Traveling with a child on chemo

[mysevendwarfs]

Hi! I am looking for some information on our upcoming trip with dd who is currently under treatment for brain tumor. We cancelled this trip last year as she was too sick and rescheduled before she was fully diagnosed. She is actually doing quite well on her chemo regime and her counts are good, but I am worried about her stamina, her immune system and her ability to stay seizure free in the heat. Doctors have cleared her to go. We are so happy as this looked so unlikely in January. She is eligible for a wish trip, but this was already planned, so off we go! Anyone have any experience going to Disney without a wish organization?

We have a group bigger than 5 for the GAC as we have 7 kids. While we don't have to ride everything together, the big ones love being with the little ones. Ideas on how to handle the above concerns?

I so appreciate all I have read before posting. Thanks!

 

[cm8]

Hi! I am looking for some information on our upcoming trip with dd who is currently under treatment for brain tumor. We cancelled this trip last year as she was too sick and rescheduled before she was fully diagnosed. She is actually doing quite well on her chemo regime and her counts are good, but I am worried about her stamina, her immune system and her ability to stay seizure free in the heat. Doctors have cleared her to go. We are so happy as this looked so unlikely in January. She is eligible for a wish trip, but this was already planned, so off we go! Anyone have any experience going to Disney without a wish organization?

We have a group bigger than 5 for the GAC as we have 7 kids. While we don't have to ride everything together, the big ones love being with the little ones. Ideas on how to handle the above concerns?

I so appreciate all I have read before posting. Thanks!

,when will you be traveling? here is the link to the FAQs regarding the GAC and different things. The GAC can be accommodating as far as party size at the discretion of the CM ( I think). I hope that you all have a wonderful trip! And


http://www.disboards.com/showthread.php?t=595713

 

[SueM in MN]

Post #6 of the disABILITIES FAQs thread is about Guest Assistance Cards. That thread is near the top of this board or you can follow the link in my signature to get there. You bring the child with you to Guest Relations and explain her needs.
For stamina, it is important to realize that most of your time in the heat and walking will NOT be in lines/attractions and will be just getting from place to place. Most people walk at least 3-9 miles a day at WDW.
So, a wheelchair (if it is an older child) or a stroller (for a younger child) will be very important.
There is information in post #2 of the disABILITIES FAQs thread about places to rent wheelchairs and special needs strollers. Keep in mind that the wheelchairs that can be rented in the parks are adult size and would not be that comfortable for a 'non-adult' size child. If you are using a stroller, you can get a sticker/GAC message that would allow you to use a stroller as a wheelchair. This means it can be taken into any buildings or queues the same as a wheelchair and you would not have to park it outside with the other strollers. It is important to keep in mind that using a GAC doesn't shorten the distance walked and some queues can be very long distance (for example, Soarin' at Epcot is 1/4 mile from the queue entrance to boarding and an equal distance to get out).

The 'usual' number for a GAC is 6 (5 plus the person with a disability). The CMs at Guest Relations are able to make allowances for situations like yours - obviously, you would not leave out one child.

There are situations where you will have to split into smaller groups because of the number that can go on one ride car. For example, in Toy Story Mania at the Studio, the usual ride car that stops at the accessible boarding area has only room for 6, unless several of the kids are quite small and would sit 3 to a seat rather than 2.
So, be prepared to split up if asked and understand that when they ask you to, it is usually a space reason.

 

[Wee Annie]

Hi!

Just letting you know that we just returned from WDW with my youngest who is on chemo (and has been since 11/08). Since it was her wish trip, I can't answer some of your specific questions. But I can let you know our experience in the parks. Don't know how old your daughter on chemo is, but definitely get the "stroller as wheelchair" stamp for your GAC and use it. Silly us didn't use it in the beginning at times, and ended up carrying my daughter (turned 4 on the trip) through some lengthy lines. SO much easier to bring the stroller into the lines. The chemo (as you know) really does reduce their stamina, and makes my daughter achy and nauseous too. Take LOTS of breaks, and use the first aid stations when needed.

Also, we spent a few nights at the end on-site and, if you will be staying on-site, I would recommend you request a special cleaning of the room(s) because of your daugher's weakened immune system. I know we are exposing our children to germs out in the parks, but it made me feel much better to know that the rooms in which she was resting and slept had been cleaned very well before our arrival.

Btw, my "cancer child" did not get sick on the trip. Instead, one of my other daughters had a fever and felt miserable for a bit! And the immuno-compromised one never got it!

We went early in the mornings before it would get too hot. I would suggest you do the same if you are worried about heat. Would cut down on crowds, too!

Good luck!

 

[SueM in MN]

You may want to check into TourGuide Mike or Ridemax. A lot of people have found that using a planning service like that really helps more than having a GAC.
The GAC will only help in lines, while the planning services can help you to be in the quietest park at the quietest times. Many people have posted that their waits using TourGuide Mike were never longer than 10 minutes.

(Tour Guide Mike is a sponsor of the Theme Parks Board and you can find a link at the top of that board).

 

[jt'smom]

i don't have anything to add, but as an adult myself battling a brainstem glioma, i just wanted to express my admiration and prayers for your daughter

i hope she has the most wonderful, magical trip ever and i hope mom & dad and siblings do too

 

[a1tinkfans]

OP and jt'smom: I just want to wish you all the very best!!!

 

[mysevendwarfs]

Thanks so much for the information and kind posts ! to Wee Annie and jt'smom

Hi!

Also, we spent a few nights at the end on-site and, if you will be staying on-site, I would recommend you request a special cleaning of the room(s) because of your daugher's weakened immune system. I know we are exposing our children to germs out in the parks, but it made me feel much better to know that the rooms in which she was resting and slept had been cleaned very well before our arrival.

Btw, my "cancer child" did not get sick on the trip. Instead, one of my other daughters had a fever and felt miserable for a bit! And the immuno-compromised one never got it!

Sorry your dd was sick, but so glad it wasn't your dd on chemo! We have dodged many hospital trips when the whole family caught something except our chemo girl! I am going to request the special cleaning. Do they charge extra for this?

I have also decided to rent a stroller. DD is 9, but about the size of a 6 year old. She is just a little too big for our stroller so we are considering renting a special needs stroller so she can recline as opposed to a wheel chair.

Great advice on Tour Guide Mike, SueM in MN. We used him our last trip and are signed up again. It really cut down on the crowds for us!

 

[Wee Annie]

Thanks so much for the information and kind posts ! to Wee Annie and jt'smom



Sorry your dd was sick, but so glad it wasn't your dd on chemo! We have dodged many hospital trips when the whole family caught something except our chemo girl! I am going to request the special cleaning. Do they charge extra for this?

They did not charge anything for this cleaning, as it was medically necessitated. I only learned of it from these boards! It took a little extra time for our room to be ready, but I considered it worth it. Just call and tell them you are traveling with a child on chemo who is immuno-compromised, and are requesting a special cleaning of the room before your arrival. It's good for peace of mind, if nothing else (and probably good for a lot more!).