child on chemo at WDW

[apes666]

Hi,
I am new to the DISboard and my 6 yr old son was recently diagnosed with a brain tumor. He had the surgery last week and will begin a year of chemo next week. We have planned WDW and the cruise for August. The doctorsare going to implant a central line port beneath his skin to make therapy easier for him and will conveniently work around our schedule for our trip so we don't have to cancel or reschedule. But I'm concerned about his stamina with the lines and heat. I have read many different rumors about GAC and want to know if they will accomodate his needs or if this is going to end up a miserable trip for him. Can anyone give me definative answers or point me in a direction where I can find them. We already decided a wheelchair will be a good option for him to be able to rest if he needs to. But the length of the days and sitting in those lines has me worried...
Thanks in advance,
April

 

[Schmeck]

Wouldn't his immune system be dangerously low on chemo? Sounds very risky to me, but the doctors know much better, I guess.

The GAC would allow you to use a stroller as a wheelchair in lines (wouldn't that be more comfy than wheelchair, especially if it reclines and has a sunshade?) and would let you wait out of the sun, etc, for your turn to ride.

The GAC isn't made to shorten your wait in line - only Make a Wish does that. There are many here more knowledgable than I am about the GAC, and I'm sure they can help.

My thoughts and prayers are with your family, and I hope you have a wonderful trip!

 

[Sue & Co.]

I would definitely agree that a stroller would be more comfortable than a wheelchair unless you can get one off site that is specific to his measurements. All you would need then is a GAC to use the stroller as a wheelchair so that you can take it in line with you.

I realise that you are all looking forward to this trip but you may want to reconsider postponing until his treatment is finished. Even if he is between therapies he will still be affected by them and would probably not enjoy it as much as he would when he is recovered. Having said that you know your own family best so can best judge what is most suitable for them.

Best wishes

Sue

 

[SueM in MN]

I agree with the others. Your family will need to decide with your child's doctors whether or not a trip in August is going to work out or not. One thing to consider is that even with a GAC that might allow him to wait in a cooler place, August in Orlando is very hot and humid and you would be spending more time outside than in lines or attractions. The heat and humidity can affect the stamina of people without special needs if they are not used to it.
WDW will accomidate your child's needs, but as was already pointed out, a GAC doesn't give front of the line access and doesn't necessarily give a shorter wait (although it may). It was designed as a tool to let CMs know what type of accomidation is needed. When asking for a GAC, you need to be as clear as possible about the needs; if you just say he is getting treatment for cancer, that doesn't help the CM in Guest Services to see what his needs are. If you haven't yet, check out the disABILITIES FAQs thread for more information about GACs. Or you can PM me.

If you go, I'd suggest going as early as possible in the day to the parks. It will be cooler then and the lines are MUCH shorter. As the morning goes on, things get busier. My DH and I have gone in July (about as busy as August) at park opening and were able to get on everything in Fantasyland (except Dumbo and the Teacups - I don't do well with spinning) without waiting for more than 10 minutes for anything. Some things we even went on 2 or 3 times. Then we headed to Haunted Mansion and over to Adventureland, where we went on 2 things with short waits. By 11, we had been on everything we planned to do that day and broke for lunch. He has done the same thing with our oldest DD and guests during Spring break (much busier than summer).

I also agree with the suggestion of using a stroller or a pediatric wheelchair. For a 6yr old, an adult wheelchair will not be very comfortable; the arms are too high, the seat is too wide and too long. You might be able to work with the hospital where he is getting treatment (Nursing or Social Work) to check into whether there is a lending closet in your area for things like special needs strollers (basically like a large umbrella stroller) or pediatric wheelchairs. There was a recent post asking about renting those - I'll try to find it and post it here.

 

[apes666]

Thank you very much for the insight. I have no idea what to expect from treatment. We started planning this trip last fall. Who knew our lives would be turned upside down by winter. The doctors seem to think that he will do fine for vacation but I just don't know. I don't want to dissappoint him by canceling but I don't want to go if he will be miserable. I'll have to wait and see how the next several weeks go to decide. The stroller sounds like a fantastic idea and I didn't know they made things like that so thanks for the tip. Maybe changing just to the cruise would be more his speed. We could always go after treatment. He is eligible for Make a Wish. Maybe they can help us...
Thank you so much,
by the way what does DD mean? I don't understand many of your abbreviations.
April

 

[SueM in MN]

by the way what does DD mean? I don't understand many of your abbreviations.
April

DD= Dear Daughter or Disney daughter (I never knew which one). After a while you sart to pick up the abbreviations people use.

Hope things go well for your family.
Just doing the cruise might be, as you said "more his speed". You have quite a while to decide yet though.
Here's a whole bunch of pixie dust for a great time, whatever you decide to do and for getting thru the treatment successfully.

 

[Sandcass]

just sending out a hug for you. My nephew is having surgery to remove a brain tumor on Thursday. I can only imagine what you have been thru.

Why not put the vacation on hold until he's 100%?

 

[alisonbestford]

I would try and take one day at a time and see how your son copes with his treatment

Everyone fairs differently to chemo, radiotherapy and even surgery
IMO don't rush to cancel just in case he doesn't feel 'up to it'.
August is a long time away and you will have plenty of time to access his progress

My husband has lived with a brain tumour (benign but they are unable to remove it all so he has to continuously battle with fatigue, pain etc) for 14 years now.
We just take our trips as they come and plan very little that is definite.
One thing that is definite though is that we always have a fantastic time and return home relaxed and ready to deal with whatever life is going to throw at us, carrying a whole load of incredible memories in our heads

If he wants to go, you all feel confident that you all can manage it (remember that this is about you all, not just your son, so take care of yourselves too) and the doctors agree, I say go and have a wonderful time
It might turn out to be a different, more relaxed type of holiday than you originally planned but I doubt you'd ever regret going

 

[chirurgeon]

I started it last week. It isn't the most convenient thing in the world. I can't shower. I have to take baths, wash my hair in the kitchen sink. The only saving grace is I get 2 days off each week. If your son is going to be on it constantly, you might want to consider changing your trip. He won't be able swim or do any water things.

Once I finish the first 5-6 weeks of chemo, I will be on one week off the next for a total of 12 weeks of chemo, after I have surgery in a couple months. I had initially thought I could do Disney with the pump, but quickly changed my mind. Get all the timing from his doctors and then make your decision.

Prayers and

Kim

 

[LauraAnn630]

I do not know your whole story. I would NOT cancel the trip. I would make sure to get INSURANCE on it just incase.

If you are able to go, just make the very very best of it.
I do NOT mean to upset you. It is awful that terrible things like this happen to children. Right now you do not know whats going to happen. Im sitting here trying to figure out a way to say this without upsetting you. With something as awful as this there isnt a good/easy way to say things.

Do everything you can with him as much as he can tolerate and enjoy it. I dont mean at Disney, I mean everyday.

If you cancel the trip you might regret it.

I am starting chemo in April. I planned a Christmas trip. I dont know if Ill ever get to go back. I want to make sure we go this year! All of us together.

Im not worried about doing it all in Disney. I just want to spend time with my family having fun. No regrets!

I will be praying for your family. Good Luck! Keep us posted!

 

[alisonbestford]

I do not know your whole story. I would NOT cancel the trip. I would make sure to get INSURANCE on it just incase.

If you are able to go, just make the very very best of it.
I do NOT mean to upset you. It is awful that terrible things like this happen to children. Right now you do not know whats going to happen. Im sitting here trying to figure out a way to say this without upsetting you. With something as awful as this there isnt a good/easy way to say things.

Do everything you can with him as much as he can tolerate and enjoy it. I dont mean at Disney, I mean everyday.

If you cancel the trip you might regret it.

I am starting chemo in April. I planned a Christmas trip. I dont know if Ill ever get to go back. I want to make sure we go this year! All of us together.

Im not worried about doing it all in Disney. I just want to spend time with my family having fun. No regrets!

I will be praying for your family. Good Luck! Keep us posted!

I too was trying not to say anything upsetting whilst, at the same time, saying all that you have
I think you've managed it very well

Good luck with your own chemo and I hope you get to return to WDW

 

[SHSFire]

April,

Please contact your local make a wish agency. They might be able help with items you might need for your stay. Wish children often stay at Give Kids the World Village in Kissimee. GKTW offers activities, meals, snacks, parents night out, housing, and front of the line passes. It may be an option, I have visited GKTW village a couple of times as my cousin works there, it is a very nice place (Not depressing) the kids enjoy themselves and nobody gives them looks because they are bald, have a port, or use a stroller/wheelchair.

Good Luck. I have personally been through chemo and it DOES effect everyone differently.

Keeping you thoughts and prayers.

Julie

 

[apes666]

We scheduled the trip way back in September before any of this happened and we did buy insurance. He is scheduled to start chemo next week. The treatment will be once a week for a year with 4 weeks on and 3 weeks off. Our trip is set for August 10-20. He is having a infra-port implanted under the skin next week. This allows him the freedom to shower, swim, and even play football! Of course the thing that we don't know is how he's going to feel. We thank God everyday for giving us the easiest way through this by giving us this infra-port of course but we just don't know what to expect. I guess we'll really get a frip on this after the first 4 to 6 weeks. I haven't canceled yet and I'm hopeful that he will get through this without too much discomfort. He is strong and quite the fighter. Please let me know what you think.

 

[alisonbestford]

Please let me know what you think.

I say take each day as it comes and see how he feels as his treatment gets underway

A trip to WDW might be just the thing to keep his spirits up

 

[triplefigs]

Just wanted to wish you and your family huge doses of PD and to say you'll be in my prayers for a full and COMPLETE recovery.

 

[debbiemomto4]

April I am really sorry to hear about your ds(dear son). My ds had cancer at 20 mos. - tumor in neck- rhabdomyosarcoma- had chemo and radiation. Each chemo and response to it is different so you probably will see how it goes after 1 or 2 cycles. Children respond so differently then adults. There strength and willpower are incredible. His counts - white blood cells and platelets will probably dip down but if you have 3 weeks off your onc. will be able to play with the dates. I know at 6 years old they are looking forward to it sooo much. So to disappoint him is heartwrenching. We are going in Aug and my ds who's 3 1/2 yrs in remission now can't wait. Talk to your social worker she can arrange for you to get a pediatric stroller. - bigger than a stroller more comfier than a wheelchair. Trust me you will use that stroller often during the next year. Please im me and we can "talk". Its tough I know.
Prayers and wishes.
Debbie

 

[biancamouse]

It's been a few years back when we had a MAW trip for our then 6 yr old son. He was inbetween chemo treatments for his brain tumor. I seem to recall before we went we contacted a clinic there to have his blood counts taken. That would be the only other piece of advise I could think to give you.

I agree with Laura. You know your family best. Our personal experience was that it was wonderful, because that was our first trip and he fell in love with Disney (as did the rest of our family).