casper_jj11
DIS Veteran
- Joined
- Jun 27, 2006
Where do I start? We returned home about two weeks ago from the most amazing, magical experience that we're likely to ever have. Was it perfect? No, but life rarely is. 
For those that followed our PTR, HI!
For anyone new, especially any new wish families planning trips, I hope you enjoy the report and I hope there's something here that will be helpful as you plan.
I guess I should give a bit of a background. I'm mom to three wonderful kiddos: Lucas is turning 8 later this month, Caiden is turning 3 in two weeks and Sydney, our wish kiddo, is 4 going on 14. She really is older than her years but I think that's in large part due to everything she's been through. She starts school in two weeks and I'm having a bit of a hard time grasping that really.
Sydney was diagnosed with neuroblastoma (cancer of the sympathetic nervous system) just after her first birthday. We were completely blindsided. Our journey started when she was only 5 weeks old. Her paediatrician ordered an ultrasound to see if there was a reason for her reflux. The ultrasound shows her reflux was normal; however, there was a mass in her left adrenal gland. Our paediatrician didn't give up and kept sending us back for more ultrasounds. By the time Sydney was 8 months old, we had a referral to oncology, just to see. They ran a full range of tests over the run of a week and concluded that Sydney had a benign mass in her adrenal gland and that she'd be just fine. We were relieved, to say the least. We had our first trip to Disney World planned for a few weeks later and the doctors said to go, she was fine. So we did. Oncology wanted to do a follow up ultrasound and urine test in three months just as a last follow up so we did that in early January 2007 (this type of cancer can be detected with a simple urine test).
A few weeks later, the day before Sydney's first birthday, we found out I was pregnant with Caiden. It wasn't a surprise. We decided that month that we wanted three kiddos and whenever we tried, I got pregnant... my problem was keeping them. I had lost one baby before Lucas and four trying for Sydney. We learned I had a clotting disorder causing the miscarriages so I needed many medications including daily heparin type injections to prevent another miscarriage. I still had medication left over from being pregnant with Sydney so I started that and booked an appointment with my doctor for a few weeks time. The next day, we celebrated Sydney's first birthday. The following week I took Sydney for her one year doctor's appointment.They called the lab to see if the test results were back and everyone was in shock. The ultrasound had shown the mass had grown. And the urine test was positive. It was cancer. I think I'll remember that day for the rest of my life. It was all in slow motion. We met the oncologists within hours and on the way home, I went to my own doctor's office. I had to know if the pregnancy was viable. If so, I couldn't go into any testing that Sydney was scheduled for the following week. It turns out that Caiden was a real little fighter. For all we went through over the next nine months, he was just fine. Sydney was scheduled for surgery to remove her left adrenal gland. The tumor had completely subsumed it so they said it wasn't working anyway. She flew through the surgery with flying colours and was actually released early. Because they caught the cancer just as it went active, it hadn't spread. She didn't need chemo or radiation, thank God.
Every three months she was put under for a CT or MRI to make sure it wasn't back. Before her first follow up MRI and once we had the go head from her doctors, we took the children back to Disney. We needed to recoup and for us, Disney was magical. After the first year, she moved to 6 month follow up with urine testing only, no more scans. Everything was fine until last Fall. Out of the blue, the urine test flagged. They retested the following month and everything was fine. We were told it was lab error.
Sydney had been granted a wish when she was just 2 years old but she wasn't allowed to take it until she was at least 3. We decided to wait until she was a bit older so she could truly have a say in what she wanted to do. She's a princess fanatic so no one was surprised when this past Christmas she decided that she wanted to return to Disney to eat with the princesses. She asked to stay where the princesses stay and she asked to see dolphins.
Three months later, Sydney was released her from the oncology outpatient clinic. They did one last urine test but told us there was more danger to her on the playground. It was hard to believe after all this time. And I'll be honest, it did make me a bit uneasy but I think everyone goes through that. One month later though we were told there was a problem. That last urine test, it flagged again. They retested and she was fine but they said the first test wasn't an error. It was back. We were told they missed something during the surgery but we shouldn't worry because it seems to be healing itself. They wouldn't scan her but said they wanted to watch her. By the time this cancer is usually found in children, its gone metastatic. We weren't willing to wait and see. I had started planning Sydney's trip a few weeks before and thanks to a wonderful wish mom on the Dis whose little one also had cancer, we were give contact information for one of the leading researchers on neuroblastoma in the US. She was amazing! Within three weeks we were at the children's hospital in Chicago. Sydney was given a CT scan as well as other testing. The results: she's fine. Its not back. There's nothing there. Our hospital made a mistake. The weight of the world was off our shoulders. She really was ok.
Sydney had her trip in August and we extended it by four days so she could do everything she wanted. We had an option of staying at Give Kids the World or staying onsite. Because Sydney wanted to stay where the princesses stay, she was granted the wish of staying at the Grand Floridian, where the princess meals and teas are held. She met every princess including several princesses' that we didn't expect to find like Pocahontas. She even ate with many which was a significant part of her wish. Our wish foundation invited her to the Bippity Boppity Boutique where she became Princess Tiana. She fed dolphins and sea lions. And she met Santa. It truly was everything that any four year old little girl could wish for... and more.
I've been trying to write the TR in full first but I realize that by the time that's done, many wish families who are planning will have already left so its probably best if I post day by day as I write it. Our best pictures are on the photopass CD which we haven't ordered yet though so I may update some posts later with better pics.
Enjoy!
For those that followed our PTR, HI!
For anyone new, especially any new wish families planning trips, I hope you enjoy the report and I hope there's something here that will be helpful as you plan.I guess I should give a bit of a background. I'm mom to three wonderful kiddos: Lucas is turning 8 later this month, Caiden is turning 3 in two weeks and Sydney, our wish kiddo, is 4 going on 14. She really is older than her years but I think that's in large part due to everything she's been through. She starts school in two weeks and I'm having a bit of a hard time grasping that really.
Sydney was diagnosed with neuroblastoma (cancer of the sympathetic nervous system) just after her first birthday. We were completely blindsided. Our journey started when she was only 5 weeks old. Her paediatrician ordered an ultrasound to see if there was a reason for her reflux. The ultrasound shows her reflux was normal; however, there was a mass in her left adrenal gland. Our paediatrician didn't give up and kept sending us back for more ultrasounds. By the time Sydney was 8 months old, we had a referral to oncology, just to see. They ran a full range of tests over the run of a week and concluded that Sydney had a benign mass in her adrenal gland and that she'd be just fine. We were relieved, to say the least. We had our first trip to Disney World planned for a few weeks later and the doctors said to go, she was fine. So we did. Oncology wanted to do a follow up ultrasound and urine test in three months just as a last follow up so we did that in early January 2007 (this type of cancer can be detected with a simple urine test).
A few weeks later, the day before Sydney's first birthday, we found out I was pregnant with Caiden. It wasn't a surprise. We decided that month that we wanted three kiddos and whenever we tried, I got pregnant... my problem was keeping them. I had lost one baby before Lucas and four trying for Sydney. We learned I had a clotting disorder causing the miscarriages so I needed many medications including daily heparin type injections to prevent another miscarriage. I still had medication left over from being pregnant with Sydney so I started that and booked an appointment with my doctor for a few weeks time. The next day, we celebrated Sydney's first birthday. The following week I took Sydney for her one year doctor's appointment.They called the lab to see if the test results were back and everyone was in shock. The ultrasound had shown the mass had grown. And the urine test was positive. It was cancer. I think I'll remember that day for the rest of my life. It was all in slow motion. We met the oncologists within hours and on the way home, I went to my own doctor's office. I had to know if the pregnancy was viable. If so, I couldn't go into any testing that Sydney was scheduled for the following week. It turns out that Caiden was a real little fighter. For all we went through over the next nine months, he was just fine. Sydney was scheduled for surgery to remove her left adrenal gland. The tumor had completely subsumed it so they said it wasn't working anyway. She flew through the surgery with flying colours and was actually released early. Because they caught the cancer just as it went active, it hadn't spread. She didn't need chemo or radiation, thank God.
Every three months she was put under for a CT or MRI to make sure it wasn't back. Before her first follow up MRI and once we had the go head from her doctors, we took the children back to Disney. We needed to recoup and for us, Disney was magical. After the first year, she moved to 6 month follow up with urine testing only, no more scans. Everything was fine until last Fall. Out of the blue, the urine test flagged. They retested the following month and everything was fine. We were told it was lab error.
Sydney had been granted a wish when she was just 2 years old but she wasn't allowed to take it until she was at least 3. We decided to wait until she was a bit older so she could truly have a say in what she wanted to do. She's a princess fanatic so no one was surprised when this past Christmas she decided that she wanted to return to Disney to eat with the princesses. She asked to stay where the princesses stay and she asked to see dolphins.
Three months later, Sydney was released her from the oncology outpatient clinic. They did one last urine test but told us there was more danger to her on the playground. It was hard to believe after all this time. And I'll be honest, it did make me a bit uneasy but I think everyone goes through that. One month later though we were told there was a problem. That last urine test, it flagged again. They retested and she was fine but they said the first test wasn't an error. It was back. We were told they missed something during the surgery but we shouldn't worry because it seems to be healing itself. They wouldn't scan her but said they wanted to watch her. By the time this cancer is usually found in children, its gone metastatic. We weren't willing to wait and see. I had started planning Sydney's trip a few weeks before and thanks to a wonderful wish mom on the Dis whose little one also had cancer, we were give contact information for one of the leading researchers on neuroblastoma in the US. She was amazing! Within three weeks we were at the children's hospital in Chicago. Sydney was given a CT scan as well as other testing. The results: she's fine. Its not back. There's nothing there. Our hospital made a mistake. The weight of the world was off our shoulders. She really was ok.
Sydney had her trip in August and we extended it by four days so she could do everything she wanted. We had an option of staying at Give Kids the World or staying onsite. Because Sydney wanted to stay where the princesses stay, she was granted the wish of staying at the Grand Floridian, where the princess meals and teas are held. She met every princess including several princesses' that we didn't expect to find like Pocahontas. She even ate with many which was a significant part of her wish. Our wish foundation invited her to the Bippity Boppity Boutique where she became Princess Tiana. She fed dolphins and sea lions. And she met Santa. It truly was everything that any four year old little girl could wish for... and more.
I've been trying to write the TR in full first but I realize that by the time that's done, many wish families who are planning will have already left so its probably best if I post day by day as I write it. Our best pictures are on the photopass CD which we haven't ordered yet though so I may update some posts later with better pics.
Enjoy!
We leave just over 4 weeks.
The alarm went off at 5am. I had a shower, finished packing the few things that had to wait til the last minute, and woke the kiddos. They didn’t even question waking while it was dark. They just jumped up and screamed ‘We’re going to Disney!”. 
DH is Star Alliance Silver and I had the online information that he was allowed two pieces where the rest of us could have one. When we got our boarding passes on Friday night the system even allotted us 6 total because of his airline status but the check in lady kept insisting that we were wrong. Low and behold, when she actually used her computer, there was no problem at all. 
He was separated from the rest of us and taken off to the side. Good job he didn’t pack the rest of the bags. They only wanted the ones he packed which was his briefcase... that left me with three kids and four carry on bags to get through security. Sounds scary but I found it so funny that DH was sent for special screening that I didn’t care. It was the start of an adventure! 
