New here, my son has leukemia

[Merideth]

We are planning his FIRST trip to disney in two weeks.

He is just finishing this round of chemo, and depending on the outcome, will do another round and/or more aggressive treatment. My husband is a doctor, and had not considered the MAW program, since he feels the funds should be directed towards a family that are being overwhemed by med expenses, etc. HE did speak with MAW and they said he could make a donation after the fact, so he is now considering it, but it will not turn around this quickly, not for this trip.

Our son has asked to go to disney for the past year and a half (he is now 5) We are bringing him to Disney earlier than we had planned, because this may be the only time he will be able. I do not want any regrets, should we put this off, and it then never happens for him.

I have read all about the GAC, but if anyone whose child has cancer has posted, I have missed it, ( though I just found this board today.) The mobility/stamina issue is an understatement is his case. He is weak and fragile, will require a wheelchair, will go back to the hotel for naps frequently.

Does anyone have any experience with a GAC for a cancer child who is not in a MAW family? I would like for him to be able to experience as many attractions as possible, as we will most likely be leaving MK every hour (staying at Contemporary) so waiting in lines will really take away from his experience.

Hopefully no one (aside from MAW) has their own experience to share. Would not wish this on any child, but would appreciate any advice. I am calling disney tomorrow, but their responses are usually generic.
Thanks in advance!

 

[Cheshire Figment]

Hi and to both DisBoards and disABILITIES!

From your posting, it appears that you have seen the disABILITIES FAQs, especially Post #6 which deals with the GAC.

As you have been talking with your local MAW group, they may be able to do some coordination with GKTW which will allow you to get the special GAC and MAW buttons even though not participating; they can provide the verification to GKTW.

Otherwise when you get to your first park go to Guest Relations and discuss the needs; you may have to talk with a supervisor there.

Don't forget the stroller as wheelchair, unless he has what is an obvious wheelchair.

And when he needs to rest at one of the parks, you can take him to First Aid to lie down for a while instead of taking him back to the room.

These are just some ideas off the top of my head. I'm sure others will chime in.

 

[ireland_nicole]

First of all, Welcome! I think Cheshire Figment covered a lot, personally, I'd recommend a stroller or special needs stroller depending on his size with a really good sunshade (no I don't work for them, but I've rented from orlandostrollerrentals.com and I love their strollers, the best sunshades around, and super comfy with a great recline).

Even though you're not on an official wish trip, it might be a good idea to talk to the wish parents on their threads and get practical info and advice.

I think what you're doing is wonderful, I just know he's going to love Disney. I'm sorry that I can't do much for you right now that's useful, but please ask any questions or post anything. We're here to listen, and hopefully, to help.

 

[Wee Annie]

Merideth,

My daughter (3) has leukemia too. She was 2 1/2 at diagnosis last November, and we had had a WDW trip planned for her third birthday last April. Unfortunately, the drs absolutely nixed that idea, as she was either in-patient or being seen at the hospital several times per week at that point (was within 6 months of diagnosis), and would have been absolutely unable to travel.

When was your son diagnosed? I gather he is at a point in treatment where the drs are okay with him leaving for a bit.

We are planning on a trip to WDW this coming April (trying again), for my daughter's 4th birthday, but are going through MAW. Even though she will be almost a year and a half into treatment, she will still be on daily chemo meds, so stamina will be a problem. We plan on getting a GAC to use a stroller as a wheelchair too (she also has osteoporosis and avascular necrosis -- dead bone in her femur -- as a result of the treatments thus far, as well as very painful neuropathy from the dreaded vincristine).

I would ask at your hospital -- the social worker or child life specialist there, perhaps -- if they have anything equivalent to the MAW "passes" to identify your child's life-threatening condition. I would also ask MAW if there is anything they can do to assist, even though your child will not officially be a "wish" child. It never hurts to ask, right?

I'm glad you chose the Contemporary for ease of transportation. We're splurging on the Poly for that very reason.

I am so sorry to hear of your son's diagnosis. It cuts like a knife everytime I hear of another child who must go through this, and another parent who must hear those unbearable words, "Your child has cancer." I don't know what type of leukemia he has, or his particular prognosis, but please do feel free to post here asking re anything (I have already started brainstorming Disney for next April -- it takes my mind off the long days at the hospital). Also feel free to PM me anytime.

Best,

Ann

 

[dclfun]

I'd consider talking with your MAW chapter. They can make a trip happen right away. Sounds like you will need the special benefits only given to wish children on their wish trip.---Kathy

 

[alizesmom]

One thing I have learned is that just because your child gets a wish, it doesn't take away from any other child. A GAC will not get you any special access, it will just make sure that accomodations are made for your son's needs. MAW GAC does not guarantee front of the line but it will get your son very special attention. We took our son 2 years ago and found the first aid stations were very willing to allow us to use them as a rest stop. Hope your trip is magical. Karen

 

[MarieS]

I just wanted to second the advice about using the First Aid stations at the parks for rest/naps so you don't have to spend so much time going back and forth to the resort. They have cots and partitions/curtains for privacy. They keep it relatively quiet too. My oldest has stamina issues and the breaks at First Aid really made a difference in our trip.

 

[Merideth]

We have spent the last few days at hospital so I am just now reading. Thank you ALL so very much for the welcomes, understanding and great advice, It is deeply appreciated.

I am checking out the WISH parent threads, not only good advice, but not feeling so alone, you know? Also thanks for the stroller info!

My husband is working with our son's oncologist to facillitate paperwork for MAW. Even though it won't be an actual trip (we want to keep things as normal and calm for him as possible and the Contemporary is not so "fun themed" as the GKTW) the forms will enable MAW to give him the necessary card/pin for GAC to understand what his current needs are.

WeeAnnie, He was diag 1 1/2 yrs ago. I truly empathise with your daughter's situation and the multiple issues due to treatment. The treatments do come at an expense, don't they? But what other choice do we have? NONE. We wish you all a happy, magical trip for her 4th BD You've earned it.

We are taking him now, only for 3 days, and for small spurts of MK time, because he shouldn't have had to do this extra chemo. Basically his body has stopped responding to his chemo treatment. NO, it's not an ideal time, but the only choice we have right now, if he is going to get to disney before the next step of treatment, which may not work out -- OH, it is so draining to think of what could happen. I am usually an optomist, this is testing me in the hardest possible way.
Since my husband is also a Dr, his oncologist knows that we will keep it simple and have access to O2, etc.

He is being worked up for stem cell transplant, if warrented, and once over the possible hump of GVHD, we could do the kind of trip every little boy should be able to do, whether it be through MAW with all the special fun of the GKTW environment, or just a regular family trip

The Contemporary is close, but if he falls asleep (or has trouble breathing) in his stroller, thanks for the first aid info. So many things I hadn't considered. My brain feels like a combo of overdrive, fried and mush.. Maybe my hubby has it all together, maybe not. His heart is hung out to dry too.

A friend asked me why post on a discussion board, when my husband has access to so much info. I said that it isn't all medical, it's personal too, and people who have "been there, done that" are who I need now too!

Again, THANKS. I will keep you updated, and If anyone thinks of any other good tips, please post.

 

[dclfun]

I hope you have a wonderful bit of respite and magic on this trip with your son. You all deserve it! I will never forget a little boy I met years ago during an evening when I worked at the entrance of MK. He was squirming around on crutches in a long line at the turnstiles and I went out to see if I could help. I offered to let him and his family through the gates right away...and there was no mention of using their tickets. He was 6 years old, had an NG tube in his nose, was bald, and a bit jaundiced so I knew his likely diagnosis, and he told me his leg was hurting. Turns out this family had made a last minute trip before surgery as he was to go home in a few days and have an amputation. The trip was was not via MAW and the w/c they had requested at CBR where they were staying was not in their room as promised so he had struggled on/off the bus and all the way to the entrance of the park. I got him a free w/c to use for the evening and several of us rushed to do what we could, providing a GAC, a plush ( his favorite character was Donald) and priority seating for the evening parade. We got the family drinks and snacks. When this family left the park, after closing, this precious boy asked me to kiss him. Can you tell he touched me immensely? His Mom pulled me aside to let me know that they had adopted him a year prior from a relative who had beaten him during his entire life, and that shortly after the adoption he developed an aggressive bone cancer. They were thinking that they might ask for a MAW trip to be possible after his surgery and I can only hope that he was able to take it. So, I'm glad MAW is helping with paperwork and a GAC for your son as it sounds as though he needs the extra assistance. I hope another CM is as fortunate as I was and gets to meet your son and help sprinkle some pixie dust. I'm sure your he will touch someone's life like the other little boy touched mine. I hope things work out well for you when you get home. I'll be wishing on a star for you.---Kathy

 

[Wee Annie]

Merideth,

glad to her MAW is assisting in helping you with any accommodations that may be needed for him during your trip.

So sorry to hear about what you are going through. Knowing that he's looking at a possible SCT, I totally understand why you want to take him now. I hope he is able to get out and experience some Disney Magic. If there's one thing that having a child with cancer has taught me, it's to live each day to the fullest, because you truly do not know what tomorrow will bring. I'm still working on it, of course, but my goal is to stop and smell the roses more often, and not sweat the "small stuff" (which I'm beginning to realize is most things in life, aside from family, good friends, etc). Sorry about the abundance of cliches, but they were what came to mind!

I hope that you, your husband, and your son can smell some roses while in Disney. You and your husband must need this as much as your son!

You all will be in my prayers.

Ann

 

[maroo]

Oh! I hope that you consider doing a full MAW trip sometime soon!

The trip you get with the MAW foundation is AWESOME and has so many benefits that just can't be purchased with money...One of the best being able to stay at Give Kids the World - which is THE MOST MAGICAL place on Earth. INCLUDING Disney!

It is Disney meets a real fairytale world...

Impossible to describe, honestly.

My dear friend is fairly well off...and they decided against doing a MAW trip for the same reasons you are citing...but they wish they had done it. Her daughter could have met a famous person or done a magical Disney vacation. And you can always "pay it forward" by donating to MAW and GKTW.

Below there is a link to the Wish Trippers Unite thread...There are many magical trip reports there. The link is blue!

 

[SueM in MN]

Does anyone have any experience with a GAC for a cancer child who is not in a MAW family? I would like for him to be able to experience as many attractions as possible, as we will most likely be leaving MK every hour (staying at Contemporary) so waiting in lines will really take away from his experience.

Hopefully no one (aside from MAW) has their own experience to share. Would not wish this on any child, but would appreciate any advice. I am calling disney tomorrow, but their responses are usually generic.
Thanks in advance!

I'm glad to hear that you will be able to work thru MAW to get some of the accommodations that are only available on a WISH trip.

I know that someone already recommended First Aid. I wanted to post some pictures of the First Aid facilities for you and to encourage you to make use of First Aid for rests. They are not only there for injuries/sudden illnesses, but are there for anyone who has a need to rest.
Here's a picture of one of the rooms at First Aid in the Studio (one of the nicest):

And, this one of the First Aid at MK - not all the rooms have 2 cots like this:

Going back to Contemporary may sound quick, but it can be a 10-15 minute walk from the area of the park you are in to get to the front of the park, then it is about a 10-15 minute walk back to the Contemporary and another few minutes to get back to your room. Add that all up and it can easily take 30-40 minutes just to get back to the room. Then (if you can get him to rest), it will take you almost that long to get back into the park (going thru security screening and the turnstiles). The 'cost' of going back to the resort is probably not worth the amount of rest he will get.
Going to First Aid will be much faster and you can take rests whenever he needs, without leaving the park (this can be a big 'selling point' to a 5 yr old, because not leaving the park means he will be able to go and have more fun after he rests). I can tell you from personal experience that the First Aid staff are some of the nicest CMs in the park and they will make you and your child feel welcome.

I have not read much about this recently, but MAW also had some special lounges at the parks that only Wish families have access to. So, it is much more than just whether or not the family can afford a trip themselves. And, if those with more can give back, it benefits those who are not able to.

Hope you all have a magical trip.

 

[kazzy3]

I have no advice to offer except to take a good look at your precious boy's face and enjoy the magic in his eyes when you make his dream come true.

 

[Mouseaholic!!!]

There is magic there. If you are there a day or a month.

My friend found magic. Diagnosed with Multiple Myeloma, I promised to take her to WDW for Christmas. I BEGGED during Wishes that year for her to stay healthy enough to make the trip.

Sure enough, the 1 year anniversary of my first WISH, she was in remission and enjoying the Magic.

Go and surround your family with everything that is special there.

I will remember you in my prayers.

 

[FSUDisneyGirl]

When you all talk to MAW, ask about access to the Wish Lounge in the Magic Kingdom. It may be a great place for your son to take a rest every once in a while!

 

[Mskanga]

When you all talk to MAW, ask about access to the Wish Lounge in the Magic Kingdom. It may be a great place for your son to take a rest every once in a while!

You don't have to ask for access , wish families are automatically allowed to use them. We used the one in disneyland for my daughter and it was a godsend.

dclfun , my daughter also had bone cancer and I can assure you that just by getting that child a wheelchair you made a world of a difference to them . Thank you for being so kind.

 

[melisandes]

I just wanted to share and give you hope. My husband was diagnosed with All at around 2 years old. He has been cancer free for close to 30 years. We even have kids together.

I think what you are all doing for your kids is just so amazing. I know DH talks about his trip to Disney as a child with so much happiness. It is why we are pass holders. He always remembers how happy the park made him at such a scary time in his life. Yeah there was only one park when he was sick.

 

[Bugsmom73]

You have gotten great advice here and I hope this happens.

BTW, you have a great name. My DD is a Meredith.