3rd round down

Joe finished his third round of chemo, and surprisingly hasn't gone nutrapenic, which is nice for all of us! He's been achy, and his back is especially pained, but that's probably because his kidneys are starting to feel the pressure. You see, chemo is super duper hard on the kidneys, and people who have Burkett's have to have such aggressive chemo that it's a given that they'll have to go on kidney dialyses, and even get a kidney transplant usually. Joe's oncologist was actually surprised that his kidney's haven't shown signs of wear before this. He was actually genuinely surprised that they didn't trash his kidneys in the FIRST round! So, they're just giving him a drug that flushes the toxins out of the kidneys, which means it's actually not that bad yet. He's still peeing, and that's a good sign. He's supposed to tell them the instant he STOPS peeing, and I'm slightly confused as to how he'll know. Like, how many hours do you have to NOT pee before you realize that you're NOT peeing? 1? 4? 12? But I'm sure the nurses will be asking him, so they probably know what to look for. Other than that, it's the same old story. He's doing well. He's ready to go home, big time, but he's keeping his spirits up. I think his face is getting a little better, but it's hard to tell. All in all, things are right on track.

*UPDATE*
The nephrologist (that's a kidney doctor) came and said that Joe's kidney's were just getting clogged up from something in one of his drips, so they've taken him off of that and put him on something else, and the whole thing is clearing right up! Go team Joe's kidneys!

3rd round woes

Well, Margie is busy so I am writing for her. This is Pat, Joe's mom. Joe has one more chemo drug to go in this 3rd but it is the worst. He has been very tired and sleeps a lot. They are giving him so many meds that cause drowsiness, that is not surprising. He says he is kind of lonely so don't hesitate to go see him if you have the time. They put him back on IVIG, the one for his neurological problems so we will see how that works. His eyes seem to be doing a little better and he is walking more so that is the good news. The bad news is they won't let him go home and he really wants to. He tolerated the lumbar puncture last Friday pretty well but now has bad headaches. Today it was migraine and they had to give him a pill for that and it helped. He still isn't neutropenic as of today so get your visit in before it's too late.

chemo again

Joe started his most recent round of chemo on Monday, and it seems to be going pretty well. He's tired in general, but so far he's not puking or nutrapenic. He was having some problems with falling down, but then we realized that it was blood pressure problems and he started standing up more slowly and it all cleared up. Pretty much everything else is the same, but keep checking back!

Ah, irony

So Joe's counts are spectacular! He's able to get up and move around, and he's feeling pretty durn good. The irony is that the doctor said that if it weren't for the neurological problems (the AIDP specifically) Joe could go home today! So he's aloud to wander the hospital and even the grounds, but he can't leave. They don't know yet when the next round of chemo is going to be so now is a fantastic time to go for a visit! Go now! Run, don't walk!

New week, new pic line

This week, Joe's numbers have been extremely low as a result of the chemo. They were so low as a matter of fact, that he had 5 transfusions on Thursday, 3 on Friday, and 3 on Saturday. But he's finally not nutrapenic anymore! It's all part of cancer apparently. They had to take out his pic line because it wasn't working anymore and they found out that the reason it's not working is because he has a blood clot in his arm. I have no idea what they're doing about the clot. He should be getting a new pic line as we speak on the other side.

He had a very bad weekend. He's been throwing up all the time and sore all over. He got a migraine last night and, unfortunately, he vomited immediately after taking his migraine pills. The doctor said he might be sore from a certain medication and said they'd skip it today and see if it helps. In spite of everything, he's doing a good job of keeping his spirits up.

doing better

Sorry I haven't updated this week, I've been having serious allergies. Joe's doing a lot better with the paralysis, and he's getting better everyday. He was supposed to have another chemo shot in the spine yesterday but his platelet count was down to 33 so they rescheduled for Friday. He's not nutrapenic anymore, so that's good. Not much else to report.

2nd round almost done

Joe's just about finished with his second round of chemo. He's doing pretty durn well this time. He's been doing chemo since Monday, and he just started throwing up again last night. Other than that, he really doesn't seem to be having other chemo symptoms.

The medication for the AIDP is already working! He's able to stand on his own again enough to switch between his bed and chair without having to be lifted (which is really good considering he was getting to the point that he couldn't even sit up!). They're supposed to be getting him a walker so that he can go to the restroom on his own, but I think they forgot cause it hasn't shown up yet. He still has problems with his "T-Rex" arms as he calls them, and he can only feed himself dry foods that can be held easily in one hand, but it's still better than it was. Yesterday I kept gushing about how much better he was already because I just couldn't get over it!

He has to do respiratory and physical therapy exercises now, so that's more people trooping in and waking him up in the morning. (And waking me up this morning! Grrr.) But it's good that they take care of him. AIDP can cause serious problems if it gets into the lungs or the heart, so I guess it's better for them to stay on top of things.

He's nutrapenic again, so if you're sick please send your love rather than bringing it to him. :) His platelet count is staying totally awesome! Keep those prayers coming, and have a good weekend!