I think I've gotten the hang of it! I feel so comfortable and good here. Most everything works out in our benefit. I finally know my way around. The food is BEYOND amazing, the doctors are too. (I've met 1 or 2 dull ones) But everyone here is so happy. All in sad situations, but it's hard to look around and feel sorry for myself, when there's babies with scars, kids without legs, and a limited supply of hair. Most of them with bigger smiles than me. My sleeping schedule is a little off, I get temper tantrums from 3-4 AM each day, followed by hunger pains.
So I'm just going to break it out fast, like ripping off a band aid, because it's hard to tell each individual person separately.
This I found out yesterday is a very rare type of cancer. Only around 200 kids are diagnosed with it each year in the US. There's been a few patients older than me (very few). But it's very life threatening (not very many survive) and there's really bad statistics. Fortunately, I believe I am my own statistic. I know God has a plan for me, and whatever that it is, is best. But I am going to keep living my life, after all, I have a pretty big bucket list!
Now for the happier news, we got here Sunday, and took a shuttle from the airport, to the Grizzly House. After registering and checking in, I got so tired and hungry, so Diane and I ordered pizza...
and fell asleep. Naturally, I woke up around 3:30 AM the next day, probably threw a fit about something ridiculous I don't remember, then went to the hospital! I had an IV today, for my MRI, normally I'm petrified of needles, but this one wasn't bad!
After leaving it in from 7:30 AM to 5:00 PM, we went back to the room and fell asleep.
Followed by a day full of more doctors appointments, we had really good food (as always)
And today we cut down my steroid! Not very much, but I'm being tapered off of it, which will be good, especially with this crazy appetite of mine!
Today I woke up at 4, with some anger! Fortunately, I didn't act on it! (food usually calms my nerves) My real day started at 8:30, with a CT scan, getting my mask fitted for radiation, followed by an MRI.
We then had lunch, and then more doctors appointments. I then had speech (everything looked good!) they are just worried because I've lost my gag reflex's, and same with the sensitivity in my eyes. But these are all things, they've told me, radiation will improve.
I was supposed to start school yesterday, but somehow it keeps mysteriously being taken off of my schedule. I'm going to have to look into this.
Ironically, my most depressing moment today was with the therapist, whose there to make me feel good? I fit the "Make A Wish" profile, which I once thought would be awesome, but is starting to seem more of a final wish, at least in the way she explained it to me.
Today, I was accepted into a study, which has only positive aspects, besides the fasting and the IV from 7 AM-11 AM tomorrow morning. It's really cool, they put a protein in my body that tracks my bad cells, takes pictures, and can hopefully provide them with more information. Granted, it is a phase one study, but if it could help me, and more to come after me, no harm done.
And I got my legacy beads, so everything I do, I remember by a bead I've been given, there's already a lot.
At 5, I'm getting together with other teenagers in the area (religiously) so we'll see how that goes! I'm nervous because I'm so used to my friends and family, but maybe it's time to branch out!
Last but not least, thank you guys so much for the support, I want you to know I read each comment, (so even though I'm not the best at responding, know I care and appreciate everything so much!)
I couldn't get through this, without supporters like you guys.
Love You All So Much!