Please Join Us

Please plan to join us on Saturday, January 2, 2010, for a visitation from 10:00 a.m. until 12:30 p.m. at St. Elizabeth Ann Seton Catholic Church, on the corner of Republic Road and Cox Road. At 12:30, there will be a mass celebrating Greg's life at the church.

RIP

Gregory John Skibinski passed away peacefully this morning, Wednesday, December 30, 2009 at 11:30 a.m.

He was surrounded by his family and friends.

We already miss him terribly.

Eternal rest grant unto him O Lord, and let perpetual light shine upon him.

Saturday

I'm back in St. Louis, and I have to make this quick, because I'm on my work laptop, and it doesn't usually behave very well here. (Actually, this is the fourth time I've re-booted just to get this post up).



Unfortunately, when I got here today, I learned Greg's condition had worsened. He was on 100 percent oxygen, they believe he has extensive lung damage, they found CMV in his GI tract as well as his lungs, he's grown a new bug, but they don't yet know exactly what it is (although they assume its antibiotic resistant, as he's been covered for just about everything since 12/6), and he's bleeing internally (they got his platelets up over 100 tonight, and that should help some). They were able to get is Oxygen levels down to 70 percent during the day, but as I'm writing this, his saturation levels are slowly dropping, so I assume they'll be increasing what they're giving him tonight.



Long story short, Our Hero is in deep trouble right now. They're not giving me much hope. Skibby is here (she drove through Illinois in a snowstorm). Matthew is at home with Grandma, and Eric decided to go ahead to his hockey tournament, as we both know that Greg would be telling him to go if he could. I had planned to try to go to work on Monday, but I think that's going to be scrapped.



Thanks to all for the wonderful Christmas gifts and wishes. I truly would not be holding it together if not for all of you. Especially to Kris for the Gatorade (you don't know how precious that was!), Julie for the chocolate (ditto), Tom and Scott for getting Eric to the tournament, and being ready at a moments notice to make the I70 run if needed, George and Mary for taking Sadie to church, Per, Vicki, Mark and Kerri for keeping Matthew occupied, and so many others who I know deserve special mention, but who I'm drawing a blank on right now. Please know that I don't know how I'll ever repay you all.



Please keep praying. A miracle would really come in handy right now.



Love always,



Greg & Ann

Merry Christmas

Merry Christmas to all of our wonderful friends and family for all your support and help during this difficult time.

On the medical front, Greg's condition has been about the same for the past week, which is one of the reasons I haven't updated in a while. He's still in ICU, still on a ventilator, still considered critical, and the prognosis still isn't too great. I'm home with the boys for the Holiday, but plan to go back tomorrow. I call every day to speak to the nurses or occassionally a doctor. They tell me the same thing every day. I'll stay in St. Louis for the weekend, and if there's still no change, or (hopefully) improvement, I'll probably come back Sunday and try to go to work on Monday. Sadie plans to stay, at least through next week, and has been a tremendous help.

The other reason I haven't updated in a while is that we confirmed that Sadie's bout last week was NOT stress, but a bona fide stomach virus. Monday night Eric called me and told me Matthew had gotten sick. Sadie had already gone to bed, as she had still not fully recuperated. At about 10:30 p.m., I decided I could do more good at home than where I was, so I took off from the hospital. Eric kept me updated along the way, and Matthew was REALLY sick. Eric was an outstanding big brother, and took care of Matthew until I got home around 2 a.m. Sadie didn't know anything about it until Tuesday morning. Then, Tuesday night, Eric got hit with it, and I got hit Wednesday afternoon. I'm just now beginning to feel human again.

I know Greg would join me in thanking you all for your prayers and support. We truly cherish all of you more than I can express. Have a very Merry Christmas and I hope to have better news the next time I blog.

God Bless,

Ann & Greg

Sunday

Well, you just can't make this stuff up. First, let me say that Greg's condition really has not changed -- no better, but no worse, either. But, more on that later.

Greg's mom, Sadie, just got released from the ER. Really.

Yesterday was a very hectic day, but a very nice day. My sisters, Debbie and Judy, came down from Wisconsin with two of our nieces, Lauren and Kacey. Loyal readers will remember that it was Kacey who saved the day this summer and stayed with her Uncle Greg at Hope Lodge, where they both pretty much ate their way through St. Louis. (If you want to eat well, hang out with the guy on steroids). Later in the day, Skibby arrived, also from Wisconsin, and Greg's brother Tom brought Sadie, Eric & Matthew up. Everyone had a good visit and got to see Greg (except Matthew, but he was happy just to see me). My sisters had to leave, but the Skibinski clan went to dinner at Guido's on the Hill. We had a wonderful dinner, and I went back to the hospital, while everyone else went to the hotel. At about 7 a.m. I got a text from Skibby that they were in the ER with Sadie, who was having.....well......let's just say extreme GI output....from both ends. At one point we didn't know if they were going to admit her or not. (I thought they might consider renaming the hospital. We are WAY over our quota of people in the hospital.) They finally discharged her about 2:30. Still don't know what caused it -- food, a bug, or just being all stressed out. I guess if the kids get sick in a few days we'll know it was a bug. My money is on being stressed out. I think she's got things under control, but looked really tired when I saw her. Hopefully, she'll mend quickly and be in good shape for the holidays.

Meanwhile, Our Hero is about the same. The settings on the ventilator haven't changed too much over the past few days, but they did reduce his respiration rate this morning, which he tolerated pretty well. Friday night he had some oxygen saturation problems for a couple of hours, but that seemed to pass. They have to change his position every few hours, and sometimes he doesn't tolerate that too well.

The working theory is still CMV, and that's what they're treating him for, while keeping the antibiotics on board just in case. Oncology is recommending adding Immunoglobulin, which should help his immune system fight this. They couldn't add it before, because they thought it was possible that this was his immune system causing this, and so that drug would have made it worse. They tell me that CMV is very difficult to treat in the lungs.

I've been told that after about 10 to 14 days on a ventilator, the docs can get some idea of which direction he's going to go. Today is day 11. So, the next few days are crucial. I'm really hoping he'll stay stable enough for me to spend Christmas with the boys.

Thanks to all for all your support, especially to those who helped make Mattew's birthday party such a huge success. He was thrilled, and I'm told we can now mount a war with the "droid army" he's collected. Kris and Julie & families, as usual, I couldn't be getting through this without you. To the Coalsons, thanks for the transportation and extra playtime for Matthew. Fred, thanks for the nice letter you sent out to the Association. There's so many more to thank by name, but I know you all know who you are. We truly are blessed to have such great family and friends.

Please keep those prayers coming (I know they are!)

Love,

Ann & Greg

Theory du Jour

Update at6:15 -- Well THAT theory didn't last long. One of the many docs just came in and said they aren't going to start the immuno suppressant drug because one of his cultures grew CMV, which he was negative for before, and has been treated phrophylaxisly (if that's a real word). So, we're back to a virus, and they're going to resume gancyclovir, which they were giving him before, but discontinued a few days ago. Sigh.




Thanks to all for your thoughts and prayers. I read the comments daily, and hope and pray that I will be able to read them to Greg soon. Its great to know so many are out there pulling for him.



Greg stayed fairly stable through the night, and remains so today. Water retention is an issue, and they've got him on a lassix drip (no pun intended), and an insulin drip. We got the sugars under control yesterday, but they resumed the tube feeding today, so that's all fubar again.



Well, the latest theory is that this is not an infectious pneumonia at all, but rather an "idopathic pneumonia." These guys in the medical ICU are working closely with the BMT team downstairs, and basically what they think is this could be a delayed reaction to the chemo and the transplant he had in May & June. Under questioning, they admitted that they usually see this within the first 100 days. I said, "So, this is a longshot?" and they admitted it is. But, nothing from any cultures has grown anything, so they're at a loss. The docs are conferring as write this (if I walk by the nurse's station slowly enough, sometimes I can eavesdrop) trying to decide if they want to start a new drug called etanercept (or Enbrel). Its an immunosuppresant, so its not without risk to someone with his screwed up immune system. They're trying to decide if the risks outweigh the benefits. My guess is they're probably going to go ahead and try it. Skibby asked me how long after they start it should they expect to see results? I said, "Boy, that would have been a really good question to ask." I'll try to remember to ask that tomorrow.



I'm a wee bit sleep deprived right now. X-ray came in at 12:30 last night and kicked me out, then at 3:30 a.m. the nurses kicked me out because they decided to give him a bath. Seriously. I'm hoping for a quieter night tonight.



We're going to have a busy weekend, as family is coming. We decided to let Matthew come to St. Louis, although he won't be allowed to see Greg. That's OK, I don't want him to see his dad like this anyway--a little too scary for a 6 year old (its scary enough for us adults). But, this way he can at least see me, and I can see him. It will be good for both of us. Eric is coming too, along with my sisters, two nieces, Tom, Skibby, and Sadie. So, with all that company, I may not get to post much. No news pretty much means he's the same, and I'll post again when I have a chance.



Thanks to all.



Love,



Greg & Ann

Thursday

I know I owe you all an update, but I haven't felt much like writing.

Greg's condition hasn't changed too much over the past 48 hours. He has pneumonia, but they still don't know what kind. They believe its bacterial, but they're treating for everything. His latest CT scan showed "significant" lung damage from the pneumonia. They don't know yet if its reversible. He also been bleeing pretty steadily from the GI tract, and they've been giving him TON of packed red blood cells and platelets. They actually got his platelets up to 91 as of this morning, but we don't know if that will hold. He hasn't been at 91 for years. But, I'm suspecting that they draw right after they get the platelets in. We'll see what they're at in 24 hours. Blood sugars are all over the place, and his sodium levels are rising.

He's got lots of things going on, and the doctors aren't saying much. I finally asked, point blank, for a prognosis. The lead ICU doc said that, taking into account everything that's happening now, along with his medical condition to start with, the doc estimates about a 70 to 80 percent mortality chance. Not very good odds.

I have to keep telling myself that he's beaten the odds before, and he's fighting now. I don't think he's ready to give up yet.

Please keep the prayers coming.

Thanks.

Ann & Greg

If Its Tuesday...

...It must be St. Louis.



Let me start by wishing Matthew a very happy 6th birthday! Mommie and Daddy love you very much and will be home as soon as we can!



As usual, we got a bed in St. L after the sun went down yesterday, and after I had given up on it and thought I'd get one more night at home. He is not in the BMT ICU, but in medical ICU, just a few floors up. Once again, for various reasons, there were no helicopters available last night, so they contracted with a private company for a ride on an airplane. So, about the only method Greg has not been shuttled between hospitals now is covered wagon. No one at the hospital told me anything about it, and the first I knew about it was when the nurse gave me a bunch of paperwork to sign (which I have never done before for transport) and asked me for a credit card. Seriously. The private company wouldn't fly him without it, even though it was my insurance company that made the arrangements, and had pre approved it all. I also had to sign stating that Greg was only allowed 2 carry on pieces of luggage (!), and then they wanted a photo ID. Really. The nurse and I convinced them that his hospital arm band was probably enough ID, as I really don't think anyone would be trying to impersonate him at this point. George suggested that his two carry ons be Scotch and soda. Not a bad idea.



So by the time all was said & done, the entire transportation process probably took as long as it would have if they'd have just put him in an ambulance & drove him here. They had to load him into an ambulance & drive him to the Springfield airport. Get him on the plane (did he have to clear security?), fly him to the airport here, put him on another ambulance, and drive him to the ER here, then walk him through the hospital, a total of about 4 city blocks, to get to this unit. Made sense from their point of view, I guess.



After I got word as to what time they were picking him up, I decided to get on the road a little ahead of him. One nice thing is that there's very little traffic between Springfield and St.L late at night. I got here about 12:30, and Greg got here about 1 a.m. By the time they got him settled in, I got into the "room" (its about the size of my bathroom at home) at 4 a.m. Then the nurse had tons of questions for me. I'm glad I was able to verify that he's not pregnant. I'm operating on about 3 hours of non-contiguous sleep, so if I ramble a bit, at least I have a good reason. On the ride up here, I thought of all kinds of witty things to write today in the blog. Of course, now I can't remember a single one. They were all really funny at the time. You'll just have to take my word for it.



Medically, they specifically told me that they ARE going to reinvent the wheel here. They don't trust anyone else's conclusions. Cox sent all the nursing notes, but none of the test results -- incuding the CT scan of his lung. Its too large a file to e-mail, so even if they FedEx it, it won't be here until tomorrow. Figures.



These guys don't think its fungus (but its still evil) and they're going with CMV -- something that showed up in his lungs and he's had before. That would be fine with me. Fungal pneumonia is just about the worst kind to have, so I'll take CMV any day. Its still serious, but clears up a little easier. The ride made his vitals a little unstable, but he's levelling off today. He needs blood and platetels again (no surprise), they've taken a bunch of x-rays, he's got some GI bleeding now, which is new, and they're going to get their own CT scan of his lungs. Still no talk of a lung biopsy, as his platelets are 11 right now. This is a teaching hospital, so rounds this morning looked like a parade. At this point, everyone is naturally non-commital about diagnosis and prognosis, but I'm hoping that will change in 24 hours or so.

I'll post again when I have some info that I don't think will change within the next 20 minutes.

Thanks to all for your prayers and support.

Love,

Greg & Ann

P.S. Oh, and we're back in the HazMat suits, because last year he tested positive for something called VRE. What I wouldn't do for a BeDazzler!

Hurry Up and Wait

First, let me start by saying Greg is stable for now. He's still considered critical, still in ICU, still sedated, and still on a ventilator. Its definitely pneumonia, but they still don't know what kind. All bets are on some sort of fungus (insert previous rant against fungus of your choice here), and they're treating for that, as well as bacterial, viral and anything else they can think of.

On Friday, the pulmonary doctor came in and said that the bronchial "wash" they did showed large, abnormal cells and that he thought it was a secondary malignancy, but that they can't do a biopsy because of his low platelet count. He also said there's some unknown "mass" in his lungs. Needless to say, I had a mini nervous breakdown. It wasn't until Saturday afternoon that I got to see his oncologist, who said that while its a remote possibility, she doesn't think the rest of his symptoms are consistent with that. The infectious disease doctor thinks this is fungal, so I'm not circleing the wagons just yet. But there's just no way to know without a biopsy, and there's no way these guys are going to do a biopsy here with his low platelet count.

On Saturday, we (his oncologist and I) decided its probably best to move him to Barnes. She's leaving the country for 2 or 3 weeks, and the rest of the docs in her practice don't see too many BMT patients. Plus, if there is something going on in his lungs that is worse than what they're thinking here, he's better off there. They probably have the means to do a biopsy there.

The other issue is his DLI (stem cell "booser"). The National Marrow Center won't even collect the cells until his medical condition improves. So, if he's there, and he improves, they can go ahead and collect the cells, fly them in and give them to him. For reasons that have not been explained to me, they don't want to freeze this batch. They want to give them to him fresh.

The problem is, as usual, there are no beds at Barnes. He needs an ICU bed, preferably in the BMT Unit. Saturday we got a bed in the Unit, but no helicopters could take off because of weather. They held the bed until Sunday morning, but the helicopter was scheduled for maintenance. They were going to try to get a "loaner" (seriously), but none were available. So, they had to release the bed. Today, the weather is good, the helicopter is OK, so naturally there are NO ICU beds in the entire hospital, let alone on the ICU Unit. So, we're back to doing what we do best (or at least, most) -- waiting.

The bottom line is, he's maintaining the status quo. The docs here are saying he's not really much better, but he's no worse. Its all very frustrating. But, as I always say, it beats the alternative.

I'll post again when I know something. I just don't know what city I will be in when I do. Until then, thanks to all for prayers and support. We need both really badly right now.

Love,

Greg & Ann & the Boys

Deja Vu All Over Again

Well, I haven't posted in a while, because things have been going well, for the most part. Over the past two months, Greg has been recuperating, trying to get stronger and feeling pretty good.

That all changed Sunday. He got a fever, we went to the hospital, and as of 5 this morning, he's in ICU, on a ventilator, and has some sort of pneumonia (he went into respiratory distress). We just don't know what kind of pneumonia. I'm having flashbacks to 2003. The good news is, I'm not pregnant this time. They don't believe its PCP, because his CT scan doesn't look like it, and he was covered for it with meds for the last 3 months.

He is currently considered critical, but stable, but they warned me he can go south very quickly. We're in Cox South in Springfield, and there's no talk of any helicopter rides to St Louis as yet. He's not stable enough for that right now. At least he's not on an orthopedic ward like he was the last time! I specifically asked the doc if I need to circle the wagons, and he said, "Not today." I didn't find that terribly comforting.

I've seen about 6 docs today, and the theoretical diagnosis changed about every 23 minutes. Right now they think he has "breakthrough zygomycosis." Go ahead. Google it. If you can figure out what they're talking about, you're way ahead of me. About all I can retain is that he has been covered for about 80 percent of all mold-type pneumonia since his transplant. So, naturally, this is in the 20 percent they can't cover for. They want to scope out and "wash" his lungs, but they can't until they can get 6(!) units of platelets into him (they keep saying they've "called for a six-pack." Really.) And a lung biopsy is out of the question, because of his low platelet count. As usual, they're all freaking out around here about his count. I asked what it was. 21. I was thrilled. I told them, "Hey, we've been at 3. 21 is excellent for him!" But, even putting the ventilator tube in made him bleed. So, we're waiting for the platelets. As usual. And he bit his lip and it bled like a stuck pig. I guess a little blood on a white sheet goes a loooooooong way. However, I have to say that the infectious disease doc and the pulmonary doc both seem very smart. Maybe that's because I didn't have a clue about 3/4ths of the stuff they were saying.

I've been in contact with Dr. Vij's office in St. L so they know what's going on. Greg is scheduled for a DLI next week there. Basically, they're collecting more stem cells as I write this from his original donor in Europe to give him an extra "boost" to get his counts up -- not uncommon. Needless to say, I RSVP'd to tell them we would be late.

That's about all I feel like writing now. I'll try to write more later, if I learn anything new.

Keep those prayers coming!

We Now Return To Your Regularly Scheduled Blog

OK, I know these things are only useful if they're kept up, and I apologize for the delay, but things have been pretty hectic. Rest assured all is well. Greg did get out of the hospital on Friday 9/19, but not until well after 8 p.m., so we didn't get home 'til about 1 a.m. Saturday. He was VERY weak, and Saturday was pretty much the day from hell. We'll spare all the gory details, as he's much better now. He's still weak, and using a walker, but he gets stronger every day. He has trouble getting up from a sitting position, and can't drive yet. But, we now have Home Health services, and he gets PT, OT and a nurse coming to the house. For being home-bound, he's kept pretty busy, and its working well. He gets stronger every day. We hope to have him driving again and fully self-sufficient in a few weeks. We're back in St. Louis today, for a check up. Things went really well. Just before he was discharged on the 19th, he had his 100-day bone marrow biopsy. We just got the results. He has 100% donor marrow (meaning he grafted) AND, more importantly, he has no sign of either the multiple myeloma or the MDS! That's wonderful news. Its as good as anyone could hope for. Doc was very pleased, and we are ecstatic. His lab values were good, too, but he just missed the cutoff for platelets, so we're in the treatment center now waiting for some. We could be here for hours. But, its well worth the wait.

On the home front, we were in St. Louis for the weekend watching the Packers beat the Rams. Logistically, it was a nightmare getting to the stadium, but once we got inside, Guest Services was wonderful. They exchanged 2 of our tickets for the wheelchair section (very near where our other seats were), got Greg a wheelchair, wheeled him to his seat, picked him up after the game, wheeled him out & got him a taxi. Then, after we left our hotel, we sat in traffic for 2 hours in downtown St. Louis trying to get on the freeway. And, we had a 1 hour delay in Rolla. But, it was all worth it to see the Pack beat the Rams.


But, more important than even the Packers (I know, its hard to believe) is that the Spitfire is loaded on a transport trailer and on its way to our front door. They picked it up at Skibby’s house Sunday night. We haven’t heard a delivery time yet, but should be getting it by the end of the week. We’re really excited. Greg has to work really hard on his PT so he can get in and out of it. Right now, I don’t think he’ll have a problem getting in, but there’s no way he can get out. This gives him good incentive to do his exercises.


Thanks to all for the great help you’ve given us over the past few weeks. I hesitate to mention anyone, for fear of leaving someone out, but special thanks to Steg for mowing the lawn (your good deed has not gone unnoticed!), the Brincks and the Coalsons for helping so much with Matthew, and, as always, the Wherley’s and the Altoonians for always being there for us and for listening to me bitch when I need to.


Thanks for the prayers – keep ‘em coming! They’re working.
　
Love,
Greg & Ann

Getting Closer

The scoop I got last night was that today (Wednesday) is going to be the last day of IV antibiotics, and they're going to start him on all oral meds Thursday. If he does well, I might be able to take him home Friday (keep your fingers crossed!). He's getting a little stronger, but is using a walker to get around right now. He also can't get his shoes on -- they put 20 + pounds of water on him in 1 week with all the IV meds. Can we work the word Lassix into a Blues tune?

I'm going up Friday morning, and hopefully will be bringing him home Friday night -- or Saturday at the latest. I'll keep everyone posted as things change.

Thanks for all the prayers. Keep 'em coming!

Another Week

Greg continues to improve, but the docs say he'll be here about one more week. He's still really weak. He can't stand up by himself, although he can shuffle along a little once he's up. All the blood tests are looking OK, although Our Hero did decide to start running a low-grade fever as of last night. They don't have a cause yet (or even a working theory), but no one seems too terribly concerned about it right now. He's been receiving every antibiotic known to man for the last 2 weeks, so he's covered. I'm here for the weekend, but plan to go back home tomorrow. We've been watching football, but Greg managed to sleep through most of the Wisconsin game. It was that kind of game. In an effort to give him incentive to do his exercises to get home, I bought him a get-well present:

Its a 1977 Triumph Spitfire. I bought it off e-bay, and its in Menasha, Wisconsin. The seller offered to drive it to Greg's sister's in Madison. After that, we'll figure out how to get it here. I wanted a red one, but none were available. Not exactly a practical family vehicle, but, what the heck -- he's always wanted one. Its a little more sporty than the mini-van. Needless to say, Eric is pretty excited, too.

Other than that, there's not much to report on the medical front. Just waiting for him to get stronger. This illness really knocked him for a loop. But, he's recovering, which is the most important. I'll update mid-week.

Thanks to all, especially Tom & Julie for dinner Thursday and taking care of Matthew for the weekend. I really don't know what I'd do without you guys!

Love,

Ann & Greg

Improvement

Sorry for the delay. I just haven't had the energy to post over the weekend.

Greg has improved. The bowel obstruction cleared and they took the NG tube out yesterday. He got to have Jello. There's always room for Jello, right? Unfortunately, they don't make pizza flavored. As of this morning, his lungs sound much clearer, and the two blood infections he had going are culturing negative, meaning they appear to be under control. He's really weak right now, and can't get out of bed. They've called in a physical therapy consult to start working with him to get his strength back.

I came home late Sunday to be with the boys, and plan to head back later this week. I'm taking it day by day. Now it seems to be a matter of Greg getting his strength back. I can't see him being discharged until early next week, although he says he's coming home end of the week or over the weekend. I think they're going to want him to be able to walk, first. Just a hunch.

On a lighter note, I did manage to get to the Greek Orthodox Church across the street from the hospital on Saturday. They were having Greek Fest, which consisted of 85% food, 10% gift shop, and 5% music. Lots of big men with hairy arms and lots of facial hair named Nick cooking large chunks of animals over an open fire. The food was spectacular, although I didn't get to eat as much as I would have liked. Did I mention the pastry? Out of this world. I bought the church cookbook, and I'm happy to report that I've read the whole thing, and not one single recipe calls for Jello, Cool Whip or instant pudding mix. I didn't know you could publish a church cookbook without those standard ingredients.

Thanks to all for your support, once again. Special thanks to Steg for mowing the lawn, and to the Brincks for adopting my youngest. Of course, with the red hair, he just blended right in. He had a great time, and I can't thank you enough.

I'll post more when I know something. Until then,

Love,

Greg & Ann

Waiting

I know a lot of you are waiting for updates, but there's not a whole lot to report. We continue to wait for the bowel obstruction to clear. It just a waiting game. They've removed a LOT of yuk from his system through the tube in his nose (I lost count at about 8 liters as of yesterday). The way they explained it to me is that your intestines are constantly moving around, and Greg got a "kink" in his -- like getting a kink in the garden hose. Through rest, fluids and relieving the pressure in his system via the nose thing, they hope his will un-kink. That's as medically accurate as I can get.

He's got a couple of other problems, though, too. He's got pneumonia, and his blood cultures grew 2 bugs. Don't ask me what they were -- I had never heard of them before. However, he's covered with antibiotics, and now they know which ones he specifically needs. He was up all night with a HORRIBLE cough, and is finally resting now, after they gave him some robitussin. The pneumonia and bowel obstruction both appear to be linked to the GVHD. The blood infections are due to a really low white count.


They're still telling me he's pretty sick, but slowly getting better. I don't think I've seen him this sick in a long time. Hopefully the bowel thing will clear in the next day or so. He's starting to feel a little hungry, which is a good sign, although he still can't have anything to eat. I'm hoping he feels well enough to watch Alabama beat Va Tech later today (Sorry, Tom).

Special thanks to the Brincks for keeping Matthew and keeping him busy. I promise he eventually does stop talking -- however, its usually while he's sleeping. I just hope he's not telling you too many family secrets.

Eric seems to be too busy to worry, which is probably good. This is his last weekend of work, and the swim team is in full swing. He had a meet last night, and was pleased with his performance. Hockey should be starting soon.

Thanks to all for the prayers. Once again, they're the best thing you can do at this point. I promise I'll post when something happens, but no news means pretty much no news. Just watching and waiting.......

Love,

Greg & Ann

Aerial View

If its Thursday, it must be St. Louis. Yes, we're back at our home-away-from-home. The Cox oncologist decided that, since he doesn't know squat about BMT transplants, Greg should go to Barnes. I wasn't about to argue. Greg's blood sugars continued to be all over the place yesterday, so, since he was so unstable, they decided to fly him. Some people will do anything for a helicopter ride. Somehow, I think it would have been easier if he'd just gone to Branson and done the one there -- better scenery, too. I think the ride was pretty unventful. The most I could get out of Greg was that he asked the guys, "How long until we take off?" and the reply was, "We've been in the air 40 minutes." After they arrived, they had to "unload" him at Barnes ER, and had to put him on an ambulance to drive him the 2 city blocks over to the BMT unit, even though every building here is connected by tunnels and walkways. Our efficient health-care system.

In addition to the bowel obstruction, which hasn't cleared yet, we now appear to be adding pneumonia (or "rammonia" as Matthew says) to the mix. He had developed a cough over the weekend, and its gotten worse. The chest X-ray yesterday showed "low capacity" which, as I understand it, is an indicator. The one they took at 2 a.m. showed something, too, and when they listen, they can hear fluid. Also, his skin is very brittle, and the straps from the gurney he took his ride on actually cut his skin. I believe all this together points to GVHD, although I haven't yet seen a doctor to confirm this. (Because I was driving, I got here much later than Greg & didn't see the admitting doc. The one this a.m. was a resident.) Our attending physician this month is Dr. DiPersio. Loyal readers will recall that he knows everything (that's what HE says, anyway) and he only seems to come around after dark. This time I'm really going to try to see if he has a reflection in the mirror.

Overall, I think Our Hero is pretty sick this time, but, once again, he's right where he needs to be. They're hanging all the right drugs: anti-virals, antibiotics and anti-FUNGALS(!). (Fungus is evil). He's gotten 2 units of blood (reds were low) and he got 2 units of platelets at Cox. Dr. Vij warned us that stuff like this could happen anytime. MUD transplant patients can take a turn for the worse very quickly, and with little or no warning. But, I can rest better here, just knowing they're in charge. The doctor team is doing rounds right now, and my guess is that today's plan will just be to continue the drugs, and probably run more tests. I probably won't know any more than I do right now for a while. I'll re-post when I do.

Until then, please keep praying. Thanks to you all for all your support.

Love,

Greg & Ann

Back on the Roller Coaster

Well, Greg is back in the hospital -- this time its a bowel obstruction. Although no one has confirmed it, I'm pretty sure its related to the Graft Versus Host Disease (GVHD). One of the main systems it affects is the GI tract. He began feeling pain Sunday night, and things went downhill from there. I finally convinced Mr. Stubborn to come in to the ER after I told him he either got in my car or I was calling an ambulance. Things were complicated by the fact that he's in the process of switching over from the St. John's system to the Cox hospital system. We didn't even have a local oncologist yet. We do now. After spending 5 hours in the ER, they finally admitted him - to orthopedics! Makes sense to them, I guess. Actually we're doing what we do best -- waiting for a bed in the oncology unit. They hope to have one today.

Treatment-wise, they don't want to do any surgery because, as usual, he doesn't have any platelets. They think they can resolve this with an NG (nasal -gastric) tube. For lack of a better explanation, they're sucking all the yuk out through there. Of course, I have yet to see a doctor yet today, and the nurses can only answer so many questions. I'm keeping a list. If this doesn't resolve it, they'll have to transfer him to Barnes. Nothin' like another $3400 ride to St. Louis.

Blood sugar issues have reared their ugly heads again. From the time we got to the ER at 11 a.m., I started telling anyone who would listen that his sugars needed to be checked. Then, we moved to a room at about 6. I tried again. By 10, he was lethargic and confused. I finally pitched a fit, and, sure enough, his B/S was 24! (normal shouldn't go below 70). All night long he was all over the map, and didn't get above 70 until 5:30 this morning. I left about 5, and got back about 8:45. No one had checked his sugars since 5:30. I couldn't get anyone in until 9:30, and, you guessed it, he was back to 24 and completely unresponsive. They gave him another glucose shot (he's had about 4 since last night). Then the tech says he's scheduled to have his sugar checked every 12 hours. Needless to say, I blew a gasket. Long story short: they're checking every 2 hours, and I'm to tell them if I want it checked in between.

At the risk of being sued for libel, I have to say the nursing care here was atrocious overnight. I don't even want to think about what would have happened if I hadn't been here. It took about 30 to 40 minutes to answer a call light. He didn't get his "bedtime" meds until about 4 a.m., it took 5 (!) tries to get the N/G tube down his nose. I could go on & on, but you might as well just wait for the mini-series. Since I've pitched 2 good fits today, the care has improved. Sometimes it does pay to be a bitch!

Bottom line is, Greg feels pretty good, considering. Hopefully the GI issues will clear on their own, and he's not nearly in as much pain as he was yesterday. I think I've finally convinced them here that I want his sugars checked frequently and this problem fixed, and that a blood sugar of 24 is a bad thing. If nothing else, I've convinced them that there's only one way to shut me up.

Thanks to the Per and Vicki and Karrie and Mark for all the help. Matthew is staying with the Brinck's, so he's fairly happy. I just hope we don't have to go to St. L. Eric has pizza money, so all is right with the world.

If I ever get to see an actual doctor, or when there's a change, I'll post more. Until then, thanks for all the thoughts, prayers and good karma.

Love,

Greg & Ann

P.S. I think I'll try to take a nap. That should make the doc show up!

Thank You!!!

Thanks to all who attended our party Saturday. I don't know about you, but I had a great time! Unfortunately, we'll be eating Italian sausage for about the next month. Anyone have any creative recipes you can share?

Special thanks to Kris & Jim, and Julie & Tom for coming early, helping set up, and mixing me that much needed first drink. I'm not breathing out of a paper bag anymore.

And, Honorable mention goes to Bob and Ellen, who DROVE all the way from Eastern Tennessee to be with us. It was great to see you! Thank you so much. It meant the world to Greg and he was really touched that you did that.

We spent yesterday recuperating. Thanks to all for making it such a success!

Love,

Greg, Ann, Eric & Matthew

The Welcome Home Bash!

Help Welcome Greg Home!

We're Having an Open House

Saturday, August 29, 2009

4 to 8 p.m.

Call us for the Address or Directions

(For obvious reasons I'm not posting them here)

There Will the Lots to Eat and Drink

(You Know Us!)

Please Drop By Anytime to

Help Welcome Greg Home,

And Give Us An Opportunity to

Thank You in Person for

All of Your Support

(Please, no gifts)

FREE!!!

From Greg:

It took 10 weeks but I'm finally home. I was checked in as the green flag was dropped at the Indy 500 on Memorial Day and fully expected to be in St. Louis until the end of the Jerry Lewis Telethon (almost made it!). I am weak, tired, and a little unsteady -- but I am now also a European woman. (I guess that explains the water retention). So, while there's still some recovery left, everything seems to be going fine. Both the GVHD (expected and necessary) and the CMV (dangerous and deadly) are under control. The CMV should be gone after my last dose of meds on Tuesday. Its now just a matter of recovery (and a bushel basket of meds). But I'm alive I'm happy and I'm home with my family. Thank you to all for your support.

Love,

Greg

P.S. Watch this site over the next few days for an important announcement regarding a welcome home bash.

Keep Your Fingers Crossed!

We saw Dr. Vij on Friday. Everything is still going well. The labs are stable, for the most part, the CMV and GVHD seem under control, and, aside from tiring easily, Greg feels good. So, Vij said that if everything continues like this for the week, Greg MIGHT be able to come home this weekend!!! He wouldn't commit, but I don't think he would have said so if it weren't very possible. We go again to see him this Friday, and then he'll make the decision. So, keep your fingers (and everything else) crossed. He'll still have to go back about every 10 days to 2 weeks, but that's better than living there full time. Vij stressed that anything can happen. He said he could keep Greg there for 3 months and nothing could happen, or he could send him home tomorrow and the next day a new issue could develop. However, this is good news for now, and that's good enough. I'll post when I know more (probably not until Friday).

Thanks to all for the prayers and support. This is the proof that they are working.

Love,

Greg, Ann, Eric & Matthew

Still Going Well

I just got back from my weekend with Greg, and everything is still going well (knock on wood!). We saw Dr. Vij on Friday, and he's pleased with Greg's progress. His platelets rose from 31 to 35 (all by himself!) and the last ones they gave him weren't even HLA matched. Also, the tests Friday showed that his bone marrow is now 100% his donor's, which means he's completely grafted. The GVHD is still an issue, and they upped some of his meds, but he's improved. His skin is really scaly, but Greg assures me it looked worse last week. Also, the CMV (virus) is still an issue. They put him on the IV meds, which he gives himself, twice a day. He has this bulb about the size of a tennis ball with tubing attached. He hooks it up to his central line IV (it screws in) and puts the ball in his pocket. Over the course of a little more than an hour, his heart acts as a natural IV pump, and the medicine pumps into him through the line, deflating the ball. He can walk around and do normal stuff all the while its being administered. Its really an ingenious thing. I've never seen anything like it.

We had crummy weather all weekend, and couldn't do much, but we ate a lot (Hanging with a guy on steroids isn't doing much for my girlish figure!). The interesting thing is that Greg is still LOSING weight. The pants we bought him two weeks ago are getting loose. But, Vij says thats not abnormal and we shouldn't worry. Kacey and I are getting worried that our own clothes won't fit, though! Kacey seems to be doing OK but is getting a little homesick. I think she's going to try to go home for a long weekend in about 2 weeks, so that should help. Mark, maybe that would be a good time for you to come down? We'll have to talk about that.

That's about all for now. Greg goes back for labs on Tuesday, and I'll post with those results then.

Love,

Greg, Ann, Eric, Matthew and Kacey

Million Dollar Baby

Well, its official! Greg has hit the $1 million mark with his insurance company, which means he's reached the policy limits. According to his coordinator at the insurance company, he's the 4th person she's ever known to have done this. And it only took 6 years, 3 stem cell transplants, 2 life-threatening illnesses, a dozen or so less serious infections and all the miscellaneous stuff that goes along with it. Don't panic though, my insurance just switches over from secondary to primary. The only problem is, he's going to have to switch doctors. He's approved to stay with Barnes through this transplant, then he has to switch to SLU when in St. Louis, and Cox when in Springfield. I'm hoping the Feds switch back to Premier this fall, but if they don't, we'll be looking for a new oncologist in town. I'm open to suggestions.

Greg went for treatment today and turns out he didn't need any. His platelets were 31! And, he hasn't needed red blood cells for well over a month. The CMV (infection) is a little worse, and the doc switched meds (from the $4800 a month one) to an IV he will give to himself through his central line. Yikes! He's at Hope Lodge now waiting for the home health nurse to come and teach him how to do it. He IS a doctor, after all.

The numbers are all looking good. I'm going up for the weekend, and will see Dr. Vij with Greg on Friday morning. I'm hoping he doesn't have much to say.
I'll post more then.

Thanks to all!

Love,

Us.

Steady as He Goes

I had a busy weekend, so once again I apologize for not posting as promised. Saturday Matthew and I worked like Egyptian slaves sorting toys and picking things to get rid of. Sunday, we had a great day at the lake with the Altoonians. Matthew went tubing all by himself and I didn't even have a nervous breakdown! (Although it was close!). Huge thanks to Tom and Julie for a wonderful day. (And, I was right -- Matthew was asleep by the time we got to SDC).

Greg's platelets held at 19 from Tuesday to Friday. They gave him some Friday, but they weren't HLA matched. He'll go again tomorrow for labs, so we'll see if he can hold the non-matched ones. We were pretty happy he held all week. That's a good sign.

The GVHD is a little worse, so Dr. Vij upped the steroids again. His skin rash is a good indicator, and its worse. But, more importantly, his kidneys, liver and lungs can be affected by GVHD, so that's what we're more concerned about. But, Vij is on top of it, and its not nearly time to panic.

The CMV is worse, too. That med was costing $2400 per month (not to us -- we got the first month free and Greg is working on getting it set up so we won't have to pay at all). But, Vij doubled it, so theoretically it would cost $4800 per month. (I did that math all by myself!). Don't pass the hat just yet. Vij said if we can't work out the free drugs, he'll give it IV and that way insurance will HAVE to pay for it. The only drawback to that is its twice a day. But I'm sure Greg will be able to work it out with the drug company to send it free. I'll keep you posted.

That's about all for now. Thanks to all for the prayers. Keep 'em coming!

Us

Its a Game of Inches

Greg continues to do well in St. Louis, and he and Kacey seem to be having a good time. They have a TV now (thanks Kacey!), so that helps.

Not much news to report except on the platelet front. Last Friday when I blogged, we were at clinic, waiting for the blood bank to send some. Greg was at 16. The transfusion cutoff is 20. Turns out that, since he needs the HLA matched, and there's always a shortage of platelets anyway, they didn't have any. They sent him home with instructions to come back Tuesday (or to call if he started bleeding!).

He went back yesterday. His platelets were up to 19. He made some all by himself! Granted, not many, but still, better than dropping. And, they STILL didn't have any to give him. (My guess is that when there's a shortage they save them for people who are at 3 or 4 -- Greg's been there.) Anyway, he'll go back Friday, so it will be interesting to see if he can make any more on his own.

Matthew is still in "quarantine" from dad due to his immunizations, so we're staying home for the weekend. Believe it or not, we have to start getting ready for back to school, which is August 19. Where did the summer go?

I'll post again Friday with the platelet count and any other news. In the meantime, thanks, as usual, for all the prayers and support.

Love,

Ann & Greg

Good News!

Sorry its been almost a week since I last posted, but we've been really limited in finding Internet connections. The other day we were at the clinic, and I would have posted, but by the time I did my work for work, my battery only had 15 minutes left. The first time I DIDN'T lug the power chord along. Go figure.


We are at clinic now, and just left our meeting with Dr. Vij. We got what we consider to be very good news: the results of Greg's last bone marrow biopsy showed 3 percent cancer cells. In medical terms, that's practically none at all. Dr. Vij's exact words were: "That's as good as anyone could expect." For the first time in about 6 to 9 months, he was smiling. We know this is still a day by day process, and anything can happen, but we're very encouraged. He needs platelets today, but that's not unusual. They're the last things to come back. His frequency of needing them has decreased, and they've been holding better. And, he hasn't needed red blood in almost 2 weeks. Loyal Readers will remember that he was needing platelets every other day and red blood about twice a week pre-transplant. While Dr. Vij is very happy with the way things are progressing, he says its still going to be at least a month before Greg can even think about going home. These things are very unpredictable, and he potentially could go downhill quickly, but, he's moving in the right direction, and for now, that's plenty good enough.


The biggest issue this week has been magnesium. His has been very low all week. I'm not sure what magnesium does, but evidently you need more than he has. Its a 2 hour infusion, so it ties up our day. That's 2 hours AFTER the pharmacy sends it up. On Wednesday, it took 3 hours for the pharmacy to send it. We've gotten HLA matched platelets faster than that. But, that's what we do now -- run from pharmacy to pharmacy when on the "outside" and wait for the pharmacy when on the "inside."



I keep forgetting to blog that we finally found out what his blood culture grew during his last hosptalization. Its a virus called "CMV" which can be serious if untreated. But, he's on meds for it now (at a cost of $700 per month!). I'm glad we have good insurance. The meds can cause his blood counts to drop, which is probably why he needs platelets today. Sigh.

The GVHD is still a bit of an issue, but is controlled through steroids. The steroids make the blood sugars go up. Actually, he's on about 18 different meds, half of which to treat his disease, and the other half to treat the side effects from the first half. Just keeping track of them is a full time job.

Greg gets stronger every day. We've been trying to have an outing of some sort each day. Having no TV and no Internet is interesting. We've been shopping for stuff we needed & couldn't find in Springfield, and went to the art museum yesterday. We also had to buy Greg some new clothes. He's lost about 30 pounds, and his pants were literally falling off. He looked like an orphan. But, the steroids are stimulating his appetite some, and we've found some really great restaurants in the area. We've had Italian (of course!), sushi, pizza, Mexican, barbecue, and found some great burger joints and delis. I'm going to need new clothes if we keep this up, but not for the same reason Greg does!

My plan is to go home Sunday, when my niece Kacey gets here. She's going to spend her summer vacation with Uncle Greg at the halfway house -- we can't thank her enough for volunteering. Its a huge sacrifice on her part. But, with Greg feeling stronger, we hope to make this fun for her too. There's plenty to see and do in St. Louis, so they're going to try to make the most of it. I'm looking forward to seeing the boys, as I really miss them. Matthew has been having a wonderful time, though. Kris and the gang have been keeping him busy, and he's been happy. No tearful phone calls (yet!). And Eric is enjoying his independence. He swears he hasn't burned the house down yet.

Thanks to Sally and the Bunco crew for the card. It really brightened our day. I hope to make it to bunco sometime in 2009. Keep your fingers crossed for next month. Thanks again, too, to everyone who's been helping out, especially to the Wherley's and Altoonians, and to all for your thoughts, good wishes and prayers. Based on the news we got today, I'd say they're working overtime!

Love,

Us.

Settling In

Greg got sprung from the hospital late Thursday, and this is the first opportunity I've had to blog. We had to rush to "Nope Lodge" to get there by the 7 p.m. check in deadline, or else we would have been homeless for the night. We practically slid in the door sideways to make it.





We had to beg to get him discharged Thursday. They wanted to keep him another night. But, I knew he was ready to go on a 3 state killing spree if he didn't get out of there. They were really worried about his blood sugars. Whereas his was soooooo low when he passed out and was admitted, the issue now is that they're through the roof -- above 300. Its because of the GVHD and all the steroids. They made him promise to be good, check his sugars 4 times a day, watch what he eats, and take his insulin. And, the doctor called yesterday to check his numbers in case he needed a medication adjustment. He didn't. The steroids are being gradually reduced, and he was much more active than when he was in the hospital. So, while he still needs insulin a couple of times each day, he's in pretty good shape.





We're getting settled in. Our room is really small, but its free so its hard to complain. Food storage is an issue, too. We get a small bin for the refrigerator, and a small locker for non-perishables. But, we're figuring it out. And, we're eating out, too. Had some great Mexican food and NY-style pizza. We're going to the Hill tonight.





We're at the clinic now. Greg needs platelets today, and because of the HLA match, it could take a while for them to get here. But, we have a TV, so that helps. Funny thing -- there's really nothing good on anyway. Maybe we're not missing too much after all.





Matthew is having a great time with the Altoonians. They went to see Ice Age and ate at Doe's. Today they're going to the lake, and tomorrow Matthew moves over to the Wherley's. Eric and Nik tried their hand at cooking yesterday. Paula Deen's Breakfast Pizza. It starts out with a pancake and marinara sauce. I really didn't want to know any more. But, I've been assured the kitchen has been put back together. And, I got a promise that I wouldn't have to eat that recipe at least.



So, for now we are uneventful, which is how we'd like to keep it for a while. Thanks to all for your help. Pam, Matthew and I are cucumber freaks, so when I'm home next week, we'd be glad to help you out. I'll pass on your message to Eric to see if he wants anything. He's been picking some peppers from our garden, which has been a grand experiment. So far, his taste buds don't seem to have been permantently damaged.

We're Outta Here

Its Thursday morning and I'm here in St. Louis. I got here yesterday afternoon.

Greg is doing much better. The doc came in this morning and said the plan is to discharge him to Hope Lodge this afternoon. Here's the medical update:

They did a skin biopsy the other day. It confirms that he does have GVHD, but oncology says its at the level they expect, he should have it at this level to show he's "grafting" and that its nothing they can't handle and nothing they're worried about. They're treating him with steroids, so LOW blood sugar won't be a problem for a while. Now we just have to worry about high blood sugar.

They also did a bone marrow biopsy to check to see the progress of his grafting and the level of MDS and multiple myeloma. Those results won't be in for a day or two.

I mentioned last week that his blood cultures grew "something" but that further lab work was needed to know what. As of this a.m., we still don't know. Evidently its a slow grower. But, they're not worried as he has so many antibiotics on board he's covered for just about anything anyone could come up with.

The rash on his legs is improving. Also, the fluid is coming off, and his slippers fit again.

That's about it on the medical front. I'll be here through next week, as they won't let him stay alone on the "outside." The plan for now is my niece Kacey comes next weekend. We're trying to plan fun things to do when she gets here.

Matthew is at the Altoonians. I know he's having a good time. He got his kindergarten shots on the 7th, and the polio one was a live virus, so we have to find out from the docs how long he has to stay away from dad. I'm hoping its just a few days, as the plan was to bring him up the weekend of the 18th. But, the nurse thinks (although she's not sure) its 14 to 21 days. Eric, as usual, is home with pizzas in the freezer.

After we move to Hope Lodge, we won't have WiFi, so updates next week may be sparse. There's a public library down the street, so I'm planning to check it out for Internet access.

Huge thanks to all. Special mention to Amy for the bread, and to the Jones family for the DVDs. I found them on the door step. They will be very welcome when we enter the land of no TV. Thanks again!

Love,

Us

Diagnosis Du Jour

Its Monday morning and I don't have a lot of time, but I'll try to update.

Saturday's diagnosis was GVHD.
Sunday's diagnosis was definitely NOT congestive heart failure, maybe GVHD.
Still no real working theories on what made him lose consciousness, except probably low blood sugar. Don't know if that was a cause or effect.
Definitely maybe some type of infection contributing to all of this.

He's out of ICU now. They moved him in the middle of the night Saturday night. I'm not kidding.

Sadie and Skibby are leaving today. I'm staying in Springfield for a day or two. I plan to head out Wednesday or so. They're trying to get him discharged by the end of the week. He's still weak but is eating now, and actually stood by the side of the bed for a few seconds yesterday.

Thanks to all for the help over the weekend. I really appreciate it. Special thanks to Pam for the treats, Lori for the groceries, and Russ & Todd for trying to figure out my electricity problem.

Please keep the prayers coming. Seems like we always "need them more than ever."

Love,

Ann

Update

Its Friday night and I'm home for the weekend. Skibby and Sadie are in St. Louis with Greg. I got home about 4.

Our Hero is doing OK. He got off the oxygen today, and they're talking about moving him off of ICU, subject to (as usual) bed availability. (Seems like our lives for past 6 months have revolved around waiting for a bed at Barnes.) But, he's really weak, and still a wee bit confused. I don't blame him. I found ICU disorienting, and I got to leave every once in a while. They say there's a condition called ICU psychosis, and I believe it. I was only gone about an hour, on the road home, and my mind cleared and I was able to think much better. Greg is also eating some, but its hard. The tray they sent up yesterday was inedible. "Chopped steak" they had the nerve to call it. Looked (and tasted) like something Eric hits around on the driveway with his hockey sticks.

The exhaustion is setting in, so I'll make this short. I'll get more details to you over the weekend. I'm still trying to figure out how I'm going to make sure Greg has someone with him at all times in St. Louis, still go to work, and make sure Matthew doesn't completely lose it. I called the duplex lady from last summer today, but she doesn't have any openings in the near future. I got on her list.

Thanks to all, again, but especially to Eric and to Kris. The two of you worked out a great system to keep Matthew fairly happy, and keep things running smoothly. I don't know how I'd get through this all if Eric wasn't such a super kid. I'd like to take all the credit, but we pretty much got him that way. Well, maybe we contributed a little....

I'm off to try to get some sleep (none last night -- Greg had a rough night). More tomorrow.

AK

Baby Steps?

Well, right after I posted yesterday, they came in and said they don't think its pneumonia per se, but rather congestive heart failure -- that's why he's got the fluid on his lungs. Then, this morning they said that his blood cultures came back positive . So, once again, I'm not sure what's really going on. And evidently, neither are they. This means he has an infection of some sort, although they don't exactly know what kind. It can take a few days to grow enough to find out. But, with all the antibiotics they're giving him, he's pretty well covered for everything. They're also putting him on another antibiotic, and a low sodium diet. He's thrilled.



Greg is still in ICU, but seems a little better today. Most of the confusion is gone, and he appears a little stronger. They're going to let him try sitting in a chair later today. We just have to wait until there are enough people free to help, to guard against a fall. He's still pretty weak, and even needs help rolling over in the bed. His platelets continue to be an issue. He was at 12 yesterday, and after they transfused him, he was at 8. This is turning into a pattern. One transfusion puts him up, the next makes him drop. I haven't seen the BMT folks yet today to ask how significant this is, but they told us all along the platelets are the last to come back, and that one of the major reasons he has to hang around town after discharge is because he'll need platelet support for a long time. Dr. Vij stopped by briefly yesterday. He said that this is not GVHD, that the rash is from low platelets. (The little blood vessels close to the surface rupture).

I don't think we're looking at discharge anytime soon. (Greg disagrees. He wants to go home now!). I'm trying to make decisions, but its hard. Skibby is coming tomorrow to stay with Greg so I can go home for the weekend and regroup. I'll be glad to see the boys and get some sleep. I think I've slept about a total of 6 hours since I got here. In other words, everything is normal in that department.

Since I started writing this, they got him up and into a chair. He's eating his pudding (yum!) and feeling pretty good. Its progress, anyway.

Thanks again to all for everything. Keep those prayers coming!

Love,

Ann

P.S. Pam: thanks for the offer. I just don't know what I'm doing yet. I'll let you know. Is there a parade and breakfast Sat. a.m. in the neighborhood? Eric says he hasn't seen anything, so we're not sure if we should decorate Matthew's bike? (and helmet?)

Setback

Greg is back in the hospital, in ICU. I couldn't get ahold of him all day Monday. I got concerned and finally talked the staff at Hope Lodge into unlocking his room to check on him. He was unresponsive so they called the EMTs. They took him to Barnes Emergency and I jumped in the car & got here about 12:30 a.m Tuesday. He was very disoriented and confused. His blood sugar was 20 (100+ is normal). We spent the night in the ER and yesterday morning, he was placed in ICU. Long story short, they think the blood sugar thing was a symptom, not a cause. They're treating him for infection, and he has fluid on the lungs, which they're treating as pneumonia. But, this morning's theory is congestive heart failure as he still has way too much fluid on board. This weekend he could barely get his shoes on. The confusion is getting better, and he's much improved this morning. They're going to do an echocardiogram, and a spinal MRI. Someone from radiology read the CT scan they did yesterday, saw his C1-3 vertebrae, and freaked. They've put him in a cervical collar again. I can't get any answers on that. My theory is that they're seeing the scar tissue from 5 years ago, when his spine had all those tumors. But, they're keeping the collar on now as a precaution. I can't tell you how thrilled he is about that. I'm being rather pushy for someone to tell me that he really needs it. But, nothing so far. They may take it off after the MRI. He's really uncomfortable.





He also has very low platelets (what else is new?) and a terrible skin rash that looks like burns, mostly on his legs, but also on his lower back & a few other places. Also a little GI bleeding. My theory is that all of this, coupled with the pulmonary issues, adds up to Graft-Versus-Host disease. However, no one from oncology has been here yet to see him. Plus, I get the impression that GVHD is diagnosed only after they rule everything else out.





They boys are camping out at home, with Eric taking care of Matthew unless he's at work or school. Then Matthew goes to day care or the Wherely's. This was Eric's idea. He's a great big brother. I just hope it doesn't overwhelm him. Last night they had a pajama party in our room. I guess that means the bed is full of popcorn again.

Speaking of popcorn, I have to wear the HazMat suit all the time I'm in the room (ICU rules). (I'm going to relate this to popcorn -- just bear with me). The gown and gloves are really hot -- especially when I'm trying to sleep. Its also really hard to type with the gloves on. But, I have found one advantage -- cheese popcorn. I had it for dinner last night. When you're done, you just change gloves -- no orange fingers. So I got that going for me.

I'm definitely urban camping now. Hope Lodge made me check Greg out yesterday. Technically, family isn't supposed to stay in ICU, but the nurses took pity on me since I'm homeless. I have my very own recliner, which was really hard to get. I actually managed a few hours of sleep last night, after only about 20 minutes the night before. I'm going to try to find a place to shower at some point -- I think I have to go to the ransplant unit. Hope Lodge says he can come back, but he must have someone with him 24/7 when he does. I guess I'll just sell the boys for medical experiments and quit my job. Does the hospital sell lottery tickets? Actually, we have a few ideas, but its hard to make any plans right now. I have a feeling he's going to be here a while.

I'll post again, after they change their minds about everything they've told me so far. That usually happens around shift change (7 a.m. & p.m.). Until then, huge thanks to everyone for all the prayers, good wishes, mojo, karma, support and help. You're all keeping me just this side of a nervous breakdown. I can't tell you how much I appreciate that.

Love,

Ann & Greg



P.S. I forgot to mention how horribly rude the ER phone staff was to me on Monday night during my drive up here. Wouldn't give me ANY information, practically called me a liar when I said I was Greg's wife, hung up on me once, kept putting me on hold when I was in the middle of a sentence and not coming back the other times, and flat out refused to take any medical history from me. Super ugly and rude. "HIPPA regulations!" I didn't know HIPPA says you have to be a bitch. I'm going to see about how I lodge a complaint. Maybe Greg will get to rename this hospital yet!

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

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

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!

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

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

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

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

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

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

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