We truly have a lot to be thankful for this year. And, this roller coaster ride we can't seem to get off of seems to be on a little bit of an upswing.
Greg's lab work yesterday showed some true improvement. This is still a one-day-at-a-time process, and anything can happen, but it was sure welcome news.
All of his levels were up, including his platetles, which were at 53 (they haven't been in the 50s since August 1!). His hemoglobin (reds) were almost normal (9.9), and his whites were at 4.2 (normal is 5). He was as low as 2.2 on the 18th. So, for right now, everything looks OK, and we are going to enjoy the moment.
We have decided every day is now a holiday. We have to live each day for itself, and enjoy what we have.
This Thanksgiving we truly do give thanks for all our wonderful family and friends whose love and support mean so much to us. Whenever we seem of the verge of a breakdown, and think we can't stand this any longer someone of you senses it and jumps in to pick us up & brush us off. We really couldn't be getting through this without all of you and love you all so much.
We hope you and yours have a safe, happy and overstuffed Thanksgiving. We give thanks for each and every one of you every day.
Have a great holiday!
Love,
Greg, Ann, Eric & Matthew
Wednesday, November 26, 2008
Wednesday, November 19, 2008
Tuesday, November 18 Doctor visit
We went to St. Louis yesterday to see Dr. Vij. Didn't get home 'til after 9 last night. I'll try to fill you all in as best I can, but we didn't get very good news.
Dr. Vij now thinks Greg has two diseases going on in his bone marrow. In addition to the Multiple Myeloma, he believes Greg also has Myelodisplasia (or Myelodysplastic syndromes ). I haven't had a chance to look this up yet, or even to check the spelling, but this is not good.
Basically, in layman's terms, this means his bone marrow has stopped producing cells (whites, reds & platelets). He suspects this is why his blood counts are so low now and it also is probably be why he had so much trouble collecting stem cells last May for his transplant.
There is no practical treatment for this. There are some drugs they can try, but they're only about 30 percent effective, and can make him sicker than he is now. The treatment and the disease itself also further complicate any treatment for his multiple myeloma. This myodisplasia thing could be from previous treatment, and it could be from the disease. Hard to tell
He is at very high risk for bleeing and infection (his ANC -- infection fighting white cells -- is at 100 (1500 is good), and his platelets are at 20 (140 is good)). So, no hanging around kids (yeah, right!), no climbing ladders, and LOTS of hand sanitizer.
The plan is to check his blood levels twice a week for the next 6 weeks or so. See if they go up on their own. They'll transfuse as necessary, but too many platelete transfusions can cause him to start rejecting them. If we can get to the pre-pneumonia levels, it'll be OK, even though thats still low -- just not as low as it is now. Then, on January 9, we go back to see Vij, and they will do another bone marrow biopsy then.
There is one potential "cure" for all this, but we're not real crazy about the odds. They are considering an allogenic stem cell transplant. This is a transplant using donor cells, rather than his own. We're checking to see if the insurance will cover typing his brother and sister to see if they match. However, these are REALLY high risk. There is a 30 percent mortality rate in the first year, and 5 year survival rates are about 10 percent. However, those 10 percent are essentially cured. Its the other 90 percent who don't have it so great.
For those of you asking what you can do, please consider donating blood and platetes. He's going to need them, and the more that are in the system, the better. (I talked a little about this in our last post). Eric tried to give plateletes yesterday at the school blood drive, but his veins are too small. I guess Heroin addict is out for him! He really doesn't like needles all that much anyway.
On the lighter side, I guess Matthew is here for comic relief. After the doctor's visit yesterday, we took him to the Science Center where they have a "Build a Dino" store (affiliated with Build a Bear). He wanted a "plant eater" as he already has two "meat eaters" and they need something to eat (always practical, that one!). So, he settled on a triceratops. They're the one with three horns on the top of their heads. He named it...........Hornee. Hornee went to school today for Show and Tell. I'll probably get a note from the teacher.
I'll post numbers updates as we get them, but I won't be posting daily for right now. Thanks to all for your thoughts & prayers & all your help. We have been blessed with great family and friends and we love you all. I've said it before, but we couldn't get through all of this without you.
Love,
Greg, Ann, Eric & Matthew
Dr. Vij now thinks Greg has two diseases going on in his bone marrow. In addition to the Multiple Myeloma, he believes Greg also has Myelodisplasia (or Myelodysplastic syndromes ). I haven't had a chance to look this up yet, or even to check the spelling, but this is not good.
Basically, in layman's terms, this means his bone marrow has stopped producing cells (whites, reds & platelets). He suspects this is why his blood counts are so low now and it also is probably be why he had so much trouble collecting stem cells last May for his transplant.
There is no practical treatment for this. There are some drugs they can try, but they're only about 30 percent effective, and can make him sicker than he is now. The treatment and the disease itself also further complicate any treatment for his multiple myeloma. This myodisplasia thing could be from previous treatment, and it could be from the disease. Hard to tell
He is at very high risk for bleeing and infection (his ANC -- infection fighting white cells -- is at 100 (1500 is good), and his platelets are at 20 (140 is good)). So, no hanging around kids (yeah, right!), no climbing ladders, and LOTS of hand sanitizer.
The plan is to check his blood levels twice a week for the next 6 weeks or so. See if they go up on their own. They'll transfuse as necessary, but too many platelete transfusions can cause him to start rejecting them. If we can get to the pre-pneumonia levels, it'll be OK, even though thats still low -- just not as low as it is now. Then, on January 9, we go back to see Vij, and they will do another bone marrow biopsy then.
There is one potential "cure" for all this, but we're not real crazy about the odds. They are considering an allogenic stem cell transplant. This is a transplant using donor cells, rather than his own. We're checking to see if the insurance will cover typing his brother and sister to see if they match. However, these are REALLY high risk. There is a 30 percent mortality rate in the first year, and 5 year survival rates are about 10 percent. However, those 10 percent are essentially cured. Its the other 90 percent who don't have it so great.
For those of you asking what you can do, please consider donating blood and platetes. He's going to need them, and the more that are in the system, the better. (I talked a little about this in our last post). Eric tried to give plateletes yesterday at the school blood drive, but his veins are too small. I guess Heroin addict is out for him! He really doesn't like needles all that much anyway.
On the lighter side, I guess Matthew is here for comic relief. After the doctor's visit yesterday, we took him to the Science Center where they have a "Build a Dino" store (affiliated with Build a Bear). He wanted a "plant eater" as he already has two "meat eaters" and they need something to eat (always practical, that one!). So, he settled on a triceratops. They're the one with three horns on the top of their heads. He named it...........Hornee. Hornee went to school today for Show and Tell. I'll probably get a note from the teacher.
I'll post numbers updates as we get them, but I won't be posting daily for right now. Thanks to all for your thoughts & prayers & all your help. We have been blessed with great family and friends and we love you all. I've said it before, but we couldn't get through all of this without you.
Love,
Greg, Ann, Eric & Matthew
Friday, November 14, 2008
Friday Update
Hey,
Sorry I haven't posted in a few days, but nothing much has happened. We got home Tuesday night, about 5:30. Kris delivered Matthew about 6:30 and Eric was home when we got there. It was so great to see the boys! Matthew was full of stories about all of his adventures with the Altoonians and the Wherley's (although he referred to is as staying at Grimsby's house and Riley's house -- those are their dogs!). Thanks to both families for taking such great care of my boys. It really does make a very stressful time so much easier, and we are blessed to have you in our lives.
Matthew had a bit of a bad night Tuesday night. He was fine up until bedtime, but then kind of lost it a little bit. After I tucked him in, he wouldn't let go of my arm, and was crying, but said he didn't know why. It must have been anxiety about me going away again. I ended up sleeping with him (try sleeping in a twin bed with a 42 pound fish out of water!). Not terribly restful, but he felt much better in the morning when he woke up & I was there. I have to remember he's still only 4.
Greg spent Wednesday sleeping (thanks for not calling that day!). He was truly wiped out. He's on oral antibiotics now & feels much better. His color and energy improve daily. He was told to avoid crowds & small children (!), at least until we talk to the doctor next Tuesday. They're little germ factories, you know.
Wednesday night, we had our first family dinner in weeks (Eric is done with swimming, so no more daily practices -- only hockey twice a week. So, we may actually see a little bit of him from time to time (at least when he's hungry!)). It was great being all together again.
Medically, here's the plan: Greg gets his blood drawn today. On Tuesday, we go to St. Louis to see Dr. Vij of the transplant team. Hopefully, we can get some answers as to why his blood counts are not up to normal levels. Unfortunately, we think we already know the answer based upon what was told to us at Barnes. Basically, this is a second transplant & his bone marrow is getting "worn out" for lack of a better phrase. The engrafting may not have been complete. So, these low numbers may be "normal" for him -- meaning, he will continue indefinitely to have low platelets and a low white count, meaning susceptible to bleeding and infection. Something tells me this is not the last time we'll be dealing with "ramonia" or God knows what else. However, we are going to get a plan in place so that the next time this happens, we can skip St. Johns (locals) and skip the $3500 ambulance ride, and to straight to Barnes in St. Louis.
Greg just called & told me that his whites & reds from today's draw are "normal for him" but that his platelets are at 15 (140 is minimum for normal). The cutoff for transfusions is 20, so he was headed for St. John's to get some. I told him to drive carefully on the way there, but that he could drive like a bat out of hell on the way home 'cause he'll have platelets then.
A lot of people have asked what they can do to help. Andy gave me this idea. If you can, donate blood and platelets. Even if you can't earmark them specifically for Greg, any platelets in the system help. As soon as I get caught up at work, I'm going to go sign up. Eric is giving at the blood drive at school next week. I was told that though blood is type specific (Greg is A+, but we already knew that!), platelets can be given between any blood types. But, be warned, I hear platelet donations take longer, particularly the first time. But to anyone who can, a HUGE thanks in advance.
That's about all for now. I'll post again after we see Vij on Tuesday.
Thanks to all!
Love,
Ann & Greg
Sorry I haven't posted in a few days, but nothing much has happened. We got home Tuesday night, about 5:30. Kris delivered Matthew about 6:30 and Eric was home when we got there. It was so great to see the boys! Matthew was full of stories about all of his adventures with the Altoonians and the Wherley's (although he referred to is as staying at Grimsby's house and Riley's house -- those are their dogs!). Thanks to both families for taking such great care of my boys. It really does make a very stressful time so much easier, and we are blessed to have you in our lives.
Matthew had a bit of a bad night Tuesday night. He was fine up until bedtime, but then kind of lost it a little bit. After I tucked him in, he wouldn't let go of my arm, and was crying, but said he didn't know why. It must have been anxiety about me going away again. I ended up sleeping with him (try sleeping in a twin bed with a 42 pound fish out of water!). Not terribly restful, but he felt much better in the morning when he woke up & I was there. I have to remember he's still only 4.
Greg spent Wednesday sleeping (thanks for not calling that day!). He was truly wiped out. He's on oral antibiotics now & feels much better. His color and energy improve daily. He was told to avoid crowds & small children (!), at least until we talk to the doctor next Tuesday. They're little germ factories, you know.
Wednesday night, we had our first family dinner in weeks (Eric is done with swimming, so no more daily practices -- only hockey twice a week. So, we may actually see a little bit of him from time to time (at least when he's hungry!)). It was great being all together again.
Medically, here's the plan: Greg gets his blood drawn today. On Tuesday, we go to St. Louis to see Dr. Vij of the transplant team. Hopefully, we can get some answers as to why his blood counts are not up to normal levels. Unfortunately, we think we already know the answer based upon what was told to us at Barnes. Basically, this is a second transplant & his bone marrow is getting "worn out" for lack of a better phrase. The engrafting may not have been complete. So, these low numbers may be "normal" for him -- meaning, he will continue indefinitely to have low platelets and a low white count, meaning susceptible to bleeding and infection. Something tells me this is not the last time we'll be dealing with "ramonia" or God knows what else. However, we are going to get a plan in place so that the next time this happens, we can skip St. Johns (locals) and skip the $3500 ambulance ride, and to straight to Barnes in St. Louis.
Greg just called & told me that his whites & reds from today's draw are "normal for him" but that his platelets are at 15 (140 is minimum for normal). The cutoff for transfusions is 20, so he was headed for St. John's to get some. I told him to drive carefully on the way there, but that he could drive like a bat out of hell on the way home 'cause he'll have platelets then.
A lot of people have asked what they can do to help. Andy gave me this idea. If you can, donate blood and platelets. Even if you can't earmark them specifically for Greg, any platelets in the system help. As soon as I get caught up at work, I'm going to go sign up. Eric is giving at the blood drive at school next week. I was told that though blood is type specific (Greg is A+, but we already knew that!), platelets can be given between any blood types. But, be warned, I hear platelet donations take longer, particularly the first time. But to anyone who can, a HUGE thanks in advance.
That's about all for now. I'll post again after we see Vij on Tuesday.
Thanks to all!
Love,
Ann & Greg
Wednesday, November 12, 2008
We're Here!
We got home last night. I'm at work. Greg is home sleeping. Will post details later tonight, when I have a chance to sit down & compose something.
Thanks to all!
Love,
Ann
Thanks to all!
Love,
Ann
Tuesday, November 11, 2008
Happy Veteran's Day
Thanks for all the great comments from yesterday. They really are therapeutic for us. We look forward to logging on each day & checking them.
George: You’re welcome. I was able to say the same to my office after they raised the premiums on us in ‘03 – Greg’s diagnosis, "ramonia" and my pregnancy. We try to do our part!
Emily: I’ll see what I can do about the money. However, I have first dibs!
Andy: I’ll keep you in mind, but there better not be a next time.
Lauren: I like your idea about just keeping the ambulance, but I think its against the covenants to park it in my driveway.
Yesterday, Greg’s nurse told us that he was the first patient she had ever had who walked away like that. Then, we learned later in the day that another one had. Evidently, Greg has started a revolution. "Viva Che Gregorio!"
OK, here’s today’s scoop. Dr. Doogie Howser was in this morning & said they’re waiting for one more blood test from yesterday to see if he has a fungus infection (do I need to remind everyone AGAIN of the evils of fungus???). Assuming that comes back negative (we won’t know ‘til early afternoon) they MIGHT spring him today.
Another issue is that the platelets have really bottomed out. He was at 5 (!) last night. That’s almost negative numbers in platelet-speak. They gave him a unit last night, but they don’t draw labs until about noon, so we don’t know if they took or not. I guess we’re still a little confused about this whole blood count thing. We were under the impression that’s the main reason he was sent here, but everyone here seems to shrug it off & say that since he’s on his second transplant, this is probably going to be "normal" for him. Hopefully, we’ll get some clarification before we leave.
Anyway there seems to be a light at the end of this loooooong tunnel, at least for now. I really need to get home to hug my kids.
If they do discharge, I’ll try to post before we leave. But, depending on how busy
they keep us doing discharge stuff, I can’t promise. If anything, we’ll try to get a phone chain going on the way home. Keep your fingers crossed!
Love,
Us
George: You’re welcome. I was able to say the same to my office after they raised the premiums on us in ‘03 – Greg’s diagnosis, "ramonia" and my pregnancy. We try to do our part!
Emily: I’ll see what I can do about the money. However, I have first dibs!
Andy: I’ll keep you in mind, but there better not be a next time.
Lauren: I like your idea about just keeping the ambulance, but I think its against the covenants to park it in my driveway.
Yesterday, Greg’s nurse told us that he was the first patient she had ever had who walked away like that. Then, we learned later in the day that another one had. Evidently, Greg has started a revolution. "Viva Che Gregorio!"
OK, here’s today’s scoop. Dr. Doogie Howser was in this morning & said they’re waiting for one more blood test from yesterday to see if he has a fungus infection (do I need to remind everyone AGAIN of the evils of fungus???). Assuming that comes back negative (we won’t know ‘til early afternoon) they MIGHT spring him today.
Another issue is that the platelets have really bottomed out. He was at 5 (!) last night. That’s almost negative numbers in platelet-speak. They gave him a unit last night, but they don’t draw labs until about noon, so we don’t know if they took or not. I guess we’re still a little confused about this whole blood count thing. We were under the impression that’s the main reason he was sent here, but everyone here seems to shrug it off & say that since he’s on his second transplant, this is probably going to be "normal" for him. Hopefully, we’ll get some clarification before we leave.
Anyway there seems to be a light at the end of this loooooong tunnel, at least for now. I really need to get home to hug my kids.
If they do discharge, I’ll try to post before we leave. But, depending on how busy
they keep us doing discharge stuff, I can’t promise. If anything, we’ll try to get a phone chain going on the way home. Keep your fingers crossed!
Love,
Us
Monday, November 10, 2008
A Man & A Plan
One thing we do know for sure this morning is that Our Hero is definitely in the right place -- these guys know what they're doing. We saw two doctors yesterday, one from the transplant team. He remembers Greg & these guys know how to deal with this (whatever it is).
Yesterday, the first doc came in (once again, one who looked like his mommy had to drive him to work – I must be getting old), and asked Greg, "So, what brought you here to the hospital?" (Shouldn’t HE know???). Without missing a beat, Greg responded, "The ambulance!" Doc responds: "OK, very good sir." Poor guy was humorless. But I guess its good that they hire them for their brains, not their sense of humor.
OK, here’s what I know now (I figure I’m running about 80 percent accurate in what I remember & understand after the docs leave):
Today’s (actually yesterday’s) diagnosis is definitely (maybe?) pneumonia (or "ramonia" as Matthew says). That’s right – we’re back to were we were when we started. They took a chest x-ray within about 20 minutes of his arrival here late Saturday night (they don’t fool around here). They say it shows pneumonia on the right side. However, its not PCP (!), and he’s responding well to the drugs. They also believe his low white count was due to all the meds they were pumping into him in Springfield, so they’ve backed off on a lot of them, concentrating on the ones that fight the pneumonia. When we got in on Saturday, the first doctor looked at his chart & said, "Wow, they really threw the kitchen sink at you!" I’m not sure they knew what to do with him at St. John’s. Oh, and the rash is MUCH worse, covering his whole body. That’s from the meds too. But it doesn’t itch too much, and he has Benadryl as needed if he wants it. Don’t go a hospital – It’ll just make you sick.
No one has officially said a thing about how long we’re supposed to be here, but Skibby is guessing that, if they confirm pneumonia today (they’re also going to run some other tests, but I forgot which ones), and if he keeps responding to the meds, they could actually send him home on oral antibiotics mid to late week. PLEASE keep your fingers crossed & pray that’s the case! Greg is telling people he’ll be back to work by the end of the week. I keep telling him he’s nuts. Even after he gets home, he’ll have some recovery time. But it shows he feels pretty good, and that’s important.
Oh, and we’re on C-Dif precautions once again. Our Loyal Readers will remember, from a previous espisode last season, how obsessed everyone is here with bladder & bowel habits. I think they’re even charting mine! Because he had some intestinal "looseness" (Gee, ya think it could be all the antibiotics?), and because he had C-Dif five years ago, everyone gets to wear the Haz-Mat suits whenever they come in & I have to wear one whenever I leave the room – even to go to the bathroom or to get a drink of water. Sigh. No one believes me when I tell them he doesn’t have it. I am a doctor after all. Maybe if I go sleep at a Holiday Inn Express?
Speaking of sleeping, I am definitely urban camping again. I ‘m staying in the room, and all I have is this chair that kind of folds out into a bed. Its like sleeping on a 2 foot by 5 foot piece of plywood. Its probably OK anyway, as there’s some rule about not allowing people to sleep around here anyway. I can’t use Greg’s bathroom or shower, for contamination purposes, and there’s no "family shower" on this floor. I went down to the transplant unit & got to wait in line. No towels, no soap. I grabbed some towels from a passing cart & used shampoo all over. It’s the little things.....Then I went down to the cafeteria & spent $6 on two Diet Pepsis and a bagel (cream cheese extra, of course).
But, the important thing is we have a plan, and he feels pretty good. He just got back from CT with a Cheshire Cat grin on his face. Seems he was waiting downstairs for transport, and there were a whole bunch of people waiting, so our patient Patient got impatient (imagine that!) and just got up & walked back to his room. At least he was wearing a mask. So, now there’s an abandoned wheel chair on the 3rd floor, and some poor slob who’s sole responsibility it is to get Greg back up here is wandering around looking for him. Greg is very proud of himself. I buzzed the nurse’s station.
Not much more for now. Yet another doctor just came in (his mommy had to drive him to work, too), and said the CT scan confirms "ramonia" and they are going to have a meeting & decide what to do with him. I’m sure there will be plenty of suggestions!
Thanks for reading!
Love,
Us
P.S. Oh, and in case you were wondering, the ambulance ride costs $3500. Sure hope Greg's insurance company still likes him!
Sunday, November 9, 2008
We're here -- just not sure why...
Well, the good news is, Greg got to watch the Alabama/LSU game. All of it. Including overtime. At the hospital. In Springfield. In true hurry up & wait fashion (we’re getting soooooo good at that!), we were told around noon he had to go to St. Louis (after we had been told he wasn’t going, after we had been told he was), and then a flurry of activity started: Got to get one last dose of IV antibiotics going! Got to call for an ambulance for transport! Have to pack! Have to get the charts in order to send! Yadda, yadda, yadda. "We’ll tell you just as soon as we know when the ambulance will get here!" Then we sat. And sat. And sat. Thank God for football. Finally, at 5:15, they told us the ambulance would be there at 6:15. Hooray! Then, at 6:15 Alabama/LSU went into overtime. First time we were happy that things weren’t running on time. The ambulance guys didn’t get there until 6:45. It really was a great game, but had I known I was going to sit there all day, I would have spent the day with Eric & Matthew instead. Sigh.
Anyway, I digress. The ride here was pretty uneventful. I drove up separately, left before the ambulance, & got here after. I thought I had a lead foot. I guess there aren’t many troopers who’ll stop an ambulance for speeding. Greg had a great time with the boys on the ambulance, but he was a little disappointed they didn’t get to use the siren or the lights. They also wouldn’t let him drive. Bummer. It’s a good thing Greg is feeling well, though. The ambulance guys didn’t know where to go once they got here. Greg had to direct them. Unfortunately, we both could give tours of this place.
We got into the room a little after 10. He’s on the floor above the transplant floor, which was all new, shiny & modern. This floor hasn’t been remodeled since 1958. I expected all the nurses to be wearing capes & funny little hats. And the walls are mint green. Pretty nauseating, actually. By the time we saw the doctor & got settled, it was well after midnight. Then, the night-time round of IV meds starts. No rest for the weary. The good news is that they don’t start the morning stuff until about 5:30, so we got a solid hour or two of sleep. So important when you’re sick.
I find myself a little confused as to why we’re here. I thought it was because of the low blood counts (he really doesn’t have any red cells, white cells or platelets), but the doctor last night didn’t seem terribly concerned about that (!). So, I don’t know if he was sent here because of the counts, the infection, or just because Springfield didn’t know what to do with him anymore. I’m waiting for the doc to come in on morning rounds to find out. Maybe I’ll know before I finish writing this. But, it doesn’t really matter. Whatever they tell me now will be different by shift change.
Greg’s mom & sister are on their way here for an overnight visit. We just hope to get some sleep today. Greg’s had a total of four 5-minute naps so far. As soon as he falls asleep, someone comes in to do something.
Eric just called to check in. He told us Nik Brinck swam a time to qualify him for All-American yesterday. Congrats Nik! Eric is taking a well-deserved day off, as his last swim meet was yesterday. Although he didn’t make it to the State meet, Eric is now the fastest 200 IM swimmer on his team. Go Eric! Not bad for just having taken up swimming this year. He still has hockey, but at least its not every day.
Matthew seems to be having a good time. He has interrogated the Altoonians on their political affiliation, and appears to have satisfied himself that they voted properly in the recent election. Thank goodness they passed the test! That kid is amazing. I just can’t figure out where he gets it from! I hear he’s going to the zoo today. Hope its not too cold (and yes, I KNOW its colder in Wisconsin!)
Well, I guess I’ll go ahead and post this now, as it doesn’t look like we’re going to see the doc before noon. They are keeping us busy. We just feel like we’re running in place. Its very time-consuming to be even somewhat sick in a hospital. The whole reason for coming in in the first place was because of the fever. Well, the fever is gone & now he has a rash all over, dangerously low blood counts and fat ankles (yes, as our loyal readers will remember, we’re on the saline/lassix Merry-Go-Round once again!).
I’ll try to post again later, after they change their minds about everything they’ve told us up until now.
Thanks for everything. Keep the prayers coming.
Love,
Us
P.S. Oh, and Ian, the next time we’re sitting around the office trying to decide where to go for lunch, and you get that look in your eye, and suggest, with that little hopeful lilt in your voice, "How about St. John’s Hospital cafeteria?" I’m going to smack you silly.
Have a nice day!
Anyway, I digress. The ride here was pretty uneventful. I drove up separately, left before the ambulance, & got here after. I thought I had a lead foot. I guess there aren’t many troopers who’ll stop an ambulance for speeding. Greg had a great time with the boys on the ambulance, but he was a little disappointed they didn’t get to use the siren or the lights. They also wouldn’t let him drive. Bummer. It’s a good thing Greg is feeling well, though. The ambulance guys didn’t know where to go once they got here. Greg had to direct them. Unfortunately, we both could give tours of this place.
We got into the room a little after 10. He’s on the floor above the transplant floor, which was all new, shiny & modern. This floor hasn’t been remodeled since 1958. I expected all the nurses to be wearing capes & funny little hats. And the walls are mint green. Pretty nauseating, actually. By the time we saw the doctor & got settled, it was well after midnight. Then, the night-time round of IV meds starts. No rest for the weary. The good news is that they don’t start the morning stuff until about 5:30, so we got a solid hour or two of sleep. So important when you’re sick.
I find myself a little confused as to why we’re here. I thought it was because of the low blood counts (he really doesn’t have any red cells, white cells or platelets), but the doctor last night didn’t seem terribly concerned about that (!). So, I don’t know if he was sent here because of the counts, the infection, or just because Springfield didn’t know what to do with him anymore. I’m waiting for the doc to come in on morning rounds to find out. Maybe I’ll know before I finish writing this. But, it doesn’t really matter. Whatever they tell me now will be different by shift change.
Greg’s mom & sister are on their way here for an overnight visit. We just hope to get some sleep today. Greg’s had a total of four 5-minute naps so far. As soon as he falls asleep, someone comes in to do something.
Eric just called to check in. He told us Nik Brinck swam a time to qualify him for All-American yesterday. Congrats Nik! Eric is taking a well-deserved day off, as his last swim meet was yesterday. Although he didn’t make it to the State meet, Eric is now the fastest 200 IM swimmer on his team. Go Eric! Not bad for just having taken up swimming this year. He still has hockey, but at least its not every day.
Matthew seems to be having a good time. He has interrogated the Altoonians on their political affiliation, and appears to have satisfied himself that they voted properly in the recent election. Thank goodness they passed the test! That kid is amazing. I just can’t figure out where he gets it from! I hear he’s going to the zoo today. Hope its not too cold (and yes, I KNOW its colder in Wisconsin!)
Well, I guess I’ll go ahead and post this now, as it doesn’t look like we’re going to see the doc before noon. They are keeping us busy. We just feel like we’re running in place. Its very time-consuming to be even somewhat sick in a hospital. The whole reason for coming in in the first place was because of the fever. Well, the fever is gone & now he has a rash all over, dangerously low blood counts and fat ankles (yes, as our loyal readers will remember, we’re on the saline/lassix Merry-Go-Round once again!).
I’ll try to post again later, after they change their minds about everything they’ve told us up until now.
Thanks for everything. Keep the prayers coming.
Love,
Us
P.S. Oh, and Ian, the next time we’re sitting around the office trying to decide where to go for lunch, and you get that look in your eye, and suggest, with that little hopeful lilt in your voice, "How about St. John’s Hospital cafeteria?" I’m going to smack you silly.
Have a nice day!
Saturday, November 8, 2008
Staying Put?
UPDATE 1:00 p.m.:
Well, I guess my last post just jinxed everything. The nurse came in about 15 minutes ago & said we ARE going to St. Louis after all, and he cannot go by private vehicle. They're arranging an ambulance as we speak. However, don't freak. He still feels fine -- almost completely asymptomatic. He's going to ask the guys if he can drive. As you can well imagine, I had to once again peel him off the ceiling when he got the news (and not just because they'll be transporting him during the Alabama / LSU game). But, the positive thing is that he'll have Dr. Vij in the driver's seat (figuratively speaking -- I don't think Vij is coming down here to pick him up personally). The infectious disease doc said that if it is CMV, which they're still not sure of, it could take weeks to clear up. However, not necessarily all that time in the hospital.
I'll keep you posted. Now, back to our regularly scheduled programming.
----------------------------------
Well, as usual, we still don't know quite what's going on, but I'll give it a shot. (For "Our Story So Far" read yesterday's post).
Dr. Raju just left. She said that she still hasn't talked directly to Dr. Vij, but that she has spoken to his nurse. They were ready to take him, but they didn't have a bed. She hasn't heard from Barnes since yesterday. However, Greg's fever is gone, although his counts still are dropping. He came in with an ANC of 1200. It dropped to 700, then 300. So, he's neutropenic again. His white count is 1.3. That's definitely not good. (Oh, and he's developed a rash, which they can't figure out, either). But, since his fever is down, Dr. Raju is inclined to keep him here. However, IF Barnes calls & really wants him, she'll send him. How's that for definite? I guess right this minute, if I were a betting person, I would bet that we're staying here, at least for now. But, who knows? That could change within the hour as things go around here....
But, we still don't know why his counts keep dropping. Could be a virus called "CMV," could be from all the antibiotics, anti virals, anti fungals and anti everything else they're pumping into him. Could be something else. Again, no one knows. This is all very frustrating. Current plan is to stay here & hope his counts improve on their own. If they don't, they'll do a bone marrow biopsy on Monday (NOTHING happens on the weekends around here). While I have mixed feelings about staying here, at least they work on the weekends at Barnes. Even Raju acknowledged that we would get much quicker test results in St. Louis. But, we are not driving this bus, she is. So, we sit in the back & wait for people to tell us where to stand & what to do.
We're both stir crazy, cranky, & a little punch-drunk, but hanging in there. After this morning's rounds of anti-whatever, they promised to unhook him for a little while so he can put a mask on & take a walk around the unit.
So, thanks for reading. Will post more when I don't know anything again.
Later,
Us
Well, I guess my last post just jinxed everything. The nurse came in about 15 minutes ago & said we ARE going to St. Louis after all, and he cannot go by private vehicle. They're arranging an ambulance as we speak. However, don't freak. He still feels fine -- almost completely asymptomatic. He's going to ask the guys if he can drive. As you can well imagine, I had to once again peel him off the ceiling when he got the news (and not just because they'll be transporting him during the Alabama / LSU game). But, the positive thing is that he'll have Dr. Vij in the driver's seat (figuratively speaking -- I don't think Vij is coming down here to pick him up personally). The infectious disease doc said that if it is CMV, which they're still not sure of, it could take weeks to clear up. However, not necessarily all that time in the hospital.
I'll keep you posted. Now, back to our regularly scheduled programming.
----------------------------------
Well, as usual, we still don't know quite what's going on, but I'll give it a shot. (For "Our Story So Far" read yesterday's post).
Dr. Raju just left. She said that she still hasn't talked directly to Dr. Vij, but that she has spoken to his nurse. They were ready to take him, but they didn't have a bed. She hasn't heard from Barnes since yesterday. However, Greg's fever is gone, although his counts still are dropping. He came in with an ANC of 1200. It dropped to 700, then 300. So, he's neutropenic again. His white count is 1.3. That's definitely not good. (Oh, and he's developed a rash, which they can't figure out, either). But, since his fever is down, Dr. Raju is inclined to keep him here. However, IF Barnes calls & really wants him, she'll send him. How's that for definite? I guess right this minute, if I were a betting person, I would bet that we're staying here, at least for now. But, who knows? That could change within the hour as things go around here....
But, we still don't know why his counts keep dropping. Could be a virus called "CMV," could be from all the antibiotics, anti virals, anti fungals and anti everything else they're pumping into him. Could be something else. Again, no one knows. This is all very frustrating. Current plan is to stay here & hope his counts improve on their own. If they don't, they'll do a bone marrow biopsy on Monday (NOTHING happens on the weekends around here). While I have mixed feelings about staying here, at least they work on the weekends at Barnes. Even Raju acknowledged that we would get much quicker test results in St. Louis. But, we are not driving this bus, she is. So, we sit in the back & wait for people to tell us where to stand & what to do.
We're both stir crazy, cranky, & a little punch-drunk, but hanging in there. After this morning's rounds of anti-whatever, they promised to unhook him for a little while so he can put a mask on & take a walk around the unit.
So, thanks for reading. Will post more when I don't know anything again.
Later,
Us
Friday, November 7, 2008
Deja Vu All Over Again
Well, when I signed off in July, I really didn't think we'd all be getting together again so soon. For those of you who haven't necessarily been in the "loop" for the past few days, let me get you caught up. Besides, this serves as a record for me, too. I'll try to remember the details as best I can:
On Monday, (11/3), Greg called me about 2 and said he wasn't feeling very well. We thought he was just a little tired, as he had painted the kitchen ceiling on Sunday. He called again at 3 & said we had to head home (we had car-pooled), so we left & when we got home, he was running a fever. We continued to monitor him, and at 3 a.m. Tuesday he hit 103. I knew from past experience that it was no use calling the "on call" doctor (when he had pheumonia on 2003, the on call doc told us to take Tylenol. Note: Tylenol doesn't work so great for pheumonia). So I went to vote at 6 and called Dr. Raju (his oncologist) at 8:30, when they opened, expecting her to tell him to go to hospital admitting right away. At about 9:30, the nurse called me back & said they'd called in a broad-spectrum antibiotic & she would see him at his scheduled appointment on Thursday(!). I called Greg's sister, Skibby, & apprised her of the situation. She was very alarmed & said he should go to the ER immediately. Greg was more inclined to follow the doctor's advice, so he sent me on to work. I wasn't comfortable with the situation, so called Dr. Vij's office in St. Louis & left a voice mail for his nurse. She called me back within 10 minutes & told me to get him to the ER immediately, and that waiting until Thursday was completely unacceptable. This convinced Greg, so I arranged child care for Matthew (because I KNEW the ER wouldn't finish with us before 5, when daycare closed) & we got to the ER at about 1:30.
The triage nurse asked what the problem was. I said, "He has multiple myeloma, he's 130 days post stem cell transplant, he has a history of PCP pneumonia and he's running a fever of 103." So, of course, she wrote down on the paper: "fever." Just like the other 137 other people in the ER who had gotten there before us.
Luckily, a friend of ours is the education coordinator RN on the oncology floor, so we called her & she came down to the ER to peel us off the ceiling and reassure us. (Thanks Deb!) They took his temp and a chest X-ray, all of which took about 5 hours. (I really think I could've done it quicker--but what do I know?) and the ER doc couldn't figure out why we came in through the ER. We explained the local doc thought this could wait 48 hours, but his transplant doc said to get in right away. The ER doc said the X-ray showed pheumonia. We figured this was no surprise, as he was presenting the same way he had in 2003. So, they decide to admit him. We finally got to a room about 7:30 that night. The Brincks had Matthew & took him to swimming & Mickey D's, so he was happy. (Thanks Per & Vicki!). Eric took him after that & got him to bed.
Wednesday was a rough day for Greg. He was running high fevers & had terrible chills all day. As we all know, there's no rest in a hospital, as they were hanging antibiotics all day, drawing blood, poking & prodding. He's in an isolation room, so at least its private. But, they said that while it is pheumonia, its not PCP pheumonia (90% of people with PCP don't survive), & he appeared to be responding to the antibiotics, so if he could remain fever free for 24 hours, he could go home. They assured me this would not be a repeat of 2003, with a month in ICU & a close relationship with a ventilator.
I called any family & friends whe hadn't notified on Tuesday. When I called George Connor, he told me he didn't want me to call him anymore, as I never have good news! However, he and Mary brought me chili, hot cornbread & brownies still warm from the oven on Wednesday night. Some people will do anything for warm brownies!
Anyway, (this post is getting LOOOOOONG), he felt much better Thursday. Hardly any fever (just a little in the evening) better color and energy & he even ate something that day (but I didn't bring him any of the brownies--I'm kind of a b!tch that way). So, I had visions of bringing him home today. Not to be, however. (Either they like him, or he has VERY good insurance!)
Late yesteray afternoon, they brought in Dr. Sistrunk (I didn't make that name up), who specializes in infectious diseases. He asked at 34,297 questions, all of which Greg answered negative. He was stumped. He did say that, after 48 hours, someone figured it might be a good idea to have a radiologist look at the X-ray, and he/she said that its NOT pneumonia (or "ramonia" as Matthew says). So, for 48 hours they were treating him for something he doesn't have. Sistrunk says he might have a bone marrow infection, or something else. He says in passing we might have to go to St. Louis. I immediately start to breathe out of a paper bag & ask when this decision might be made. He says in the morning (Friday).
Greg & I dismiss what he says, & continue to fantisize about bringing him home, because Greg is feeling better all the time. This morning, Dr. Raju comes in & says she's got a call in to St. Louis, but hasn't heard back, & its likely we'll have to go. She just can't decide if Greg should go by regular ambulance or air. Time to peel Greg off the ceiling again! I'm not there, as I can't get the hospital before 8:15 or so, 'cause I have to take Matthew to school. Greg does manage to convince her that I can drive him to Barnes.
Anyway, all this time, no one is telling us why. All we know is Greg's fevers are better, he feels better, and they still want to send us to St. Louis. FINALLY, we find out that its because his blood counts have continued to drop since they admitted him (why would we need this information? We're only the patient). They've given him a total of 4 units of blood and a unit of platelets (this is a LOT), and his reds, whites & platelets continue to drop. (Transfusions are supposed to last 120 days). So, now we're a little concerned. Why no one could tell us this earlier is a mystery. However, I've decided that its not time to panic, that they'll tell me when it is, and that I really don't have the time or energy to panic right now anyway.
Anyway, to try to wrap this up, (for anyone who's still reading) I spent 5 hours today packing, getting the bills paid, getting the house in order & arranging child care because we were led to believe we were going to St. Louis by about 4 p.m. today. Its now 10:30 p.m., no one has told us a thing, I'm at home, Matthew and Eric are at the Altoonians (having a great time, I might add!), and we know less than we knew this morning. Apparently, Dr. Vij has to give his go ahead for us to go, then they have to have a bed. We assume Vij wants him, but we don't even know that for sure. The car is packed & ready to go, but I figured I might as well come home & sleep in my bed one more night & shower in my shower one more morning before its back to urban camping in the hospital.
There's tons more I could write, but I'm sleepy & I'm sure you are now, too (if you're even still reading). I'll update again tomorrow if I can (I can't seem to log into the WiFi at St. John's). Hopefully, I'll know more, but then again, the way things are going, all of this will probably change by then.
Thanks for listening. Thanks too, to Anna & Daniel for taking care of Matthew Tuesday afternoon, Per & Vicki, Tom & Julie, Kris & Jim, Skibby, Deb, Debbie, Judy, Sadie & Tom, everyone at my office (especially David for taking over my trial at a moment's notice) and everyone else for your love, prayers & support. A huge thanks, as always, to Eric. I know I say it every time, but we really couldn't be getting through all of this without you.
Love,
Greg & Ann
On Monday, (11/3), Greg called me about 2 and said he wasn't feeling very well. We thought he was just a little tired, as he had painted the kitchen ceiling on Sunday. He called again at 3 & said we had to head home (we had car-pooled), so we left & when we got home, he was running a fever. We continued to monitor him, and at 3 a.m. Tuesday he hit 103. I knew from past experience that it was no use calling the "on call" doctor (when he had pheumonia on 2003, the on call doc told us to take Tylenol. Note: Tylenol doesn't work so great for pheumonia). So I went to vote at 6 and called Dr. Raju (his oncologist) at 8:30, when they opened, expecting her to tell him to go to hospital admitting right away. At about 9:30, the nurse called me back & said they'd called in a broad-spectrum antibiotic & she would see him at his scheduled appointment on Thursday(!). I called Greg's sister, Skibby, & apprised her of the situation. She was very alarmed & said he should go to the ER immediately. Greg was more inclined to follow the doctor's advice, so he sent me on to work. I wasn't comfortable with the situation, so called Dr. Vij's office in St. Louis & left a voice mail for his nurse. She called me back within 10 minutes & told me to get him to the ER immediately, and that waiting until Thursday was completely unacceptable. This convinced Greg, so I arranged child care for Matthew (because I KNEW the ER wouldn't finish with us before 5, when daycare closed) & we got to the ER at about 1:30.
The triage nurse asked what the problem was. I said, "He has multiple myeloma, he's 130 days post stem cell transplant, he has a history of PCP pneumonia and he's running a fever of 103." So, of course, she wrote down on the paper: "fever." Just like the other 137 other people in the ER who had gotten there before us.
Luckily, a friend of ours is the education coordinator RN on the oncology floor, so we called her & she came down to the ER to peel us off the ceiling and reassure us. (Thanks Deb!) They took his temp and a chest X-ray, all of which took about 5 hours. (I really think I could've done it quicker--but what do I know?) and the ER doc couldn't figure out why we came in through the ER. We explained the local doc thought this could wait 48 hours, but his transplant doc said to get in right away. The ER doc said the X-ray showed pheumonia. We figured this was no surprise, as he was presenting the same way he had in 2003. So, they decide to admit him. We finally got to a room about 7:30 that night. The Brincks had Matthew & took him to swimming & Mickey D's, so he was happy. (Thanks Per & Vicki!). Eric took him after that & got him to bed.
Wednesday was a rough day for Greg. He was running high fevers & had terrible chills all day. As we all know, there's no rest in a hospital, as they were hanging antibiotics all day, drawing blood, poking & prodding. He's in an isolation room, so at least its private. But, they said that while it is pheumonia, its not PCP pheumonia (90% of people with PCP don't survive), & he appeared to be responding to the antibiotics, so if he could remain fever free for 24 hours, he could go home. They assured me this would not be a repeat of 2003, with a month in ICU & a close relationship with a ventilator.
I called any family & friends whe hadn't notified on Tuesday. When I called George Connor, he told me he didn't want me to call him anymore, as I never have good news! However, he and Mary brought me chili, hot cornbread & brownies still warm from the oven on Wednesday night. Some people will do anything for warm brownies!
Anyway, (this post is getting LOOOOOONG), he felt much better Thursday. Hardly any fever (just a little in the evening) better color and energy & he even ate something that day (but I didn't bring him any of the brownies--I'm kind of a b!tch that way). So, I had visions of bringing him home today. Not to be, however. (Either they like him, or he has VERY good insurance!)
Late yesteray afternoon, they brought in Dr. Sistrunk (I didn't make that name up), who specializes in infectious diseases. He asked at 34,297 questions, all of which Greg answered negative. He was stumped. He did say that, after 48 hours, someone figured it might be a good idea to have a radiologist look at the X-ray, and he/she said that its NOT pneumonia (or "ramonia" as Matthew says). So, for 48 hours they were treating him for something he doesn't have. Sistrunk says he might have a bone marrow infection, or something else. He says in passing we might have to go to St. Louis. I immediately start to breathe out of a paper bag & ask when this decision might be made. He says in the morning (Friday).
Greg & I dismiss what he says, & continue to fantisize about bringing him home, because Greg is feeling better all the time. This morning, Dr. Raju comes in & says she's got a call in to St. Louis, but hasn't heard back, & its likely we'll have to go. She just can't decide if Greg should go by regular ambulance or air. Time to peel Greg off the ceiling again! I'm not there, as I can't get the hospital before 8:15 or so, 'cause I have to take Matthew to school. Greg does manage to convince her that I can drive him to Barnes.
Anyway, all this time, no one is telling us why. All we know is Greg's fevers are better, he feels better, and they still want to send us to St. Louis. FINALLY, we find out that its because his blood counts have continued to drop since they admitted him (why would we need this information? We're only the patient). They've given him a total of 4 units of blood and a unit of platelets (this is a LOT), and his reds, whites & platelets continue to drop. (Transfusions are supposed to last 120 days). So, now we're a little concerned. Why no one could tell us this earlier is a mystery. However, I've decided that its not time to panic, that they'll tell me when it is, and that I really don't have the time or energy to panic right now anyway.
Anyway, to try to wrap this up, (for anyone who's still reading) I spent 5 hours today packing, getting the bills paid, getting the house in order & arranging child care because we were led to believe we were going to St. Louis by about 4 p.m. today. Its now 10:30 p.m., no one has told us a thing, I'm at home, Matthew and Eric are at the Altoonians (having a great time, I might add!), and we know less than we knew this morning. Apparently, Dr. Vij has to give his go ahead for us to go, then they have to have a bed. We assume Vij wants him, but we don't even know that for sure. The car is packed & ready to go, but I figured I might as well come home & sleep in my bed one more night & shower in my shower one more morning before its back to urban camping in the hospital.
There's tons more I could write, but I'm sleepy & I'm sure you are now, too (if you're even still reading). I'll update again tomorrow if I can (I can't seem to log into the WiFi at St. John's). Hopefully, I'll know more, but then again, the way things are going, all of this will probably change by then.
Thanks for listening. Thanks too, to Anna & Daniel for taking care of Matthew Tuesday afternoon, Per & Vicki, Tom & Julie, Kris & Jim, Skibby, Deb, Debbie, Judy, Sadie & Tom, everyone at my office (especially David for taking over my trial at a moment's notice) and everyone else for your love, prayers & support. A huge thanks, as always, to Eric. I know I say it every time, but we really couldn't be getting through all of this without you.
Love,
Greg & Ann
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