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Old 12-30-2012, 10:50 AM   #16
PatsMom
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This thread is the first time I've come across someone else with an unknown primary! Of course, its only been a few weeks since I was diagnosed with that! I have been battling bladder cancer since 2010 but was staged at T1, but high grade. So I had follow up chemo after tumor removal from the bladder. All the protocols were followed - a second staging was completed just to verify no muscle invasion. All looked good. I have had one bladder cancer recurrence which is quite common - staged at T0 but that was just through observation, not biopsy. They fulgurated the tumor (burned it out) right in the doctor's office. Seemed like the quickest way to get it done at that time and no reason to think it was anything other than a recurrence. Bladder cancer has a terrible recurrence rate.

A few weeks later I had terrible abdominal pain. Finally went to see my primary care who ordered an emergency CT scan. She was thinking pancreatitis from my diabetes medication or possibly gall bladder. What they found were para-aortic lymph nodes so enlarged they were causing pain by pressing on the aorta. At this point, most assumed a lymphoma. At about the same time the inguinal lymph nodes became inflamed and a biopsy was done from the left inguinal lymph node. It did not confirm lymphoma and was so poorly differentiated that they could not tell where it had metatastized from. There was speculation that it was gynecological.

So off I went to the gyn oncologist, who is excellent! Very good credentials and highly recommended. He did all of his tests and exams and didn't see any proof that it was ovarian or uterine. But after much discussion among oncologists and urologists it was decided that they should definitely rule out gyn cancers before deciding on a chemo. So this week they removed the uterus, fallopian tubes and ovaries. I came home to recover yesterday. The gyn onc things bladder cancer is the root, uro thinks gyn. They took lymph nodes from the belly hoping to get more information from those as well. We'll get the pathology report next Friday.

I am going to Disney next Sunday, two days after the pathology report! And I guess this is at least stage 3 at this point. Maybe not four yet since they don't see it in my bones and the MRI of my brain isn't back yet. Not my first Disney cancer trip though. I've been several times during bladder cancer treatment. Took care to avoid close contact where possible, washed my hands a lot and had no issues. Last May had a wheelchair trip because of a broken foot but my chemo wasn't that brutal for bladder cancer and I was able to do all my usual stuff.

This trip will be different. Doctor is OK with the three hour flight but definitely no Tower of Terror for me this trip! Avoiding all the coasters and jerky rides. We have a wheel chair from the last trip and are taking it. Thought about an ECV but I will be alternating walking and riding. I need to walk some, but not ten miles a day! We thought about cancelling but this is a big family trip we have been planning for a while. My step-daughter and five year old grandson are going with us. His first trip. And we decided to take my niece so he would have another young chld to enjoy the trip with. My 21 year old daughter is going too. Hard to get six schedules to agree! And the kids have already arranged to be out of school. So we are going and we figure we will have a good time even with my limited mobility. I won't start chemo until we return so that will help with the exhaustion. Surgical recovery is bad enough. Not to mention that there is really nothing they can do for pain but medicate me with narcotics. Pain won't get better until they can treat the cancer.

To all who are on this journey either on their own or with a loved one, you are on my prayer list automatically!
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1981 to 1983 - Disneyland many times November 1987 - Fairway Villas (prior to the Disney Institute)
September 1996 - Fort Wilderness (DD and DH's first trip) October 1999 - Fort Wilderness November 2001 - Fort Wilderness November 2004 - Fort Wilderness November 2005 - Saratoga Springs December 2006 - Saratoga Springs February 2007 - All Star Sports August 2007 - Boardwalk Villas November 2007 - Saratoga Springs February 2008 - Villas at the Wilderness Lodge August 2008 - Old Key West
December 2008 - Saratoga Springs February 2009 - Beach Club Villas September 2009 (50th birthday trip) - Bay Lake Tower January 2010 - Animal Kingdom Villas (Kidani Village) May 2010 - Old Key West September 2010 - Bay Lake Tower May 2011 - Beach Club Villas October 2011 - Saratoga Springs January 2012 - Old Key West May 2012 - Old Key West October 2012 - Old Key West January 2013 - Family gathering at Old Key West; May 2013 - Wilderness Lodge Villas; November 2013 - AKL Jambo House; February 2014 - Saratoga Springs
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Old 12-30-2012, 11:46 AM   #17
lmc318
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Originally Posted by PatsMom View Post
This thread is the first time I've come across someone else with an unknown primary!
OMG SHUT UP! They say unknown primary isn't all that rare, but as you know from experience, we are few and far between! You are only the second person I've "known" with CUP (never having officially met anyone face to face with it). I don't know how much research you've done on it, but having it only in the lymph nodes is a BIG plus. It's one of the good markers for treatment. The other woman I know with it is being treated for pancreatic. She has all the signs of it without an actual tumor. Not good. Pancreatic was my biggest fear. My pathology reports point to upper GI in origin. I'm 42 years old with a 4 year old. I have a lot to live for, as we all do. Anyway, through biologic testing, they basically ruled out pancreatic. I had an ovary and tube removed and a D&C and there was no cancer anywhere but my right inguinal nodes and the retroperitoneal nodes. After the first round of chemo, everything had gone down. After the second round, the report says disease free. They are treating me for gastric cancer and I'm on carboplatin, docetaxol, and 5-FU. I started on cisplatin instead of carboplatin but I was so sick for 2 of 3 weeks between treatments that they switched me. The carboplatin doesn't make you as nauseous. I was afraid it wouldn't be as effective, but clearly it is!

They looked at me for bladder cancer as well. They thought the original pathology showed bladder or gyn, but that doesn't seem to be it. Although I had an upper endoscopy as well and it was negative. I hope they find the origin for you, but just in case, I would have the biological testing done. They can find out what kinds of treatment you'll best react to. Mine showed my current treatment to be the best, so I guess my docs know what they are doing! The report also gave some good options if and when I start to reject the current therapy.

I was out for a good 2 weeks after my ovary and tube were removed, so more power to you for going so soon after your surgery!!! Have a great time!
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Old 12-30-2012, 05:48 PM   #18
Redwolf8812
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Goofygraham - so inspiring! Thanks for joining us.

Patsmom - praying right along with you. Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny
__________________
"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 12-30-2012, 05:55 PM   #19
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Goofygraham - so inspiring! Thanks for joining us.

Patsmom - praying right along with you. Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny
__________________
"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 12-31-2012, 09:36 PM   #20
MdMommy
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Hi! I was diagnosed with metastatic breast cancer (stage IV) in Sept. 2008. This was 5 years after I was diagnosed with my primary breast cancer. I went to WDW in 2009 before I started chemo (was on Femara then Faslodex before chemo) which was pretty much like any other trips I had taken. I went again in 2010 after a year on chemo (Taxol & Avastin). Had to rent an ECV that trip due to fatigue, but still managed fairly well. I am planning my next trip for July 2013. After several years battling the cancer and undergoing chemo, I don't get around as well and suffer not only from fatigue but also from shortness of breath and pain. I will be renting an ECV again. This trip will be a little different. My mets first appeared in my lungs, but now are also in my liver and some of my bones. Due to the risk of fracture, I will need to skip any jarring roller coasters this trip. I will just send my 2 teenage daughters on those rides without me. Hopefully, my condition doesn't worsen much between now and the summer. I have my next PET/CT scan sometime in January and we will see if the current chemo (oral Xeloda) is working or if we need to change. But, I will keep planning for the trip and will adjust what I am able to do if necessary. I love going to WDW and making memories for my daughters.
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Old 01-01-2013, 09:33 AM   #21
Redwolf8812
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Welcome, MdMommy. Please keep us posted about your upcoming scan. Praying for you.

Had my liver ablation yesterday morning. Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.

Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.

I am so blessed!
__________________
"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
6/26-6/30/14 Saratoga Springs
Reservation for The Wilderness Lodge 5/3 - 5/8/15
next - it's all in God's Hands
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Old 01-01-2013, 10:01 AM   #22
PatsMom
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MdMommy, welcome to a group you wish you didn't have to join! I am always interested in reading about how others are coping with a "normal" life activity such as going to Disney. Seems like since stage 4 can go on for so long that it just doesn't make sense to sit home and wait to die. I may as well enjoy my good time and hope that they medical people keep coming up with things to extend that good time.

We are expecting the "dirty looks" whan I arise from the wheelchair and walk for a mile or two. Certainly nothing "looks" wrong with me at this point. But I had a total hysterectormy on Thurs and am leaving for Disney 9 days later on Sun the 6th of Jan. I'll be walking, but not Disney distances. My daughter and husband plan to take a break in the chair when I am not using it. So I have steeled myself to ignore comments of "faker" and crap like that.
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1981 to 1983 - Disneyland many times November 1987 - Fairway Villas (prior to the Disney Institute)
September 1996 - Fort Wilderness (DD and DH's first trip) October 1999 - Fort Wilderness November 2001 - Fort Wilderness November 2004 - Fort Wilderness November 2005 - Saratoga Springs December 2006 - Saratoga Springs February 2007 - All Star Sports August 2007 - Boardwalk Villas November 2007 - Saratoga Springs February 2008 - Villas at the Wilderness Lodge August 2008 - Old Key West
December 2008 - Saratoga Springs February 2009 - Beach Club Villas September 2009 (50th birthday trip) - Bay Lake Tower January 2010 - Animal Kingdom Villas (Kidani Village) May 2010 - Old Key West September 2010 - Bay Lake Tower May 2011 - Beach Club Villas October 2011 - Saratoga Springs January 2012 - Old Key West May 2012 - Old Key West October 2012 - Old Key West January 2013 - Family gathering at Old Key West; May 2013 - Wilderness Lodge Villas; November 2013 - AKL Jambo House; February 2014 - Saratoga Springs
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Old 01-01-2013, 10:26 AM   #23
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Penny, glad to hear that the nausea and pain are subsiding and that you have such thoughtful friends. Sometimes it seems that the treatment for cancer has worse side effects than the cancer itself.

PatsMom, yes it is possible to live with stage IV for years (I was diagnosed over 4 years ago). I refuse to give up on living until I actually die. Although, I am more limited now in what I can physically manage. I was fortunate enough to see my oldest DD graduate from high school last May. I would love to see my youngest DD graduate in a couple of years. My youngest DD is 15 and she asked if we could go to Disney World this year in celebration of her sweet 16. We won't be there for her actual birthday (February so not possible due to school), but we will celebrate her being 16 when we go in the summer. I have to have the ECV because I get short of breath just walking short distances. I don't worry about what other people think. No one ever said anything to me when I used one before and I didn't notice any looks. Just do what you need to do to have a good vacation.
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Old 01-01-2013, 12:15 PM   #24
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Quote:
Originally Posted by Redwolf8812
Welcome, MdMommy. Please keep us posted about your upcoming scan. Praying for you.

Had my liver ablation yesterday morning. Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.

Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.

I am so blessed!
Good to hear the side effects are subsiding. And what a homecoming!! Rest up!

Happy New Year all!
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Old 01-03-2013, 01:31 PM   #25
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I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not. During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see. I'm still praying for remission.
May I say OMG you have cancer so it is OK to use an ECV.
Don't think of it as "I am so bad off that I have to use a wheelchair" but
"I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"
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Old 01-03-2013, 05:44 PM   #26
lmc318
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May I say OMG you have cancer so it is OK to use an ECV.
Don't think of it as "I am so bad off that I have to use a wheelchair" but
"I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"
Oh, thank you! I know, I should feel ok about it and revel in the fact that I can go at all. I still don't like the idea. I'm VERY independent and head strong. But I won't ruin the trip out of stubbornness, so if needed, I'll rent one.

Started round three today - treatment #1. I'm exhausted. Not only did they give me aloxi, which makes me sleepy, but I was up at 5:15 to get ready for a 7AM treatment. Didn't get in until almost 8, but I had one of my favorite nurses, so it was worth it. They're trying to get in all the treatments missed over the holidays, so it was packed in the infusion room and waiting room. Actually, mostly the waiting room. The infusion room seemed about 1/2 full. Don't know what the hold up was. There were plenty of staff members.

Anyhoo, 1 down, 2 to go! Woohooooo!
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Old 01-03-2013, 10:06 PM   #27
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My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.
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Old 01-04-2013, 10:19 AM   #28
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Originally Posted by DCDisney View Post
My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.
I'm so sorry to hear this news. My heart breaks for her and you and the family. CUP sucks in so many ways, especially because they don't exactly know how to treat it and it's pretty much a guessing game. I'm very aware of how lucky I am even to get this improvement for now, even if I never go into remission. With lung and pancreatic being the top two types of eventual types of diagnosis for CUP, it makes me very happy to hear things like Obama just singing into law funding for priority research for the most deadly cancers, lung and pancreatic being the top two.

Do what you can with her. Work aorund chemo. Once you get a set schedule down, go. Even if it's just for three days and she's in a wheelchair, it will be something she and her little ones will always have. Make memories for her and for you and for them. I can't give these enough.
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Old 01-04-2013, 10:21 AM   #29
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How about a Survivors group?

I was thinking that we've gotten a pretty good response here, so maybe we should start a DIS Survivors and Givers group. Kind of like DIS Dads did for all dads, this would be for anyone who has had, is battling, or is helping to fight for someone with cancer. What do you think? It would be great to get and give suggestions from and for all kinds of experienced survivors and care givers.
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Old 01-05-2013, 08:37 AM   #30
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Quote:
Originally Posted by DCDisney View Post
My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer. Very scary with lung, pancreas, and lymph nodes all involved. 1st set of chemo didn't work but halfway through a new type and hoping for some improvement. I so want her to get healthy enough to be able to take her kids to WDW. I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc. We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs. It's just a really awful thing in general and esp with pancreas.
I am so sorry to hear about your sister. One of the blessings I count when I am not feeling so good is that the cancer remained away until my daughter turned 21. She will graduate from college this spring so I am most likely going to be there for that. Two toddlers would be heart breaking.

The docs doing chemo are usually willing to work with you for vacations and things. Especially when the prognosis is a bit grim and making a huge family memory is involved. A wheelchair or scooter will help with stamina - just make sure to get up and walk sometimes! You really get even more sore sitting all day. If you go off season and don't need to eat at prime time, ADR's for character meals should be doable. We are doing dinner at Chef Mickey's this trip and breakfast at Tusker House. My grandson's first trip and we figured this way he would meet some of his top characters without waits. If you have girls, consider Akershus for a princess breakfast instead of Cinderella's. Much easier to get!

The pain sucks the worst. People dont' realize that cancer hurts. They understand when you are in pain from surgery or something like that but don't realize that just having the cancer hurts. The pressure my lymph nodeds put on various body parts causes intense pain. And your sister probably doesn't want people to know how bad she hurts - you do get tired of people asking how you feel. I'd rather have them ask me what I feel like doing! Don't know why but that makes a difference.
__________________
1981 to 1983 - Disneyland many times November 1987 - Fairway Villas (prior to the Disney Institute)
September 1996 - Fort Wilderness (DD and DH's first trip) October 1999 - Fort Wilderness November 2001 - Fort Wilderness November 2004 - Fort Wilderness November 2005 - Saratoga Springs December 2006 - Saratoga Springs February 2007 - All Star Sports August 2007 - Boardwalk Villas November 2007 - Saratoga Springs February 2008 - Villas at the Wilderness Lodge August 2008 - Old Key West
December 2008 - Saratoga Springs February 2009 - Beach Club Villas September 2009 (50th birthday trip) - Bay Lake Tower January 2010 - Animal Kingdom Villas (Kidani Village) May 2010 - Old Key West September 2010 - Bay Lake Tower May 2011 - Beach Club Villas October 2011 - Saratoga Springs January 2012 - Old Key West May 2012 - Old Key West October 2012 - Old Key West January 2013 - Family gathering at Old Key West; May 2013 - Wilderness Lodge Villas; November 2013 - AKL Jambo House; February 2014 - Saratoga Springs
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