Chronic Leukemia

[TwoMisfits]

So, I was just diagnosed last week (when this normally hits men in their 70's - hurray for me), and now the spouse is considering doing a theme park trip for the kids while I'd be in a "good phase." Well, with cancer, the mind thinks, is there something that helps?

And my mind says, yes...all the current covid protections are perfect for me, and I wouldn't need further accomodation (I don't think...although ask me in 6 months). However, they may not last.

So, post-Covid, is the DAS approved for someone who shouldn't be in crowded spots, who shouldn't wait next to tons of random folks in long lines, who shouldn't sit next to random someones shoulder to shoulder in shows, but needs to have a semi-bubble for health (aka - forget Covid - the dang common colds could kill me since my immune system does not function correctly). I mean, this isn't mobility, but neither is it behavioral...so, is it accomodated, or should I plan a much sooner trip during Covid (although I still need to wait to get fully genetically typed and CAT scanned and make sure they didn't want to do treatment sooner vs later, so we'd still be talking 2021)...

This is posted just so I know, since I have no plans yet on the table...

 

[OurBigTrip]

The DAS is for those who due to a disability can’t wait in a standard queue. CMs won’t ask about and don’t care about diagnosis; you need to be able to explain why you can’t wait in an actual standby line.

You’ll still need to wait in the FP line when you go to the attraction, so you might want to consider using family members to build a bubble around you.

DAS won’t do anything for seating in shows, that would be handled by the CM at the entrance to the show. However, I would plan on having family members sit on either side, as I’m not aware of anything that would have CMs putting you off to the side alone or leaving seats empty around you .

 

[bookwormde]

So, I was just diagnosed last week (when this normally hits men in their 70's - hurray for me), and now the spouse is considering doing a theme park trip for the kids while I'd be in a "good phase." Well, with cancer, the mind thinks, is there something that helps?

And my mind says, yes...all the current covid protections are perfect for me, and I wouldn't need further accomodation (I don't think...although ask me in 6 months). However, they may not last.

So, post-Covid, is the DAS approved for someone who shouldn't be in crowded spots, who shouldn't wait next to tons of random folks in long lines, who shouldn't sit next to random someones shoulder to shoulder in shows, but needs to have a semi-bubble for health (aka - forget Covid - the dang common colds could kill me since my immune system does not function correctly). I mean, this isn't mobility, but neither is it behavioral...so, is it accomodated, or should I plan a much sooner trip during Covid (although I still need to wait to get fully genetically typed and CAT scanned and make sure they didn't want to do treatment sooner vs later, so we'd still be talking 2021)...

This is posted just so I know, since I have no plans yet on the table...

immune compromised individuals are covered by ADA so yes you should qualify. During and post treatments, you may also have stamina limitations.

While there are no guarantees, there is a reasonable good chance of periods of remission where both your immune and stamina will be closer to typical so that would be the best path. A deep conversation with you doctors should yield the best guidance, once you have a treatment plan mapped out.

 

[lanejudy]

The first post of this thread explains DAS at WDW (similar at the California parks, but we do have a separate thread for it).

Basically, you'll have to explain your needs as related to waiting in a standard queue environment. I'd also consider what you may due while waiting for the return time, as there is no designated or uncrowded waiting area. Instead of in the queue exposed to just the few around you, you'll be out in the masses - at dining, shopping, people-watching, another attraction, etc. (Of course, crowd levels dependent upon capacity limitations in place at the time.) The DAS won't do "everything" for you, so I suggest you plan your own accommodations as well -- family creating a protective bubble, protective clothing, mobility device, etc. DAS doesn't have any bearing at restaurants.

A friends' DH was diagnosed several years ago in his mid or late 50's and while he had a really rocky point at one time, he's doing well now probably 5-6 years later and quite active in his early 60's. Hopefully that gives you encouragement.

 

[AJKMOM]

When my father was diagnosed with CLL, he was obsessed with having "leukemia", but the doctor said it was secondary to anything else he had.

 

[TwoMisfits]

[Q

When my father was diagnosed with CLL, he was obsessed with having "leukemia", but the doctor said it was secondary to anything else he had.

Yeah, it pretty much seems to be "the incurable cancer that won't kill you...but everything else you get b/c your immune system sucks will"...which I can live with. I can let pretty much my whole community know so the sniffles stay away from me (it's where the spouse and I differ - I'm a big believer in open and honest for everything, and he's not...but as I pointed out, for this, it's like an absolute necessity...now that everyone knows in my friend/family/acquaintance group, they can act to help keep me safe vs never knowing if they were making things worse until they were worse b/c someone showed up with flu symptoms that they thought were no big deal the 1st day of the illness or they show up with a kid still coughing to his class b/c it's been 48 hours and my spouse brings that home to me)...heck, I tell my "message board" friends, too, if only b/c everything you're doing for Covid makes living life now perfect for me...so, especially on the "stay home if you feel off" (b/c that's the most important one, plus the hand washing), if everyone could do that forever, I'd appreciate it...and I'm sure other leukemia patients would, too...

It means I also now know why I'm tired when I shouldn't be...and why I developed crazy food allergies after illnesses which isn't normal...b/c my immune system just isn't normal anymore (my allergist is gonna now have a field day next month).

I have told my kids I'm as good today after the diagnosis as before it (b/c I've lived through the fatigue, slow healing and taking forever to get better from illnesses, and weird allergic/digestive issues for about 18 months...which is about the amount of time my hemo thinks I've had this - he thinks my primary care missed it in my prior blood test, since I wasn't "exhibiting any symptoms yet" so it wasn't a priority - and b/c as a female in their early 40's with zero family history, this is a "rarer than me dying of Covid" diagnosis, so I refer to it as a jackpot diagnosis (although not the kind I'd want to win, but who knows - maybe someone has a higher plan)...

But mom is still mom...but now, if you get sick, get dad...that's about the only change (other that tons of doctor appts and test) so far b/c Covid meant we were already doing practically everything else that needed changing...but we'll still be doing it after Covid...

 

[gap2368]

So, I was just diagnosed last week (when this normally hits men in their 70's - hurray for me), and now the spouse is considering doing a theme park trip for the kids while I'd be in a "good phase." Well, with cancer, the mind thinks, is there something that helps?

And my mind says, yes...all the current covid protections are perfect for me, and I wouldn't need further accomodation (I don't think...although ask me in 6 months). However, they may not last.

So, post-Covid, is the DAS approved for someone who shouldn't be in crowded spots, who shouldn't wait next to tons of random folks in long lines, who shouldn't sit next to random someones shoulder to shoulder in shows, but needs to have a semi-bubble for health (aka - forget Covid - the dang common colds could kill me since my immune system does not function correctly). I mean, this isn't mobility, but neither is it behavioral...so, is it accomodated, or should I plan a much sooner trip during Covid (although I still need to wait to get fully genetically typed and CAT scanned and make sure they didn't want to do treatment sooner vs later, so we'd still be talking 2021)...

This is posted just so I know, since I have no plans yet on the table...

sorry to hear about your DX

with this said the DAS lets you wait outside the line for the amount of time the wait is minus 10 minutes you then go in the FP line The DAS pass might help you but it might not. as much as you would hope.


for show I would talk to the CM and let them know that you need more space ( I do this and have never had any problems form CM

For any line, you are in have your family stand in fornt of you and behind you to make a bubble around you

 

[DisneyOma]

So, I was just diagnosed last week (when this normally hits men in their 70's - hurray for me), and now the spouse is considering doing a theme park trip for the kids while I'd be in a "good phase." Well, with cancer, the mind thinks, is there something that helps?

And my mind says, yes...all the current covid protections are perfect for me, and I wouldn't need further accomodation (I don't think...although ask me in 6 months). However, they may not last.

So, post-Covid, is the DAS approved for someone who shouldn't be in crowded spots, who shouldn't wait next to tons of random folks in long lines, who shouldn't sit next to random someones shoulder to shoulder in shows, but needs to have a semi-bubble for health (aka - forget Covid - the dang common colds could kill me since my immune system does not function correctly). I mean, this isn't mobility, but neither is it behavioral...so, is it accomodated, or should I plan a much sooner trip during Covid (although I still need to wait to get fully genetically typed and CAT scanned and make sure they didn't want to do treatment sooner vs later, so we'd still be talking 2021)...

This is posted just so I know, since I have no plans yet on the table...

I wouldn't go expecting to get a DAS, or have it help in the way you think it will. You'll still have to be waiting somewhere, and it can get very crowded pretty much everywhere at WDW, especially after COVID-19 has cycled through and we aren't on such strict travel limitations. It will get you out of one standby queue at a time, and you'll have to wait for the standby time to go by, which will increase your exposure as you'll have to look for a place to hang out while you wait. It will be very hard to stay away from people as they will also be looking for shade, a place to sit, a place to stop and look at their phones, etc. I wish you the best of luck, but I don't think the DAS will solve your issues at WDW.

immune compromised individuals are covered by ADA so yes you should qualify. During and post treatments, you may also have stamina limitations.

While there are no guarantees, there is a reasonable good chance of periods of remission where both your immune and stamina will be closer to typical so that would be the best path. A deep conversation with you doctors should yield the best guidance, once you have a treatment plan mapped out.

Doesn't matter if one is "covered" by the ADA, as if a mobility device met someone's needs, they wouldn't be eligible for a DAS, would they? It's this thinking, that a certain diagnosis means a DAS is in the hand that gets people in trouble.

 

[TwoMisfits]

I'm pretty good at finding empty spots (I've got decades of past Disney experience thanks to being there from 8 years old), but it does seem like a "during Covid trip" in 2021 would be better than an "after Covid" trip...hmmm, well, we'll see if "helpful to me" restrictions last to the spring b/c we probably would wait out flu season to travel in one of the "low illness" periods for most illnesses...

If they don't last, then I'll probably contact Disney, Universal, and Sea World support folks and see who wants to handle this best, since my kids have 4 years from seeing any of them, so they'll probably be up for any theme park at all...like even if it's just "no one else in enclosed car rides, no one else sharing tables - yes Biergarten, keep that, an area to wait out the stuffedness of pre-shows, etc"...

 

[Henwen88]

CML here. Diagnosed about 10 years ago, and I'm much much much younger than the 'typical' patient.

We had a Disneyland trip planned literally 4 weeks post diagnosis, and my oncologist told me to go and have fun In retrospect, I was really, really sick and had been for so long that it seemed normal. I was adamant about not getting a wheelchair or anything special, but, again, hindsight is 20/20, and that trip about wiped me out. I could NOT have done WDW walking at that time (but have probably been to WDW like 30 times since then, and know how to pace myself better).

My #1 recommendation is not to overdo it - it's sooooo easy to do. It's not the lines, it IS the heat and the walking. Stay hydrated. Take naps, sleep in, remember to leave some 'gas in the tank.' Good luck with your trip and your treatment!!!

 

[Hoodie]

FYI - all shows have spaced seating right now. The seats are in groups of 4 with 3 seats in between, one party per seating area. They have big signs that say DO NOT SIT. If your party is larger than 4 people, you are asked to split yourselves up however you want.

 

[bookwormde]

I wouldn't go expecting to get a DAS, or have it help in the way you think it will. You'll still have to be waiting somewhere, and it can get very crowded pretty much everywhere at WDW, especially after COVID-19 has cycled through and we aren't on such strict travel limitations. It will get you out of one standby queue at a time, and you'll have to wait for the standby time to go by, which will increase your exposure as you'll have to look for a place to hang out while you wait. It will be very hard to stay away from people as they will also be looking for shade, a place to sit, a place to stop and look at their phones, etc. I wish you the best of luck, but I don't think the DAS will solve your issues at WDW.



Doesn't matter if one is "covered" by the ADA, as if a mobility device met someone's needs, they wouldn't be eligible for a DAS, would they? It's this thinking, that a certain diagnosis means a DAS is in the hand that gets people in trouble.

it is the immune compromised that is the qualifying condition and impact not the diagnosis

we never had a problem finding an area to "stand off" and wait away from crowds, though I would assume at very busy times this would still be challenging.

 

[SteveMouse]

While we don’t know what’s going to happen in the future, an emptier park will be easier to social distance in. If/when a theme park relaxes it’s mask policy, it may very well see increased utilization both from “normal” use and pent up demand.

I would, unfortunately, not expect, once social distancing requirements are removed as a matter of policy, people to automatically give others a wide berth.

it may be much more relaxing for you to go while the current rules are in effect because they happen to support your needs. While accommodations should be made, its a lot easier if you don’t have to ask.

 

[Selket]

A few ideas assuming you go post-Covid and social distancing is a thing of the past.... You might try some special ticketed events which tend to be less crowded. A dessert party could give you a possibly less crowded spot to watch fireworks for example and you don't have to wait in the crowds to get a spot. Disney has boats for rent for fireworks cruises and you could rent a boat to see the Epcot or MK fireworks - the boats could be just for your family and you could look for one other family to share with you if you wanted. The "after hours" events seemed very uncrowded if they hold them again in the future. This is not ideal with little kids but could be a fun night out for you and another adult or older kids. All of those things are pricey of course but are some things that come to mind.

I rent an ECV because of my badly arthritic knees but I also had a severe brain injury from an accident a few years ago and sometimes appreciated that I could park the ECV out of the crowds and just sit and people watch. I don't know watch your illness is like, but if stamina and fatigue can be an issue then I suggest trying the ECV. You can always park it in the parks (in ECV areas/usually any stroller area) and walk and come back to it if you're tired or you have long distances to cover (like Epcot). It's also great for having a place to sit in long lines and it does kind of create a bubble around you a bit - but not if you're stationary (like watching a parade - even in the handicapped area). The ECV seating for some shows does feel a bit farther from others if you stay in the ECV and your family sits alongside. Wishing you all the best with your plans!

 

[Disneyfan754321]

CML here. Diagnosed about 10 years ago, and I'm much much much younger than the 'typical' patient.

We had a Disneyland trip planned literally 4 weeks post diagnosis, and my oncologist told me to go and have fun In retrospect, I was really, really sick and had been for so long that it seemed normal. I was adamant about not getting a wheelchair or anything special, but, again, hindsight is 20/20, and that trip about wiped me out. I could NOT have done WDW walking at that time (but have probably been to WDW like 30 times since then, and know how to pace myself better).

My #1 recommendation is not to overdo it - it's sooooo easy to do. It's not the lines, it IS the heat and the walking. Stay hydrated. Take naps, sleep in, remember to leave some 'gas in the tank.' Good luck with your trip and your treatment!!!

We were given similar advice with our DS.. our sons oncologist said it was fatigue that's the worst.. if you get run down then your immune system that's put to the test. So just have fun and take it slow