A Short but Not Sweet Trip Review *12-1 Pre-Trip Report Link

[DopeyDonald]

We slowly made our way out of the park (along with a million other people) I really wish I would pay attention to the time and try and get into a store before the stroke of midnight. I would love to shop after EMH while the crowd dissipates. As it was, we stopped at town square for our pics in front of those pumpkins with the castle in the background - bummer though, they never made it onto our photopass and I don't have the brain power right now to try and figure out if they can still be found......

We got on a boat fairly quickly and were back at the lodge in a few minutes. We headed up to the room and wanted to get to bed asap as we had a big day at EPCOT planned for the next day. The girls and Nana and I had a "world tour" planned. I went in to see how little DD had done. Nana said she fussed a bit in the stroller and then went to sleep while on the boat. She looked so peaceful sleeping there next to Nana.

I went and got jammies on and went back in as she had woken up and was fussing for me. I picked her up and she was all wiggly - I figured she had to pee as this is how she acts when she does, but she wiggled like she wanted to lay down again so I set her down. No sooner had I set her down when she got SICK. And I mean got SICK. All over the king bed. At least it was only the sheets as the comforter and blankets had all been pulled back when I picked her up.

I immediately assumed that it was all the junk she had eaten as she didn't feel warm and felt much better after getting sick. We stripped the sheets, called house keeping and got new bedding. We threw her in the bath and got her cleaned up, remade the bed and were sleeping by 1:30. She slept until 7 so I figured that I was right and it was just something she ate since she hadn't gotten sick again. NOPE. Around 7:30 she was sick again. And every hour after that ALL day. She had a bit of fever by then so I knew it was a bug.

I stayed with her all day while everyone else went to EPCOT as planned. I have no idea what they did. lol I do have a few pics to share, but other than that no clue. I know we cancelled a Biergarten reservation for that afternoon. Our other plans included a movie on the beach that night, which I felt confident that we (meaning the 4 of us - Nana would stay with the sickie) would be attending. How long can one kid throw up anyway?!

How everyone else spent their day:

How Cassidy (little DD) and I spent our day:

 

[emmysmommy]

This is just so compelling... I'm sorry that whatever this is building up to is not good.

Those step-sisters at 1900 PF are hilarious. I love their expressions. I know what you mean about that strawberry soup.... it is addictive.

 

[DopeyDonald]

After everyone else got back from EPCOT we tried to figure out what to do for the night. Middle DD - Annie from now on, not sure why I haven't been using names lol - wanted to eat at WCC again because Billie said she'd be working. And we love eating there so.... We planned on the 4 of them going while I stayed in the room with Cassidy. I'd already eaten there and Nana wanted to try it.

After Nana came back up from dinner, Annie and I decided to head to DTD to get treats for everyone for the movie. I really really like those choc covered pineapple - can you tell?? lol Cassidy hadn't thrown up in a while so I felt comfortable leaving her with Nana. She'd even eaten a waffle around 5 and it was now 7 so I figured it was behind us. Annie and I got to DTD and we got the best parking spot ever - and that's a feat at DTD so I had to share!

It was a GORGEOUS night and I'm so jealous that we didn't have more time. It would have been a PERFECT night to shop and hang out. As it was, we rushed to Goofy's and got our snacks and headed back to the van. As we were getting there my mom called and said that Cassidy was crying for me, so we hurried back and I dropped my Annie off at the movie with DS and DH. It was Princess and the Frog night.

I got up to the room just in time for Cassidy to be sick again. Poor girl. She had a very rough night this night again too. Threw up almost all night every 1.5-2 hrs. I knew I wouldn't be going anywhere this day also. (just to keep things straight that would be Tuesday)

 

[DopeyDonald]

This is just so compelling... I'm sorry that whatever this is building up to is not good.

Those step-sisters at 1900 PF are hilarious. I love their expressions. I know what you mean about that strawberry soup.... it is addictive.

I know...I kind of feel weird making a trip report out of this, but I am doing it for a few reasons. One, I have a lot of time in the hospital. Two, everything turned out OK. Three, It still feels a bit like the twilight zone and it's very cathartic for me to write about it. Let's put it this way....I left home on the 4th of Sept and I've only been home for 1 day since then..... It's now the 22nd......

I also have a few reviews of services, things, hospitals down in Florida that I want to share if it may help anyone else out.....

 

[emmysmommy]

When I saw your earlier posts about your travel dates and then did the math I was instantly horrified to think that you've been dealing with "this" since that Monday. Wow!! I truly am sorry that this was a show stopper for your trip but more so for little Cassidy. I just can't imagine.

You've handled everything so well.... I completely understand the cathartic effect. I'm glad that you are sharing your story even if it isn't how you planned to spend your time.

 

[DopeyDonald]

OK - so she'd thrown up all day Monday and Monday night. Now it was Tuesday morning and I was getting worried. It was no longer a 24 hr bug.

Nana and the kids headed to Blizzard Beach - DH's tummy was a bit funky now too and he wanted to take it easy and stay with us. So off they went.

Here are a few pics from their day - again I have no idea what they did -
I know they did rent an area - not the real expensive one, but like the $50 one.

At this point I was debating on bringing Cassidy to the walk in clinic. She was still looking OK and drinking water, but could NOT keep it down. Her fever was funky too, very up and down and not really responding to Tylenol or Advil in a normal way.

But then I remembered hearing about the doctors who came to your room and researched that a bit.
- Bit of background - Cassidy broke her femur when she was almost 3. It was obviously very painful and she developed a HATRED for Dr's after that. She's also mildly anemic and has been poked a zillion times to figure that out and she basically FREAKS out in and around Dr's and hospitals, so I figured a room Doc would help a bit.

So first I googled it and found Physician Room Service of Orlando. I looked over their web page and noted that they charged $250. I thought this looked good and was ready to call. I assumed that there was only one of these in Orlando. So before I called I called the front desk to ask their opinion and if they had any experience or feed back about them.

They assured me that yes, this was a legit service and a good one and that they could connect me if I liked. I thought sure and so they connected me. I talked to the person at the service and they took my info, determined that yes, it sounded like we would be candidates for a visit and informed me of the prices. He said it would be $365 for a visit, plus any meds and overtime for anything over an hour. At that point I agreed but was confused. The doc was on his way.

I found out shortly later that there are 2 of these services and that DOCS (which is the one that ended up coming) is the one Disney endorses. Interestingly they are $115 more...hmmmm. Oh well, my fault for not researching and paying more attention.

I called at around 9am and was told that Dr. Steve would be to us by 11:30 at the latest. Ok, that was fine. He showed up at 11am so he was on time. He went over the protocol with me first (Cassidy was sleeping in the bedroom at this point) and told me how things would go. He was very professional at this point and I felt good about things. He told me that he would examine her in the bed where she was or I could bring her out to the living room. I opted for the bed just because she was already sleeping and I figured he might be able to listen to her and take her temp before waking her up and experiencing her wrath.

True to my word, she work up shortly and she was ANGRY. She kicked and screamed and fought and was generally just ornery. At this point also she hadn't thrown up since around 9 right when I called so I was feeling like a fool for even calling. He checked her over and didn't think she looked dehydrated so that was good. He gave me some options. He talked about the different anti-nausea drugs and we decided on Phenergan. He told me I could have suppositories, liquid or both. I opted for both because I wasn't sure she would take the liquid as it tastes really bad but I at least wanted to try it before resorting to suppositories lol. He did leave me the first dose to give to her right away because it would take a few hours for the other drugs from Turner Drugs to get there.

Here's where I got a bit of a bad taste in my mouth. He kept talking about hurrying up to get her to stop throwing up so she could keep some Tylenol down so we could get back to the parks. He said give her the meds and we'd be back in MK in a few hours. This really rubbed me the wrong way. This is NOT what I was looking for. I was genuinely concerned that my daughter was ill. I was NOT looking for the quickest way to get back to touring. Even if she stopped throwing up, she still had a fever, was still more than likely contagious and would probably still feel like crud.

However, I let that slide as he was professional in every other way and I figured that maybe a lot of people that he comes to see ARE looking for the fastest way to get back to their vacations.

The next part though prompted me to write a letter to their company. After signing all of the paper work and getting us all "checked out" with a credit card he proceeded to give me a spiel about contacting them for restaurant recommendations and inside info about local attractions etc. I was VERY put off by this. It's one thing to be friendly and all, but this was really very tacky. He also made sure to give me his card with the instructions to leave it at the concierge desk with a glowing review.

UGH. Again, I do feel that he was a qualified Dr. who knew what he was doing, but man, I was really put off by how he was acting and can't say as I'd recommend their service. Maybe if I thought my child just had an ear infection or a sore throat, but nothing more than that.

So. After he left I gave Cassidy the dose of Phenergan. He said it may make her a bit sleepy so I was happy when she drank some water and drifted off for a few hours. She woke up a few hours later and had a bit of diarrhea (which he said also may happen) and then went back to sleep.

Around 5:30 Nana and the kids got back from Blizzard Beach. DH was going to take the kids back to the Halloween Party this night. This was originally the night we were all going to go as Pirates, but I had actually been able to switch our appointments that morning to Friday - how that bit of pixie dust came along I'll never know. We were also able to switch Cassidy and I's tickets to Friday also - Everyone else would just get to go twice.

So DH and the big kids headed off to MK. It was round then that Cassidy woke up and was VERY agitated. She didn't want to be held, didn't want to be put down, just was very whiny and fussy. Nana and I decided to just take her to Centra Care. DOCS had suggested we call them back if we needed follow up care, but I knew we were beyond that at this point.

I was pretty worked up at this point as she was getting progressively fussier and for her to not settle down when I was rocking her was upsetting. At this point I then put her in the stroller and proceeded to change clothes. While I was doing this she fell asleep again and I was having a hard time getting her to stay awake. At this point I knew it was going to be the E.R and not the walk in. I was really concerned for her at this point as this is how Annie had acted when she was dehydrated as a young toddler - Annie had been hospitalized for that.

My mom drove and I sat with her in the back - she just could not stay awake. she would open her eyes and then just loll her head back and close them again. I was a hair's breadth away from calling an ambulance, but figured we could get there just as fast.

We drove straight to Celebration Hospital E.R. Where she proceeded to wake up and throw the hugest fit known to man. *sigh I guess she wasn't as sick as I thought. They checked her in and started IV fluids just from the history I was giving them. They asked if she might be in any pain and I mentioned the fussiness before falling asleep. So they ordered a throat culture, a CBC, a urine and an X-ray of her abdomen. I was very impressed with how they handled things.

We got the Urine and throat culture right away. They let me lay in the bed with her while they wheeled her to x-ray. After x-ray they moved us right next door to the C-T scan - which never seemed odd to me, but it does in hindsight.....

We were wheeled back into the room and waited for results......
Cassidy and I in the ER bed - trying to get her to eat a popsicle..

 

[DopeyDonald]

After a bit, we were getting antsy to leave. She was feeling better and I was getting impatient. She's fine, let's go. After what seemed like forever, the ER doc came in the room.
"Mrs. Cuypers, a pediatric ambulance is on it's way. We are transferring you to Florida Children's. Cassidy has a very large mass in her abdomen and she will need to have it biopsied and have surgery as soon as possible"

Ah. Ok.

I was remarkably calm and collected. My mom called my husband and father and left to go back to the VWL to switch with my DH. I talked to the Dr. and was just fine.

Until everyone left the room when I proceeded to shake like I've never shook before. I could NOT get warm. They got me some warm blankets and I was able to calm down a bit. The only think I was hanging onto at that point was that the Dr. Called it a cyst like mass. And cyst's aren't bad right? That's all he would tell me - that and it could also be a germ cell tumor.

The ambulance arrived and I was told I would have to ride up front and she in the back. That was the FREAKING longest 30 mins of my life. My little girl must have said "mama" a thousand times. and she wasn't screaming it, she was saying it from the bottom of her heart - which was way worse. I could see her and talk to her a bit, and it was awful.

The ambulance crew was great and we were there in no time. They were very nice and competent, but again, when we got there one of them handed me a business card and asked that I fill out an online survey to let them know how they did. WHAT THE "you now what" Seriously??? I am so confused by the need for medical people in Florida to know how they did.....

So we get to our room in Florida Children's around 1am. My husband arrived shortly after and we got a bit of sleep.

You guys we did not see anyone besides a nurse who took vitals until 3 pm the next day - WE WERE ANGRY.
I'm sorry to leave you hanging, but I really gotta go to bed - we are getting discharged tomorrow.....

Also it wasn't my intent to leave this as a cliff hanger, so I will tell you that she did have something very rare called Lymphangioma. It is not cancerous, but is very serious. She is going to be fine for now...it may recur, but I will give more details the next time I post. I do have some more info about how Disney handled things etc....but dont' want to seem like I'm sensationalizing my daughters illness.
It just feels good to write about it. We have so many emotions and it's good to have it down on paper and have a record of how things went.

 

[reelmom]

Glad she is doing better but wow, what a roller coaster ride you have been on. Praying this is the only time you have to go through this and she makes a complete recovery. I bet you will be glad to sleep in your own bed.

 

[__disneygirl]

Praying for your family! I hope your daughter is feeling better. I think you all handled things well. This is such a crazy story and a lot of mothers would have lost it. I'm so sorry this happened to you guys and I hope you get an amazing trip in the future with everyone healthy to make up for it.

Also, you mentioned losing some PhotoPass pics. Disney recovered almost 2 weeks worth of PP pics for me after a photographer took my card and gave me back an empty one by mistake. There is a form on their website: http://www.disneyphotopass.com/skins/100147/forms/lost_photopass.aspx

I was able to upload a pic of us so that they would know who to look for in the photos. There's lots of other info you can fill in too. They'll most likely find them. Hope this helps!

 

[Cinderella909]

So glad to hear that Cassidy is doing well. Can't imagine how hard this must have been on you and the family, especially when so far from home.

Hang in there. Karen

 

[annie170]

I'm so sorry for your daughter's illness, but happy she is on the road to recovery. What a nightmare this must have been for you and your family! I'm interested to read the rest of this and how Disney handled things for you.

 

[emmysmommy]

Just wow... I'm so very sorry that Cassidy had to go through that. Thanks for giving the short version of how this turns out. And I don't think you have sensationalized anything. In fact, it looks like you handled things so well. I have to admit that when you shared that the doctor suspected a mass and that this was serious, I had a moment. Your experience brings back memories of a time my DD became very ill on a cruise and had to go to the infirmary for IV meds and hydration since she had similar symptoms as Cassidy. Our diagnosis was not nearly as horrifying as yours.

I'm astounded at the "room service doc" who wanted to pitch you more entertainment options. And then the ambulance .... I'd give them my opinion but I don't think they would use it.

I'm glad Cassidy is on the road to recovery but I know there is still a lot of your story to tell. Thank you again for sharing.

 

[kimbo0569]

OMG, how awful! I'm so sorry you all had to go through this. I hope she is feeling better now.

 

[DopeyDonald]

First off - we are HOME!! yay! It feels very odd and Twilight Zone. I can't believe I left here almost 3 weeks ago - it really seems like we were never in Disney - I want to go on my vacation!! lol

When I left off before my Husband and I had spent the night at Florida Children's. We had not seen, nor heard from anyone besides the nurse who took vitals ALL day. I finally had run back to the room at WL to get things as I was expecting a long hospital stay. I had only the clothes on my back and the night before my DH had grabbed me 4 shirts and a pair of socks when I asked him to pack me some clothes before he came

Here is what Cassie and Daddy did while I was gone. They watched Brave on the huge TV screen that was in the room. It had on demand movies and games and all sorts of awesome things.

Also while I was gone "Cinderella" came around to visit. My DH had just gotten Cassidy to settle down and nap when she came around . The morons woke her up and kept bugging her to "see Cinderella" when she was very obviously upset about being woken up and having all of these strange people in her room. They left her a goody bag with a crown, wand, coloring pages and crayons etc. It was a VERY nice gesture, but I do feel a bit annoyed with the way it was handled.

When I got back around 11 am or so she was feeling much better due to the IV fluids and anti-nausea. She was not allowed to eat, which was fine, but please could someone come in and tell me what is going on?
Here she is coloring - you can see a bit of the room and how much better she was feeling...

FINALLY - around 3pm a doc comes in and tells us that she has a mass in her abdomen that is most likely cancer. It needs to be biopsied and do we want to do this here in Florida or go home to MN. He felt she was stable enough for travel.

I asked him point blank "if this was your child, what would you do?" He said that he would take her somewhere closer to home. I was so torn. I wanted to get back home to take care of this but I was absolutely terrified at the thought of leaving the hospital and taking her 36,000 feet in the air for a 3 hour flight. Plus our flight had a layover. He told us the reason that he would take her home would be that since it's most likely cancer, she will need chemo and radiation etc afterwards and that you should finish treatment, where you start treatment. Meaning we would be looking at months in Florida.

So we made the very difficult decision to fly home to Minneapolis with her. (we actually live about 3.5 hrs Northwest of Minneapolis, but our hospital doesn't have a pediatric surgeon.) So I asked him what I should do next. He wouldn't or couldn't refer her - I would have to call her own doc to have that done. This confused me - She's here in front of you, with a CT scan right here, but I need to call my doc back in MN who has no knowledge of the situation and have HER refer me somewhere??? Whatever.

To complicate things more, my daughters ped had just left her practice and moved to our local walk-in clinic and she wasn't working that day. So I called our local nurse line and explained myself to the nurse who was working. To her credit, she had a ped on the phone with me in 5 mins. I've seen this doc within the practice before and I like her so that was good. This Dr. was very confused as to why she was doing this for Florida Children's also, but didn't waste time asking too many questions and within about 30 mins we had an open appointment the next day with a Surgeon from Children's Hospital in St. Paul, MN.

Once this was set up, the Doc handed me a CD copy of her CT scan and said "good luck". Hmph... I am SO SO glad we made the decision to go home. Florida's medical personnel (with the exception of Celebration ER) was not sitting real good with me. Don't get me wrong - I dont' think they were negligent or anything like that, I just wasn't overly impressed with how things were going.

We were discharged around 6pm - which was too late for a flight that night so I booked us for the next morning. My father was flying down at this point, thinking she was going to be having surgery down here in Florida. So once he got down here, he was gracious enough to pay for our flights (mine, DH and Cassidy's) back home to MPLS on Delta so there would be no layovers. We had flown SW down, and they weren't offering a non stop. Plus now I have a big credit with SW - lol. It left at 8am on Thursday morning and we would be in MSP by 10:20am.

After being discharged we brought her back to the VWL for the night. She was feeling pretty good and we had a quiet evening packing and deciding what to do.

Here is where I was impressed with Disney. We had rented points for this trip. In my name. We still had 4 nights left on the reservation that I had "paid for". We couldn't decide if we should all (meaning my parents and other kids too) fly home or if my parents should remain in Florida with my older 2 and finish out the vacation. We ultimately decided that they should. For a few reasons. First of all - there is no way we could have all gotten ready and packed to go and still remained sane. It was much easier to get just the 3 of us packed and us head to the airport.

Second - the room and tickets were paid for. Also my parents tickets were for a Sunday return also as were my kids - so we just decided that for now they would stay. If we found she needed surgery asap or something they could always get flights sooner. My older 2 were in a bit of shell shock and this was a good distraction for them so my DH and I could concentrate on my Cassidy.

When we got back to the lodge I had a decision to make. Should I just hand over my room keys to my parents and have them "pretend" to be us or should I talk to the front desk and explain the situation for them. (I knew that our tickets wouldn't work for them, my mom already had tickets and my dad was planning on buying a 3 day pass) But I also knew that DVC reservations cannot be changed. So........

I bit the bullet and talked to the front desk. With no problem at all the lead name on the ressie was changed and my parents were now both listed on the room. I felt much better about this. They also took care of cancelling all reservations that we had made including some that were within the 24 hrs. I made a LOT of people happy that day....BOG, Cinderella's Table, 3 Pirate's League spots for a party night, Lunch with an Imagineer..... *sigh*

So all in all, I was very happy that Disney was able to accommodate us. My parents and older kids were also able to continue on as Flag Family (I had scored us a spot on our check-in day)

Next up - DH and I get up super early to fly our girl home.....

 

[emmysmommy]

First of all, WELCOME HOME!! Glad to hear that milestone has been reached.

I think you made a good decision to fly home for the biopsy and treatment. It sounds like you would have been very frustrated had you stayed in Orlando and rightfully so.

I can't imagine that the doctor didn't offer to do more... If you have a ped couldn't they offer to consult on the case with them and explain the medical situation or if you didn't have a doc back home to help find one on referral and set up the appointment and bring them up to speed on the history. They just appeared to drop it in your lap and wish you luck... oh and here's a CD with her scan results. Just so odd.

Disney didn't disappoint with their handling of your situation.

 

[galaxyg528]

Just started following your thread. Prayers to your whole family. I can't imagine being away from home in an unfamiliar hospital. I am 45 min from Boston and would be so angry at the way the drs in Orlando handled the situation

Praying for a speedy recovery

 

[mom2cgj]

I just found your TR and read all of it. I am so sorry you are having to deal with all of this! Prayers for you and your little one.

 

[francis6306]

Just found your report! Wow! What a trip!!!

I'm pretty shocked about the "room doctor" pushing to get your daughter back to the park- but in his defense, that is probably what he is used to dealing with… of course, it sounds like if he had done a proper abdominal exam he would have realized the problem was a little deeper than vomiting!

I'm really surprised that the FL doctors didn't help you. Seeing as this is probably a very common problem (people coming for a vacation ending up in the hospital) they would have a system in place to help refer patients… then again, maybe the hospital that you were going to required a doctor with "admitting rights" be the referring doctor. I have worked on the billing side of health care systems for several years- I've long since stopped being surprised at hair-brained rules. It wouldn't hurt to call the Florida Children's hospital and ask to speak with a Patient Advocate and see what happened with the referral part. Hospitals are typically have people in place to take these complaints and deal with them.

I am so glad that your daughter is okay and that you are HOME!

 

[DopeyDonald]

First of all, WELCOME HOME!! Glad to hear that milestone has been reached.

I think you made a good decision to fly home for the biopsy and treatment. It sounds like you would have been very frustrated had you stayed in Orlando and rightfully so.

I can't imagine that the doctor didn't offer to do more... If you have a ped couldn't they offer to consult on the case with them and explain the medical situation or if you didn't have a doc back home to help find one on referral and set up the appointment and bring them up to speed on the history. They just appeared to drop it in your lap and wish you luck... oh and here's a CD with her scan results. Just so odd.

Disney didn't disappoint with their handling of your situation.

Thanks for the well wishes - it is SO good to be home. It's just all so surreal. I haven't seen my girl in awhile so I have time to post - she's been up in her room all evening with her sister playing with all the new toys she got! lol And I don't feel like doing anything else...so here I am I have so much to do that I can't even begin any of it!

I really don't understand what happened down there - at the time I wasn't disappointed in the care we were receiving, just confused. I'm also not sure why we were even admitted at all? Oh well, things worked out in the end - St Paul Children's was the absolute best care I could ever even imagine receiving.

I was also happy with Disney for changing the name - I really wasn't sure that they would be able to do it. I suppose the fact that I was sobbing while talking to them helped... lol

 

[DopeyDonald]

Just started following your thread. Prayers to your whole family. I can't imagine being away from home in an unfamiliar hospital. I am 45 min from Boston and would be so angry at the way the drs in Orlando handled the situation

Praying for a speedy recovery

Thanks! We too are just scratching our heads at the way it was handled. First the one doc says cyst, then the 2nd one says NO, NOT a cyst But that's beside the point - At least come in and talk to us? I'm not sure what was going on between 1am and 3pm - were we not even being thought about or were they confused about what to do with us?