I have a little more time now so let me introduce myself a little bit more. 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. She felt 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. 6 days later we were keeping her up late for her scheduled EEG and the seizures got longer and progressively worse. We called 911, rushed to the ER, had a CT scan that revealed a lesion, had an MRI that revealed a brain tumor, 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 moved! 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 jut for terminal patients. She referred us, they got the information to our doctor, and then we heard a few weeks ago 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. Today 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.
I have so many questions, but I'll start with these:
1 - Do all MAW-ers get "the button"?
2 - Our son will be 9 months -- has anyone else been with a baby? What was your experience?
3 - Even if your "wish" is Disney related and you stay at GKTW, do you still get the Universal tickets?