Talk to me about the realities...touring WDW on chemo

[humboldthny]

Hi all....

This is not a situation I ever thought we would be in, but my dh(38) has just been diagnosed with Hodgkin's Lymphoma. It's early on and we don't yet know his stage or his course of treatment, but we are expecting at least 6 months of chemo followed by radiation.

We booked a 4 day trip to Star Wars Weekends for June 8-12 and purchased plane tickets quite some time ago and are trying to decide what our options might be....of course we don't know how dh will be feeling at that point in his treatment. Dh doesn't want to cancel, and we were going to be touring quite differently from how we usually do as we will not only have our dd8 with us, but our newly adopted ds will be 6 months old at the time of the trip - so our pace was going to be a lot slower anyway.

I guess I would just like to hear if any one here has visited WDW while on chemo, or gone with a family member/friend/etc. on chemo? What was the experience like? Did you utilize any special services at WDW? Do you have any advice?

I think if we stuck with our trip plans that it would really give dh something to look forward to (he is a HUGE Disney fan) and help keep his spirits up....I was ready to call and cancel everything, but he didn't want me to.

 

[Cheshire Figment]

Yes. My late wife was on chemo and for several months we thought she was recovering. We bought an extra ECV for her (we were local) to use.

Since you are traveling, I would very strongly suggest that you rent an ECV from an off-site location.

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information, including in Post #2 where people rent ECVs.

Or, if you want an easier route to the FAQs, click on the link in my signature.

 

[Bete]

If you are going to try a trip; I think that's your best answer. The scooters can go through ride lines and enter shows. I would say for restrooms and restaurants you will have to walk, but most everything else can be handled with a scooter around the parks. If it helps a scooter gives you handicap access.

At 38 he has a better chance of not feeling weak and sick, but cancer treatments are tough on all. You haven't started treatment; so, it's hard to predict how he will handle it all. I just want to say you are still within the 45 day mark with Disney to cancel the trip and get a full refund from them. Airfares you will take a hit on most likely with a fee to cancel. They will put the balance on account for you to use a year from ordering/buying them, not from the time you cancel (This is how Airtran worked for us). I had to do this recently. We did not have air travel insurance. Now, I'm trying to sell my credit to a neighbor for 50 cents on the dollar. We will be driving to Disney if we get another chance, not flying.

Having a new child in the mix and another young one may put this trip over the top. Most of everything will be on you; I'm afraid. If you can get someone else to go (a family member like a sister, parent, etc) to help it may all be more doable. You'll be pushing a stroller (not hubby) for the 6 month old and will your 8 year old stay close by your side without holding her hand all the time? Will the 8 year old use and can she fit in a double stroller?

Our prayers are with you.

 

[PlutoPony]

My biggest concern would be that your husband's immune system will likely be weakened, and being around so many people + germs puts him a much greater risk for getting sick. The chemo I'm familiar with is done every 3 weeks (but lymphoma chemo probably has a different timeline) and week 2 is the nadir week i.e. the time when the immune system hits rock bottom and is trying to recover in order to handle the next chemo infusions. Personally I'd be reluctant to be in crowds like that either week 1 or 2, just to minimize the risk of sickness that could throw off the chemo schedule. I'm sure you'll be talking with your doctor about this, and he may want to wait and see how your husband tolerates the first couple treatments before giving you guidance.

Good luck to you all and hope things go well for him

Edited to add: If your husband has a port put in for administering the chemo, ask the doctor who does it (hopefully someone like an interventional radiologist) if there are any restrictions doing rides or things like that, just so you know. If nothing else, he may need to avoid hard restraints that are positioned directly over the port - or it might not be an issue at all. But it is something that I would check

 

[dclfun]

I'm on chemo now and have been for awhile. I had two treatments in late August then had emergency surgery and a wound infection so didn't start up again until mid-November. My treatments are every three weeks, but this is for colon cancer so your DH's will likely be different. I know with blood cancers that counts can go really low and often someone is in the hospital to be supported with blood transfusions during that time. I actually feel best right after the chemo treatment and now know what to expect each week. As the treatment and drugs that I'm being given are very different than what your DH will have, I won't go into the side effects, but he should speak with his oncologist and ask for advice. We will be at Disney in early March with my entire family and I plan to do as much as possible then go back to the resort and rest when I need to. I do have quite a bit of pain due to my primary tumor and it's metastases and am on narcotics, but if your DH does not have pain, he may have more stamina.

Remember that he can go to First Aid to rest if he needs to. There are cots to use and curtains for privacy. I would take the suggestion and rent an ECV as he will need to conserve his energy. This way you can push the stroller with your new baby (congrats!) and the 8 year old can walk beside both of you.

Again, I would have him speak with his oncologist before any decisions are made regarding your trip. He will need to know how often he'll have chemo and what to expect. As chemo is based on cell cycles, I know in my case I cannot have it earlier or later than the planned date- exactly three weeks apart. His may be different. If there are concerns about his immune system, his Dr. may say that he needs to wear a mask, and you'll want to take precautions such as using a lot of hand sanitizer and hand-washing.

At any rate, I'm still "myself" and try not to let the cancer rule my life. I do listen to my body and rest when needed but I also spend most days not even thinking about cancer at all and just enjoying my family. I'm sure your husband would have enough benefits from this trip that would outweigh any risks, but you'll want to clear it with the oncologist. I'm sure he/she has many patients who want to take a trip to WDW and will do as much as possible to help you get there. Good luck!

 

[PatsMom]

I have to agree with talking to your husband's oncologist prior to making any decisions. We try to time my treatment cycles so that I am at a good point when it is time to go to Disney. Everyone reacts differently, so he might not need an ECV, but I would budget for one. There are days when you are doing chemo that it is just so much effort to just drag your body out of bed, but there are days when you feel fairly decent.

What I would be most concerned with is the crowds. SWW is a mob scene at the studios. We did it one year and swore we would never be back. This is one of the few instances when being a germaphobe makes sense to me. When I am doing treatments I avoid buffets like the plague, use hand sanitizer a lot, and wash my hands a lot. So far I have managed to stay pretty healthy but you might want to talk to his oncologist about how compromised his immune system will be. Even more than Disney, I sometimes worry about the airplane!

But I manage to have a good time at Disney. I go slow sometimes and my husband and daughter sometimes go off without me so I can sleep a little later in the morning or turn in earlier at night. The trips give me something to look forward to!

 

[stargazertechie]

My father is end stage IV esophageal cancer. We went to Disney in November. He was diagnosed terminal last week, if that gives you a time frame on how crappy he was feeling.

At the point that we traveled, he had been receiving weekly chemo (3 drug cocktail) for 10 months.

We rented an ECV. It was a lifesaver. His stamina was terrible, and it allowed him to enjoy the parks.

We also requested a GAC for alternate waiting areas out of the sun. There are very few rides that we needed to use it on, but it was a lifesaver being able to stay out of the sun.

Many chemotherapy drugs result in hypersensitivity to the sunlight. I'd recommend getting some good UPF clothing for your husband, and a wide-brimmed hat.

We hit the parks for 5-6 hours a day. I was impressed with how much we got done.


Enjoy your trip- make some good memories! Hopefully this is just the first trip of MANY with your newest addition!

 

[Heluvsme]

Besides the ECV and preserving his energy, I think the other major concern would be his immunity levels. A face mask would be wise and anything to help cut the exposure to germs would probably be a smart decision.

You can also request, and pay for, the heavy duty cleaning of your resort room.

Small comfort items for him..... if hard candies will help with nausea, or small pillows for his lower back while sitting for longer periods of time, a hat for sun protection, maybe a small mister fan to keep him cool, etc.

I think if his doctors OK it, and he's feeling up to it, you can have an awesome vacation! No, it may not be opening and closing each park, but the time you're there can be real quality time. Disney is magical, and if it can elevate moods and lighten circumstances, even for a short time, then it might be worth it!!

Praying for you all..... for his recovery, and for your stamina and strength, a lot will be put on your shoulders.

 

[Cheshire Figment]

You can also request, and pay for, the heavy duty cleaning of your resort room.

Not correct. If you ask for a special cleaning for medical reasons Disney does not charge any fee for this.

 

[stargazertechie]

I'd just like to touch on the immunosuppression issue. My dad's immune system was shot, and we arrived the day after thanksgiving. His scooter acted as a good barrier in the crowds- it forced people to give him a much wider berth. We carried hand sanitizer and made sure to wash up before meals, but we did not worry about airborne pathogens. You'll be traveling in the summer, which is not a prime time for airborne illness.

If his immune system is pretty rough up, you might also look into requesting alternate waiting areas where available.

He came back home free of any hitchhiking viruses or bacteria, and feeling better than he had in months.


Just my .02

 

[humboldthny]

Thank you for all of your responses - It looks like we will be cancelling both of our planned Disney trips for this year. We found out on Friday that dh is in at least Stage 3 of his cancer, and we'll know in another week or so whether he is in Stage 4. This was hugely disappointing to us, because dh was showing very few symptoms even the dr. had been hopeful that we had caught this early. Now it looks like we may be in for a very long and drawn out treatment.

 

[dclfun]

I'm so sorry! Once you find out his treatment regimen and projected length of treatment then hopefully you can plan another trip. My heart hurts though- he's so young to be given a later stage diagnosis and I know this has got to be so hard for you too. {{hugs}}

 

[cm8]

Thank you for all of your responses - It looks like we will be cancelling both of our planned Disney trips for this year. We found out on Friday that dh is in at least Stage 3 of his cancer, and we'll know in another week or so whether he is in Stage 4. This was hugely disappointing to us, because dh was showing very few symptoms even the dr. had been hopeful that we had caught this early. Now it looks like we may be in for a very long and drawn out treatment.

I am so sorry. My sister is 25 and battling NHL stage 4 and it was discovered last month while she was 22 weeks pregnant. She had to be placed on a vent as it was affecting her lungs and her pregnancy was terminated to take the additional stress off of her body. She has been on Chemo for about a month now and is doing the best she can. I will say a prayer for both you and your husband. It is not an easy road to travel on. Congratulations on your new addition and may he bring you strength

 

[Bete]

Our prayers are with you.

 

[zumbergc]

I'm sorry to hear about the recent development. Once treatment starts and you get a handle on how severe his side affects are to the treatment.
You might get an idea if he could make a trip and plan a trip in the future.
Do as other people mentioned. Talk with the oncologists. Since some cancer treatments are 5x a week for a month or 2 straight and others its one treatment every 3 weeks.
Once you get a treatment plan and after a few months in seeing how things are progressing you can make a better decision of when a good time to go is.

We went to disney with my mom b4 she passed with cancer. It was a great moral booster for my mom and I wouldn't have missed it for the world.

It was hard to plan because we had originally planned to go in the fall but she got 2 sick to go at that time. Then we rebooked and went in feb.
We were dvc at the time so planning a trip has different limitations with availability and such.

I recommend if available to use southwest for flights because you aren't penalized for moving and switching flight times and dates. Saved us a ton.

Definitely get a scooter to save energy because you want to maximize his fun time. Its not fun the first time being in a scooter, but if it means more time in the park having fun, take it. Plus, with treatment, you don't want him over doing it one day because he walked. Then the next day be completely exhausted and having to stay back at the hotel. Again all depends on his energy level, everyone is different.

Best wishes and I'll say a prayer.

 

[PatsMom]

I am so sorry to hear that it is a later stage diagnosis. I am not very familiary with lymphoma but I hope that the prognosis is not too grim. I have to agree with settling into a treatment regimen and seeing how he does. A trip to Disney is not out of the question, it may just need to be delayed a little while.

I have a T-shirt that says it best - cancer sucks.

 

[Disney Enabler]

Like your husband, I have Lymphoma. I was diagnosed with stage IV a year ago October. I went through seven months of aggressive chemo every 3 weeks followed by radiation. I then had about six months off but unfortunately my tumors started reappearing so I am in chemo again.

Although I have not been to Disneyworld I have been to Disneyland several times in the last year. I even attended the DIS ABD trip last February a couple of days after a chemo treatment. I found planning and looking forward to these trips gave me and my husband, my primary caretaker, something to look forward to. Cancer is rough and the treatment is tough to go through. Disney for me is a wonderful escape. I hope you can plan a trip for sometime in the future.

I agree with the others. Have a conversation with your oncologist. He will give you guidance. In the park, I use a ECV scooter. Chemo makes me bone tired. The ECV, along with a taking a nap, gets me through the day. I have no problem leaving my husband in the Park and going back to the hotel and resting mid-day. When I am out in public I am cautious about waiting near people who are sneezing or coughing and I make sure to keep my hands really clean.

Lastly I want you know that these boards have been very supportive. Surround yourself and your husband in pixie dust and positive attitude. If you want more information about my treatment just PM me.

Good Luck.

Carol
It's a great day to be alive!!!

 

[CindyIsMyFave]

One of my best friends (33 yrs old) went to WDW in December after 4 months of chemo (treatments every 2 wks, still ongoing). By all accounts, she is handling the chemo very well all things considered. She was pretty nervous they might tell her she couldn't go, but they never did. She told them of her plans after about a month into treatment. The final? test was her blood counts at the last treatment right before she went. They were a little low, but not enough to require a white blood cell shot.

Anyway, she loves Disney and said she found that being there really gave her energy. She didn't feel the need to rest extra - she even did the parks a couple of nights 'til 1 or 2 am. The biggest differences were that she walked slower, but still walked everywhere. And she went through hand sanitizer after each ride, show, bus, etc. She did come down with a cold upon her return, but she said that was worth it.

She wanted me to caution that everybody really is different, and the only way to know will be to see how he handles chemo once he starts. She said that they actually cancelled an earlier Disney trip that had been scheduled right at the beginning of treatment, so to have the Dec. one to look forward to made a huge difference.

If losing the package deposit doesn't bother you, then just wait as long as you can to make a decision. If you're worried about that, any thought of changing to room-only reservation and purchasing things separately to get the better cancellation policy?

Hugs and prayers - I really hope you can do it; my friend was just thrilled to go and she's hoping to go again this year.

 

[staceycrouton]

We too had to cancel a trip to Disney due to an illness. Our daughter, who is now 11 years old, was diagnosed with acute lymphoblastic leukemia a little over a year ago. As upset as she was when we had to cancel the trip, she was old enough to understand that her health was the most important thing. We are now planning a Fall 2012 trip to Disney and, I agree with pp that the planning has definitely kept her spirits up. Although she will still be in treatment at this time, (most of her chemo at that time will be pill form), she will be at an easier portion of treatment. Best wishes to everyone who has cancer, or a loved one who has cancer. Our daughter has never felt sorry for herself or thought "why me?" Keep a positive outlook and never give up!

 

[batt01]

My husband age 44, just finished treatment for HL last friday. 4 rounds (8 sessions) of ABVD Chemo and three weeks of radiation. He had stage 2b. I am sorry for your diagnosis and the road you have ahead. He did well during the chemo, which was scheduled every other week. He would generally feel very tired after the infusion, but was ok for about 1.5 days. Day three was always the worst and then he began to recover. Generally by day 7 he was back up and around and felt ok for the next week. We got used to scheduling family time on the weekend prior to the next chemo. He was feeling really good by then. One thing we learned that made a HUGE difference was to make sure he kept up with some sort of bowel prep so that he wouldn't get constipated. Talk to your oncologist about this. Really, it is SO important. The only times he got really sick were when he was constipated. It is easy to prevent, but hard to take care of once it sets in. Also, we had an arsenal of anti-naseau remedies available that he would play around with until he found something that helped. In any case, I could go on and on, if you want more specific information from someone that has been there and done that PM me and my husband and I would be honored to talk to you about anything you might have questions regarding. He is a physician, btw. He is a huge SW fan and a bigger WDW lover. We, too, had to cancel a Disney trip when he was diagnosed.

On a very happy note.... we are 13 days from our much needed trip to Disney to celebrate love, family and health. Dreams do come true and this trip will be our best ever, I do believe!

Honestly, do feel free to PM

Lee Anne in Hickory NC