Can't be long, it's pretty late, and I've got a physical therapy appt. tomorrow. Got some good books the other day. AGain, I reccommend Fireside. I love their website name: goodbooksbadcoffee.com. Funny. Well, labwork is still NORMAL. Not feeling very chatty, I'm getting an infusion of prednisone. It makes me grumpy and hungry. I have to get two a week. We went to Hacienda's tonight for dinner. Yummmmm. Well, bye.

Da da da da! I now join my docs in giving up on me! My labs are all NORMAL. My amylase and lipase are both in the 100s, and my ferritin (a JRA and MAS marker) is back to normal too! My white blood cells are up, and so are my platelets! Tra la, tra la! But oops, gotta go now, we have to pick up my sister and take her to the doctor (for a change!). Then we will go to the book store, and maybe get some new used books with my points (If you've never been, i suggest going to Fireside books in Palmer, it is a wonderful bookstore. You can donate used books in good condition, and get points to put toward getting other ones!) Oh,and how many people did I surprise when I showed up at confirmation last night? Well, SURPRISE! Until later, my doves!

Ooooooo, hi Andy, hi Laura! I have missed you guys soooooo much! Church feels so different without you guys. And I know I'm not the only one missing you, either! Thank you so much for finding the time in your busy move to post! It makes me feel all warm and fuzzy inside! Well, I'm happy to say I feel very good. It's a wonder what those IVIGs do for me. I can go up the stairs with minimal pain (it never goes away completely. I know some of you readers understand me!), and my numbers are continuing to improve. I have been out of the prison for 9 whole days, a record since Seattle. Well, I am gonna sign off here. I'll chat later, though!

Sorry, I don't know where the time has flown. I was going to post Tuesday evening, but never got a chance. Then yesterday was such a day of bliss, we didn't have to get up early to come into town or anything. So naturally I wasn't able to sleep and was up at 6. Whatever, it just guaranteed a better sleep last night. All the way through to this morning, where I didn't want to get up at all. But duty calls, so here I am on the hospital's computer waiting on my IVIG (review past posts to find out what this is, or go to http://www.wikipedia.org/wiki/Intravenous_immunoglobulin ). All my other labs came back fine, besides my white cell and platelets being a little low. My rheum. doctor wanted to do cultures because of this, and so therefore I had to get stuck four times for 1 cc of blood! That sure made my day, I tell you what. Well, now I have to go because they are about to give me Benadryl, so nighty-night!

Well, it's official. All of my doctors have given up on me! My numbers went back down today! The amylase is in the 400s, so it's gone down like 400 points. the other markers are still pending, but I'll post them when we know. Not much else to say, except it's my 4th day out of the hospital, in counting! Yesterday, we saw one of my nurses in Starbucks! We all agreed it was a much better place to stage a run-in than the PICU. Then we saw the PICU doctor, and she said about the same thing., I think her exact words were "Were you surprised to see her outside the hospital? Yes, it seems that people think us and teachers live where we work!" (I don't know about anyone else, but I didn't necessarily think they lived at school, but I didn't think they had lives outside of school! You know, go home, grade papers, eat dinner, read a book, go to bed, get up, go to school, come home, grade papers, etc., etc.) And I am now on clears......again. The reason they have "given up on me" is because my numbers are doing their usual wacky business, so can you blame them? No symptoms, skyrocket numbers? They also dropped this little bomb on us this afternoon: we are going to have to go down to Seattle sooner than we thought. They can't do a certain procedure up here, and for some odd reason, they seem to think this one will have all the answers to solve the riddle Rick and Jeneice Cornejo named Kayla. When, you ask? I ask the same thing! One thing is for sure, they don't want to wait until we go down in November, noooo, they need it done ASAP! We may have to go down there, but we are coming back before November! I should be posting tomorrow, I have an appt. with my Rheum. doc. Until then, my loving followers!

Hello to all and to all a hello! Not much new in our neck of the woods, but I figure I need to keep up anyway. I can bore you to death with what I've done since getting out. Absolutely nothing! We've had to go into town both Friday and today for blood draws, which has proved unpleasant. Not because of line issues or anything, but my numbers are totally whacked out. My pancreatic markers, my amylase and lipase, are out the roof high. They are supposed to be in the hundred range, and one is 1200 and the other is in the 800s. not good, at ALL. And yesterday we had a bit of a scare. My stomach started cramping again, so we were kind of freaked I'd have to go back in. We called the doc and she said take some morphine, wait a while, and call her back. After I took my second morphine, I started feeling better, so it was a close call, but we managed to go two days without readmission. A down flip is that since my numbers are soooo high, I am back on a strict Pedialite diet until they come down, and we won't check them again until Monday! Blech, and I thought non fat was bad! Well, enough complaining for one night, I'm waiting to talk to a woman about a goat (get, it? Instead of a man about a horse? ha ha ha.......) See you all in church tomorrow!

Okay, now I REALLY feel loved. I have such an awesome circle of people in my life, and you know what they say about circles (they're the best shape because they have no end!) Well, I don't want to get any one's hope up, but it looks like I will be getting out of here today. If not, then first thing tomorrow. I have had three meals so far, with nothing gone wrong. I think what is helping is these enzymes they are giving me to take, so that my pancreas doesn't have to create them. I am not on a low residue diet anymore, but I am on a non fat diet. When I think about it, it's a good way to lose weight! There is so much more food available to me on this diet, believe it or not. Almost everything made now can come in low or non fat, even chocolate milk! There's something I remembered from a conversation about the transplant. They actually wanted to start the whole process on the 18th of October, but we said no, because I want to have a little time home before I go down for another half a year (well, 4 months, but that's if everything goes perfectly. I'm making it a little wider range, maybe 4-6 months)! One more thing before I go: there is a woman coming down to my room today to talk to me about my "unpleasant experience" in the OR when they redid my line. Three squealing surgeons, here I come!!!

Okay, big big big news. The whole transplant thing? It's already set up! They've got housing arrangements, procedure arrangements, and blah blah blah. The donor is still willing, and is a young strapping dude who is raring to help me. We go down on November 7th, November 27th we start the actual treatment prep (two weeks of it), and after that the actual procedure is on December 7th. We have to stay down there for at least 100 days, maybe more, depending on how well it all goes (which it is going to go smooth as glass!). The whole thing isn't crystal clear, and I will update as needed. Another comforting thought is that whatever Medicaid won't pay for, the hospital will pick up the rest. We don't even have to get rid of any of the animals! It seems like this thing is already thought through by the Big Guy. I'm anxious, but not in a bad way. It's just all happening so fast, it's a whirlwind of thoughts! Oh, and they are letting me have chicken noodle soup and crackers!!! The day is good!!!

Howdy ho!! Okay, so maybe life doesn't suck as much as I thought it did. I have my family with me, and even though I'm in the hospital, at least I still feel good. I've got oodles of people who care about me, and here with me a mom, a dad and sister, a grandma and a grandpa, and another Father that cares about me. I'm loved, so I'll live. It was tough, but then I started thinking, and I thought why spoil the whole day. The hospital threw me a party, and gave me flowers and a 20 $ gift certificate to Best Buy, and mom and dad and Nonie and Ralph (grandma and grandpa) threw me a little one, presents and all. Then today, my sister came in and we are having a slumber party. Both nights we had treats, and there haven't been any complaints from my body. I guess all I'm saying is maybe I should count my blessings, while I have them. Really quick, I'll give you a little inventory of my gift list: a book, a horse magazine, four pairs of earrings, two pairs of socks, a game for my game boy, a really nice pen set, two mechanical pencils, a notebook, a deck of cards, two more pens, a wind chime, five tiaras (one that lights up), a wand, eleven singing nurses, five grunting doctors, three squealing surgeons, jelly belly gumballs, a needlepoint kit, a blow up guitar, and a partridge in a pear tree!!!! And we can't forget the no Pudge Fudge brownies! With frozen fat free cool whip. All in all, my day wasn't really as bad as I made it out to be. And before I go, I want to emphasize how grateful I am to have such wonderful people in my life. Ruth, you always know what to say. Corrine, you find light in the darkest places, and HAPPY BIRTHDAY MAGGIE!!!! Katrina, you're such an awesome friend, and what would I do without my family, (Aunt Kat and Kristy!!!) Oh, and I don't remember if I mentioned, but my line is doing much better, and there is a complaint being set into motion (I did say there were three squealing surgeons, did I not? I just never said why they were squealing, MUAHAHAHAHAHAHAHA!!!!) Okay, maybe I've had one too many brownies, I'm starting to sound like a sugar maniac. I am going to leave you now with the knowledge that no matter what, I am always blessed with the best of life!!!

I hate my life sometimes. Can anyone guess why? Yep, I am in the freaking hospital on my birthday. Of course. The one day of the year I don't want to be in here (not that I want to spend ANY in here, but I mean, come ON!!! my BIRTHDAY?!?!) How much crueler can the world be (notice I haven't brought Him into my angry conversation)? Well, three major things, then I will post when we know more. And just to clarify, I haven't been neglecting you, there just hasn't been anything to post. Now there is.

Thing # 1: We came in for a blood draw, hoping for the best, but expecting the worst, and setting somewhere in between. First the little rat bugger wouldn't draw......as usual. Then they did a peripheral stick, there wasn't even a flash. Then they TPAed the line, and this once (we've done it five other times) it helped. So they drew, and then my numbers came back waaaay bad.

Thing # 2: They redid my line. One would think they would read my chart and find out that both the sedation meds they had set up for me don't do a darned thing, but NNNOOOOOO!!! Can anyone guess what happened? Just like the last time they used them, they DIDN'T WORK, and so therefore (DUH!!!) they didn't work THIS TIME!!! Now, if we put 2 and 2 together, we figure out that just like when they placed the PICC line in, I felt the whole procedure! Can you say OOOUUUUCCHH??!?!?!?!?!?!

Thing # 3: This is a prime example of saving the best (if you think of it in the way I am) for last:
They apparently have found a preliminary donor for me. This means, for those of you out there who are a little slow, that they found me a donor match, and I could possibly get a transplant. It would be quite a while before any balls would roll, but it would mean some marbles would move. First I have to been as healthy as I can, meaning no more infections or whatever. Oh, and the difference between a preliminary donor and an official donor is that yes, it's a match, but that is just from the list. We don't know if they are still healthy, still willing, or even (I know this sounds odd, but it's not impossible!) if they're still alive! So, they are looking into it, and then they're going to get back to us. I am still having mixed feelings about it. There is a twenty percent chance I could die from my disease (which I was unaware of until now), but there is a twenty percent chance that this transplant could kill me. Here's why I'm still kind of stuck: there is an UP TO 50% CHANCE that I could get Graft VS. Host (GVH) disease, which is where the host (me) rejects the cell (grafts, I guess). But they do have treatments for it. If the mortality percentage is the same both ways, and there is a good chance going through with it would put me into remission (not near as good a chance, but may also cure me).

Well, now that I've gotten that all out in the open, I am going to go enjoy my birthday (you do not want to hear my tone of voice right now, trust me). HAPPY BIRTHDAY TO ME, HAPPY BIRTHDAY TO ME!!!!!!!