Thursday, June 25, 2009

Greg's Address

c/o Hope Lodge
4215 Lindell Blvd.
St. Louis, MO 63108

Parole!

Greg's parole papers came through yesterday. He was told they'd have him out by noon. So, of course, he got out at 3:30. He called me & said he was driving around St. Louis with the windows open and the stereo blaring. It felt good to be free.

He got to Hope Lodge at about 4. If you don't know the WWII origins of the word "snafu" now's a good time to look it up. That's what this was. They had no bed, no notice he was coming, and said he couldn't stay because he didn't have a "support person" with him (we've never heard of this requirement until then). Long story short: after a million phone calls, and him proving that he's capable of taking care of himself, he got admitted & all's well. Things are a little austere, but livable. I told him to make a list of things he wants me to bring him this weekend.

He will go to clinic about 3 times a week, and sees a nurse practitioner Friday, and Dr. Vij on Tuesday. Matthew and I are going up for the weekend (Eric has to work), and my sister Debbie, her two younger daughters and the new baby are going to join us. We're staying in a hotel, and Greg should be able to stay the weekend with us. I'm really going for the food, but Greg tried to eat a roast beef sandwich last night and it tasted like metal. That's normal at this point, unfortunately. It will take a while for his taste and appetite to come back. Debbie is bringing liver sausage and rye bread, so hopefully, that will tempt him.

I'll post semi-regularly from here on out, assuming everything's going well. He'll need platelet and blood support for the next few months, so that's why he's got to stay in St. Louis. Its not unheard of for him to have to be hospitalized a few times during this recovery period, too. Lets just hope & pray that's kept to a minimum.

Thanks to all for your love & support.

Greg & Ann

Wednesday, June 24, 2009

Should I Stay or Should I Go?

Well, since Saturday, Greg has been told an average of 3 times each day he's either being discharged or he's not being discharged. Pack. Unpack. Pack. Unpack. I think they're just trying to mess with him until he needs a psych consult.

Actually, the attending, Dr. Aboud (the one I REALLY dislike), keeps blowing into the room, complaining he needs beds, and telling Greg he's going to discharge him. (Greg's thought: "You needing beds is not MY problem!") So, Greg asks him, what are my lab values today? He hasn't looked at them, or he's looked at yesterday's numbers, or something like that. Then, the internist (who we really like -- she actually answers questions!) comes in a few minutes later & says theres NO WAY he's getting out -- he's still too unstable. Thank God for her.

The latest this a.m. is that his parole has come through, and he's being discharged to the "halfway house" today. (I'll believe it when I see it, but, since Aboud doesn't come in until about 2 p.m., and the internist comes in the a.m., I'm thinking this was her call, so it probably is true.) A number of people have requested the mailing address there. I'll post it as soon as I have it.

His platelets are at 14 (apparently 20 is no longer the cutoff for platelets?), and he feels pretty good. His appetite is still almost non-existent. However, he does crave salads and fresh fruit. He's also retaining a LOT of water. Remember, his stem cell donor is a European female. Coincidence? I think not.......

Anyway, if anything definite happens, you'll read it here first. In the meantime, once again I can't thank everyone enough for the prayers, good wishes and help all have given. We truly couldn't do all of this without you!

Love,

Ann & Greg

Monday, June 22, 2009

Weekend Update

OK, here's the scoop.

Greg got his first batch of HLA matched platelets on Friday afternoon/evening and his platelets dropped from 6 to 4. Not good. Then, he got another batch and they dropped to 3. Remember, these were the "special" ones they searched high and low for. Doc comes in & says "These things take time." I haven't mentioned yet how much I dislike this guy. He's kind of "old school" in that, he swoops in, pats you on the shoulder, mumbles something like, "Everything will be OK" and leaves. He gets annoyed if you ask too many questions. We kind of freaked, and Greg actually asked if this could mean the donor cells aren't grafting. His other numbers were dropping, too. Doc says he doesn't know, then, he's gone.

Needless to say, Greg was NOT discharged on Saturday, as expected. So, late Saturday, they try again. This time, everything goes well, and he jumps to 37 and stays above 20 (the magic platelet number) for 2 days or so. That's good news.

Yesterday, the attending (the one I don't like) says Greg may be able to be discharged today. Today, the internist comes in & says he's not going anywhere for a while, because he's still too unstable. A few hours later, the attending (who's driving the bus) says Greg will be discharged this afternoon. Greg is NOT comfortable with this, but if they say go, he goes.

So, when I talked to him about 2-ish, he was packing, but hadn't gotten the official word yet. I haven't heard from him since then. We don't even know if the "halfway house" has a bed, anyway. The bottom line: Greg may be in the hospital, he may not. As usual, no one knows what's going on.

As I posted earlier, I'm home and back at work. Matthew was REALLY glad to see me. Judy left Saturday and on Sunday, Eric drove the van up to St. L and I drove the car with Matthew, and we had a short visit with Greg. They boys were really glad to see him, as he was to see them. It was a nice visit, but too short (about 3 hours was all we got). At least Greg has transportation now, if he needs it. I plan to go up this weekend. Hopefully, he'll be out and able to stay with us.

That's all the news for now. I'll post later when they change their minds again.

Love,

Greg & Ann

Real Quick

I'm back at work -- Greg is doing OK after a slight scare this weekend. I'll try to post later today or tonight with details. He may be discharged today, but I'll know more later.

Thanks!

Thursday, June 18, 2009

Platelets are Still an Issue

OK, here's the scoop. They've given him a total of 3 units of platelets since I last posted, and he's got a grand total of 3 platelets. In other words, they've gone down. So, we had a minor panic attack last night, until the nurse came in and peeled us off the ceiling. Seems lots of people here have that issue, and no one's got their undies in a wad over it, so we calmed down. The plan is to find an HLA match, which the blood bank is working on now. It can take a few days or up to a week. He had nosebleeds last night again, but not as bad. They assure us they can manage those. Andy, based on what you've told me about being called to donate platelets frequently, I'm betting that you're and HLA match for someone in your area. (Just don't ask me what HLA is or any technical questions about how it works -- I have no idea). Once they get it all figured out & find a local donor, he should hold the platelets better, and should be able to get out of here. He has to be able to stay at 20 + before they'll discharge him, so he has a ways to go.

Also, Andy you asked a very good question about his white cells being the attackers. However, I have no idea what the answer is. But his ANC was through the roof last night. In 24 hours he went from 1020 to 2366 -- well over the magic number of 1500. But for the platelet issue, he would be discharged today or tomorrow. They gave him growth factor again today, but I don't know how much longer he'll get that. Greg says that number is good enough to go to a pizza buffet along with a bus full of school kids.

I'm planning on heading home today or tomorrow, as Greg is pretty stable and Matthew is not. He needs mom. So, Daniel, if all goes well, the entire office doesn't need to come in Monday. I'll handle it. Just have Kim set fire to my in box before she leaves Friday.

That's all the news for now. I'll post again when I know more.

Thanks for everything!

Love,

Us

Wednesday, June 17, 2009

A Bump in the Road, But Hopefully Not a Very Big One

Well first the good news. Yesterday's ANC was 1020. So, he's gaining those pretty well (up from 880 the previous day). They're giving him shots of Neupagin, which is a growth factor aimed at helping him up his ANC. He'll get the shots regularly until he hits 1500, and after that I don't know whether he'll keep getting them or not. There's some wierd FDA regulations on that. He could get them when hospitalized in Florida (see March entries), but not in Missouri. Go figure. I've never gotten a satisfactory explanation on that.

The bump in the road comes in the platelet department. Last night his platelet level was 8, which is very low -- normal for you and I is about 140. He got a unit overnight (Creative Sleep Deprivation again), but he had nose bleeds almost all night. It was a loooooooong night. So, they drew his levels again, and he dropped to 4. He's supposed to get a jump to about 20 to 25 from a unit.

We spoke to the doctor this morning, and she said they think he's probably developed antibodies, due to the large number of transfusions he's had, particularly over the last year. So, his body is attacking and destroying the new platelets as quickly as they can give them. They've already tried giving him ABO matched platelets, which are matched to his blood type. That usually takes care of the problem, but its not in his case (he never does anything he's supposed to do). So, now they're going to try for HLA matched (whatever that is), but it takes a while to find the right match. In the meantime, he's dangerously low. So, they've ordered another unit for today, and no bumper cars or skydiving for him for a while. Even if his ANC reaches the much-hoped-for 1500, he can't be discharged until this platelet thing is resolved. He has to be able to maintain over 20 for a few days at a time before they'll let him walk around on the street. Even then, he'll have to come back to the clinic for more about twice a week. But, the doctor assured us that, while this is problematic, its not unheard of and its not time to panic. She seemed confident that they'll figure it out. With Multiple Myeloma and a MUD transplant, the platelets are always the last thing to recover.

He's also getting whole blood and more IV antibiotics today (mostly as a precaution), so the IV pole is his new best friend once again. Makes taking a walk (which they want him to do about 3 times a day) very challenging.

I forgot to mention that when they moved us upstairs, I lost my "bed" such as it was. I know from prior experience to ask for a cot on this floor as soon as I arrive, which I did (it was 4:30 p.m.). It finally got here -- at 8 a.m. sharp the next morning! I love the way this place operates. I spent my first night in the recliner, which won't stay reclined. It kept collapsing back on me all night. So, I was pretty excited to have a cot last night. Its pretty warped and rickety, and by this morning I was (almost!) wishing for the recliner again. Urban camping at its finest.

Greg sends a special "Hello!" to Nurse Lyda and all the folks at St. John's outpatient clinic. He hopes to see you all soon (just not often!). Also, a big "Hi!" to Joe Brewster and the whole gang. Glad to hear you're keeping Perri informed. Say "Hi" to her from us as well.

We're in the process of trying to decide whether I should stay or come home. Matthew, although having fun with his cousins, really needs me, and there's a rumor going around that I still have a job (can anyone out there confirm that?). If Greg gets discharged, the Hope Lodge (where he'll be staying the summer) isn't far from here, and has shuttle service back to the hospital, where he'll be coming to clinic almost daily. Eric has Sunday off, so he could drive the van up, and I could follow in my car, and we could spend Father's Day with Greg. But, its all kind of up in the air right now. I'm having a hard time making a decision. I'll probably wait to see tonight's lab numbers, and see how this platelet thing turns out.

Well, this got much longer than I intended. Thanks to all once again for the prayers, comments, thoughts & good wishes. We both hope to see you all very soon.

Love,

Greg & Ann

Tuesday, June 16, 2009

The View from our Window


Nice, huh?
Yesterday about 3 p.m. we got the word to pack up -- Greg was being moved to another unit. So much for our nice view. We've been moved to the low rent district. They moved him upstairs to the Transplant Support Unit. That's actually good news, because only people who are doing well get moved. They moved 4 of us yesterday. There are 4 new MUD patients coming in & they had to make room. Its amazing how much crap you can accumulate in 3 weeks, even in a tiny hospital room. I took a bunch of stuff we weren't using to the car. So, anyone coming to visit, call first. We're only one floor up from where we were.
Greg is feeling pretty good. He's still really tired & has no appetite though. I think that's a normal side effect of all the meds. We were notified that his Tacro levels were well within normal limits yesterday, and they've discontinued the IV and started giving it to him orally. So I guess he doesn't get to rename the hospital. I've already spent the settlement money on Home Shopping Network. You can never have too many Salad Shooters. But, the best news so far is the ANC is up to 880 as of last night. Remember, the "magic number" is 1500. More than halfway there! The nurse just drew today's labs, so we won't know today's number until about 7 or 8 tonight. But we're on the right track.
I got my package from the office yesterday. Thanks to all for the good wishes. Ian: Greg's looking into your suggestion. MML: I told Greg I hope you win an award at the fair for your cookies. He said, "I don't care, I just want her to make me some cookies." Susan & Deb: Maybe we could put a team together when I get back? I bet there's lots of readers here who'd make great roller derby players. (I'll refrain from naming names.) Should be about as successful as the water polo team my office was trying to put together during the Olympics.
Special wishes go to Vicki who has a houseful of relatives from Sweden and had emergency gall bladder surgery yesterday. Hope your recovery is fast!
Still hoping to get out of here late this week. Now we just have to figure out how to get a vehicle up here for Greg to drive when I'm gone. I'd hate for him to have to hitch hike back & forth to the clinic.
Thanks to all. Keep the prayers coming!
Love,
Us

Monday, June 15, 2009

Creative Sleep Deprivation

Things are going up, slowly. Two days ago his ANC (infection-fighting white cells) were up to 180. We don't have yesterday's numbers, but I'll get them to you when I do. I was down for the count yesterday with a major migraine. By the way, you don't want to do that when you're living in a hospital, and you're not the patient. No one cares. Poor Greg was trying to take care of ME. But, I'm much better today.

On the medical front, we had a nurse who made a major screw up yesterday. His Tacrolimus (anti-rejection drug) is supposed to be a 20-hour IV infusion. That's because if the levels get too high, its toxic, can cause liver failure, and probably a whole host of other issues. She hung it at 2, as usual, and at 4 it beeped that it was done. She programmed the pump for 2 instead of 20 hours. We've had three docs in so far to apologize. Probably trying to head off the lawsuit (Greg's going to rename the place "Skibinski-Jewish Hospital" -- nice ring, huh?). They're watching his liver function closely, and flushing him with MORE fluids (you should see his ankles!), and so far, everything seems to be OK, but we'll have to see. They drew labs this morning to check his Tacrolimus levels, but we don't have the results yet. She also forgot to draw his CBC for labs (complete blood count), so we didn't get the word that he needed both blood and platelets until after midnight. The good news is, we didn't like her anyway, and I seriously doubt she'll be assigned to Greg again.

However, they're still very pleased with the way he's progressing. The attending physician was in this morning, and said they can probably start oral Tacrolimus soon, and, she thinks he could be discharged to outpatient by the end of the week. No guarantees, but that's very welcome news. We'll have to see.

As an aside, the Creative Sleep Deprivation Department has been working overtime. Literally. Saturday night at 10:15 we heard this huge rukus in the hall. Banging, hollering, and machinery running. I look out, and they're stripping the floors! The noise and mayhem went on 'til well past midnight. Last night, at about 10:30, they started re-waxing them. Sigh. I wonder what they have in mind for tonight.

Judy seems to be surviving the children, even though she's horribly outnumbered. They managed a trip to Price Cutter with no casualties, and got tickets to the New Shanghai Circus for Wednesday. She's making Eric go along to help referee. Matthew is having a ball, and the tearful phone calls have ceased. But, he was very glad to talk to his dad, and hear that "the sickness is going away." It was hard not seeing him this weekend, but he's pretty happy right now, and hopefully, I'll be home soon.

Thanks to all once again for the prayers & good thoughts. I know they're working. Greg is getting through this fairly easily. And I know there's a huge potential for problems. I see an awful lot of stressed-out family members on this floor, and know there's a lot of people up here in much worse shape than he is. I just thank God every day for the tremedous progress he's made and for such great family and friends. We cherish each and every one of you.

Thanks for everything!

Love,

Greg & Ann

Saturday, June 13, 2009

We Have ANC!

And, no that's not a rock band from the '80s.

After two days of being at a big fat zero, last night Greg had an ANC of 100! Woo Hoo! Triple digits! Remember, the magic number we're looking for is 1500, so he has a way to go, but its a start. He can't be discharged until he hits that number (a few other things need to be at the right place, too -- like his mouth sores, no fevers, reds & platelets). Over the next few days we'll see how fast he progresses, and get a better idea of when he might get out of here.

Actually the docs are pretty happy with the way he's progressing. Dr. Vij stopped by last night, and said he's pleasantly surprised with how well things are going. So, we're very encouraged. The main problem right now is fluid retention. They're trying to get him off the IV fluid by day, Lassex by night Merry Go Round, but its not easy. If he's holding too much fluid, he'll get Lassex. That screws up his electrolytes, and then he needs those replaced, which come with more IV fluid. Its a vicious circle. As of last night he's gained about 15 pounds, and that's without hardly eating anything all week long (because of the mouth sores). Its all fluid and its mostly on his lower legs and abdomen. But, they want him to drink water, rather than IV, because the IV contains saline, which makes him retain water. However, his lungs are clear as a bell, which is good. I'm trying to get him to walk more, too, as that will help take the fluid off. But, Loyal Readers will recall that the swollen ankle thing is a normal occurrence, and they eventually go away. I have a feeling this time its going to take a while.

On the Mouth Front, he's much improved, although its still a bit of an issue. He had 4 doses of steroids, and he's been doing his "mouth care" religiously. There's two different types of medicated mouthwash & he's supposed to do each one 4 times each day. He hadn't been until the problems started, but has been now & its made a difference. Also, because he's been having a lot of bleeding in his mouth & nose, he's been getting A LOT of platelets. Over the past 4 days I think he's gotten 5 units. He's not holding onto them for long. One day he was at 19 (140 is normal), and they gave him some to get him over 20. 12 hours later he was at 6! They're beginning to think he's developed something that requires his platelets to be "HLA matched." I'm not sure exactly what it means, other than that patelets for him will be harder to get now. Plus, he'll be needing them for a long time, as the patelets are the last thing to recover from the transplant. Sigh.

On a personal front, major kudos to Frances and Cindy, who brought us an authentic, home cooked Chinese meal yesterday! Plus plenty for leftovers! Fried Rice, beans & my personal favorite thing in the whole world -- Shrimp with Apple. Absolutely to die for! A very welcome respite from the hospital fare. A few minutes after they got here, Judy arrived with her trio. It was great timing. Judy and Mark have been corresponding with Frances & Cindy for years, but never actually met. Plus, Judy brought me white chocolate macadamia nut cookies, so all was right with the world. (I really only came here for the food, and I was terribly misinformed!).

Matthew was thrilled to have his cousins. They had a "sleep over" in the family room last night, and my bedtime call was the shortest its been since we got here. It was almost "Mom who?" He couldn't wait to get back to the mayhem.

This is the first weekend we've had with no visitors, so its going to be kinda wierd. Tom & Tammy are on their way home, we think on a direct flight to Milwaukee. Huge thanks to them for holding down the fort.

That's all for now. Hope everyone has a great weekend, and I'll keep you "posted" on that ANC. Thanks to all for everything.

Love,

Greg & Ann

Thursday, June 11, 2009

And Then There Was None


Hair, that is. Kinda looks like Lex Luthor is ready to take over the world -- again!

When we last left Our Hero, he was experiencing a lot of mouth sores & sleeping pretty much all the time. Well, in the last 24 hours, he seems to have turned the corner in that department. Yesterday morning, his mouth was REALLY gross. Really. He could barely talk, only could swallow a little, and was openly bleeding in his mouth. Everyone who looked at it said it was really bad. The doc was talking about switching all his meds to IV. But he got on round-the-clock pain meds, and they gave him some steroids and platetelets. By yesterday afteroon he was starting to feel better. The swelling went down and they gave him more plateletes last night. This morning he had coffee (for the first time in two days), a bagel and bacon. Everything's better with bacon, right?


Counts-wise, we're still pretty much at the bottom. Loyal Readers will remember from last year that he can't even start thinking about discharge until his ANC (infection-fighting white count) is at 1500. The other day his was 8, and I think it was supposed to go down from there (at least it doesn't have far to go!). We're still waiting to hear what it was yesterday. The lab always posts this info late, and it still wasn't up early this a.m. But I'll let you know when I have it.

It was great to see Frances and Cindy yesterday & in spite of Greg's mouth issues, we had a nice visit. They're in town for a little over a week, so we should get to see them again. And, special thanks to Nancy for the DVDs. Even I'm getting tired of History Channel and Food Network. And that's saying a lot. Greg hasn't seen any of them, and I've only seen "Love Actually" -- and we'd better not be watching that when the Communion Minister makes his daily appearance.

On the home front, Matthew seems to be having a better week -- no raw chicken or tearful phone calls. However, Uncle Tom & Auntie Tammy are teaching him how to gamble -- War & Go Fish, so anyone who visits better bring their loose change. (Grandma taught Eric his math by playing Blackjack. He could add any combination of numbers up to 21, and everything after that he'd just say "busted!" Try explaining THAT to the teacher.) Judy arrives to take over on Friday, with her 3 lovely daughters. Rumor has it Eric is installing a lock on his bedroom door.
Thanks to all for the love, prayers & support you're sending our way. We can feel it. Now lets just pray for those counts to come up.
More later!
Love,
US

Tuesday, June 9, 2009

He's Doing Everything He's Supposed to Do -- So Far

OK, I'm sorry there's been such a lag in posts -- I know some of you get concerned that there's a problem if I don't post daily. Rest assured, if there's a major problem, I'll get the word out. The weekends get pretty busy with company, and Mondays seem to be turning into a day of recuperation from the weekend. But, its worth it. Matthew and I had a great time. I just wish we could see Eric as well, but with work, summer school, and ACT prep, its just not to be. But, we talk on the phone as much as possible. He seems to be in good spirits (he's too busy to worry!), and Matthew, although still having "issues" seems to be getting the hang of this, and seems to be figuring out that mommie and daddy just can't get home right now. I talk to him about 3-4 times a day. Bedtime is still the hardest. Grandma and Auntie Skibby are done torturing him, and now its Uncle Tom & Auntie Tammy's turn. They've promised no raw chicken -- unless he misbehaves! I've prepped him a little better, telling him Uncle Tom is even a better cook than Mommie. Its all about expectations! They have a fun week planned, so hopefully the time will pass quickly.

Greg is starting to feel pretty crummy, beginning late Sunday, but I've been assured that all is normal. None of this is beyond expectations. The main issue is his mouth. I've never seen mouth sores this bad. His entire mouth is raw, and it goes down into his throat and his inner ears. Its from a drug called methotrexate (sp???), an anti-rejection drug. The protocols call for three IV doses, spaced every few days after the transplant. His last dose, scheduled for last Sunday, was cut in half because of the mouth issues. The nurse told us that many people can't have the full dose just because of this problem. Unfortunately, his mouth won't start to get better until his counts start to recover. That could be several days yet. Right now he can barely drink anything, and food -- even yogurt, applesauce and the like -- is out of the question.

His counts have pretty well bottomed out now, and he sleeps a lot. His old bone marrow is wiped out now, and over the next few days he'll start the grafting process -- rebuilding his marrow with the donor cells. He got platelets two nights ago, and whole blood last night -- well, actually this morning. We finally figured that out. Loyal readers will recall that they draw labs between 2 & 3 p.m. every day, and if you need anything (blood products, electrolytes, etc) they start about 10 p.m. and do it all night long -- pretty much ensuring no one gets any sleep. The other day, Greg finally blew -- telling them just what he thought of the system (he was right! And WAY more tactful that I would have been at that point). He'd just get to sleep about 10, and the blood products would arrive about 11-ish. They have to take vitals about every half hour (and blood takes 4+ hours). So, he complained to the nurse, and, turns out there's an option that you can have your blood products start at 5 a.m. the next morning. No one bothered to tell us. So, the last two nights (mornings) we've done it that way and its MUCH better. He's actually getting to sleep some. He's getting his second unit of blood now -- as opposed to 2 a.m.

As an aside, Tom & Tammy took advantage of the much ballyhooed direct flight from Milwaukee to Branson. They found out from the rental car people (which they had to take a taxi to get to!) that the flight is being discontinued now that they're here. They will probably have to go through Atlanta to get home. And the airport has only been open about 3 weeks!

Other than that nothing much to report. Frances and Cindy are flying in from California to visit Cindy's parents here in St. L today, and will visit us tomorrow. We're looking forward to that. By that time, Greg's hair should be gone. Its falling out in clumps now, and the nurse promised to bring the electric shears sometime today. If I can figure out how to take a picture with my camera & get it on here, I will -- but no promises.

Thanks once again to all for prayers, thoughts, Karma, and every other good thing we know you are sending our way. No one is even talking about discharge yet, but hopefully, in a few days, we can turn our attention in that direction. If you need something specific to ask the Big Guy for, that would be it.

Thanks again!

Love,

Greg & Ann

Friday, June 5, 2009

Doing Well

Greg is doing pretty well, following the pattern he's supposed to, according to everyone here. His lab values continue to drop, but he hasn't completely bottomed out yet. He actually got a "boost" to his white count from the donor cells (not much, but some), and has been needing platelets about every 2-3 days and blood about every 4 days (well, nights, actually. They do everything around here at night -- that's to ensure no one gets any sleep.)

The most major side effects are the Revenge and now, mouth discomfort. I hesitate to call it "mouth sores" as he really doesn't have any, but his mouth feels dry, uncomfortable and his taste is "off." He doesn't have any appetite and I have to remind him to eat. He's also pretty tired. But, these are all the things he's supposed to be experiencing at this point, so that's good. GVHD won't become an issue until late in the weekend or early next week. Remember, he has to have some to show he's grafting, but too much is bad.

The VRE is here to stay. I got more clarification on that. The "E" is a bacteria in your gut. Its always there. Its really not a problem ordinarily, and isn't for Greg right now. However, under these circumstances, it could spill over into his bloodstream, causing an infection. If it does, its resistant ("R") to Vancomycin ("V"), the antibiotic usually used to treat it. So, the test they ran to find out he's VRE positive is just to tell them that. The HazMat suits are just to help prevent the resistant strain from being passed to others here on the floor. Its really a fallacy, kind of like airport security. I don't think they really do any good. Sometimes the nurses don't even wear them. Plus, the only way anyone could come in contact with it is from handling bodily fluids (which I don't even go near). Many times the techs do their job without gowns or gloves. I can leave the floor & go to the main cafeteria (or anywhere else) without a gown. So, following their logic, I could theoretically infect the whole rest of the world. But, the pretty yellow gowns make the infectious disease department happy. So, that's what its all about I guess.

Other than that, things are pretty uneventful so far. Grandma and Auntie Skibby continue to torture Matthew by taking him to the zoo and cooking him steak. Eric is keeping busy working and studying for the ACT (6/13!). We're getting a little stir crazy, but Greg's brother Tom & his fiance Tammy are coming to take over kid kare & will visit this weekend. (They're flying into the brand new Branson "International" Airport.) I get to see Matthew & he wants to go the Science Center and Ted Drew's again (I told him we have to eat some REAL dinner, too).

Thanks to Dana, Leah and Anna Kate for the pictures. Uncle Greg has them hanging on the wall where he can see them. He especially likes how you drew him. Thanks to the Whereley's for the DVD set. I have a feeling its going to come in REALLY handy as time goes by. MML: we started "John Adams" and its very good. When I told Greg it was in 7 parts, he reacted like our clients: "THAT LONG?" I just looked at him. "What, you got somewhere you need to be?" We both started laughing 'til our stomachs hurt. Joanie, thanks for the card. Its OK it was "Irish." He read it while wearing a red shirt. The St. Peregrine medal was great, too. He forgot to bring his. Speaking of forgetting, its always a good idea to put the lid on the popcorn pot. Unless you have a dog. Kim, we loved your card -- laughed 'til it hurt. Are you SURE they're supposed to open in the back? Maybe that's why he was getting all those funny looks.

That's all for now. Thanks for all the prayers. They must be working. Please pray everything grafts well, and that we continue to be boring. Boring here is good.

Love,

Us

Wednesday, June 3, 2009

All's Well (for the most part)

Sorry about no post yesterday. Greg was feeling fine, we decided to take the day off and I had my big outing to Wal-Mart. (If I don't go out to buy underwear, the whole economy of St. Louis falls apart!).

The comments were great. Kim, I loved your name suggestion, but if Greg adopts it, it will have to be plain Ula. I can't remember the rest. That's longer than my last dog's name (Magnolia Culpepper Koszuth Skibinski -- now THAT'S a mouthful. Or, at least, ethnically schizophrenic!). Nancy, Greg says, "How do you know you misunderstood the context?" He says he has very perky stem cells now. (Its been a long time since I've seen "Austin Powers.") Garlicy creamed corn? Remind me to be busy the next time either you or Ginger invite me over for dinner.

We had an extremely uneventful day. Then, I opened my big mouth and now we're wearing the HazMat suits again. Loyal readers will remember that they measure EVERTHING that comes in & goes out. Last evening Greg had something that needed to be "measured" in the bathroom. I asked the nurse if it needed to be sent off for a culture (you need three negatives to be cleared from C-Diff). So, she checked the computer and saw that he's had his 3 C-Diff tests, all negative, but that he tested positive for VRE two days ago, and no one caught it. VRE = Vancomycin Resistant Enterococcus, which I heard on CNN has recently filed for bankruptcy, but will be receiving TARP funds later in the week. Vancomycin is a broad-spectrum antibiotic they hang regularly around here. They've given it for every infection he's had EVER, including the fevers he had when he got here this time. They gave me a pamphlet that "explains" it, but, like all the other written info I get from them, it was written by a 3rd grader for a 3rd grader. The new attending, Dr. Casshion, (DP's replacement) comes in the mornings (she does not have fangs and has a reflection in the mirror) and I plan to ask her. However, in the meantime, all visitors and staff must wear the bright yellow plastic HazMat suits & gloves. (It matches Shirley's wig perfectly!). Since I spend the majority of my time in the room, I have to wear it whenever I leave -- to go to the bathroom, the pantry, family lounge, a walk, etc. Its quite fashionable and warm. While VRE is no threat to a healthy person (we all have Enterococcus floating around inside us -- even YOU Ian) its a real threat to immune-compromised people. I could inadvertently spread it to them in the common areas of the floor. From what I've read so far, he's on these precautions for the duration of his stay. Even if he tests negative later. Sigh.

Today we're going to ask about what side effects and problems to expect over the next few days. Greg's feeling pretty good this morning, but we know once his counts bottom out, he'll have some issues. Also, he must show some signs of GVHD (Graft Versus Host Disease), but not too many signs, to indicate that the cells are grafting and everything is going OK. More on that later.

On a personal note, Matthew is really having a hard time with this separation. He's having an average of 2 melt-downs a day. Poor kid. I know its very scary for him, but I also know he's a bit of a drama king. I talk to him, he melts down, then I melt down, then Greg melts down. We're developing a pattern here. Last night he told me Grandma and Auntie Skibby made him eat raw chicken & wouldn't give him anything else! They were starving him! (I suspect that's the drama king side of him). Turns out they had the audacity to make him exactly what he asked for for dinner (grilled, not raw, chicken!) They also took him swimming to "Eric's pool" (the Nixa Community Center where he lifeguards), and baked cookies. What meanies! Today he goes to play with Emma, so hopefully, the diversion will do him good.

That's all for now. I'll post more when something happens. Just remember, no news pretty much means no news. Thanks for all the comments, concern, prayers, Karma, finger-crossing, offerings to Budda, etc.

Love,

US

Monday, June 1, 2009

Day Zero

Since today is "Day Zero" – AKA Transplant Day, I’m going to try a modified approach to a "live blog." Since I’m still having connection problems, I’m going to "live blog" in WordPerfect, then at the end copy & paste the whole thing into a blog entry. We’ll see how it goes.

6:30 a.m. – Greg didn’t get much sleep last night until he buzzed for some Ativan (sleep aid) at about midnight. I think he’s a little nervous about the transplant. Who wouldn’t be. However, he just woke me up, saying he thinks we should get up and get ready. "Why?" I ask? "I don’t know." So, I humor him & get up. It’s a hike to get to the bathroom (down at the end of the hallway), and on my way there, I don’t see a soul in the hallway. Even the nurses aren’t running around yet. Oh, and the bathroom is completely out of TP. I found that out after it was too late.

6:45 – I decide to shower, to beat the rush. Greg, who was shagging me out of bed earlier, has gone back to sleep. I think he has an Ativan hangover.

7:15 – Again, because we’re anticipating a lot of activity this morning, we order breakfast early.

8:30 – Breakfast arrives, followed by the nurse, Dave. He gives Greg his morning Lassex. Goes great with breakfast.

9:00 – Good thing we hurried (insert sarcasm). The transplant is set for about 2 p.m. Sigh. Found out the cells are frozen, still don’t know why. Dave says the only real disadvantage to having frozen cells is that they have the preservative in them. People can have a reaction to it, and it stinks – for days. Its kind of like garlic in that it will come out of his pores & breath. So he’s got that going for him. However, we don’t anticipate any adverse reactions, as he’s had it twice before with no problems, plus they pre medicate him with Benadryl just to be sure.

12:00 – Greg’s FREE! (Well, for an hour, anyway). The second 20-hour infusion is finished, so he gets a whole hour off of the IV pump. Found out why the anti-rejection drug has its own special tubing and why it takes so long. Seems its only compatible in a dextrose suspension. Kind of like getting pancake syrup through an IV. Its so thick it can’t go in any faster. (Oh, and on a personal note, the bathroom is still out of TP.)

1:00 – Greg’s all cleaned up and ready to go. Shirley the cleaning lady came in so we went for a walk. Shirley is a trip. She’s a 65 year old African American lady, and while ordinarily that would be irrelevant, you have to know that in order to get the full mental image of her in her platinum blonde wig. We’ve been seeing her up here since 2004. She comes in banging her mops & supplies, talking to you, the staff, herself – no one in particular and everyone in general. You could be fast asleep and she’ll still talk. Nonstop. About nothing. I think she talks when there’s no one in the room. She does manage to get the room kind of clean. Greg’s trying to get his hands on a DSM-IV to see if he can find an Axis I diagnosis on her. (For those of you at my office: I think she's from 10-E).

1:50 – They’re gearing up. Bringing all the equipment into the room. Some of you may remember last year’s transplant. Some of you are new. This is basically treated like a standard blood transfusion. They’ve brought in this hot water bath machine-thingy that thaws out the cells. Greg was disappointed. It looks like a big cheese-melting vat. He was hoping for nachos.

2:00 – They’re here – the cells, I mean. They’re in a giant Thermos packed with dry ice. Dave and another nurse are checking the numbers just to make sure they’re HIS cells. Always a good idea. All three bags appear to have the right numbers on them.

2:23 – Bag one of three is on its way in. We just found out that the reason his cells were frozen was simply a scheduling issue with the donor. They tell us its no big deal and doesn’t diminish the quality or effectiveness of the transplant. (Then why were they making such a big deal about it?)

2:40 – Bag one is done, vital signs look good & bag two is on the way in.

3:00 – Bag two is done & three is up & running. Greg’s feeling OK, but his legs are throbbing. Can’t figure out why, but the nurse doesn’t seem too concerned. Its really starting to smell like the preservative agent in here. Smells like a can of creamed corn, only stronger. I told Greg he doesn’t get another kiss from me for a few days. It’ll take that long for the preservative to work its way out of his system.

3:20 – We’re done!

OK everyone, thanks for all that great Karma. I think it worked! Greg’s pretty tired, and they gave him a sedative, so I think he’s going to take a nap now & let all those cells go to work & start grafting. I think I’ll take a nap now, too. All in all, it was pretty uneventful. And that’s a good thing. I’ll update again tomorrow & let you know how he’s doing.

Love,

Greg & Ann