Terminal Brain Cancer, WDW trip, need tips and encouragement

[lost*in*cyberspace]

If you need good protection for swimwear, try looking at the Coolibar clothing website (google it). They have plus sizes and sell long sleeved swim shirts/rash guards as well as long swim pants. You can get 15% off for signing up for their emails.

 

[nuzmom]

My order arrived from Swimsuits for All - I am very impressed with the quality, price, and how fast my order arrived.
My order from womanwithin should arrive Friday or Saturday. I'm excited to see it.

 

[2RedBirds]

We find that UPF clothing (light weight long sleeve shirts and pants) works better than sunblock for my DS to help with his chemo-induced sun sensitivity. Amazon often carries varieties in kid and adult sizes and different brands; sometimes cheaper than the manufacturer websites.

Wishing you good luck with your future treatments and hoping you have a magical time on your trip!

 

[nuzmom]

Thanks 2RedBirds! I JUST got done ordering some UV sleeves (so I can use my current shirts) off of Amazon.

I am pleased with both my "swimsuits for all" and my "woman within" orders. I really like the UV zip up "swim jacket" I got off of swimsuits for all. I definitely could throw it on top of a shirt. I ended being more comfortable with "covering up" to prevent sun issues.

Thanks for everyone's help!!!!

 

[Shanti]

I am diagnosed with a glioblastoma, grade 4. I've had surgery and radiation with oral chemo. I have also had 2 rounds of infused chemo, with nightly oral chemo. We have a short WDW vacation planned for Sept 9th. My neuro oncologist has allowed me to put off my next infusion for a week so it doesn't interfere with my vacation as long as my MRI (on Sept 7th) is stable. My tumor is in a "difficult" location (motor strip) and has basically paralyzed my left leg.

We have plane tickets (Southwest) and are planning on taking a wheelchair for the airport and resort use. We are renting a high backed ECV offsite for the duration of our vacation. We are also renting a car (SUV). I have ADRs and FP+ made. We are staying at Beach Club.

Some days are really rough - fatigue, mobility issues, nausea. Some days are "ok". I use a walker at home and either a walker or wheelchair when we go out. We've been to WDW multiple times and just going at our pace is our current plan.

One of the side effects of my treatment is steroid induced weight gain (I've gained about 50 pounds) and I feel very unprepared as far as clothing goes. I'm not sure what to do.... I'm in a 3XL/24w. I have some jeans I wear around home, and I don't think I can risk bare skin - I can buy a couple pairs of pants - but where and what?
Same with a swim suit. I know I won't be able to "swim", but my DH and I could "relax" in the water a little bit - I think... I'm a little concerned over the chlorine.
Of course, the heat is also a concern. We have frog togs and cooling towels and we'll avoid direct, mid-day sun, but it will still be hot.

I'm very concerned about my mobility issues and transferring to some "rides". And, really, just getting around WDW. Overall, I'm getting more and more anxious about going, but I "want" to go and it will break my heart if we have to cancel.

I plan on trying to get a DAS card - I have sensory issues (& will need some noise cancelling headphones) and "emotional" issues (when I feel trapped). Sigh. I hope I don't need it very often since we'll mostly do shows.
I will have my DH, DS16, mom (88), and sister (62) with me.

Any advice on how all this works is appreciated.

Have a wonderful trip!

 

[2RedBirds]

Thanks 2RedBirds! I JUST got done ordering some UV sleeves (so I can use my current shirts) off of Amazon.

I am pleased with both my "swimsuits for all" and my "woman within" orders. I really like the UV zip up "swim jacket" I got off of swimsuits for all. I definitely could throw it on top of a shirt. I ended being more comfortable with "covering up" to prevent sun issues.

Thanks for everyone's help!!!!

It's wonderful that you were able to find clothes that you like for the trip!

 

[999miles]

It’s not the same thing but my 2 year old has shunted hydrocephalus. Shunt have the highest fail rate in the medical community so we travel with a cd of her most recent brain scans so a neuro team could quickly determine if things have changed. It makes us feel prepared if she needs to go to the hospital in the middle of the night.

Have so much fun!

 

[MBurns]

I am just curious how was your trip?

 

[BeerMe]

No suggestions, but I hope you have a magical trip! Good luck. Prayers.......

 

[srwarden1928]

I don't have any good suggestions for your situation. I just wanted to comment to say I think it is totally great that you are spending at least some of your limited time at a place that has brought (for me anyway) so much joy over so many years. I think if I knew for sure my time on this earth was limited, some significant time in Disney would be high on my list of things to accomplish in the remaining time. You just have to deal with the issues you have to deal with. Disney is probably one of the easiest places to deal with significant issues--they seem to go out of their way to make things as easy as possible--more so than most places. I wish you so much joy and magic for your trip.

 

[nuzmom]

Thank you all. Our Sept trip was cancelled due to the hurricane, but we are going in december. As it turns out, I am in a physically better spot than i was in sept (but typing is difficult).
Thank you and Happy Thanksgiving.

 

[JinxedSydney]

I hope you enjoy your trip! You'll have the beautiful holiday decorations to see!

 

[unwritten01]

We love the Christmas decorations and hope you have an outstanding, awesome great time!

 

[gap2368]

Thank you all. Our Sept trip was cancelled due to the hurricane, but we are going in december. As it turns out, I am in a physically better spot than i was in sept (but typing is difficult).
Thank you and Happy Thanksgiving.

I hope you have a great time and have some great things to share with us after your trip.