First post in this forum; dad has stage 4 colon cancer

[Kwaschitz]

Hi everyone...
I've never posted in this forum and honestly had hoped I'd never have a need to In July, my (step)dad was diagnosed with colon cancer. It was one moderately sized tumor and we were told to expect chemo with radiation followed by colostomy surgery all within 6 months. He went in early August for his first treatment, only to find out that the results of his full-body PET scan had found tumors in his liver as well.

He started chemo and had some success at first, but then the tumors in the liver continued to grow and a few more popped up (while the colon tumor shrank so much that it no longer protruded and the cancerous tissue was just in the wall of the colon). He changed to a different chemo protocol and new scans were done after the first month. The liver tumors had grown even more and had multiplied.

We're now on our "last resort" - a chemo pill with a drip of another type of chemo once every 2 weeks - hoping not to cure but to hold the line for as long as possible (we're hoping for YEARS rather than the months we could be looking at).

Now for my disboard questions

My dad went to WDW for the first time with us 4 years ago when my son was 2. He didn't think it would be his thing, but the minute he stepped onto Main Street USA, he was just as hooked as my husband and I are. He's been with us twice now and his big dream has always been to take a trip with ALL of his grandkids - my son and my brother's 3 kids. It's just not something my brother's family has been able to swing. Now... well, now I want to find a way to MAKE that happen. I can't afford a full trip for 10 people (my family of 3, my brother's of 5, and my parents). SO I'm trying to find ways to make this doable.

Help me out here? What are some things we can do to make this work?

Things to consider... my dad has immense pain with sitting because of the location of his cancer (more rectal than strictly colon). So off property is kind of out of the question as the car rides to the parks would be torture. We've always stayed at CSR with them but on our last trip we stayed at the Polynesian and I think that might be something that is helpful for them - the monorail and ferry access into MK would give him greater flexibility in terms of needed rest and of course less chance of people bumping a, um, tender area. I'd like to include the dining plan with this so that once there, nobody is really thinking about money - just the fun we'll have.

What are your tips? Would he qualify for a GAC? And if so, does the whole party of 10 stay with him throughout? I honestly have NO clue what that means other than that it does exist. Would we be better off to try to rent a DVC villa at one of the resorts either on the monorail line (BLT) or with ferry access? Or would two Polynesian rooms be a cheaper option? How can I make this dream come true?

 

[Celestia]

So sorry about your father. Prayers and pixie dust coming your way.

GAC is only good for a max of 6 people, the person it is issued to and 5 others. So, no the entire group could not go with him.

As far as resorts, you'd have to price out the rooms with any possible discount vs the villas. You can usually get a better price on the villas by renting points from a dvc member. I think BLT would probably be the best for the villas. 10 people in two hotel rooms is really cozy...a three bedroom villa would be much more comfortable for everyone.

Good luck with your planning, I hope you are able to make it work.

 

[Celestia]

I think BLT would probably be the best for the villas.

For convenience, however Wilderness Lodge would be less $ and very nice and relaxing. My family actually prefers WL over BLT!

 

[SueM in MN]

I only have a few minutes because it is so late , but look in post 6 of the disABILITIES FAQs thread for information about Guest Assistance Cards.

For the resort, my suggestion would beto look first which park you I'll spend most of your time t. If it is Magic Kingdom, I would chose one of those resorts. Althoug I like WL, my personal advice would be one of the monorail resorts because you have the option of boat or monorail. Keep in mind that there are no elevators at the MK. Monorail station and the ramp to get from ground level to the station is quite steep and long.

 

[Bete]

I would rent a scooter and I would do it with an offsite rental company for your dad at Disney.

I know what you said about sitting, but you can get on and off the scooter as you need to do and park it sometimes. Also, I know you have to sit part of the time no matter what; so, the scooter will help him not get as tired.

You can try out a scooter for free at grocery stores. Those scooters will be bigger and more awkward than what you would rent, but it would give you an idea about it. Most people have a local mobility scooter store someplace not too far. You can go there and they will show you everything about a travel scooter. Pride models are the most popular to rent; so, I would try and see that kind. I would try a 3 wheel and a 4 wheel model to see what he likes best. Many say a 4 wheel is more stable, but a 3 wheel takes turns better. You can go to a local zoo for a day and rent a scooter there and see how it is for him.

A scooter is treated as a handicap vehicle, but again 10 is over the allowed limit. You would have special areas for a parade with it.

If you do a scooter you can get by at the value resorts. This would save a lot of money. Even if you got into the family suites at All Stars it still would be reasobnable by comparison. For bus transportation to and from the parks someone else may have to take over and get the scooter on and off the bus. Keep in mind the fun of Disney is being in the parks. You don't need the deluxe resorts to do it.

Some resorts have accomodations for 5 to a room. You might be able to get by with two rooms if everyone is willing to share and be together. You might even be able to get adjoining, connecting rooms. The kids could sleep on the floor if you give them a nice set up to do so and they might think it's fun. Can your father stand being in the same room for the whole trip? Only you guys can decide that part.

Remember, I'm trying to do this on the cheaper side; so, hence, the suggestions given.

Earn some extra monies before the trip like doing garage sales. If it's possible do some side jobs for neighbors and such that might bring in some extra money. Eat on the cheap for now. Do more casseroles and such. Stetch the food budget with beans, rice, potatoes, and bread. All gifts should be monetary and that will help some.

Good luck and God Bless.

 

[Piper]

I would be concerned about the miles and miles of walking that is involved for Disney. I am sure that his stamina is being affected. If sitting is a difficulty, I am not sure what he should do. A wheel chair or scooter involve sitting.

There is no provision for "front of the line" as that isn't what the GAC is for (although that is what a lot of people who haven't used it lately believe.)

I would say that your best bet is either to hire a personal tour guide which costs a lot of money or use a good touring plan and fastpasses.

It may also be that he couldn't do the more popular rides because they are "jerky" and could cause harm to someone with fragile health. If that is the case, he may not have long waits for rides as they are the most popular. (I can't do those rides and am usually able to get onto the ones I can do without a long line of people--however I have spent a lot of time in shops waiting for others to finish the popular rides!)

 

[loadsapixiedust]

Sorry to read about your Dad, I hope you can make his Disney dream come true.

My first concern would be how someone who has difficulty sitting will travel to WDW, would you fly or drive? Either mode of transport will have it's limitations and advantages.

If budget is a real concern but you also need some comfort and privacy I would reconsider the 2 onsite rooms v offsite accommodation argument. Some offsite locations (like the DTD area) are closer to the parks than some onsite resorts and you could have more space in a suite or condo there. Unless you are going to be on the monorail loop (and even then) there is going to be some travelling involved. How many days will you spend in the parks and how much time will be at the resort?

If your Dad will use a wheelchair or ECV (and it is hard to imagine anyone with frail health managing the parks without) maybe BLT would be a good option, the walk from there to MK is just a few minutes, we do it easily with a wheelchair as it's mostly on the flat whereas the monorail involves steep slopes. You could cut the cost by renting DVC points if the accommodations there would work for you in terms of room sizes and capacity.

The GAC will help if you split your party as it will only cover 6 guests but there will maybe be attractions where you don't have to use it and also some where the whole party won't ride so it's still a benefit. If your Dad has any medical issues when you are in the parks or needs a quiet place to take meds you can use the First Aid. There are accessible and companion restrooms around the parks.

I wish you all the very best with your plans. I lost my Dad recently so I know how precious these memories will be.

 

[dclfun]

I wrote a long reply last night and it never posted due to the internet. I will try again to answer.

First, I'm so sorry to hear about your Dad. I was diagnosed with Stage 4 colon cancer in mid-August and am not responding to treatment. I have very little time left. Mine is also more towards the rectal area and has also settled in my lungs and spine, so I am very uncomfortable. I would never make it very long at WDW, so I would first ask your Dad if he feels up to the trip, and then make it clear to everyone in your party that plans will revolve around Dad's comfort level and that they might not get to spend alot of time in the parks.

As to resort choice, if money is no object, I'd choose the Poly. You could manage with two rooms there but w/o a discount as you know it is quite pricey. Still, with monorail options to both MK and Epcot and boat travel to MK, it is probably the most convenient and restful of the monorail resorts. I love the beach there and the torch lights- it's such a pretty and peaceful resort with nice pools and restaurants.

Other than the Poly, I would choose offsite. Many people have highly recommended Bonnet Creek. It's actually in the midst of WDW and is closer to some of the parks than some of the Disney resorts. I've heard that their rooms are spacious, lovely, and relatively inexpensive. It would be easier perhaps for your Dad to relax and to have a kitchen to prepare food when he feels like eating.

As to the bus, there is no way I would take a WDW bus right now. It just takes too long and there aren't good shock absorbers like a car or van, and they are jerky. No matter which resort you choose onsite, if you aren't driving, you'll need to take a bus to one or more of the parks- just not worth it IMO.

I would be sure you want the DDP. I don't know about your Dad, but I would never be able to sit through a long meal without severe discomfort. If you do TS though, he might want to bring a cushion. I would recommend a cushion like those for hemorrhoid patients and bring it everywhere, esp. on a rental w/c or ECV.

He will likely need a w/c or ECV. The ECV will give him more independence but may be hard to drive in his condition.

If your Dad does feel up to the trip, I'd spend time beforehand letting him pick out the attractions he feels like doing and that he wants to do, or some things to do together to make memories. Maybe sign up for the photopass CD?

I hope you can pull everything off, and I hope the other family members pitch in financially. Many prayers being sent for your Dad.

 

[Kwaschitz]

Thank you all so much for your input! I hadn't considered an ECV - sitting is his most uncomfortable and he finds the most "comfort" comes from walking (he walks multiple miles a day).

We're on the 4th day of Xeloda/Avastin (to hopefully stop cancer cell growth). His pain level has come down from 9 out of 10 to now ranging between a 7 and an 8 on the pain scale.

I'm waiting to see if this is going to help and decrease his pain as it has for so many others before making any real plans.

The biggest concern would be in getting there - I think we'd choose to fly since that's the shortest amount of time, but it's so limiting in requiring that he be sitting for certain periods of time when he might be more comfortable standing - but the car ride would take SO long that maybe it wouldn't be worth it.

It may not be possible, but I really want to do something special for them. This year (in July) will be their 25th anniversary and they had hoped to renew their vows - they got married when I was 10 (2nd marriage for both Mom and my stepdad) and because of finances with raising kids, they got married in a pastor's office with no family/friends there. St. Patrick's Day is the anniversary of their first date (29 years ago) and if he's up to it, I think that the first part of March could be a great time for the trip...Something special for all of it.

If he doesn't have a significant decrease in pain though, it just doesn't seem like it can happen - I can't imagine how awful it would be to go and look at Splash Mountain without getting on. And my nephew and son are roller coaster junkies - I know that he'd want to go with them (he's that kind of grandpa). Just praying now that the new treatment works and gives relief!

 

[dclfun]

Thank you all so much for your input! I hadn't considered an ECV - sitting is his most uncomfortable and he finds the most "comfort" comes from walking (he walks multiple miles a day).

We're on the 4th day of Xeloda/Avastin (to hopefully stop cancer cell growth). His pain level has come down from 9 out of 10 to now ranging between a 7 and an 8 on the pain scale.

I'm waiting to see if this is going to help and decrease his pain as it has for so many others before making any real plans.

The biggest concern would be in getting there - I think we'd choose to fly since that's the shortest amount of time, but it's so limiting in requiring that he be sitting for certain periods of time when he might be more comfortable standing - but the car ride would take SO long that maybe it wouldn't be worth it.

It may not be possible, but I really want to do something special for them. This year (in July) will be their 25th anniversary and they had hoped to renew their vows - they got married when I was 10 (2nd marriage for both Mom and my stepdad) and because of finances with raising kids, they got married in a pastor's office with no family/friends there. St. Patrick's Day is the anniversary of their first date (29 years ago) and if he's up to it, I think that the first part of March could be a great time for the trip...Something special for all of it.

If he doesn't have a significant decrease in pain though, it just doesn't seem like it can happen - I can't imagine how awful it would be to go and look at Splash Mountain without getting on. And my nephew and son are roller coaster junkies - I know that he'd want to go with them (he's that kind of grandpa). Just praying now that the new treatment works and gives relief!

I also hope he gets some relief! I have Oxaliplatin every three weeks along with Avastin ( all IV) then take oral Xeloda week one and two, off everything on week three for the normal cells to recover. They hope the cancer cells are damaged enough that they won't grow during week 3. I have not had good results as my pain has increased, but I know plenty of people who have. We'll be at WDW, God-willing, March 2-5 for the same reason- making some memories. I'll be content to watch everyone on the attractions but I hope your Dad can do those coasters and whoop it up!

 

[Kwaschitz]

We got our first round of blood work back and maybe, just maybe, we can make this trip a reality!

Dad said this morning his pain felt "different" than before - still bad, but a different pain. He said it *felt* like a good thing. Mom said there was a total difference in how he holds his face and in his eyes (the man can't lie about pain - his face is extremely easy to read!).

Then the cancer center called (after closing) today with results of tests run yesterday. They started by asking exactly what he's doing differently than they had talked about - if there was a holistic treatment he was doing, if he was taking more than 5 pills at a time, or what. When he assured them he wasn't, they were FLOORED. His blood work is "significantly better" than they had expected at this time. My parents were too emotional to ask what the numbers were, if they had just stayed the same, if they were better... regardless this is GOOD news!!

In two weeks they're driving from their house to mine in NY (a 9-10 hr drive) if they can. That will be our real test of whether or not we'll be able to make the Disney trip.

@dclfun - I pray that your pain will decrease and that you'll be able to enjoy your March trip! I can't wait to read about it - I'm sure it will be amazing

 

[Bete]

I would get some seat cushions and see if they help with the sitting. There are foam ones and gel ones. Maybe, even a pillow would work. Also, I would try to sit crooked/slanted off to my side (more on the hip); this might relieve the pressure where it hurts. Alternate sides for this periodically when sitting.

Not sure if the doc would authorize this or not but there are injections to relieve pain. How well that combines with his cancer treatment I can't tell you. Will over the counter pain relievers help? How about a rub healing lotion were it hurts? Would heat applications help? There are patches available for this and a heating pad can be used at times. Would a chiropatric procedure help? You can probably set up some visits even on vacation. What about a good massage where it hurts? There may be specially designed orthopedic cushions for the butt.

As far as a touring plan for the parks if you truly want to make it possible for your stepdad then your boys may have to tone it down a few notches and perhaps skip the roller coasters or separate from the rest to do them, here and there. If your boys are too young to do this on their own then one parent may have to join up with them and the others stay with stepdad. This trip will have to be customized to your stepdad's needs. If you don't think it will be worth it for the rest of the family then don't go. Maybe, you can pick a different vacation that would suit the situation better, right now. Disney World may have to wait a little longer or it may not happen at all with your stepdad.

Test the water and see how long he can sit without too much pain. Maybe, try a local zoo and see how a day goes there. You can rent scooters in most zoos. If you can figure out the timing of the pain then maybe you can work around the rest. For example if after 2 hours he's hurting from sitting then don't sit pass that time. Maybe, you are in a situation if he walks around every half hour he can last longer without pain. He might be a better morning person; so, do the harder activities at that time after a good night sleep.

We go with our 90 year old mom in a wheelchair and we have enough enjoyment without doing it all. I see the day coming soon where we won't be able to do it at all. We don't do too many rides except for the wheelchair friendly ones.

Being in pain on a vacation will not be fun for stepdad. If the pain can't be relieved somewhat I would not venture this kind of trip.

 

[Kwaschitz]

Pain today is down to a 6 or 7! He may just feel up to it and, God willing, this treatment might buy us some time!!!


We're going to look into a GAC, possibly renting an ECV and hopefully we can do this. I talked to a Disney rep today and have 2 separate trips tentatively planned out (we have until Monday night to decide or lose the pricing) - possibly one as early as 2/28! We opted to save money by going with Coronado Springs since that has always been our favorite resort (though I do the Poly!).

Now to see if the rest of the family members' budgets can handle it on such short notice. I guess that's what credit cards are for, right? Tax refunds will be here before too long to pay them off.

 

[dclfun]

Woo hoo! I am celebrating your good news with you- that's wonderful that your Dad's blood work looks so much better!!!. I have a non-secreting tumor so have to wait for the scans vs. blood work but I'm glad your Dad got good news already! I can understand the pain and how much it takes out of you. I'm sure he's rejoicing to be at a lower level. Does his oncologist manage his pain or does he have a pain control Dr.? His pain should be able to be controlled with medications and you have some time to figure out what meds will work for him. I'm glad you have the trip options planned and I'm hoping and praying for a fantastic vacation for all of you with your beloved step Dad. Keep us posted!

Forgot to add that I love CS too- be sure to add a request to be close to the food court and explain the reason so you don't have any long walks at the resort.

 

[SueM in MN]

I'm glad to hear his pain is being decreased by his present treatment and that the trip may be able to be a "go".

Dclfun, I'm very sad to hear about your diagnosis and will pray that you get pain relief and enough time to get things in order and make some memories ith your family.

Kwaschitz, I want to mention a couple of things to think about for renting an ECV vs a wheelchair.

An ECV will give him more independence, but a wheelchair might be a better option for a number of reasons if you have enough people to push it.

1) The driver of an ECV needs to be watching where they are going, be alert to people around them and ready to stop for people who may step in front of the ECV unexpectedly. So, the driver may not be able sightsee much.

2) Using an ECV can be tiring because of the need to be alert. His energy level will go down during the day, especially if his pain increases and his alertness level may be decreased with pain medication and/or pain.
Since the person using the ECV needs to drive it, him becoming too tired will make it very difficult to get back to his room.

3) With an ECV, you have 2 choices - you drive it or you walk and someone else drives it.
With a wheelchair, you can ride while someone pushes, walk while someone else pushes it, or walk behind it while pushing it yourself. Walking behind a wheelchair, it can act as a support, kind of like a walker.

4) All lines are wheelchair accessible, up to the point of boarding (except Tomorrowland Transit Authority and Swiss Family Robinson Treehouse, where guests need to be ambulatory).
Some lines are not ECV accessible and require a transfer to a wheelchair or walking. Each transfer takes some energy.

5) Some attractions do have accessible ride cars where a guest using a wheelchair can stay right in the wheelchair for the attraction. For example, riding the wheelchair accessible ride car for Small World or Jungle Cruise may be easier or him than making the transfer to the ride car.

6) Also, most ride seats are hard plastic. Some previous posters mentioned getting a cushion for a wheelchair to make it more comfortable for sitting. With a cushion, he may find it more comfortable to sit in a wheelchair for rides than sitting on the hard plastic ride seat.

You can find more information about which rides require a transfer from an ECV and which have wheelchair accessible ride cars in the disABILITIES FAQs thread near the top of this board.

Hope you end up having a successful trip, full of new memories.