answers!

Although the MRI didn't show anything, Joe was visited by a neurologist today who has diagnosed his paralysis problems and it's good news! The paralysis and weakness in his body is caused by something called Acute Inflammatory Demyelinating Polyneuropathy (try saying that 10 times fast!) or AIDP. It was probably brought on by his staff infection, and it is fully treatable. He will mostly likely be treated and left with few to no lasting effects. The neurologist just needed to confer with the oncologist to see if the treatment could be administered with chemo. But, according to my research, many patients begin a slow recovery (at least 10 weeks) on their own after peak paralysis about 4 weeks after onset. I would much rather him receive treatment, but it's nice to know that it's not an emergency.

The facial paralysis is caused by Bell Palsy, which is nerve damage. It is kind of like a really mild stroke, and it repairs itself and is not permanent. It usually occurs in people with compromised immune systems. It could take anywhere between 2 weeks and 18 months to fully repair it's self, but how awesome is it that neither one of these problems is a huge deal?!? I'm happier today than I've been in a while! Joe does have some neuropathy in his fingers that MAY be permanent, but that is much more acceptable than being a quadriplegic, as far as I'm concerned.

The oncologist has ordered physical therapy, and Joe may or may not be starting radiation soon, since it's yet to be decided. Joe has not been throwing up at all lately and while he's frustrated that he can't do anything for himself now, he seems to be keeping his spirits up.

MRI day

You might remember that the left side of Joe's face has lost mobility. Well, over the weekend this spread at an alarming rate. He lost a lot of the use of his arms (he can't raise them up at all), and his hands, he keeps dropping things, and today he started falling down almost every time he got up. The oncologist is extremely distressed and ordered a full set of MRI's for Joe. Since the hospital doesn't have an MRI large enough to accommodate Joe's large and manly shoulders, they had to transport him via ambulance to a facility in Flower Mound. He was there for at least 4 hours get all kinds of MRI's done, before being taken back to his trusty room. The most likely problem is that cancer cells have bunched around the nerves near the brain stem. They tend to start at the top and drift down, which is why it started with his face and ended with his legs. If that is the case, they will probably be adding radiation to his treatment regimen.

On the plus side, Joe slept better last night than he has in weeks. The oncologists claims that he was up all night worrying, and he's not the only one that's missing sleep, so I guess it's good that Joe's sleeping! I spent the night at the hospital last night because Joe really can't take care of himself. If any of his REALLY close friends would like to volunteer to take a night (or day for that matter), please let us know.

Next round

Joe's numbers have been spectacular, but that should change soon because he starts his next round of chemo today. Hopefully he'll weather it well.

Our thanks to anyone who was able to make it out to Cool Beans of Saturday. Karaoke night raised a whopping $951!!!! How awesome is that?!? Looks like the radiology department might be getting a check this week, so they thank you too. :) Don't forget to check out Pampered Chef to see if you want any awesome kitchen stuff.

Keep those good prayers and thoughts coming. Joe is still got a long road ahead of him, and we all appreciate the love and support.

Party time!

Dude! I totally forgot to tell you about another fundraiser! If you like to party, tonight at Cool Beans starting at 10:30, there will be a Karaoke fundraiser with $1 jello shots! All proceeds go to Joe. You heard me right ONE DOLLAR JELLO SHOTS! Cool Beans, on the roof, 10:30, Saturday February 23rd. You know you're gonna be getting drunk tonight anyway, why not have the money go to Joe instead of some skeezy bar owner? If you get confused or have questions find Bobbie, she'll be spinning for this event. GO THERE, the gods command it!

What a diffrence a day makes!

It's seems that I was right, as usual! :) The doctor thought that trying migraine pills was a good idea, so he did and it worked like a charm! Joe is a new man! He still throws up a little bit, but you expect that sort of behavior from a cancer patient. His head still hurts, but it's very slight and bearable and he's able to eat, sit up, watch TV, converse, and even laugh again! It warmed the cockles of my little heart to see! His counts are excellent, and as soon as the bone marrow biopsy results are in the doctor will decide what to do next. This might be a good time to visit Joe if you want to, before his next round of chemo starts and he gets all nutrapenic again. Be sure and call first, just in case. And don't surprise him with food; he hardly has any appetite, so it's smarter to check with him and get him just what he thinks he can eat. Chemo changes your taste buds, and Joe doesn't like things he used to, like chocolate tastes horrible to him now. What did he do in a past life that he's being punished for?!?

For anyone who's interested in ordering from Pampered Chef, here's how to go about it:
1. Go to www.pamperedchef.biz/fonda
2. Click on Order Products (the trifle bowl)
3. Enter Joe Quinton as the host
They're then ready to shop.

Remember that 30% of what you spend goes straight to Joe, and you get some awesome kitchenware! Send this info to anyone you know who might want to order something, but remember all orders need to be placed by March 28th. Thanks for your support!

not well

I don't know if I was misinformed or if I misunderstood, but Joe told me tonight that the cancer is in his brainstem. He didn't ask he doctor how bad that is, and I've been looking online and I can't seem to find anything about that. Joe's condition seems to be getting worse all the time. He's thrown up at least 10 times today, and as of 7 this evening had only eaten a jello cup. His head hurts so much that he can't tolerate any light at all and can't even really carry on a conversation. For the time I was there he was clearly in massive amounts of pain. The doctor put him on a deladum drip which means he will receive constant painkillers, but I told him that it seems like a migraine and he should ask the doctor if migraine drugs might do more for him. He asked me to pray for him A LOT, and I'm sure your prayers would be appreciated as well. The bone marrow biopsy is tomorrow morning, and I hope that they will start the next round of chemo after that because if that's what it takes to get rid of that headache then they should get on the ball! As his white blood cell count is 7, and his platelet count is 550 *!* I personally see no reason for them to wait. I know that they wanted Joe to go home between, but he obviously can't go anywhere in his current condition. It seems quite unfair really, that he waited all this time for his counts to get higher and now he can't enjoy it. On the up side, visitors no longer have to wear masks! Send all those good vibes Joe's way, he needs them now more than ever!

not much change

So, Joe had his spinal tap today and it didn't show any cancer cells or white blood cells in his spinal fluid, which is good. They went ahead a shoved some chemo in there while they were at it. Basically, now they're like, "Well, we don't know. Maybe it'll get better after the next round of chemo," which I for one am not very satisfied with. It could be that he has a tumor pressing a nerve between his brain and his face, or it could be something else. Nobody knows, which sucks.

Tomorrow, the oncologist is doing the bone marrow biopsy and then will decide if he's going whole hog with the next round of chemo or not. Today Joe's numbers are fabulouso, with his white blood cells at 2.7 (which means he's not nutrapenic anymore, but they've asked everyone to continue wearing masks until tomorrow, just in case) and platelets at 280! All time high!

Joe's facial hair has started falling out, so I guess the hair loss is starting at the top and traveling down. I tried pulling out some of his arm hairs, but they seemed to want to stay put. Joe wanted them to, also. Some people have no sense of humor!

The doctor gave him a prescription for his vomiting, which he takes as needed, so I'm sure that will be a great help to him. The hospital has started proceedings to get Joe on SSI/disability, which is too great for words!

scary

Joe seems to have taken a rather serious turn. The left side of his face is numb, which means that the left side of his tongue, mouth and left eyelids aren't working. He looks kind of like a stroke victim. He had a cat scan and an MRI (since he lost 45 lbs, he fits now!), and tomorrow he'll be having a spinal tap. It seems like the most likely candidates, in this order, are: a tumor in his brain, fluid putting pressure on his brain, or a hematoma on his brain. I didn't have the courage to ask what the long term effects of this could be. I figured let's find out what it is before we worry about that. Seems this is also most likely what's been causing his vomiting, which has gotten exponentially worse in the last couple of days. Conversly, his numbers seems to be going up. How ironic is that?

He really doesn't want visitors at the moment, so be sure and call to see if it's ok rather than just popping in. I'll update the second I have more information.

low

Joe's numbers are still low (white blood cells around 1.1 and platelets at 21), and his oncologist is concerned. He thought that they would be going back up by now, so he's thinking about doing another bone marrow biopsy to see if the chemo he's gotten so far is doing anything. If it is working, they might just have to go ahead and do the next round of chemo without waiting for his numbers to get higher. If it's not working, they might have to pump up the volume as it were. I think if they're gonna do more chemo either way, then why do the biopsy, but I don't have a fancy degree, so what do I know?

The joys of vomit

Joe's been put on a major antibiotic that's causing him to puke left and right. No fun. His shoulder was getting better, but now it's started having a severe pain at the corner of his shoulder. It might be liquid on the joint, but I haven't heard the latest. He seems to only be losing the hair on his head and not on his face or bady. Weird. Or maybe not. Is that normal? He's pretty good, but he's lonely because just about every person on the face of the planet is sick and can't visit him. So, if you are one of the lucky few who have managed to escape disease, PLEASE drop in!

All's well

Joe's still in the hospital, and is still nutrapenic. Yesterday his platelets were down to 45 and his white blood count was pretty low too. Today they are slightly higher, so that's good. His tumours (turns out he has 2!) have gotten smaller! YAY! He also has lost between 30 and 40 pounds since he went into the hospital (1 month ago! Can you believe it?). Man, let me tell ya, if you want to lose weight, cancer's the fastest method ever, although Joe says he would have preferred a different method. His stubble is falling out and getting all over the pillow, so he's considering getting the nurse to shave his head. He seems to be in pretty good spirits for the most part, although he's really missing human contact since we're not allowed to touch him. :( But, he does gets to watch the Discovery channel all day, and that really bouys his spirits! His port infection is looking tons better, and that's REALLY good!

The Deladum they had him on for pain stopped working, so they switched him to Morphine, but that was making him throw up. So now they've put him on massive quantities of Deladum, and that seems to work like a charm. The doctor said that the problem they're facing is Joe's size. Since Burkitt's is usually a children's disease, they have no frame of reference for time frames or medication amounts. Seems you can't just say, oh well, a 50 pound kid gets this much, so let's see here, multiply by. . .carry the one. . . They're pretty much estimating everything and seeing what works. He was supposed to start his next round of chemo on the 13th, but the doctor says no way until his counts are up enough. So he WILL come home between, the question is just how long will that be? No body knows but God, and he ain't spilling the beans.

The Pampered Chef party is being moved to March 15th at 11am. Once again, if you want to be invited email me! I should be getting the info tomorrow for anyone who can't come to the party but still wants to be involved. Thanks for all the great interest already expressed! We are all genuinely touched and grateful for all the wonderful support and love coming our way. You people are THE BEST!!

The spell check on this blog no longer seems to work, so I apoligize if anything is horribly mangled. I used to be able to spell, but aging and spell check ruined it all.

I was wrong!

Well, clearly Joe did not get out of the hospital last week. He's still nutrapenic (which means his white blood cell count is below 2 and everyone has to wear masks) and he's not even aloud to leave his room, let alone the hospital. But he seems to be in better spirits and he's in the mood to socialize, so if you're not sick come on down! It's hard to believe that he's in a good mood since his hair has officially started falling out. But he entertains himself by pulling chunks of it out at a time, which is quite disturbing. Next time you see him, I'll have given him a buzz cut, so brace yourself for no well gelled metrosexual like you're used to!

They've had to put him on bags of stuff that look like milk that's full of good stuff because they don't think he's eating enough. Maybe you can think of something to bring that would tempt him! I'm gonna take him some ramen, but I feel sure you can do better. :) Remember, no uncooked foods like fruit, and his mouth hurts so rough foods won't go well.

I'm having a Pampered Chef fund raiser party on March 8th. All profits from everything sold go to Joe, as well as the sales lady's commission (isn't that nice of her!). Anyone who is interested is welcome to send the information to anyone in the US, and you don't have to go to the party to be involved. If you'd like to come to the actual party, email me your address at margie_vi@yahoo.com and I will mail you an invite, or if you'd like information for ordering or for sending information to all your friends and relatives (especially your rich aunt who loves to cook) email me and as soon as I get the info I'll send it straight to you. We've just received the first medical bills, and boy howdy! So don't order anything at anyone else's party!! :) Catch ya soon!