Adrismommy
Earning My Ears
- Joined
- Mar 24, 2010
My family is so excited about our (hopefully) July trip to Disney so I'm ready to get started planning and ask you all lots of questions. Let me share our story.
My daughter, Adri, is a spunky little toe-head that is quite the princess and never stops talking. In early January she had a weird spell of staring into space... we found it strange but she did it 3 times the next day so I called the doctor. They said to bring her in and she actually did it while we were there. The doctor felt pretty sure she was having absence seizures and scheduled an EEG. I have some cousins that had childhood epilepsy so we were prepared for that diagnosis. Six days later we were keeping her up late for her scheduled EEG and the seizures got longer and progressively worse. We called 911, were rushed to the ER via ambulance, had a CT scan that revealed a lesion, had an MRI that revealed a brain tumor, were admitted to PICU and had surgery 4 days after that. Her surgery was 2 days shy of 2 weeks from the first time anything abnormal had happened at all. It was truly a whirlwind! We were in the hospital for 2 weeks then once week after we left, we closed on our old house, bought a new one, and moved all of our stuff! In the midst of that my husband was juggling his dissertation proposal and we had a then 4 month old. Our life was C-R-A-Z-Y. We're just over 2 months removed from that time and I wonder how my head is on straight.
The good news is that the tumor was grade 2, not very aggressive, and the immediate follow-up scan showed that it was all removed from the resection. There was one tiny spot that was somewhat questionable that will be watched closely. Her first follow-up MRI is in a month. If you saw her today you'd think I was telling you a lie because she looks and acts like any other 3 year old. It's really remarkable how resilient kids can be. If the tumor comes back or if any is still there she will have another surgery or chemo. Hopefully neither!
Some friends of ours had a similar story with their 14 year old a few years ago. She did Make-A-Wish and that was the first time I realized that it wasn't just for terminal patients. She referred us, they got the information to our doctor, and then we got a letter in the mail few weeks ago telling us that Adri was eligible. We were so so so excited!
I knew without a doubt that she would pick Disney. She is quite the princess and was Cinderella for Halloween. We actually took a quickly planned 4 day Disney trip last spring. I was 16 weeks pregnant and it was one of those, "well we may as well go while she's still free" trips. We had fun - but being pregnant and taking a just-turned-2-year-old was exhausting. We didn't do any character meals or anything like that. It was fun and we were so glad we did it, but we definitely didn't get to do it "all the way."
When our wish granters came out, they talked with us a little about the trip and told us that we'd be staying at GKTW. I think I may have heard of it but didn't know much about it. The more I read and find out, I am just giddy with excitement. I know that this trip is going to be an amazing opportunity for our family. And after the month from hell and having to watch your 2 year old go through brain surgery, it's nice to have something to get excited about!
My husband is a school administrator and is finishing up his PhD. Yesterday we realized that the dates we initially put down as our 1st and 2nd choice were going to be the weeks leading up to his defense of his thesis, which is bad timing. I called my wish granters and changed our preferences so that's where we stand now. I'm so anxious to find out for sure when we'll be traveling and get started with planning. I'm learning so much just by reading through all of your TRs and just this entire thread in general.
When we take the trip Adri will be about 3 1/2 and Cooper will be 9 months. We wouldn't do it without the whole family, but I hope that having a nursing baby in tow doesn't hinder Adri from doing everything she wants to do. I'd love any and all tips about traveling with a baby. Luckily, Cooper is a very very easy baby. Hopefully he'll adapt well and take naps in the stroller.
I guess I'll update this thread with our for sure dates and keep questions going. Thanks for following us on this exciting journey!
My daughter, Adri, is a spunky little toe-head that is quite the princess and never stops talking. In early January she had a weird spell of staring into space... we found it strange but she did it 3 times the next day so I called the doctor. They said to bring her in and she actually did it while we were there. The doctor felt pretty sure she was having absence seizures and scheduled an EEG. I have some cousins that had childhood epilepsy so we were prepared for that diagnosis. Six days later we were keeping her up late for her scheduled EEG and the seizures got longer and progressively worse. We called 911, were rushed to the ER via ambulance, had a CT scan that revealed a lesion, had an MRI that revealed a brain tumor, were admitted to PICU and had surgery 4 days after that. Her surgery was 2 days shy of 2 weeks from the first time anything abnormal had happened at all. It was truly a whirlwind! We were in the hospital for 2 weeks then once week after we left, we closed on our old house, bought a new one, and moved all of our stuff! In the midst of that my husband was juggling his dissertation proposal and we had a then 4 month old. Our life was C-R-A-Z-Y. We're just over 2 months removed from that time and I wonder how my head is on straight.
The good news is that the tumor was grade 2, not very aggressive, and the immediate follow-up scan showed that it was all removed from the resection. There was one tiny spot that was somewhat questionable that will be watched closely. Her first follow-up MRI is in a month. If you saw her today you'd think I was telling you a lie because she looks and acts like any other 3 year old. It's really remarkable how resilient kids can be. If the tumor comes back or if any is still there she will have another surgery or chemo. Hopefully neither!
Some friends of ours had a similar story with their 14 year old a few years ago. She did Make-A-Wish and that was the first time I realized that it wasn't just for terminal patients. She referred us, they got the information to our doctor, and then we got a letter in the mail few weeks ago telling us that Adri was eligible. We were so so so excited!
I knew without a doubt that she would pick Disney. She is quite the princess and was Cinderella for Halloween. We actually took a quickly planned 4 day Disney trip last spring. I was 16 weeks pregnant and it was one of those, "well we may as well go while she's still free" trips. We had fun - but being pregnant and taking a just-turned-2-year-old was exhausting. We didn't do any character meals or anything like that. It was fun and we were so glad we did it, but we definitely didn't get to do it "all the way."
When our wish granters came out, they talked with us a little about the trip and told us that we'd be staying at GKTW. I think I may have heard of it but didn't know much about it. The more I read and find out, I am just giddy with excitement. I know that this trip is going to be an amazing opportunity for our family. And after the month from hell and having to watch your 2 year old go through brain surgery, it's nice to have something to get excited about!
My husband is a school administrator and is finishing up his PhD. Yesterday we realized that the dates we initially put down as our 1st and 2nd choice were going to be the weeks leading up to his defense of his thesis, which is bad timing. I called my wish granters and changed our preferences so that's where we stand now. I'm so anxious to find out for sure when we'll be traveling and get started with planning. I'm learning so much just by reading through all of your TRs and just this entire thread in general.
When we take the trip Adri will be about 3 1/2 and Cooper will be 9 months. We wouldn't do it without the whole family, but I hope that having a nursing baby in tow doesn't hinder Adri from doing everything she wants to do. I'd love any and all tips about traveling with a baby. Luckily, Cooper is a very very easy baby. Hopefully he'll adapt well and take naps in the stroller.
I guess I'll update this thread with our for sure dates and keep questions going. Thanks for following us on this exciting journey!
I'm subscribing and following along! Can't wait to hear more plans.
