Traveling to WDW with a kiddo on chemo

[disneymommy78]

Hi all!

We are seasoned Disney vets (AP holders and DVC members), but have not taken a trip to the World since our DD 13 was diagnosed with leukemia. We have a trip planned March 31 to April 7 of 2012 which was planned with the blessing of our oncos. She will be in LTM by that point, so will only be on her oral weekly 6-MP and once weekly oral MTX. Her trip is not planned so that it will fall on her monthly clinic appointment.

We are planning early, since we know we will have to tour quite differently. She has neuropathy and bone damage from the chemo, so she wears AFOs and uses a transport chair for long distances. It looks sort of like a stroller, so I'm not sure of the protocol for using that in lines.

Also, some of the chemos make her sensitive to the sun, so we know to load the sunscreen and spend early mornings in the parks as well as take rest breaks.

Has anyone here toured the parks with a kid on chemo? Do you have any suggestions to make the trip a great one?

 

[mysevendwarfs]

Sorry my post is so long.

We too are DVC members. We traveled last summer to Disney with DD who is on chemo for a brain tumor. It was not our wish trip, so I had concerns about lines, wheelchairs, sun, etc. I rented DD a special needs stroller with a large canopy. We used the Stroller as a wheelchair tag that is offered at guest services. This allows you to use the stroller in the lines that have wheelchair access. There are a few places that might involve some walking. You can also get a Guest Assistance Card. There are details on the top of the disabilities thread. I liked using the stroller because she was out of the sun and could rest at her leisure. If your chair does not have a sun shade I would suggest you find something that will attach to it. Our PT recommended those clip on umbrellas that are available.

We kept a pretty good pace for the week, but we also knew we could head back to our room at AKV for a rest whenever she tuckered out. Since she was on chemo, I also asked for a special cleaning of the room. I don't know how different this is from a regular cleaning, but I figured it would be more thorough. I know that the staff paid special attention to our room.

We planned a lot of things outside of the parks. We did Hoop De Doo Revue, DD did a princess tea with grandma and some resort meals. We spent a day just hanging out at the pool and fun stuff around Disney.

I also brought a lot of hand sanitizer and sanitizing wipes to use after the rides. We had pediatric masks as well, but she didn't really need them as her counts weren't awful. We did have to have a shot right before our trip to bring her counts up. I brought her medical records, MRI, count reports, just in case. Arnold Palmer Children's hospital is not far from Disney so that made me more comfortable. I also had a letter written from her doctor with her recent note as well. We also had the name of a dr. that trained previously at our hospital and was in Orlando.

We had such a wonderful trip even within limitations we weren't used to that she chose to come back on her wish trip this year. We just tried to maximize the time we had in the parks. I joined Tour Guide Mike to help decide which parks would be less crowded. Our dd doesn't do well in the a.m. so we slept in some days. We had a big group, but still having some flexibility made it great for everyone.

Will your DD be making a wish? If she is interested in Disney, you should check out Give Kids the World and some of the wish trip reports.

I hope that your daughter does well this year and that looking forward to a trip to Disney will bring your family much joy.

 

[jmartinez1895]

Go to guest services and they will give you a GAC that allows strollers as wheelchairs. You will be able to take it in all the lines. Our son has immuno issues. We took Clorox wipes for all the tables and brought his place mat as well. We also uses hand sanitizer and face mask when in buildings. The brand we use has Disney characters on it so they are perfect for the World.

 

[SueM in MN]

Sorry my post is so long.

We too are DVC members. We traveled last summer to Disney with DD who is on chemo for a brain tumor. It was not our wish trip, so I had concerns about lines, wheelchairs, sun, etc. I rented DD a special needs stroller with a large canopy. We used the Stroller as a wheelchair tag that is offered at guest services. This allows you to use the stroller in the lines that have wheelchair access. There are a few places that might involve some walking. You can also get a Guest Assistance Card. There are details on the top of the disabilities thread. I liked using the stroller because she was out of the sun and could rest at her leisure. If your chair does not have a sun shade I would suggest you find something that will attach to it. Our PT recommended those clip on umbrellas that are available.

We kept a pretty good pace for the week, but we also knew we could head back to our room at AKV for a rest whenever she tuckered out. Since she was on chemo, I also asked for a special cleaning of the room. I don't know how different this is from a regular cleaning, but I figured it would be more thorough. I know that the staff paid special attention to our room.

We planned a lot of things outside of the parks. We did Hoop De Doo Revue, DD did a princess tea with grandma and some resort meals. We spent a day just hanging out at the pool and fun stuff around Disney.

I also brought a lot of hand sanitizer and sanitizing wipes to use after the rides. We had pediatric masks as well, but she didn't really need them as her counts weren't awful. We did have to have a shot right before our trip to bring her counts up. I brought her medical records, MRI, count reports, just in case. Arnold Palmer Children's hospital is not far from Disney so that made me more comfortable. I also had a letter written from her doctor with her recent note as well. We also had the name of a dr. that trained previously at our hospital and was in Orlando.

We had such a wonderful trip even within limitations we weren't used to that she chose to come back on her wish trip this year. We just tried to maximize the time we had in the parks. I joined Tour Guide Mike to help decide which parks would be less crowded. Our dd doesn't do well in the a.m. so we slept in some days. We had a big group, but still having some flexibility made it great for everyone.

Will your DD be making a wish? If she is interested in Disney, you should check out Give Kids the World and some of the wish trip reports.

I hope that your daughter does well this year and that looking forward to a trip to Disney will bring your family much joy.

The information about Guest Assistance Cards is in post 6 of the disABILITIES FAQs thread, which is located near the top of this board ( or you can follow the link in my signature). A stroller used as a wheelchair is handled just like a wheelchair and can be brought into lines and shows just like a wheelchair is.
The card or stroller as a wheelchair sticker are used for strollers that might be mistaken for a stroller.
A 13 yr old's transport wheelchair is not likely to be mistaken for a stroller, so you should have no problem with taking it into lines and shows. A lot of people do use transport wheelchairs, so your daughter's won't be unusual.
The 2 differences between a 'traditional' wheelchair and a transport wheelchair are:
1) most of the attractions that have wheelchair accessible ride cars are made to hold traditional wheelchairs and a transport chair may not fit.

2) one of the advantages of transport wheelchairs is that they are lightweight and easy to transport in a car trunk. Most are not designed for transport in a bus, tied down, so you may need to fold it and hold it if you plan to use the buses. You would still be able to use the ramp or lift at the back on the back of the bus.


I second the advice about checking into Give Kids the World. There is a Wish Tripper's thread near the top of this board. Even if she is not going to go on a Wish trip, you would be able to get some good hints about going to WDW on chemotherapy.

 

[disneymommy78]

Sorry my post is so long.

We too are DVC members. We traveled last summer to Disney with DD who is on chemo for a brain tumor. It was not our wish trip, so I had concerns about lines, wheelchairs, sun, etc. I rented DD a special needs stroller with a large canopy. We used the Stroller as a wheelchair tag that is offered at guest services. This allows you to use the stroller in the lines that have wheelchair access. There are a few places that might involve some walking. You can also get a Guest Assistance Card. There are details on the top of the disabilities thread. I liked using the stroller because she was out of the sun and could rest at her leisure. If your chair does not have a sun shade I would suggest you find something that will attach to it. Our PT recommended those clip on umbrellas that are available.

We kept a pretty good pace for the week, but we also knew we could head back to our room at AKV for a rest whenever she tuckered out. Since she was on chemo, I also asked for a special cleaning of the room. I don't know how different this is from a regular cleaning, but I figured it would be more thorough. I know that the staff paid special attention to our room.

We planned a lot of things outside of the parks. We did Hoop De Doo Revue, DD did a princess tea with grandma and some resort meals. We spent a day just hanging out at the pool and fun stuff around Disney.

I also brought a lot of hand sanitizer and sanitizing wipes to use after the rides. We had pediatric masks as well, but she didn't really need them as her counts weren't awful. We did have to have a shot right before our trip to bring her counts up. I brought her medical records, MRI, count reports, just in case. Arnold Palmer Children's hospital is not far from Disney so that made me more comfortable. I also had a letter written from her doctor with her recent note as well. We also had the name of a dr. that trained previously at our hospital and was in Orlando.

We had such a wonderful trip even within limitations we weren't used to that she chose to come back on her wish trip this year. We just tried to maximize the time we had in the parks. I joined Tour Guide Mike to help decide which parks would be less crowded. Our dd doesn't do well in the a.m. so we slept in some days. We had a big group, but still having some flexibility made it great for everyone.

Will your DD be making a wish? If she is interested in Disney, you should check out Give Kids the World and some of the wish trip reports.

I hope that your daughter does well this year and that looking forward to a trip to Disney will bring your family much joy.

Thanks for all the input! This trip is not DD's Wish trip. She has been qualified for a wish, but we have not gone through the interview process yet as she wants to wait until she officially decides what she wants to do. This trip is really just to bring some life into our family and give us the kick to get through the next part of her treatment (she will be on treatment until April 4th of 2013, so we have a little under two years to go!).

I will definitely check out the FAQ thread. Her chair is a Convaid Cruiser and has a sunshade attached to it (we just added it to it for the summer).

I am already obsessive about hand sanitizer and wiping things down, so we will definitely continue that trend while down there. I also will bring masks with us, but hopefully we won't have to use them. Thanks for the input about Arnold Palmer. It is nice to know that a hospital is there if needed.


Sue,

As for needing her chair for buses, she has no problem transferring. It is mainly nerve damage from chemo that has caused her difficulty with walking/standing for long distances, but she doesn't need to stay in her chair for rides.

She is teeny tiny for her age ( 5 ft and about 80 pounds), so her chair is a Convaid Cruiser - pic should be below, hopefully. It's advertised as a pediatric special needs stroller and looks strollerish, but maybe with her being older it won't be confused with a stroller.

I'll definitely check out the wish thread as well.

 

[SueM in MN]

Thanks for all the input! This trip is not DD's Wish trip. She has been qualified for a wish, but we have not gone through the interview process yet as she wants to wait until she officially decides what she wants to do. This trip is really just to bring some life into our family and give us the kick to get through the next part of her treatment (she will be on treatment until April 4th of 2013, so we have a little under two years to go!).

I will definitely check out the FAQ thread. Her chair is a Convaid Cruiser and has a sunshade attached to it (we just added it to it for the summer).

I am already obsessive about hand sanitizer and wiping things down, so we will definitely continue that trend while down there. I also will bring masks with us, but hopefully we won't have to use them. Thanks for the input about Arnold Palmer. It is nice to know that a hospital is there if needed.


Sue,

As for needing her chair for buses, she has no problem transferring. It is mainly nerve damage from chemo that has caused her difficulty with walking/standing for long distances, but she doesn't need to stay in her chair for rides.

She is teeny tiny for her age ( 5 ft and about 80 pounds), so her chair is a Convaid Cruiser - pic should be below, hopefully. It's advertised as a pediatric special needs stroller and looks strollerish, but maybe with her being older it won't be confused with a stroller.

I'll definitely check out the wish thread as well.

I'm familiar with Convaid Cruisers (I tell people I am fluent on special needs equipment LOL).
the smaller sizes of Convaid Cruisers could easily be mistaken for a regular stroller.
Being that big, her Convaic Cruiser probably would not be, but you can always get a tag just to make sure.

Your DD is actually about the same size as my yougest DD, who is fully grown. Her height is 5 feet and her weight varies between about 82 and 86.

 

[disneymommy78]

I'm familiar with Convaid Cruisers (I tell people I am fluent on special needs equipment LOL).
the smaller sizes of Convaid Cruisers could easily be mistaken for a regular stroller.
Being that big, her Convaic Cruiser probably would not be, but you can always get a tag just to make sure.

Your DD is actually about the same size as my yougest DD, who is fully grown. Her height is 5 feet and her weight varies between about 82 and 86.

Sue,

Thank you so much for the clarification! I really appreciate it!

I do have another question that you might be able to answer. Two of the different chemos that DD is on have obliterated her GI tract. She has been pump fed via g-tube since about two months post DX. She is just now slowly reintroducing real food, but has always been picky and has had a low appetite. I know that at TS/CS locations she can order off the kid's menu. However, will we still have to pay adult price at buffets even though she will probably eat very little?

 

[Cheshire Figment]

I do have another question that you might be able to answer. Two of the different chemos that DD is on have obliterated her GI tract. She has been pump fed via g-tube since about two months post DX. She is just now slowly reintroducing real food, but has always been picky and has had a low appetite. I know that at TS/CS locations she can order off the kid's menu. However, will we still have to pay adult price at buffets even though she will probably eat very little?

Officially the answer is yes. However, when you get in politely talk to the server, and possibly the manager, explaining the situation. There is always a probability that they will only charge the child fee.

And it is better to ask at the start of the meal; to an extent the server can verify that she is eating very little.

 

[disneymommy78]

Officially the answer is yes. However, when you get in politely talk to the server, and possibly the manager, explaining the situation. There is always a probability that they will only charge the child fee.

And it is better to ask at the start of the meal; to an extent the server can verify that she is eating very little.

CF,

Thank you for the heads-up.

We are only planning on two (or possibly only 1) buffet meal, so we will go in with the mindset that we will have to pay adult price. However, we will ask politely and see what happens.