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.