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Butterbunkins
04-10-2012, 10:00 AM
My family is taking it's first trip with everyone to WDW since 1994. We have been planning for almost a year and we'll be there in mid Nov. In Feb. my mother was diagnosed with a rare cancer. She started chemo yesterday. She may also have to endure radiation and surgery. That and how long she is on chemo will be determined by how the cancer reacts to the chemo. I'm wondering if anyone has any advice for someone tackling the parks after going through something like this?

Also, her first set of doctors gave her 18 months with chemo (a lot less without chemo). We found new doctors because we just couldn't believe it. She's lively and looks and feels very healthy. But since her cancer is so rare it's impossible to find doctors that are experts in this type so we don't really know what the future holds. Nov. is a long way off and if her body does start to deteriorate, does anyone have any advice for this?

My mom is an incredibly strong woman and we are confident she will get into remission and hopefully before our trip, but we have never travelled under these circumstances before and I hope some of you have some advice for us. Thank you!

dclfun
04-10-2012, 11:31 AM
First of all {{hugs}} to you and your Mom!

I have stage 4 colon cancer and went to the parks while on chemo- in fact I'd had a chemo treatment two days before our trip. I managed to do okay but was very tired and nauseated. I use a power wheelchair for a different disability but was glad to have it as there's no way I'd have had the energy to trek through the parks. Your Mom will probably want to consider having someone push her in a wheelchair or if she's up for it, using an ECV. Both can be rented off-site so that she has a mobility device with her at all times. She may need to eat small meals depending on her appetite or carry snacks with her to keep up her energy and nutrition. If she tires or gets overheated she can rest in First Aid. They have cots for use there and I've taken many a nap in First Aid.

Chemo affects everyone differently and it also will depend on what type of chemo she is receiving. For instance I have one drug in my arsenal that really wipes me out and makes me nauseated. It also causes paresthesias and an inability to touch, eat, or drink anything cold. She will probably have totally different medications that are tailored to her cancer and genetics which will cause different side effects that may be minimal. Her chemo medications may change until they find one that works for her cancer and starts to shrink her tumors.

As to the 18 months the Dr. told her, if I have learned one thing it's that no one knows how long we have left to live. I was told 6 months only with no treatment and up to 24 months with aggressive treatment. These predictions are based on averages only and it sounds like your Mom's cancer is rare enough that there aren't any averages to go by!

Enjoy and cherish every day with her and if she has grandchildren, a great idea is to get some of the recordable books from Hallmark for her to give them as a gift. This way they will always be able to have a story read to them by their Grandma. Of course, enjoy your Disney trip and try to do some special things to make memories together. Hopefully she will remain lively and vibrant!

Wee Annie
04-10-2012, 02:52 PM
My daughter went to WDW while battling cancer and on chemo (she was 3, almost 4). Definitely could not have done it without using her stroller as a wheelchair, so I would counsel your mother to assume that she will likely need a wheelchair/ECV. Also, my daughter had limited stamina and had to take meds for nausea and pain most every day. That being said, we still managed to have a decent trip.

We are going back this week for the first time post-chemo, and are going to get a GAC for using a stroller as a wheelchair, since the years of chemo have left her with severe nerve and bone damage in her legs. Her drs assumed she would be using a wheelchair while there, but since she is so young (almost 6), we think a stroller will just be easier. So even if your mother is off chemo then, I would still assume the need for a wheelchair/ECV, and that your mother may have limited stamina. Plan short days, with lots of rest back at the hotel.

Good luck, and I'm so very sorry to hear about your mother.

Friendly Frog
04-10-2012, 03:31 PM
Just an fyi, my dad was given 6 months for his inoperable lung cancer. His chemo and radiation was hard and heavy but He lived 10 years after it!

Yes, take care of business and planning now...but don't let the time prediction become a self fulling time line.

JPlaisance
04-10-2012, 03:34 PM
I, too, am a colon cancer survivor. I was diagnosed when I was 46. I went through surgery, then started chemo and radiation. I had biweekly treatments. My doctor postponed my second-to-last treatment so I could go to Disney World. I had little problems on my trip.

As many people will tell you, chemo affects different people different ways. By October, your mother will know how it affects her. You can then plan accordingly. As the others have posted, get whatever equipment she needs to be comfortable. Disney World can be an exhausting experience to those in the best of shape, so let her go at her own pace. It's OK to split up the group if they are moving at different paces.

Good luck to you, your mom, and the rest of your family.

wendylovesdisney
04-11-2012, 06:50 AM
My sister was given 90 days but is still with us 9 years later. Her fight has been brutal, but she's still here and that is what counts.

Butterbunkins
04-11-2012, 11:10 AM
Thank you all for sharing your stories and for your words of wisdom! My mother is already a cancer survivor. She was diagnosed and treated for uterine cancer almost 7 years ago. The cancer was removed with surgery and it was nice and easy. I think we all expected it to be that easy this time around as well. It's not but we're dealing with it, being strong for her and making sure every moment counts. And that's why this trip is so important to all of us!

I will share all of your advice with her. She was adement about not wanting to use a wheelchair or anything during the trip, but after just two chemo treatments she is exhausted. I think with a little time she will realize enjoying herself is the most important thing. I know she just doesn't want to "inconvenience" us (she wouldn't) and she doesn't want anyone to feel sorry for her. So when she's ready to hear it I will let her know what you've told me.

Also, my parents and my brother are flying down, but my husband and I will be driving so we'll have a car for anything she needs. We'll be staying at the BWV and we like to drive to the parks so we can even drive HS if it will make it easier for her.

One great thing is we have all been to WDW a bunch of times so there is no urgency to "see it all".

Thank you again for all of stories, kind words and advice! You all are in my thoughts and prayers as we each go through this!

dclfun
04-11-2012, 11:32 AM
Thank you all for sharing your stories and for your words of wisdom! My mother is already a cancer survivor. She was diagnosed and treated for uterine cancer almost 7 years ago. The cancer was removed with surgery and it was nice and easy. I think we all expected it to be that easy this time around as well. It's not but we're dealing with it, being strong for her and making sure every moment counts. And that's why this trip is so important to all of us!

I will share all of your advice with her. She was adement about not wanting to use a wheelchair or anything during the trip, but after just two chemo treatments she is exhausted. I think with a little time she will realize enjoying herself is the most important thing. I know she just doesn't want to "inconvenience" us (she wouldn't) and she doesn't want anyone to feel sorry for her. So when she's ready to hear it I will let her know what you've told me.

Also, my parents and my brother are flying down, but my husband and I will be driving so we'll have a car for anything she needs. We'll be staying at the BWV and we like to drive to the parks so we can even drive HS if it will make it easier for her.

One great thing is we have all been to WDW a bunch of times so there is no urgency to "see it all".

Thank you again for all of stories, kind words and advice! You all are in my thoughts and prayers as we each go through this!

When she's ready to hear it, you can also emphasize that it would be much more inconvenient for the family to have to wait for her to walk slowly, take lots of breaks, and possibly return to the room for resting than for her to use a w/c. I would suggest a manual chair for her just so she doesn't have the stress of driving an ECV and having to watch for all the other guests who will dart in front of her. This way she can look around, enjoy her surroundings, and leave the "driving" to another adult. Using a w/c to many of us actually means freedom and the ability to do things we could not otherwise accomplish because of fatigue or pain.

I'm glad she has two treatments already completed and although I know the effects can be cumulative, my first two were actually the roughest for me. Hoping she starts to feel better and that she can enjoy her life.

Lisa71
04-11-2012, 06:51 PM
I have had patients given 6 months die in weeks and given the same 6 months live for years (one for 14 years in fact). Everyone is unique. Doctors use averages, but the outliers are still there. My uncle had stage IV prostate CA and lived 7 years. Rest, use shade, take time, enjoy. During the 7 years my Uncle reminded us that those who died in 9/11 could not see it coming and people who have a "you will likely die of this" can still have other things happen. Be sure to bring hand sanitizer and make special requests when needed for food preferences, etc. This is very doable. A friend had stage IV breast CA and went to Scotland for 2 weeks. WDW has a bigger team.