casper_jj11
DIS Veteran
- Joined
- Jun 27, 2006
We have our dates so its all a little more real so I guess its time to finally do a pre-trip report. Its DH, myself, DS7, DD4 (the wish child) and DS2. We'll be heading to Disney World on August 7th and while the wish portion of Sydney's trip will end on August 14th, we're hoping to extend the trip until August 17th. While this will be our fifth trip to WDW with the kiddos, it was still Sydney's first choice when she was granted a wish. She's everything princess and for her, there was no other option. But, I'm getting ahead of myself. I should probably tell you a little about how we got to this place.
Sydney's arrival into the world was far from uneventful. She has an older brother but we lost four little ones trying to have her. Despite the problems, she was born after only 10 hours of relatively easy labour considering that I couldn't take any pain meds during the delivery. Five weeks later, Sydney was having some minor problems with spitting up her milk. Her paediatrician is fantastic and didn't hestitate to send her into the children's hospital for an ultrasound to rule out a disorder that causes reflux (not sure of the name). They didn't find any reason for the spitting up but did find a small mass on her left adrenal gland. My oldest has a bleeding disorder so they assumed she had it as well and that it was a small bleed from the trauma of delivery. Sydney's paed wanted to watch it so sent us back for u/s every 3months. When Sydney was 8mo old, the mass was still there and her paed figured it was time to get specialists involved. We were referred to oncology at the children's hospital. It was actually the same doctors as my son visited in haematology so we already knew them which was nice. They explained that this was likely a benign mass called a ganglioneuroma which some children are born with. They ran so many tests on my little girl but they all came back negative. We had our first trip to Disney planned for the following month, August, and we were given the green light to go. It was a celebration for us. By the time Christmas came, DH and I were convinced that she was fine. They wanted to do one follow up at the six month mark which would be in January 2007, around the same time I would be returning to work from mat leave (we get one year mat leave here). DH and I decided that we'd try for baby #3. Early in January, Sydney returned to the hospital for an ultrasound, just to check the size of the tumor. There was a problem: it had grown. Oncology decided to then run a urine test to check her catecholamines. These were normal at the last test and they had no intention of running them again. Then, we waited. The day before Sydney's 1st bday, I learned I was pregnant with our youngest. She seemed so young still that I was worried. And I was also worried about the tests that were just done. A week after Sydney's bday, I returned to work. The following day, Sydney had her 1yr apptmt with her paed. While we were there, she called the hospital just to see if the test results were back yet. To our surprise, they were. And it wasn't good. The catecholamine levels were elevated above normal. My little girl had a type of cancer called neuroblastoma. Its cancer of the nervous system, its rare and it often kills. Needless to say, I was a wreck. I called DH at work from the paed office and he came home immediately. We met with the oncologist two hours later. Sydney was scheduled for a battery of tests the following week to stage the cancer. On the way back, we stopped at my doctor's office... I was pregnant and had already lost 5 babies.... I needed to know if this pregnancy was viable because if it was, I couldn't go into any of the tests with Sydney because of the danger of exposing the baby to radiation. A few days later, my u/s showed the baby as being perfect for gestation. The following week, Sydney went through bone marrow test, mibg testing, ct scans and more urine tests. I waited outside while DH went with her. The results were good. Her urine still showed that she had cancer... it wasn't a mistake. But the bone marrow test and mibg were negative... it wasn't metastatic... yet. An incredibly, the ct scan showed that the tumor hadn't grown from when the last ct was done the July earlier. That meant that her u/s in January was wrong. At that point, we truly believed that Sydney has a guardian angel watching her. If the u/s wasn't incorrect, they never would have run the urine in January and this cancer would have continued to grow not to be discovered until it was too late. As it was, she was in very good shape. Her surgery to remove her left adrenal gland (as the tumor had completely subsumed it) was scheduled for March 3, 2007. She flew through the surgery with flying colours and was released from the hospital early. They were able to remove the full tumor as well as nearby lymph nodes. Because the cancer was stage one and she was under one year of age at the time of diagnosis and there was no evidence of cancer in her lymph nodes, she wouldn't need chemo or radiation. A month after her surgery, we received approval to take Sydney on a trip. We took them back to Disney to regroup as a family. It was a short trip but magical because of all we'd been through. Sydney went through ct scans and later MRIs as well as urine tests every 3 months for the first year. Even though she needed to be put under for the tests, she was a trooper. It was a blessing that she was as young as she was because she wasn't old enough to be afraid. She then moved to 6mo follow up with just urine tests to check her catecholamine levels.
When Sydney was two, she was granted a wish by the Children's Wish Foundation of Canada. We decided to wait until she was old enough to have a say in what she would like to wish for. Last fall, at one of Sydney's 6mo follow up visits, one of her catecholamine levels was elevated again. We were told not to worry, they've had an issue with the testing at the lab that month and they'd rerun the test the following month. It was one of the worst months of my life... just waiting and not knowing. The followup showed normal levels.... she was fine. In December, we contacted the wish foundation and told them Sydney wanted to make her wish. She turned 4 in January and wished to go back to Disney to have breakfast with the princesses... especially Sleeping Beauty.
Last month, March 18, 2010, Sydney was released from the oncology unit. They told us that there's more chance of Sydney being injured on the playground or in a car than this cancer returning. They ran her catecholamine levels one last time. The following week, we received the dates for Sydney's trip: as requested, just before she starts school. We planned a last minute trip to Mexico to regroup' again. It would have been Disney but we didn't want to take away from the magic that would come with her wish trip. We returned last Sunday night to a voice message from the oncology nurse. There was a problem. Monday morning, we learned that one of the catecholamines is again elevated. There have been no lab errors since that one month anomoly last fall. They don't know why its elevated. She's been placed back in the clinic on an outpatient basis and will stay in clinic until she receives three normal tests. They test next Monday, two months later and three months after that. I'm trying to stay hopeful but I truly believe its back. I don't trust the lab after the events last fall so I'm working on trying to get an outside lab to run her tests as well. We'll see what the next few months will hold ....
In the meantime, I'm trying to focus on the positive. I want this trip to be the best ever. I want it to be everything my princess wants. Our dates are booked. We plan to extend the trip on our own if we can. I know everyone loves GKTW but I know my little girl and what better place to stay than where Cinderella visits every day... the Grand Floridian. Her wish has been granted and we'll be at the Grand Floridian for a week, which we plan to extend for three more days so we can have some downtime during the trip. We've never been to Universal so we'll likely go for a day since really, its geared to children older than Sydney. We've been to Seaworld but Sydney really wants to visit the dolphins so we'll definitely do that. We'd like to have more than 3 days in Disney parks so I plan to get tickets as well so that we can go each day for the full duration of our trip if we wish. The wish foundation has booked BBB for Sydney and I've booked CRT breakfast for her for later that morning. Hopefully Sleeping Beauty will be there as she is Sydney's favourite princess. I've also booked 1900 Park Fare for that evening for dinner so Sydney can be a real princess when she meets Cinderella and Prince Charming. She's looking forward to the ugly stepsisters making fun of her Daddy. I've also booked Akershus for the following evening just in case we didn't get to eat with Sleeping Beauty. I'm also going to arrange many downtimes so that Sydney and her brothers can have fun in the pools.
Wow, that was a lot more than I planned. I'll post pics once I figure out how. And I'll try to update regularly.
Sydney's arrival into the world was far from uneventful. She has an older brother but we lost four little ones trying to have her. Despite the problems, she was born after only 10 hours of relatively easy labour considering that I couldn't take any pain meds during the delivery. Five weeks later, Sydney was having some minor problems with spitting up her milk. Her paediatrician is fantastic and didn't hestitate to send her into the children's hospital for an ultrasound to rule out a disorder that causes reflux (not sure of the name). They didn't find any reason for the spitting up but did find a small mass on her left adrenal gland. My oldest has a bleeding disorder so they assumed she had it as well and that it was a small bleed from the trauma of delivery. Sydney's paed wanted to watch it so sent us back for u/s every 3months. When Sydney was 8mo old, the mass was still there and her paed figured it was time to get specialists involved. We were referred to oncology at the children's hospital. It was actually the same doctors as my son visited in haematology so we already knew them which was nice. They explained that this was likely a benign mass called a ganglioneuroma which some children are born with. They ran so many tests on my little girl but they all came back negative. We had our first trip to Disney planned for the following month, August, and we were given the green light to go. It was a celebration for us. By the time Christmas came, DH and I were convinced that she was fine. They wanted to do one follow up at the six month mark which would be in January 2007, around the same time I would be returning to work from mat leave (we get one year mat leave here). DH and I decided that we'd try for baby #3. Early in January, Sydney returned to the hospital for an ultrasound, just to check the size of the tumor. There was a problem: it had grown. Oncology decided to then run a urine test to check her catecholamines. These were normal at the last test and they had no intention of running them again. Then, we waited. The day before Sydney's 1st bday, I learned I was pregnant with our youngest. She seemed so young still that I was worried. And I was also worried about the tests that were just done. A week after Sydney's bday, I returned to work. The following day, Sydney had her 1yr apptmt with her paed. While we were there, she called the hospital just to see if the test results were back yet. To our surprise, they were. And it wasn't good. The catecholamine levels were elevated above normal. My little girl had a type of cancer called neuroblastoma. Its cancer of the nervous system, its rare and it often kills. Needless to say, I was a wreck. I called DH at work from the paed office and he came home immediately. We met with the oncologist two hours later. Sydney was scheduled for a battery of tests the following week to stage the cancer. On the way back, we stopped at my doctor's office... I was pregnant and had already lost 5 babies.... I needed to know if this pregnancy was viable because if it was, I couldn't go into any of the tests with Sydney because of the danger of exposing the baby to radiation. A few days later, my u/s showed the baby as being perfect for gestation. The following week, Sydney went through bone marrow test, mibg testing, ct scans and more urine tests. I waited outside while DH went with her. The results were good. Her urine still showed that she had cancer... it wasn't a mistake. But the bone marrow test and mibg were negative... it wasn't metastatic... yet. An incredibly, the ct scan showed that the tumor hadn't grown from when the last ct was done the July earlier. That meant that her u/s in January was wrong. At that point, we truly believed that Sydney has a guardian angel watching her. If the u/s wasn't incorrect, they never would have run the urine in January and this cancer would have continued to grow not to be discovered until it was too late. As it was, she was in very good shape. Her surgery to remove her left adrenal gland (as the tumor had completely subsumed it) was scheduled for March 3, 2007. She flew through the surgery with flying colours and was released from the hospital early. They were able to remove the full tumor as well as nearby lymph nodes. Because the cancer was stage one and she was under one year of age at the time of diagnosis and there was no evidence of cancer in her lymph nodes, she wouldn't need chemo or radiation. A month after her surgery, we received approval to take Sydney on a trip. We took them back to Disney to regroup as a family. It was a short trip but magical because of all we'd been through. Sydney went through ct scans and later MRIs as well as urine tests every 3 months for the first year. Even though she needed to be put under for the tests, she was a trooper. It was a blessing that she was as young as she was because she wasn't old enough to be afraid. She then moved to 6mo follow up with just urine tests to check her catecholamine levels.
When Sydney was two, she was granted a wish by the Children's Wish Foundation of Canada. We decided to wait until she was old enough to have a say in what she would like to wish for. Last fall, at one of Sydney's 6mo follow up visits, one of her catecholamine levels was elevated again. We were told not to worry, they've had an issue with the testing at the lab that month and they'd rerun the test the following month. It was one of the worst months of my life... just waiting and not knowing. The followup showed normal levels.... she was fine. In December, we contacted the wish foundation and told them Sydney wanted to make her wish. She turned 4 in January and wished to go back to Disney to have breakfast with the princesses... especially Sleeping Beauty.
Last month, March 18, 2010, Sydney was released from the oncology unit. They told us that there's more chance of Sydney being injured on the playground or in a car than this cancer returning. They ran her catecholamine levels one last time. The following week, we received the dates for Sydney's trip: as requested, just before she starts school. We planned a last minute trip to Mexico to regroup' again. It would have been Disney but we didn't want to take away from the magic that would come with her wish trip. We returned last Sunday night to a voice message from the oncology nurse. There was a problem. Monday morning, we learned that one of the catecholamines is again elevated. There have been no lab errors since that one month anomoly last fall. They don't know why its elevated. She's been placed back in the clinic on an outpatient basis and will stay in clinic until she receives three normal tests. They test next Monday, two months later and three months after that. I'm trying to stay hopeful but I truly believe its back. I don't trust the lab after the events last fall so I'm working on trying to get an outside lab to run her tests as well. We'll see what the next few months will hold ....
In the meantime, I'm trying to focus on the positive. I want this trip to be the best ever. I want it to be everything my princess wants. Our dates are booked. We plan to extend the trip on our own if we can. I know everyone loves GKTW but I know my little girl and what better place to stay than where Cinderella visits every day... the Grand Floridian. Her wish has been granted and we'll be at the Grand Floridian for a week, which we plan to extend for three more days so we can have some downtime during the trip. We've never been to Universal so we'll likely go for a day since really, its geared to children older than Sydney. We've been to Seaworld but Sydney really wants to visit the dolphins so we'll definitely do that. We'd like to have more than 3 days in Disney parks so I plan to get tickets as well so that we can go each day for the full duration of our trip if we wish. The wish foundation has booked BBB for Sydney and I've booked CRT breakfast for her for later that morning. Hopefully Sleeping Beauty will be there as she is Sydney's favourite princess. I've also booked 1900 Park Fare for that evening for dinner so Sydney can be a real princess when she meets Cinderella and Prince Charming. She's looking forward to the ugly stepsisters making fun of her Daddy. I've also booked Akershus for the following evening just in case we didn't get to eat with Sleeping Beauty. I'm also going to arrange many downtimes so that Sydney and her brothers can have fun in the pools.
Wow, that was a lot more than I planned. I'll post pics once I figure out how. And I'll try to update regularly.
Can't wait to read more and hope all her tests come back with a clean bill of health!!!
I do hope that planning for all of the magic that is to come for this trip will take your mind off of all of that and help pass the time. 
While this is really good news, we're all a little hesitant to truly believe it given her history. We still haven't spoken with her oncologist which is causing part of the concern but our paed told us that she definitely was told we'd meet with the oncologist after the results were back so for now, we're waiting. We have some contacts in the US that we're now trying to touch base with just in case we need to take her elsewhere to find out what's happening. That said, looking at her, you'd never know there was anything wrong. She's one very happy and active little girl.
I really need to get our plan finalized so I can cancel some ressies and get a few for days that apparently, I have none 
.
lovestruc Her brothers are cute too
What a beautiful cake. I really like that.
But you were very prepared and that is a good thing!
DH is in Chicago this week so we'll see if he goes for it. 
