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