Hello to everyone. I have waited to start this until now because we were not sure when or if this trip was going to happen. The last few days things have really started to come together though, so I think it's safe to start now.
My name is Gary, my wife is Jessica. We are both 32 years old. We have 3 children. Seth (wish kid) is 8 years old, Alexis will be 7 years old on Monday, and our youngest Claire will turn 3 years old on May 19th, which is the date we are scheduled to leave to Disney. None of us have ever been to DisneyWorld so we are all very excited about this trip, and looking forward to it.
Seth was an extremely healthy 7 year old kid. He hardly ever got sick in even the smallest way. His sisters would get nasty colds and it would pass right by him. This was until Late May 2009. Seth starting having migraine headaches and started feeling sick to his stomach. It was not a constant thing, as the symptoms would come and go. Some days he would go to school and be ok, other days he would wake up and feel too sick. He would lay in the dark in his room because it helped his headaches. My wife and I had no idea what could be bothering him. We thought of tons of possibilities including something bothering him at school causing him stress. After about a week of this we took him to the ER. The Doctor there told us that Seth looked fine and that the nausea and headaches should pass in a few days. He told us to bring Seth back after two weeks if they did not go away. After 3 more days of this, we took him back. June 5th, 2009. I'm sure everyone who has a sick child has a moment they can point to when they knew their life would never be the same. That evening in the ER, the doctor took Seth for a CT Scan. The doctor walked by our room and told me and my wife he needed to speak with us outside. That was our moment. We had no idea what it was at this point, but we knew it was something very bad.
Seth had a mass of liquid show up on his CT scan and subsequent MRI. That night they flew him from Reno to Childrens Hospital Oakland. The following day we spoke with the Neurosurgeon who told us that Seth had a tumor and an accompying mass of liquid the size of an egg. They did surgery the following monday to remove it. The surgery was a fabulous success, and Seth recovered and was back home in Reno a week later. It was about two weeks later that we got the next call that changed everything. The tests came back that the tumor was malignant and they expect it to grow back. They wanted to get him back to Oakland and insert a broviac and start him on chemo. His was taking chemo from July through January when he had a stem cell transplant. My wife and I lived in Oakland from January until March while my daughters stayed with my mother. It was very difficult on all of us, and our 3 year old Claire has still not forgiven us for leaving her for 2 months.
Since March, Seth has been back home and doing his radiation treatment. His final radiation was yesterday, and we also got confirmation yesterday from MAW that we will be going. She gave us tentative dates of May 19-25th. She said she will be booking the flights in the next couple of days and will let us know as soon as she does. We will be staying at Give Kids The World. We have no idea what we will be doing and the ideas and stories I have read on here have been of great help. Thanks to everyone for sharing their experiences, and I will post more in the next day or two once my wife and I have a chance to sit down and think about it.
Couple of questions if someone doesn't mind helping.
1. We are worried about expense money. We know that MAW will give us money for expenses but we don't know how much and were hoping someone could give us some insight as to whether we will need to have money of our own or whether what they give you is enough.
2. We are wondering about the tickets. We have heard that you get 3 days worth of tickets to DW, 2 days worth to Universal and 1 day to Sea World. Is this true. If so, are the Disney tickets park hoppers or is it one park per ticket? Any help would be appreciated.
3. Should we start planning things like dining in advance, or would it be better to just find what we want to eat while we are there? I know GKTW provides meals free of charge, but we won't be eating there every meal.
I'm sure I have a thousand more questions, but that's all that comes to mind right now. Thanks for any help and advice.
Gary
My name is Gary, my wife is Jessica. We are both 32 years old. We have 3 children. Seth (wish kid) is 8 years old, Alexis will be 7 years old on Monday, and our youngest Claire will turn 3 years old on May 19th, which is the date we are scheduled to leave to Disney. None of us have ever been to DisneyWorld so we are all very excited about this trip, and looking forward to it.
Seth was an extremely healthy 7 year old kid. He hardly ever got sick in even the smallest way. His sisters would get nasty colds and it would pass right by him. This was until Late May 2009. Seth starting having migraine headaches and started feeling sick to his stomach. It was not a constant thing, as the symptoms would come and go. Some days he would go to school and be ok, other days he would wake up and feel too sick. He would lay in the dark in his room because it helped his headaches. My wife and I had no idea what could be bothering him. We thought of tons of possibilities including something bothering him at school causing him stress. After about a week of this we took him to the ER. The Doctor there told us that Seth looked fine and that the nausea and headaches should pass in a few days. He told us to bring Seth back after two weeks if they did not go away. After 3 more days of this, we took him back. June 5th, 2009. I'm sure everyone who has a sick child has a moment they can point to when they knew their life would never be the same. That evening in the ER, the doctor took Seth for a CT Scan. The doctor walked by our room and told me and my wife he needed to speak with us outside. That was our moment. We had no idea what it was at this point, but we knew it was something very bad.
Seth had a mass of liquid show up on his CT scan and subsequent MRI. That night they flew him from Reno to Childrens Hospital Oakland. The following day we spoke with the Neurosurgeon who told us that Seth had a tumor and an accompying mass of liquid the size of an egg. They did surgery the following monday to remove it. The surgery was a fabulous success, and Seth recovered and was back home in Reno a week later. It was about two weeks later that we got the next call that changed everything. The tests came back that the tumor was malignant and they expect it to grow back. They wanted to get him back to Oakland and insert a broviac and start him on chemo. His was taking chemo from July through January when he had a stem cell transplant. My wife and I lived in Oakland from January until March while my daughters stayed with my mother. It was very difficult on all of us, and our 3 year old Claire has still not forgiven us for leaving her for 2 months.
Since March, Seth has been back home and doing his radiation treatment. His final radiation was yesterday, and we also got confirmation yesterday from MAW that we will be going. She gave us tentative dates of May 19-25th. She said she will be booking the flights in the next couple of days and will let us know as soon as she does. We will be staying at Give Kids The World. We have no idea what we will be doing and the ideas and stories I have read on here have been of great help. Thanks to everyone for sharing their experiences, and I will post more in the next day or two once my wife and I have a chance to sit down and think about it.
Couple of questions if someone doesn't mind helping.
1. We are worried about expense money. We know that MAW will give us money for expenses but we don't know how much and were hoping someone could give us some insight as to whether we will need to have money of our own or whether what they give you is enough.
2. We are wondering about the tickets. We have heard that you get 3 days worth of tickets to DW, 2 days worth to Universal and 1 day to Sea World. Is this true. If so, are the Disney tickets park hoppers or is it one park per ticket? Any help would be appreciated.
3. Should we start planning things like dining in advance, or would it be better to just find what we want to eat while we are there? I know GKTW provides meals free of charge, but we won't be eating there every meal.
I'm sure I have a thousand more questions, but that's all that comes to mind right now. Thanks for any help and advice.
Gary
)
Great for a break from the parks!
It was definitely one of our faves!
