Tips for 1st family with DD undergoing chemo?

[iu97alum]

DD has finished half her treatment and had her surgery over six weeks ago so we're going to go on our WDW trip we planned before her dx. For those of you who have taken a trip either with a child undergoing chemo or yourself, what tips or things should I bring to make our lives easier. We're going to be staty at VWL and I've already planned on a list of her medications plus some extra scripts in case we run out/lose/drop etc, a stroller (DD is 4) thermoter, and stuff but is there something else I should do to prepare, pack or bring? I've beenr eading the tips msgs and have started my stash (glow bracelets, tshirts, stickers, etc) but wondered from a special needs situation, if there are things out there I might be missing

We're leaving one month and one day from today and both DD's are so excited. We talk about it daily and I know her stamina isn't what it was before she (a) started chemo and (b) had surgery to remove the tumors but we (family included) needed something fun to look forward to! Oh, and Nana is coming with us too which will be a BIG help not to mention an opportunity for her to see her DGDs FIRST time at WDW.

So, any tips, advice, or things I need to pack (or even not pack or do!)

tia!
DANA

 

[pigget74]

Don't forget to get a Guest Assistance Card when you get there. You might what to go over to the disabilities board and as these questions. Hope that you guys have a great trip and a speedy recovery.

 

[tarheel618]

How prone is your child to colds now? I would want to take items to sterilize the room and hand santizer for the parks.

My daughter just went through surgery (not cancer related) but we were very concerned about her getting sick.

 

[iu97alum]

Well, depends on when her last treatment is when her counts drop. But we definitely do more of the hand sanitizer than we ever did before she was dx. I will definitely invest in the wipes since we just carry the gel with us now.

As for the GAC, will it really be something that would be helpful?
thanks so much!!

 

[Pakey]

I went on vacation halfway through my chemo treatments so that I could attend DS's wedding in Hawaii. Tips I would give you are to watch out for the sun. I found that although I was sunscreened to the max and not concerned about burning, my stamina held up longer if I avoided direct sunlight (I had really low counts too which made it worse).

I scheduled many rest breaks during our days. I chose to skip a lot of the pre-wedding activities in order to keep my strength up. I was so afraid that once worn down, I wouldn't recover. I also went to bed earlier than usual so that my strength was better for the following day.

Also, I was very cold on the plane. I was bald so I was wearing a ball cap type of hat (I hated the wigs I had purchased-so uncomfortable) and then also packed a fleece hat that came down over my ears. I wasn't on the plane very long when I was pulling out that fleece hat to help warm up. Plus I collected a couple of those airline blankets because I was still so cold. I don't know how your daughter reacts but I found I was much colder on chemo than I ever have been.

I wore a mask on the plane, one of those cotton masks, because of the recycled air and my fear of getting sick at the start of vacation. My doctor had recommended it due to the length of the flight we were taking. I did not wear it on the way home and still didn't get sick so it might have been a waste.

And as PP said, take lots of wipes and hand sanitizer. And comfortable clothing for her because on the days you are only feeling so-so, being as comfortable as possible makes the days better and fun to get outside.

I hope you have a great vacation. Our trip to Hawaii was the best one we'd ever had there and I think that's because we were forced to relax and not overschedule ourselves.

 

[strmtroopr96]

DD has finished half her treatment and had her surgery over six weeks ago so we're going to go on our WDW trip we planned before her dx. For those of you who have taken a trip either with a child undergoing chemo or yourself, what tips or things should I bring to make our lives easier. We're going to be staty at VWL and I've already planned on a list of her medications plus some extra scripts in case we run out/lose/drop etc, a stroller (DD is 4) thermoter, and stuff but is there something else I should do to prepare, pack or bring? I've beenr eading the tips msgs and have started my stash (glow bracelets, tshirts, stickers, etc) but wondered from a special needs situation, if there are things out there I might be missing

We're leaving one month and one day from today and both DD's are so excited. We talk about it daily and I know her stamina isn't what it was before she (a) started chemo and (b) had surgery to remove the tumors but we (family included) needed something fun to look forward to! Oh, and Nana is coming with us too which will be a BIG help not to mention an opportunity for her to see her DGDs FIRST time at WDW.

So, any tips, advice, or things I need to pack (or even not pack or do!)

tia!
DANA

Just wanted to wish you a wonderful trip!! I think I may have also seen a post of yours on another group (BabyBags or StrollerSwap). I hope your DD's have lots of fun!

 

[pigget74]

I was thinking of the GAC card just in case she just gets to tired and she could possibly stay in her stroller and so forth.

 

[LindaBabe]

check out the wish trips thread on the disabilities community board too. those parents also have children with life threatening illnesses and will have lots of tips for you.

Definitely get the GAC and tell them she needs to wait for rides in shaded areas to keep her out of the sun. They don't need to know the diagnosis - just what the needs are - I would say "shade" for sure, and use of stroller as wheel chair, which will let you keep it longer in the queue than the typical stroller parking.

 

[iu97alum]

You are quite right. Many of her medications in general make her more light sensitive too! And the cold natured? Yup, especially since she's had radiation Since we also just came back from NY from her surgery, we did the mask thing but it's really hard to get a 4yo to wear that long term, especially since she still sucks her thumb!!

Thanks so much for all the tips!

I went on vacation halfway through my chemo treatments so that I could attend DS's wedding in Hawaii. Tips I would give you are to watch out for the sun. I found that although I was sunscreened to the max and not concerned about burning, my stamina held up longer if I avoided direct sunlight (I had really low counts too which made it worse).

I scheduled many rest breaks during our days. I chose to skip a lot of the pre-wedding activities in order to keep my strength up. I was so afraid that once worn down, I wouldn't recover. I also went to bed earlier than usual so that my strength was better for the following day.

Also, I was very cold on the plane. I was bald so I was wearing a ball cap type of hat (I hated the wigs I had purchased-so uncomfortable) and then also packed a fleece hat that came down over my ears. I wasn't on the plane very long when I was pulling out that fleece hat to help warm up. Plus I collected a couple of those airline blankets because I was still so cold. I don't know how your daughter reacts but I found I was much colder on chemo than I ever have been.

I wore a mask on the plane, one of those cotton masks, because of the recycled air and my fear of getting sick at the start of vacation. My doctor had recommended it due to the length of the flight we were taking. I did not wear it on the way home and still didn't get sick so it might have been a waste.

And as PP said, take lots of wipes and hand sanitizer. And comfortable clothing for her because on the days you are only feeling so-so, being as comfortable as possible makes the days better and fun to get outside.

I hope you have a great vacation. Our trip to Hawaii was the best one we'd ever had there and I think that's because we were forced to relax and not overschedule ourselves.

 

[iu97alum]

Yup! You're right! I'm on BOTH those groups! Thanks for the encouragment! We needs some good stuff in all our lives. WIth my FIL passing away, Gpa in a home for Alz (and probably won't be here much longer) topped with DD"s cancer diagnosis, we NEED some magic in our lives!

Just wanted to wish you a wonderful trip!! I think I may have also seen a post of yours on another group (BabyBags or StrollerSwap). I hope your DD's have lots of fun!

 

[iu97alum]

Thanks! I'll hop over there now. I guess I didn't think of her cancer as a disability and didn't think about that group! Since several of ya'll have mentioned the GAC, I will definitely look into that. I assume I have to wait until we get to park for that

check out the wish trips thread on the disabilities community board too. those parents also have children with life threatening illnesses and will have lots of tips for you.

Definitely get the GAC and tell them she needs to wait for rides in shaded areas to keep her out of the sun. They don't need to know the diagnosis - just what the needs are - I would say "shade" for sure, and use of stroller as wheel chair, which will let you keep it longer in the queue than the typical stroller parking.

 

[2kids4us]

First I want to say that my prayers will be with you! As a parent of a cancer survivor, I know the struggles you have/ will face. These kids are the most amazing kids I know! I hope your vacation is the best ever!

We went to Disney last March with Make a Wish.. wow!

Besides the GAC (which is invaluable), here is my best advice... it comes in two parts

1- Remember that this is a vacation for the whole family. If she has siblings, don't focus so much on her that they feel neglected! Learned that one the hard way... but we are ALL better for it!
2- Decide before you ever get there to CHERISH EVERY MOMENT!!! Vacations seem to fly by and all of a sudden you are leaving and wondering where the time went. When we went in March, I made a concious effort to cherish each little moment and it didn't seem to go as fast. Plus I have some memories that I will teasure FOREVER!!

Again, I hope that your time at Disney is THE BEST!!

 

[SueM in MN]

Well, depends on when her last treatment is when her counts drop. But we definitely do more of the hand sanitizer than we ever did before she was dx. I will definitely invest in the wipes since we just carry the gel with us now.

As for the GAC, will it really be something that would be helpful?
thanks so much!!

There is a link in my signature to the disABILITIES FAQs thread. You will find a whole section about Guest Assistance Cards in the FAQs thread.

(the server is being changed tonight, so if the link doesn't work tomorrow, send me a Private Message and I will make sure you get there).

check out the wish trips thread on the disabilities community board too. those parents also have children with life threatening illnesses and will have lots of tips for you.

Definitely get the GAC and tell them she needs to wait for rides in shaded areas to keep her out of the sun. They don't need to know the diagnosis - just what the needs are - I would say "shade" for sure, and use of stroller as wheel chair, which will let you keep it longer in the queue than the typical stroller parking.

There are some links in the disABILITIES FAQs to some WISH trip reports and to a thread of WISH trippers on the Community Board.

Thanks! I'll hop over there now. I guess I didn't think of her cancer as a disability and didn't think about that group! Since several of ya'll have mentioned the GAC, I will definitely look into that. I assume I have to wait until we get to park for that

You do have to wait until you get to the park. The FAQs thread should answer most of your questions.

 

[memobrien]

Chemo make you VERY light sensative. Make sure that she has sunblock at all times. DON'T forget to rub it on her ears. My DH went threw many rounds of chemo. He use to forget to put it on his ears and they would burn SOOO fast it wasn't funny.

Is she having any taste issues. My DH LOVED to eat and did all threw his chemo. Literally he would be sending me out for chinese and things like that. But one thing we found was that he got this metalic taste in his mouth. So I use to have hard candies for him. It would help with the metalic taste. Also he seemed to have dry mouth more and it helped with that as well.

I'm sure her doctors are aware of the trip but I would ask them if there is anything they can do to prep her, or anything you should bring in light of the treatment. My husband went with me to Guatemala in the middle of his chemo treatments. We were adopting out daughter and got the call to get her. His doctors were amazing! They were like ok he needs to go and we will get him ready. They gave him special meds to help with his counts and really boosted his fluids right before we left. Ironically on the trip he ended up being the healthier one. My DD, myself and my mother all got big fevers, sinus infections and double ear infections.

Most importantly I would say DO NOT FORGET your camera!!! Have a ball!! Take lots of pictures!!! Savor every moment. Too often people forget that.

Maura

 

[SueM in MN]

Chemo make you VERY light sensative. Make sure that she has sunblock at all times. DON'T forget to rub it on her ears. My DH went threw many rounds of chemo. He use to forget to put it on his ears and they would burn SOOO fast it wasn't funny.

If she is in a stroller, don't forget to put sunblock on her knees. People don't really get sun on their legs that much while walking. When you are seated, the legs are facing right into the sun and can get burned before you notice.

 

[pepperw23]

I just wanted to pop in to tell you that I hope you guys have a WONDERFUL trip!!!

For your DD:

GET WELL SOON!!!

 

[iu97alum]

AWWW. thanks so much! I hope so! Now it's keeping her healthy (no colds, infections, ect) so we CAN go! DH decdied to warn me that her getting sick is a possiblity!

 

[iu97alum]

gosh! You guys are great! I'm very vigilant about sunscreen anyhow, so she'll get applied several times (of course with the awwww.. mom! answer). Since DH is pretty much bald too lmao: ) he helps me remember those easy to burn places on the head too.

The stroller knees are a good thought too. I wonder if she'll be able to wear shorts in Jan? She's been so cold lately with her treatments I'm wondering how many layers she'll require.

Thanks so much ya'll for the help and answers. It really means a lot knowing Im on the right track and being reminded of somethings I may forget!!

 

[GoofyG]

My mom went through chemo for breast cancer. Her anti nausea meds made her constipated so you might want to take something with you for that. Also when I travel I tend to have a problem with that anyway. She was colder during her treatments too. Dressing in layers and definitly a warm hat would probably be a good idea. Take plenty of rest breaks and try not to do everything, it's just not possible. Enjoy the things that you can do. I'll be praying for your daughter and your family. Hope you all have a great time.

 

[disney[xo]sweetie]

my hubby works with people undergoing chemo, mostly children at the mayo clinic in MN and he suggested GAC most defiently, usuing the mask as much as possible, and lots and lots of sanitizer.
my advice to you is to not bring up the cancer much. just make sure to treat her like a healthy kid, and have fun.
kisses and hugs to your daughter and prayers to all of you.