baby steps

Joe's white blood count is up to 1. something or other, and his platelet count is down very slighty but nuthing to worry about. All of the crazy poisonous chemo is finally gone from his system and they were able to take him off of the rescue drugs today. They've hung a cabinet with masks and gloves and whatnot outside his door so that people are sure to not miss it. He's clearly feeling better, but not by much. If I had to hazard a guess, I'd say Joe's not getting out of the hospital this week! I visited with him for a little while today and we watched some delicious looking dessert being made on cable. It piqued both of our interest, so he must not be in too bad of shape!

Not better

Joe's white blood cell count is back down to .5 and feeling pretty crappy. To the best of my knowledge, for two days he's been turning away all visitors, including family. Of course, maybe he's just turning away family cause he's sick of us. :) Mom has gone into the hospital for surgery herself, so my spy on the inside isn't so inside anymore! She is told by the nurse that Joe's mostly just wallowing, but the nurse could just be reading into the situation, I dunno.

Better

Joe seems to be doing better this week. He's just finishing up his first round of chemo and his platelet count is 130! His white blood cell count is hovering around 2 more or less, and his hemoglobin is down, so he's still getting transfusions. His blood poisoning seems to be getting better, and the doctor is quite amazed at Joe's excellent progress. If he continues in this direction, he might be able to come home at the end of the week! He'll have to go back on Feb 13th for his next round of chemo, but at least he might get SOME time at home! He's very excited, so let's keep our fingers crossed!

Bad blood

Joe's somehow gotten blood poisoning, so they've had to stop chemo and put him on a huge array of all the most baddest antibiotics known to man. His port is no good as a result (which is actually why they've stopped chemo, since they can't do chemo through an IV.), so they've taken him to surgery today to put in a new one. His shoulder on the side of the port is covered with bright red streaks and that shoulder hurts really bad all through from front to back. (I know because I tried to help him up yesterday by means of his shoulder much to his dismay. I also found out he gets annoyed when you stand on his IV. Go figure!) The good news in all of this is that his platelet count is up to 65! Woohoo!

Now that they've put in a new pic line, they're going to be starting a really nasty chemo that's going to take a full 24 hours to administer, and right after that they give him something to counteract the nasty effects of the chemo for the next 24 hours. Sounds like a good time! It seems to me that when the nurses basically get into biohazard gear to even handle the bag that the chemo is in that you should wonder if you really want it going into your body, but I guess it's better than the alternative!

It's pretty hard to get Joe to smile these days, but keep on trying! He got some cards from the kids at church, and one summed up all of our sentiments. It said, "May your blood win!" That's kind of our battle cry at the hospital now. Along with the thought on another card, that said simply, "Pohah." We have no idea what the heck that means, but we yell it with pride!

Hard week

Joe's having a pretty hard week, since he feels especially bad lately. He's been getting chemo almost every day for over a week, and today he got chemo and then received his first chemo shot in the spine, which he says is even worse than a spinal tap. His fever has gone up to 101, and for most of the day he was sleeping the sleep of the pained. He hasn't been up to having many visitors lately, so if you go he asks that you knock on the door and wait for a family member to come tell you if he's up to seeing you. He has been enjoying hearing the comments that you all having been leaving, so keeping on leaving them! I haven't been able to see him myself since I have a cold sore and can't go up right now, but he's still in the loving care of other family members, have no fear! All his counts are down and he's received more transfusions today. Keep those prayers flowing guys, I have a feeling he's going to need all the help he can get in the months ahead.

Immune System

Joe's immune system has crashed, as expected. His white blood cell count, which is supposed to be 11, is .7 this morning. What that means to you, dear Joe watchees, is that his visitors need to be limited (whatever that means. I'm not sure if it means less people should come or less at a time or what.) But if you are sick at all, live with anyone that's sick, or have been exposed to sickness you should stay at home, but feel free to leave comments on here so Joe will know that you still love him! Probably school children and small kids need not apply since they are a regular breeding ground of germs. No offense, kiddos! If you do come, you must wash your hands upon entering the room and put on a mask that is in a case right next to the sink on the wall. Joe cannot have uncooked foods, including fresh fruits, and also cannot receive potted OR cut plants or flowers. As the fund raiser, I would encourage you to put the amount you WOULD have spent on flowers into a donation instead! :)

This isn't a bad sign, this is a part of chemo. It just means everyone has to be very careful. If he catches ANYTHING, it could spell the end for our hero since he can't even fight off even the smallest cold! We all appreciate your cooperation.

headaches

Joe's kinda bummed because every since his spinal tap on Thursday, he's having the most splitting headaches. If he even sits up at all, he gets such a headache he gets sick to his stomach. Hard core pain killers only take the edge off, so he can't really sit up or go for rolls (like a walk, but in a wheelchair) anymore. Let's hope this problem doesn't last too much longer!

He seems to be adjusting to chemo pretty well, even though it is extremely aggressive, so that's good so far! Also, the nurse said today that his blood counts are up, although she couldn't remember what they are. Yay!

The story

So, Joe slept on an uncomfortable couch just before Christmas and came home with back pain. The pain was continuous for the next two weeks and he was taking alot of pain killers and muscle relaxants to try to deal with it. The pain was so severe he couldn't work, so finally he decided to go to the doctor to get it adjusted. That helped for about half a day, and then it got really bad again. He made another appointment, but then when he woke up on the 9th, he went to the bathroom and peed blood.

He called the doctor, who told him to come right away. When he got there they did blood tests and found out that his platelets (which are supposed to be between 140 and 300, I'm guessing that's millions, but I'm not sure) were at 2. The doctor sent him to the ER, where they did more tests and found his platelets to be at 0. Just so you understand what that means, platelets are the part of your blood that causes clotting. When it gets below 20, your body loses the ability to maintain coherency. He had a rash that we just thought was heat rash or an allergic reaction or something, but it was the blood soaking through his skin. The blood in the urine was also because of this. They also did a cat scan and found a mass in his abdomen near his appendix. He was then admitted to the hospital.

Long story short, after numerous tests, scans, and even a bone marrow biopsy (I don't recommend getting one, it's no fun.) it turned out he has stage 4 large cell lymphoma. They keep having to give him transfusions because his body is killing all the blood that enters it, and today his platelets are up to 50, which is an all time high! He has a huge tumor in his abdomen, but they can't do anything about that until his blood is stablized. They did a spinal tap to see if the cancer had gotten into his brain, and it hasn't, thank God. They thought he had phumonia so they did a chest x-ray, but he doesn't. Maybe if he did, he would quit smoking, which I think he should do anyway!

This just in: they got the results of the bone marrow biopsy back. He has Burkitt's Lymphoma. It is extremely rare in the US, especially in adults. (Only 300 cases per year in the US, most of which are in children. It's rampant in Africa. But what ISN'T rampant in Africa, eh?) It is an extremely rapidly spreading and aggresive type, and treatment has to be equally aggressive, so he'll be getting chemo more often, and more of it. They'll actually be injecting treatments right into his spine. That's gotta suck! But, the doctor says that his prognosis is actually UP frm 60% chance to 90%, so good on him! It's usually caused by the translocation of a particular gene, and if you want to know which one, you'll just have to google it yourself.

We have no idea how much longer he'll be in the hospital, but the treatments for Burkitt's usually last about 4 months. I seriously doubt they'll keep him the whole time, probably they'll keep him until they can get him blood counts to stay up. I'll let you know more just as soon as I know. See ya soon!