We just got back from our trip to Chicago for the Neuroblastoma Conference that is put on by the Childrens Neuroblastoma Cancer Foundation. I am so thankful that the opportunity for us to go to this conference was there. I can't even begin to adequately express the wealth of information that we received. Britt and I really feel like we have a better grasp of the other treatment options that are available for Elijah and which direction we need to travel in for our next leg in this cancer journey. We had the opportunity to listen to researchers and Neuroblastoma specialists from all over the country. We also had the chance to speak to some of the doctors with regard to Elijah's care. All have agreed that Elijah has received excellent care here at our hospital, but there are some options available that we just can't get done here. There were nearly 100 families there from all over the world. It was amazing, to say the least.
We didn't have much spare time and were in the suburbs of Chicago, so we didn't get to venture out until our last night there. We rode the train in to downtown Chicago. We hailed a cab at Union Station and went to the top of the Sears Tower. wow. What a view of such a beautiful city. Chicago was so clean and lovely. I wanted so badly to go in to the opera house, but we were running really behind. We had just enough time to eat Chicago pizza at Lou Malnati's and then catch our train back to our car. We had so much fun sharing this with Elijah. I love times like these. Depending on what the scans show in a few weeks, we have a much clearer path ahead. It's a good feeling to know your way - or at least have a better idea..
What a Trip!
4th of July Weekend
I have worked all this weekend, but we did manage to go watch fireworks on the 4th. It was really nice. Dickey Stephens Park opened the stands for free for folks to come watch the downtown display. I really never thought about it, but that's a pretty good place to watch the fireworks. The weather could not have been better. There was a nice breeze blowing and it had rained earlier in the day so the rain cooled things off a bit. The concession stands were open and they had the community band playing patriotic music down on the field. It was really a nice night. I loved being there with Elijah and Britt. I just wish I hadn't been so sleepy and ready to get in the bed! I have been in a bit of a funk lately, as I am prone to at times so the evening out with my two favorite guys was really good for me. I need more times like that!
Too early for normal folk
I had to be at work by 3:30 this morning. That's a crazy time to come to work, honestly. I found myself looking at all the houses in my neighborhood to see if there were any lights on. Lots of folks were either in the garage, or left the lights on in there. There was more traffic than I expected though. I figured they must be going to work at the terrible hour of 3:30 just like me, heading to the ER to hang out with folks like me, or they were drunk. I think, based on the huge crowd at Waffle House, they were mostly drunk. Armed with this assumption, I drove with great caution the rest of the way to to work. The house was packed when I got here, sadly. It's good to be busy, but bad that so many kiddos are feeling bad enough to be in the ER at 4am on the 4th of July. I am just glad I am working early today instead of later. I have visions of all these kids with burns because their redneck parents taught them that it's okay to play with firecrackers. Yeah, I know.. I shouldn't judge.
Morbid Thoughts
So when I die, I want to be cremated. I don't want to be buried. Well, I guess if whoever is in charge of all the stuff wants to bury my ashes, that would be okay with me.. but I don't want my body buried unless it's been cremated. Don't ask me why - cause I really don't know. If any of my organs are of any value, give them to someone else. I sure as heck don't need them anymore. I also don't want a traditional funeral. i don't like going to funerals at all and only go most of the time because I feel obligated. Truthfully, funerals make me miserable. So.. no funeral for me. What we did for my mom when she passed would be perfect for me - only I would like for it to be potluck instead of me and my sister cooking all the food - primarily cause I will be otherwise occupied and unable to cook - and my sister tends to improvise in the kitchen too much.. ha! So.. potluck it is. Potluck, Beer, Wine, and shots. Everyone would have to bring one of my favorite dishes. John would bring potato salad, someone else would have to make strawberry shortcake, I don't really know what else.. I want Dave Matthews and James Taylor playing as background music unless I have developed a new taste in music by then and have replaced my two favorites, which I doubt.. I would like to have pictures about of me with people I love... I would like a few people to toast with a favorite memory of me if they have any, and that's it. I don't want a preacher who most likely doesn't know me standing in front of a group of people in a church who would much rather be someplace else preaching to everyone about how they need to give their life to God because eventually they are all going to die like me and hopefully they will get to go to Heaven and be where I am. I just detest funerals. As far as my ashes go.. I really don't know what I would want done with them... unless someone could sneak a bit in to Disneyland. That would be a nice resting place for me, I think. :)
Stuff and Nonsense
Hannah got her braces off today. Her teeth look amazing! I am really pleased with them. Elijah will for sure need braces as well. His teeth that are coming in are terribly crooked. I had braces. They suck. I know she must be glad to have them off finally. It seems like she has had them on forever.
The big kids are going back to Conway today. It will seem really quiet around here for a few days and i am sure Elijah will get lonely. I need to come up with something to do with him tomorrow that doesn't cost an arm and a leg. He wants to go to the pool, but his feet are pretty tender so we need to avoid that for a day or so. Maybe we will go to the library.