who are not used to self-propelling a chair will find that if they can (somehow) make it through the first full day, the second day they will find that their hands and arms are like limp noodles.

Sounds like the best bet is to go with the ECV then.

Don't try to overplan; he may not be up to anything resembling a standard "Disney Day". Consider breaking your days into segments, and returning to the Resort for rest breaks; the kids can enjoy the pool while you and DH sit and relax, and then you can all go back to the Parks again after the break. You may even want to try and plan a whole "down day" between Parks days to let everyone recuperate a bit.

Thankfully we are good on this front too. Thanks to my daughter's and my sensory processing disorder our touring style is already pretty low key. 2-3 park days on 1 day off late arrivals and lots of breaks.

Consider getting MemoryMaker so that you can just approach any PhotoPass photographer and take all the pictures you want!

This will for sure be happening.

And last, but not least, if I were in your shoes, I might consider a Disney cruise instead of the Parks. Mostly because it might be more relaxing, less tiring than the Parks, and you still get all of the wonderful Disney Magic (and characters, and wonderful meals, and great memories) that you would at the Parks.

Unfortunately, I get violently motion sick quite easily so no cruising for our family. Also, my daughter is really excited to get to Kennedy space center this trip.

Do you have trip insurance?

nope. We waffled back and forth on getting it but decided against it when we purchased.

The trip was soon after finding out (stage 4) and we cancelled. Looking back, we wish we had gone because that was the best he felt during the entire 1 year cancer journey.

This is what DH and I are keenly aware could happen.

Hoping you get good news from all his results.

THank you

 

[Starwind]

Ooo good call there. Is it worth the extra cost per day to rent a sun shade?

I don't know that the sun shade actually offers that much shade, as it is only going to shae if the sun is at the right angle. Also, it does nothing for sun reflected off the ground, which can actually be pretty substantial.

I would look in to some quality sun protective clothing and a good wide brimmed hat as well as good sunscreen for the few remaining exposed areas of skin. My preferred brand is Coolibar [ https://www.coolibar.com/ ] but there are others. Columbia, LL Bean and others have some nice stuff. It isn't cheap, but you want quality that is functional, practical, will last, and that you can trust that it offers the protection it says it does. Eclipse makes some great open finger gloves and sleeves [ https://eclipseglove.com/ ].

I am sun sensitive thanks to a combo of naturally being so and charming medication side effect. Add to that that I react badly to chemical sunscreens and mildly to mineral sunblocks, and I try to either outright avoid sun or cover up with sun protective clothing whenever possible.

For WDW, my strategy is multifold:

- if I can, time park visits so I am spending lots of time in them at night when the sun is hiding On the plus side, this means getting to watch fireworks and attending events like MVMCP.

- wear layers that ultimately have you in long sleeves and pants. For the top, I may wear a normal short sleeve shirt underneath a lightweight long sleeve sun protective over layer hoodie. I am actually COOLER that way as the sun isn't hitting my skin, it is hitting the clothing. SOOO much more comfortable -- easier to regulate my temperature, and protected from the sun at the same time. Add pants and a wide brimmed hat and sun protective gloves (the ones I use most have open fingers). While I usually wear black LL Bean Perfect Fit pants, this past trip I had a pair of black Coolibar Sprinter Sport pants which were incredibly comfy [I even wore them walking the 5K at Castaway Cay during our DCL cruise and they worked great].

- did I mention a wide-rbimmed hat ? At least a 3 inch brim, 4" is better.

- the gloves I mentioned above also has some side benefits -- they do somewhat protect your hands from grimy surfaces. And I find they are a good way of reminding yourself to *not touch your face*.

- really good quality UVA/UVB blocking sunglasses. This is not a time to cheap out on "cute". you want quality sunglasses that properly block UV.

- good sunscreen, applied properly and frequently, to the bits not covered by the sun protective clothes. As another poster pointed out, remember things like tips of ears, noses, etc.

SW

 

[mamabunny]

Thank you.
I never knew that Doctors would line up outside your hospital room waiting for their turn to see you. I'm beginning to adjust to it all though. Learning to embrace the quiet moments and use them to recharge so I have the endurance for the crazy ones.

It's hard to do, but try to take good care of yourself first and foremost. You can't care for anyone else if you are exhausted or hungry. It's not being selfish - it's being smart. You will be much more effective for both your DH & your DD if you are in the best possible shape. (((hugs)))

Is it worth the extra cost per day to rent a sun shade?

As my friend @Starwind said above, I would focus more on a wide brimmed hat, clothing and sunscreen if possible. I have some of the same "no fun in the sun" issues that Starwind does, but for different reasons (PMLE), so I follow very similar routines when I'm at WDW.

The other down side to the sunshade - besides the facts that it costs extra, doesn't really offer as much protection as you want it to, *and* annoys the bejeebers out of everyone around you? You won't be able to see him or talk to him as easily; it will block you and your DD more than the sun.

I can typically do pretty well early in the mornings, and then go back before sunset; how long before depends on the time of the year.

Let us know if we can help in any other way.

 

[Starwind]

Another note about the sunshade... our most recent trip we rented an ECV from Gold Mobility and selected the sun shade as our free accessory. Once I actually saw it, I asked if they could remove it and keep it. The thing is unweildy and quite bulky. YMMV.

 

[Gracefulskinny]

You won't be able to see him or talk to him as easily; it will block you and your DD more than the sun.

Ooh that I is an awesome point I didn't think about.

Let us know if we can help in any other way.

Will do thanks!

The thing is unweildy and quite bulky

Yeah that's where my initial hesitancy came from. It looks like it would be.

 

[Lilsia]

I say that it would depend on what treatment he is getting at the time. While getting chemo, an infection was what actually killed my mom before the cancer could. She went out to the grocery store and got an infection that her body was just to weak to fight off because of the chemo and her whole body just shut down. I would say to someone that is getting chemo to take your weakened immune system very seriously.

 

[mamabunny]

I say that it would depend on what treatment he is getting at the time. While getting chemo, an infection was what actually killed my mom before the cancer could. She went out to the grocery store and got an infection that her body was just to weak to fight off because of the chemo and her whole body just shut down. I would say to someone that is getting chemo to take your weakened immune system very seriously.

I'm so sorry to hear that what's happened with your Mom. (((hugs)))

 

[Disneyfan754321]

I think you should do it, my sons wish trip was planned really quick. We decided to do it before all the chemo and proton therapy. It was really nice to have family time. With the way things ended up im really glad we did it this way.
We have the memory maker with all the pics and video. I love remembering him pre treatment.

 

[DisneyOma]

I say that it would depend on what treatment he is getting at the time. While getting chemo, an infection was what actually killed my mom before the cancer could. She went out to the grocery store and got an infection that her body was just to weak to fight off because of the chemo and her whole body just shut down. I would say to someone that is getting chemo to take your weakened immune system very seriously.

I was just going to say that if someone is undergoing chemo, the last place to go right now would be an internationally well known theme park like Walt Disney World, for the very reason you stated - and I am so sorry about your mom.

Remember that it is flu season, and coronavirus is gaining ground in the US, and anyone with a compromised immune system should stay away from places that have international guests, as it's like a germ-apolooza of things a compromised system has no chance to fight off.