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.
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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
Tuesday, October 7, 2008
100-mile checkup
We finally got the results of Greg's biopsy & skeletal survey taken 100 days post-transplant (Friday, September 26).
First, the skeletal survey (full-body x-ray to see if there are any new tumors) showed "no significant change" from the last one. That's good.
The biopsy showed 18 percent cancer cells in the bone marrow. This is enough to classify him as "partial remission." Just to put it in perspective: prior to his first transplant, he had 90 percent cancer cells -- the post-transplant biopsy showed 17 percent cancer. Prior to this most recent transplant, he had about 45 percent cancer cells. I guess this number is pretty good, but we were hoping for a little better. However, we must remember that bone marrow biopsies are a bit "hit or miss." In other words, you can take three samples on the same day in the same hip, and get 3 different numbers.
The not-so-great news is that his lab numbers on 9/26 weren't that great. All his counts (red, white, platelete) were down from the same time last transplant. His ANC (the infection-fighting white cells) was only 500. (Remember, he needed 1500 to get out of the hospital.) Doctor wasn't immediately alarmed by this, but said its probably an indication that his bone marrow is beginning to "wear out." Future treatment options could be compromised by this, but its all kind of academic at this point. They're going to put him on a couple of meds (injections) that are supposed to help his bone marrow "perk up" (for lack of a medical term). Let's hope they work. The FDA says they can no longer give him growth factor (for low ANC) unless he's actively receiving treatment (which he's not at this time). So, infection precautions are again the order of the day.
For now, we will continue to try to be optimistic. Greg feels good, and that's very important. I will post future updates as they develop. In the meantime, thanks always for your love & support. They really do mean the world to us!
Love,
Us
First, the skeletal survey (full-body x-ray to see if there are any new tumors) showed "no significant change" from the last one. That's good.
The biopsy showed 18 percent cancer cells in the bone marrow. This is enough to classify him as "partial remission." Just to put it in perspective: prior to his first transplant, he had 90 percent cancer cells -- the post-transplant biopsy showed 17 percent cancer. Prior to this most recent transplant, he had about 45 percent cancer cells. I guess this number is pretty good, but we were hoping for a little better. However, we must remember that bone marrow biopsies are a bit "hit or miss." In other words, you can take three samples on the same day in the same hip, and get 3 different numbers.
The not-so-great news is that his lab numbers on 9/26 weren't that great. All his counts (red, white, platelete) were down from the same time last transplant. His ANC (the infection-fighting white cells) was only 500. (Remember, he needed 1500 to get out of the hospital.) Doctor wasn't immediately alarmed by this, but said its probably an indication that his bone marrow is beginning to "wear out." Future treatment options could be compromised by this, but its all kind of academic at this point. They're going to put him on a couple of meds (injections) that are supposed to help his bone marrow "perk up" (for lack of a medical term). Let's hope they work. The FDA says they can no longer give him growth factor (for low ANC) unless he's actively receiving treatment (which he's not at this time). So, infection precautions are again the order of the day.
For now, we will continue to try to be optimistic. Greg feels good, and that's very important. I will post future updates as they develop. In the meantime, thanks always for your love & support. They really do mean the world to us!
Love,
Us
Monday, July 28, 2008
Follow-up Visit
Hey everyone (or anyone, as I don't know if anyone's continuing to read anymore, as I'm not posting regularly!).
Greg went for a follow-up visit to St. Louis on Friday. We had to get up at 4, as the only appointment available was at 9:30 (and he has to have labs drawn and analyzed before meeting with the doctor). Anyway, things are looking good. All of his blood levels have gone up, altho they still are below normal levels. However, his white count, red count, platelets, and ANC haven't been within "normal" ranges for years. The doctor is very pleased with his progress.
He said the fatigue is normal, and could last a good while. As far as work is concerned, Greg is going to try to go back full time next week, and see how it goes. If he has to, he'll cut back to half days, depending on how he feels.
We go back on September 26. Then they'll do a biopsy and skeletal survey (whole body X-ray to check for tumors) to make sure this all worked the way it was supposed to. We don't get those results until about 10 days after. Of course, that appt is at 9:30 a.m. as well. However, I think I finally have Greg talked into going up the night before.
I'll post again if I have any news, but that's about all for now!
Thanks for the continued support!
Love,
Ann
Greg went for a follow-up visit to St. Louis on Friday. We had to get up at 4, as the only appointment available was at 9:30 (and he has to have labs drawn and analyzed before meeting with the doctor). Anyway, things are looking good. All of his blood levels have gone up, altho they still are below normal levels. However, his white count, red count, platelets, and ANC haven't been within "normal" ranges for years. The doctor is very pleased with his progress.
He said the fatigue is normal, and could last a good while. As far as work is concerned, Greg is going to try to go back full time next week, and see how it goes. If he has to, he'll cut back to half days, depending on how he feels.
We go back on September 26. Then they'll do a biopsy and skeletal survey (whole body X-ray to check for tumors) to make sure this all worked the way it was supposed to. We don't get those results until about 10 days after. Of course, that appt is at 9:30 a.m. as well. However, I think I finally have Greg talked into going up the night before.
I'll post again if I have any news, but that's about all for now!
Thanks for the continued support!
Love,
Ann
Friday, July 11, 2008
Time Off for Good Behavior
HOME!
Went to see Dr. Vij (the regular oncologist) this morning. He looked at us & said, "Were you planning on heading home today?" Greg said, "I don't know, I thought you were driving this bus." He said Greg looks great, both in person (but we already knew that) & on paper. His labs look good, altho everything is still a little low but that's to be expected. We're at the treatment center now awaiting platelets & then we're DONE. He'll have labs drawn next week in Springfield to make sure he doesn't need anything, & then we come back here for an appointment in two weeks. He'll need plateletsupport for a while yet, plus may need other stuff from time to time. But, it'll all be outpatient & he'll be home. He'll still need plenty of rest & recovery time before he's ready to show up at training camp to vie for Brett's position.
We decided to tempt fate last night and got a good start on our packing, so once we get out of here, it won't take us long to get on the road. However, it could be a bit of a wait for the blood bank to send up the platelets, as sometimes they don't have any and have to "send out" for them. We hope to be home in our own bed (!) by 8 or 9 tonight.
We called the boys to tell them & although Matthew says he'll be happy to see us, his first response to the news was, "But, we're going to Nakato tonight!" I assured him he'll still get to go, & all was right with the world. He must be having a good time with the Altoonians, though, as evidenced by that response.
I don't know if this is The End of the Blog, but I won't be posting daily anymore. Thanks once again to everyone for reading this, supporting us & helping us get through this with so little difficulty. I know I'm going to forget someone, but I'll take a stab at naming a few: Eric, for your brotherly love; Matthew, for being a "good boy" while we were gone (he says he was!); Grandma Sadie, Uncle Tom, Auntie Skibby & the whole Altoonian family for taking such great care of the boys; Francis & Cindy, Judy, Debbie, Tammy, Ian, Kim, Emily & all the other regular & semi-regular posters who helped us keep our sense of humor; Mark, for visiting & keeping Greg company for a weekend; Deb & Skibby (again) for the medical advice & support; everyone at my office for covering for me while I was gone; and to all the silent readers who may not have posted, but whose prayers, love & support mean so much to us. I know I've probably forgotten someone, but believe me, its not intentional. We couldn't have gotten through this without all of you!
Thanks to all!
Love,
Greg & Ann
Went to see Dr. Vij (the regular oncologist) this morning. He looked at us & said, "Were you planning on heading home today?" Greg said, "I don't know, I thought you were driving this bus." He said Greg looks great, both in person (but we already knew that) & on paper. His labs look good, altho everything is still a little low but that's to be expected. We're at the treatment center now awaiting platelets & then we're DONE. He'll have labs drawn next week in Springfield to make sure he doesn't need anything, & then we come back here for an appointment in two weeks. He'll need plateletsupport for a while yet, plus may need other stuff from time to time. But, it'll all be outpatient & he'll be home. He'll still need plenty of rest & recovery time before he's ready to show up at training camp to vie for Brett's position.
We decided to tempt fate last night and got a good start on our packing, so once we get out of here, it won't take us long to get on the road. However, it could be a bit of a wait for the blood bank to send up the platelets, as sometimes they don't have any and have to "send out" for them. We hope to be home in our own bed (!) by 8 or 9 tonight.
We called the boys to tell them & although Matthew says he'll be happy to see us, his first response to the news was, "But, we're going to Nakato tonight!" I assured him he'll still get to go, & all was right with the world. He must be having a good time with the Altoonians, though, as evidenced by that response.
I don't know if this is The End of the Blog, but I won't be posting daily anymore. Thanks once again to everyone for reading this, supporting us & helping us get through this with so little difficulty. I know I'm going to forget someone, but I'll take a stab at naming a few: Eric, for your brotherly love; Matthew, for being a "good boy" while we were gone (he says he was!); Grandma Sadie, Uncle Tom, Auntie Skibby & the whole Altoonian family for taking such great care of the boys; Francis & Cindy, Judy, Debbie, Tammy, Ian, Kim, Emily & all the other regular & semi-regular posters who helped us keep our sense of humor; Mark, for visiting & keeping Greg company for a weekend; Deb & Skibby (again) for the medical advice & support; everyone at my office for covering for me while I was gone; and to all the silent readers who may not have posted, but whose prayers, love & support mean so much to us. I know I've probably forgotten someone, but believe me, its not intentional. We couldn't have gotten through this without all of you!
Thanks to all!
Love,
Greg & Ann
Thursday, July 10, 2008
Amost Home!
Sorry for not posting a second time yesterday. We got the word at about 10:00 that Greg's parole had come through. We immediately began to pack everything up (including the computer), which took all of 20 minutes (its a really small room). Then, we sat there staring at the white walls being ignored until well after 2:00, when someone decided maybe they should come & begin the discharge process. So, about 3:30, he finally got sprung! Yea!
Can't tell you how good he feels, knowing the end to this long process is almost over! Considering where we were about 6 weeks ago, this truly is miraculous. He goes to clinic today for lab work & a growth factor shot & tomorrow we see his regular oncologist. Hold onto your hats folks, but there's a decent chance that he'll get to go Home home tomorrow! The conservative doctor with the small thumbs said probably not until Tuesday, but the nurse (the nurse's know more than the docs) told us on the sly that she thinks it'll be Friday. My money is on the nurse. Even if it is next Tuesday, that's still a few days ahead of schedule.
Greg is going to have to get used to not being in the hospital, though. Last night, in the middle of the night, he was half awake/half asleep. He woke me up, saying he needed help with his IV pole to go to the bathroom. He thought he was still hooked up. Being the sensitive, loving spouse that I am, I said, "Huh?" & rolled over & went back to sleep.
While its great having Greg out of the hospital, it'll be 100 times better to be Home, in our own house, with the boys. We really miss them. But, they seem to be having a great time with the Altoonians, though I feel sorry for Julie -- living with 5 men in the house. The testosterone levels must be approaching lethal.
I promise to blog tomorrow, even if we are rushing to get out of town (hopefully!)
In the meantime, a HUGE thanks to all for the comments, prayers, support & love. I know I've said it before, but we really couldn't get through all of this without our loving family & friends. We can't thank you enough.
Love,
US
Can't tell you how good he feels, knowing the end to this long process is almost over! Considering where we were about 6 weeks ago, this truly is miraculous. He goes to clinic today for lab work & a growth factor shot & tomorrow we see his regular oncologist. Hold onto your hats folks, but there's a decent chance that he'll get to go Home home tomorrow! The conservative doctor with the small thumbs said probably not until Tuesday, but the nurse (the nurse's know more than the docs) told us on the sly that she thinks it'll be Friday. My money is on the nurse. Even if it is next Tuesday, that's still a few days ahead of schedule.
Greg is going to have to get used to not being in the hospital, though. Last night, in the middle of the night, he was half awake/half asleep. He woke me up, saying he needed help with his IV pole to go to the bathroom. He thought he was still hooked up. Being the sensitive, loving spouse that I am, I said, "Huh?" & rolled over & went back to sleep.
While its great having Greg out of the hospital, it'll be 100 times better to be Home, in our own house, with the boys. We really miss them. But, they seem to be having a great time with the Altoonians, though I feel sorry for Julie -- living with 5 men in the house. The testosterone levels must be approaching lethal.
I promise to blog tomorrow, even if we are rushing to get out of town (hopefully!)
In the meantime, a HUGE thanks to all for the comments, prayers, support & love. I know I've said it before, but we really couldn't get through all of this without our loving family & friends. We can't thank you enough.
Love,
US
Wednesday, July 9, 2008
16 Crummy Points
Our Hero's ANC is at 1484 -- a mere 16 points from the magic number (Greg did the math for me). But, more importantly, we are stuck in the middle of that (in)famous Jimmy Buffet tune: "Lassix All Day, Saline All Night."
"Get Me The Hell Out of Here!"
No sooner had I posted yesterday than the oncologist came in & said there's a chance they'll send him home today (Wednesday). We seem to have two competing docs here -- one who's very conservative, the other a little more moderate. The conservative one doesn't seem to want to let him leave, while the moderate one does. Rumor has it they're going to rumble in the doctor's lounge later today & come to a decision. Maybe it'll be a thumb war. I'm rooting for the oncologist -- he seems more willing to send him home (and, he has bigger thumbs).
So, once again we're in hurry up & wait mode. What else is new? We're getting very good at that.
I'll post again later today if anyone (including Brett Favre) comes to a decision.
Stay tuned!
US
"Get Me The Hell Out of Here!"
No sooner had I posted yesterday than the oncologist came in & said there's a chance they'll send him home today (Wednesday). We seem to have two competing docs here -- one who's very conservative, the other a little more moderate. The conservative one doesn't seem to want to let him leave, while the moderate one does. Rumor has it they're going to rumble in the doctor's lounge later today & come to a decision. Maybe it'll be a thumb war. I'm rooting for the oncologist -- he seems more willing to send him home (and, he has bigger thumbs).
So, once again we're in hurry up & wait mode. What else is new? We're getting very good at that.
I'll post again later today if anyone (including Brett Favre) comes to a decision.
Stay tuned!
US
Tuesday, July 8, 2008
Coming along -- slowly
Reader's Digest Version: Hooked up to IV for 8 hours overnight. Got electrolytes, antibiotics, anti-fungals & plateletes, all with 8 hours of fluids -- ankles still swollen. While the rest of the world has one big toe on each foot, Greg has five that all look like Cuban cigars. I never thought getting his feet into his shoes would be an issue. Central line came out this a.m., & reportedly the doc says discharge (maybe) Thursday (to St. L). Fever overnight.
That's the short version. Seems we won't be coming home this weekend as we were thinking over the past weekend. We haven't seen any docs this morning because they had to take Greg down to Interventive Radiology to remove the central line catheter. But, its good that its out because thats a possible source of infection, and could be contributing to the fevers. He has to be fever free for 24 hours before discharge, too. Last night his ANC was 1354 (remember, 1500 is the goal), but they've also been giving him growth factor shots for the last week, which helps to increase that count. Tomorrow, they'll probably discontinue the growth factor to see if he can make any white cells on his own. So, the Thursday discharge date is still a maybe. It depends (which has become our mantra).
So, we're just hanging out. Like Greg says, "Everybody's got to be somewhere!" He's been feeling pretty good the last few days, so we know he's turned the corner. Thanks to all for the great comments. All the prayers are definitely paying off, too. We really appreciate all of your support and friendship. Thanks to all!
Love,
Greg & Ann
That's the short version. Seems we won't be coming home this weekend as we were thinking over the past weekend. We haven't seen any docs this morning because they had to take Greg down to Interventive Radiology to remove the central line catheter. But, its good that its out because thats a possible source of infection, and could be contributing to the fevers. He has to be fever free for 24 hours before discharge, too. Last night his ANC was 1354 (remember, 1500 is the goal), but they've also been giving him growth factor shots for the last week, which helps to increase that count. Tomorrow, they'll probably discontinue the growth factor to see if he can make any white cells on his own. So, the Thursday discharge date is still a maybe. It depends (which has become our mantra).
So, we're just hanging out. Like Greg says, "Everybody's got to be somewhere!" He's been feeling pretty good the last few days, so we know he's turned the corner. Thanks to all for the great comments. All the prayers are definitely paying off, too. We really appreciate all of your support and friendship. Thanks to all!
Love,
Greg & Ann
Monday, July 7, 2008
Definitely Maybe Kinda Sorta, We Think
The ANC continues to go up & up! When we last left Our Hero, it was Independence Day & his ANC was up from zero to 52 (1500 is the goal). On 7/5 it was 192, and last night it was 585. He feels TONS better, and slowly but surely, the water is coming off. Part of the problem with the fluids is that when they give him Lassix to take fluid off, it also takes off electrolytes. So, in order to replace the electrolytes, they have to give him more fluid. Its a vicious cycle.
As of late yesterday, he was still running low-grade fever, but that broke last night & his body temp is finally feeling normal. He's no longer sitting in bed or the chair bundled up like its December & the furnace isn't working. Lets hope that holds.
So, what does all this mean? Good question. Yesterday, the floor oncologist came in & said, "You're looking pretty good. Tomorrow we'll take out your central line & get you out of here possibly by Tuesday." Needless to say, we were filled with guarded enthusiasm. This morning, the nurse comes in & asks why he's getting his line out. Greg tells her what the oncologist said & she's VERY surprised. The resident comes in & tells us that order was for someone else (you mean they wrote someone else's order in his chart? yeah, right). Anyway, he says the line ISN'T coming out today & there's no timeline for discharge. Then, he comes back in 2 hours later & says the line IS coming out sometime today. We just don't know when. And, he gives a tentative discharge date of Wednesday. That doesn't mean he gets to come home to Nixa, but we both get to stay at the summer house for about a week. They'll set him up with an appointment with our regular oncologist after discharge, and then he'll likely get to go home home after that. Just don't exactly know when that will be -- could be Friday, could be sometime next week. An hour later, the oncologist comes back & says the line comes out today or tomorrow, & discharge is tentative for Wednesday or Thursday. Sigh. I think I knew more when I didn't know anything.
So, that's as definitely maybe as I can be. In other words, we don't know anything (so, what else is new?). I'll keep posting as they keep changing their minds. Remember, nothing around here ever is definite. (Its now 1:30 -- I've revised this thing 3 times since I started writing it this morning!)
All in all, though, spirits are up, fluid retention is down & Our Hero is getting restless. That's a good sign. When he was feeling crappy (pun intended), he was really compliant. Too scary! He's getting just a little bit little ornery again, which makes me feel all is right with the world.
Thanks to all!
Love.
Us
As of late yesterday, he was still running low-grade fever, but that broke last night & his body temp is finally feeling normal. He's no longer sitting in bed or the chair bundled up like its December & the furnace isn't working. Lets hope that holds.
So, what does all this mean? Good question. Yesterday, the floor oncologist came in & said, "You're looking pretty good. Tomorrow we'll take out your central line & get you out of here possibly by Tuesday." Needless to say, we were filled with guarded enthusiasm. This morning, the nurse comes in & asks why he's getting his line out. Greg tells her what the oncologist said & she's VERY surprised. The resident comes in & tells us that order was for someone else (you mean they wrote someone else's order in his chart? yeah, right). Anyway, he says the line ISN'T coming out today & there's no timeline for discharge. Then, he comes back in 2 hours later & says the line IS coming out sometime today. We just don't know when. And, he gives a tentative discharge date of Wednesday. That doesn't mean he gets to come home to Nixa, but we both get to stay at the summer house for about a week. They'll set him up with an appointment with our regular oncologist after discharge, and then he'll likely get to go home home after that. Just don't exactly know when that will be -- could be Friday, could be sometime next week. An hour later, the oncologist comes back & says the line comes out today or tomorrow, & discharge is tentative for Wednesday or Thursday. Sigh. I think I knew more when I didn't know anything.
So, that's as definitely maybe as I can be. In other words, we don't know anything (so, what else is new?). I'll keep posting as they keep changing their minds. Remember, nothing around here ever is definite. (Its now 1:30 -- I've revised this thing 3 times since I started writing it this morning!)
All in all, though, spirits are up, fluid retention is down & Our Hero is getting restless. That's a good sign. When he was feeling crappy (pun intended), he was really compliant. Too scary! He's getting just a little bit little ornery again, which makes me feel all is right with the world.
Thanks to all!
Love.
Us
Saturday, July 5, 2008
We have ANC!
As of yesterday evening, Greg has an ANC count! We haven't had one for about 4 days, so this is very exciting. This means his white blood cells are coming back. The ANC measures the infection fighting white cells. Its supposed to be 1500. His is 54. But, its a start! Going in the right direction!
Unfortunately, last night was the most "interesting" night yet, from a medication perspective. Because of his lab counts being so low, Greg needed 2 antibiotics, an anti-fungal (see I TOLD you fungus was bad!), 3 different types of electrolytes & 2 transfusions. All b/c he had a fever (and the complications associated with that--mainly dehydration). But they couldn't give him any of that until he got his fever down with Tylenol, which took forever. So, at 10 p.m. his fever is down to 100.3 (the cutoff) & they finally started hanging stuff off his IV pole. As with all meds they have to give them in or with large bags of saline solution to "keep him hydrated" (its an obsession around here). By 4 a.m. the overloaded IV pump alarm went off for the 12th time -- don't worry though, it only rings for about 15 minutes before the nurse shows up to turn it off. (At one point they had an emergency in another room & it took an hour & 15 minutes before someone was able to come turn it off). At the crack of dawn, the nursing tech came in to check his fever. Lo & behold he has one again! No only that, but he looks & feels like the Sta-Puft Marshmallow man due to all the fluids. He needs to get "pissed off" -- & he is. The doctor comes in, just after breakfast & says, "Do you realize you have a fever? You need MORE anti-biotics." I think Greg's head started to spin. So, while the Lassix is emptying him out, the antibiotics & saline are filling him up faster than the Lassix can work. His entire body is bloated & he's up about 10 pounds. (George: I think he's going to win the contest again! I wish you were here to share the moment with me!).
As uncomfortable as all this is, he's not in any danger medically & is slowly getting better. All the cultures have come back negative. And, he's getting a little grumpy, so I know he must be feeling better than he did earlier this week.
Thanks for the comments. Debbie, I was thinking about mojitos last night. I'm jealous. I'm not sure, but I think I saw some mint leaves floating around in one of Greg's IV bags last night. I think he's getting some on the sly. Em -- glad you enjoyed the brats & thanks for thinking of us! George: Go Cards! (If I didn't write that, they would kick Greg out of here -- these people are Cardinal crazy around here!)
Judy & Mark are here with the girls. We plan to go to Grant's Farm today & I'm taking them to Cunetto's for pasta tonight, then to Ted Drew's for dessert. The boys are on their way to the Altoonians for the week, and Tom & Sadie are headed home, but plan a stop here on their way through town.
Thanks to all!
Love,
Ann & Greg
Unfortunately, last night was the most "interesting" night yet, from a medication perspective. Because of his lab counts being so low, Greg needed 2 antibiotics, an anti-fungal (see I TOLD you fungus was bad!), 3 different types of electrolytes & 2 transfusions. All b/c he had a fever (and the complications associated with that--mainly dehydration). But they couldn't give him any of that until he got his fever down with Tylenol, which took forever. So, at 10 p.m. his fever is down to 100.3 (the cutoff) & they finally started hanging stuff off his IV pole. As with all meds they have to give them in or with large bags of saline solution to "keep him hydrated" (its an obsession around here). By 4 a.m. the overloaded IV pump alarm went off for the 12th time -- don't worry though, it only rings for about 15 minutes before the nurse shows up to turn it off. (At one point they had an emergency in another room & it took an hour & 15 minutes before someone was able to come turn it off). At the crack of dawn, the nursing tech came in to check his fever. Lo & behold he has one again! No only that, but he looks & feels like the Sta-Puft Marshmallow man due to all the fluids. He needs to get "pissed off" -- & he is. The doctor comes in, just after breakfast & says, "Do you realize you have a fever? You need MORE anti-biotics." I think Greg's head started to spin. So, while the Lassix is emptying him out, the antibiotics & saline are filling him up faster than the Lassix can work. His entire body is bloated & he's up about 10 pounds. (George: I think he's going to win the contest again! I wish you were here to share the moment with me!).
As uncomfortable as all this is, he's not in any danger medically & is slowly getting better. All the cultures have come back negative. And, he's getting a little grumpy, so I know he must be feeling better than he did earlier this week.
Thanks for the comments. Debbie, I was thinking about mojitos last night. I'm jealous. I'm not sure, but I think I saw some mint leaves floating around in one of Greg's IV bags last night. I think he's getting some on the sly. Em -- glad you enjoyed the brats & thanks for thinking of us! George: Go Cards! (If I didn't write that, they would kick Greg out of here -- these people are Cardinal crazy around here!)
Judy & Mark are here with the girls. We plan to go to Grant's Farm today & I'm taking them to Cunetto's for pasta tonight, then to Ted Drew's for dessert. The boys are on their way to the Altoonians for the week, and Tom & Sadie are headed home, but plan a stop here on their way through town.
Thanks to all!
Love,
Ann & Greg
Friday, July 4, 2008
Independence Day
Happy 4th of July to you all!
What the heck are you doing inside surfing the web? You should be outside having fun!
Greg's symptoms continue to improve. His fever outbreaks seem to be getting less frequent and less intense. The "Revenge" is significantly better, and his mouth sores are improving. They continue to push fluids, but he still can't get his mouth to feel hydrated. But, daily we see incremental improvement. I can tell he's feeling better, as he's getting a little antsy. His appetite is poor, but he's had a little soup, crackers & bread over the last few days. He's really tired of drinking water, so I keep trying to find other things for him to drink. He ordered the diet lemonade today for lunch & it was like Will Smith in Men in Black when he went to "Edgar's" house -- I don't think they put any sweetener in it at all! He's now got a permanent pucker!
His white count continues to be zero, as well as his ANC (infection fighting cells), but that's still normal. The doc says he probably won't begin to see those come up until early next week.
So, we continue to hang out. Judy, Mark and the girls are on the way & we hope to see some fireworks out our window tonight. There's a big show planned from the Arch tonight. Unfortunately, we're facing north, so we may not have enough of an eastern angle to see.
On the cell phone front, I appear to have service again. I took out the battery & put it back in & Viola! It works (Sorry Amanda!). We'll see how long it lasts. If you try me & can't reach me, try Greg's. If he's awake, he'll answer.
Thanks to all for love, prayers, support & everything. Love the comments. David: Can't think of anything specific to ask for other than that the blood counts to come up soon. Mich: as soon as you get pregnant, I'll crochet you a pony too. Oh, and neither one of us believes the story about Brett coming back. We own a share of the Packers, which makes us owners of the team, and they haven't told US anything -- you'd think if there were any truth to it, we'd be the first to know!
Have a safe & happy 4th everyone!
Love,
Us
What the heck are you doing inside surfing the web? You should be outside having fun!
Greg's symptoms continue to improve. His fever outbreaks seem to be getting less frequent and less intense. The "Revenge" is significantly better, and his mouth sores are improving. They continue to push fluids, but he still can't get his mouth to feel hydrated. But, daily we see incremental improvement. I can tell he's feeling better, as he's getting a little antsy. His appetite is poor, but he's had a little soup, crackers & bread over the last few days. He's really tired of drinking water, so I keep trying to find other things for him to drink. He ordered the diet lemonade today for lunch & it was like Will Smith in Men in Black when he went to "Edgar's" house -- I don't think they put any sweetener in it at all! He's now got a permanent pucker!
His white count continues to be zero, as well as his ANC (infection fighting cells), but that's still normal. The doc says he probably won't begin to see those come up until early next week.
So, we continue to hang out. Judy, Mark and the girls are on the way & we hope to see some fireworks out our window tonight. There's a big show planned from the Arch tonight. Unfortunately, we're facing north, so we may not have enough of an eastern angle to see.
On the cell phone front, I appear to have service again. I took out the battery & put it back in & Viola! It works (Sorry Amanda!). We'll see how long it lasts. If you try me & can't reach me, try Greg's. If he's awake, he'll answer.
Thanks to all for love, prayers, support & everything. Love the comments. David: Can't think of anything specific to ask for other than that the blood counts to come up soon. Mich: as soon as you get pregnant, I'll crochet you a pony too. Oh, and neither one of us believes the story about Brett coming back. We own a share of the Packers, which makes us owners of the team, and they haven't told US anything -- you'd think if there were any truth to it, we'd be the first to know!
Have a safe & happy 4th everyone!
Love,
Us
Wednesday, July 2, 2008
Improvement
Hi to all. Thanks for the comments. Cindy H: I can't crochet baby Roscoe a sweater, so I'm going to crochet him a pony. Top that! Francis: loved the story. Deb: That's exactly what they've been telling me here.
They draw a blood culture every 24 hours & so far all have been negative. He hit a high of 103 yesterday afternoon & spent the day sleeping. He was feeling pretty misterable. But, at about at 8 p.m. he felt tremendously better. He got up for about 2 hours, and ate for the first time in about 24 hours. His BP got down to 90-something over 40 something at one point, so they've really been pushing the fluids, orally and IV. The "Revenge" keeps rearing its ugly head, but now that its been confirmed that he doesn't have "c-diff" he can have Immodium, which helps.
I stayed the night again last night. His counts remain low, and they probably won't start coming back up until early next week -- so he'll probably feel like this throughout the whole weekend. Last night he got 2 units of whole blood, and they hung 3 IV antibiotics. Needless to say, another sleep-deprived night.
The staff here seems to be on weekend mode, so we just saw the doctor (9:30 a.m Thursday). He's still stumped on the rash thing, & still assures us the rest is all normal. (Easy for him to say.)
They draw a blood culture every 24 hours & so far all have been negative. He hit a high of 103 yesterday afternoon & spent the day sleeping. He was feeling pretty misterable. But, at about at 8 p.m. he felt tremendously better. He got up for about 2 hours, and ate for the first time in about 24 hours. His BP got down to 90-something over 40 something at one point, so they've really been pushing the fluids, orally and IV. The "Revenge" keeps rearing its ugly head, but now that its been confirmed that he doesn't have "c-diff" he can have Immodium, which helps.
I stayed the night again last night. His counts remain low, and they probably won't start coming back up until early next week -- so he'll probably feel like this throughout the whole weekend. Last night he got 2 units of whole blood, and they hung 3 IV antibiotics. Needless to say, another sleep-deprived night.
The staff here seems to be on weekend mode, so we just saw the doctor (9:30 a.m Thursday). He's still stumped on the rash thing, & still assures us the rest is all normal. (Easy for him to say.)
On another note, those of you who have been trying to reach me on my cell may have figured out that its been acting possessed all week. Sometimes it rings, somtimes it doesn't, with no rhyme or reason. Well, it appears last night it finally decided to quit alltogether. I can't even seem to turn it on. So, those of you who need me, call on Greg's phone. If I can't get it to work again soon, I guess I'll be ordering a new one: "You may find this strange, but I just want a phone that makes phone calls!" That may be the biggest challenge I face this week.
Other than that, we're just hanging in there. Looking forward to Judy, Mark & the girls coming to visit this weekend. They should have a blast playing with the controls on the bed. Matthew sure did last weekend.
Love to all!
Us
Rough Night -- But OK
Well, we had a rough night last night, but, according to everyone here who's in the know, this is nothing out of the ordinary.
Greg continued with the "Revenge" during the day and starting last night, got a neutropenic fever. Evidently, this is par for the course. He spiked about 2 a.m. with 102.something. Lots of chills, and tylenol was only marginally helpful. We piled on the blankets & they also started him on IV antibiotics. The good news is that, as of this a.m., the 'revenge' seems to have abated. Last night about 8 p.m. they brought in a portable x-ray machine and took a chest x-ray, just to be sure his lungs are clear (they are -- the x-ray was negative). He's also developed some sort of weird rash all over which seems to have the doctor stumped -- they don't think its a medication reaction because it came on before the antibiotics. He's lost so much fluid over the last 24 hours that his blood pressure is very low, too, so they've got him on IV fluids & he's drinking a lot of water. I stayed here at the hospital last night to help out so I'm operating on very little sleep. I'm going to to home soon to shower & pack a bag so I can stay again tonight.
We have been assured by everyone that this is SOP and its not time to panic. I have to admit, when they came for the x-ray last night I had a bit of a flashback to August of '03, but the nurse assured me this is all normal.
Basically, what's happening is that his white count is so low (altho he's stubborn -- its not quite zero yet), that his body thinks its got an infection, so that's where the fever comes from. The antibiotics are precautionary.
So, even though his energy is VERY low, our spirits are still good. We really enjoy all the comments, and I make sure to read them to him every day. Deb -- thanks in advance for the shower shields. I hope they're waiting for me when I go home to clean up.
Thanks to all!
Love,
Us
Greg continued with the "Revenge" during the day and starting last night, got a neutropenic fever. Evidently, this is par for the course. He spiked about 2 a.m. with 102.something. Lots of chills, and tylenol was only marginally helpful. We piled on the blankets & they also started him on IV antibiotics. The good news is that, as of this a.m., the 'revenge' seems to have abated. Last night about 8 p.m. they brought in a portable x-ray machine and took a chest x-ray, just to be sure his lungs are clear (they are -- the x-ray was negative). He's also developed some sort of weird rash all over which seems to have the doctor stumped -- they don't think its a medication reaction because it came on before the antibiotics. He's lost so much fluid over the last 24 hours that his blood pressure is very low, too, so they've got him on IV fluids & he's drinking a lot of water. I stayed here at the hospital last night to help out so I'm operating on very little sleep. I'm going to to home soon to shower & pack a bag so I can stay again tonight.
We have been assured by everyone that this is SOP and its not time to panic. I have to admit, when they came for the x-ray last night I had a bit of a flashback to August of '03, but the nurse assured me this is all normal.
Basically, what's happening is that his white count is so low (altho he's stubborn -- its not quite zero yet), that his body thinks its got an infection, so that's where the fever comes from. The antibiotics are precautionary.
So, even though his energy is VERY low, our spirits are still good. We really enjoy all the comments, and I make sure to read them to him every day. Deb -- thanks in advance for the shower shields. I hope they're waiting for me when I go home to clean up.
Thanks to all!
Love,
Us
Tuesday, July 1, 2008
D....Day
Well, something is finally happening. Nothing too serious, but our Patient is feeling some of the side effects that everyone here kept warning him were coming. He had a bit of a rough night -- up a lot with the chemo version of Montezuma's Revenge (maybe it was power of suggestion after watching the "dung" show last night!). He also spiked a slight fever, has a few mouth sores and is feeling a little dehydrated. But, all in all, he's still functioning OK, and everyone here who's in the know assures us this is all normal. He's just really tired and uncomfortable. The narrow hospital bed has been really difficult to adjust to. He will probably (hopefully) cat nap throughout the day, hopefully with minimal interruptions. I'm going to try to run some much-needed errands later. Right now we're watching Wimbleton. That should put him to sleep!
Thanks for the great comments. Kathy J., it was great to hear from you. Keep the prayers coming & hopefully our Patient will feel better soon! Thanks to all.
Love,
Us
Thanks for the great comments. Kathy J., it was great to hear from you. Keep the prayers coming & hopefully our Patient will feel better soon! Thanks to all.
Love,
Us
Monday, June 30, 2008
Nowhere to go but up!
Good Monday morning to all!
I didn't post this weekend b/c we had company -- Greg's mom, sister, brother & Matthew -- and, medically, not much really happens on the weekends.
It was great seeing Matthew, and we had a great time. Went to eat on the Hill, went to the Science Center & celebrated Grandma Sadie's 83rd birthday. Happy Birthday Grandma! We went to mass at the St. Louis Cathedral & I have to say its one of the most beautiful churches I've ever been in -- & that includes the ones in Vienna & Budapest. Matthew only had to go to the bathroom twice during mass. Eric couldn't make it (he was scheduled to work, then about 2 hours after Skibby & Grandma left Nixa, they called & told him not to come in due to weather), but I talked to him about 6 times over the weekend. I guess the party went well. He swears he got all the kegs cleared out before Grandma & Uncle Tom got home yesterday.
It appears from Greg's white count that he's pretty well bottomed out. They're now giving him shots of Neupagen (sp?), to bring the white counts up. Yesterday was kind of rough, as his mouth sores cropped up, making it harder to eat or drink. The nurse brought him some "magic mouthwash" with maalox & lidocaine (sp?), which helped immensely. But, it made his mouth completely numb & he talked funny for a couple of hours. He's feeling a little better so far today, but I think he's getting a little stir crazy. The only "outings" he gets are laps around the unit, and he has to mask up for those. And, they've only done one "C-Diff" test (which was negative) so we still have to wear the HazMat suits every time we leave the room. He has to have 3 negative tests before they will remove the C-Diff precautions, and, although he's given them numerous opportunities to test, for some reason they haven't sent any more out. This is all because he had it when he was here 4 years ago, even though he's shown no signs of having it now. Sometimes I think the Infectious Disease Department needs more to do. Every time we leave the room, or anyone enters the room, they have to put on a disposable gown (very fashionable!) and rubber gloves. I can go through about a dozen over the course of a day by myself. Greg's "carbon footprint" in here is HUGE. I guess we'll worry about being "green" when we get out of here.
Speaking of "C-Diff" Greg is very excited b/c my brother in law called & said the History Channel is showing "The History of Dung" tonight at 8. You don't want to miss it. Greg is just a little insulted that they didn't call him for an interview. It should be the highlight of our day.
Thanks to all for the comments, prayers, support & all. It means the world to us.
Love,
Greg & Ann
I didn't post this weekend b/c we had company -- Greg's mom, sister, brother & Matthew -- and, medically, not much really happens on the weekends.
It was great seeing Matthew, and we had a great time. Went to eat on the Hill, went to the Science Center & celebrated Grandma Sadie's 83rd birthday. Happy Birthday Grandma! We went to mass at the St. Louis Cathedral & I have to say its one of the most beautiful churches I've ever been in -- & that includes the ones in Vienna & Budapest. Matthew only had to go to the bathroom twice during mass. Eric couldn't make it (he was scheduled to work, then about 2 hours after Skibby & Grandma left Nixa, they called & told him not to come in due to weather), but I talked to him about 6 times over the weekend. I guess the party went well. He swears he got all the kegs cleared out before Grandma & Uncle Tom got home yesterday.
It appears from Greg's white count that he's pretty well bottomed out. They're now giving him shots of Neupagen (sp?), to bring the white counts up. Yesterday was kind of rough, as his mouth sores cropped up, making it harder to eat or drink. The nurse brought him some "magic mouthwash" with maalox & lidocaine (sp?), which helped immensely. But, it made his mouth completely numb & he talked funny for a couple of hours. He's feeling a little better so far today, but I think he's getting a little stir crazy. The only "outings" he gets are laps around the unit, and he has to mask up for those. And, they've only done one "C-Diff" test (which was negative) so we still have to wear the HazMat suits every time we leave the room. He has to have 3 negative tests before they will remove the C-Diff precautions, and, although he's given them numerous opportunities to test, for some reason they haven't sent any more out. This is all because he had it when he was here 4 years ago, even though he's shown no signs of having it now. Sometimes I think the Infectious Disease Department needs more to do. Every time we leave the room, or anyone enters the room, they have to put on a disposable gown (very fashionable!) and rubber gloves. I can go through about a dozen over the course of a day by myself. Greg's "carbon footprint" in here is HUGE. I guess we'll worry about being "green" when we get out of here.
Speaking of "C-Diff" Greg is very excited b/c my brother in law called & said the History Channel is showing "The History of Dung" tonight at 8. You don't want to miss it. Greg is just a little insulted that they didn't call him for an interview. It should be the highlight of our day.
Thanks to all for the comments, prayers, support & all. It means the world to us.
Love,
Greg & Ann
Friday, June 27, 2008
Transplant Complete!
Sorry about the late post, but today's transplant was a bit of a cluster f**k. We had a new nurse who was being trained by a veteran, and Greg and I were the only two who seemed to know what to do. WE told THEM what the premeds were supposed to be, then she didn't have the right equipment & enough supplies. We both watched them like a hawk. Good thing SOMEONE knew what the hell was going on. But, all the cells eventually got in & he's done. Now we just spend the next 2 weeks or so waiting for his blood counts to improve.
Thanks for all the great comments. Francis: can you send that cow? Ian: He IS Lex Luther and after this is over he's going to take over the world! Carolyn: Can't you keep those people in line? I'll be back as soon as I can. There seems to be some horrible imbalance in the Universe. Daniel: I'm glad to see you're your usual, sunshiny self. Always so cheery to hear from you!
Other than that, not too much to report. Overall, Greg still feels fine (altho that doesn't stop the docs from coming in, asking him how he feels, then billing for a level 3 visit). He's starting to feel a few symptoms of the chemo, most notably in the nether regions of his GI tract (I'll let you imagine the rest). We'll get to see Matthew this weekend (he can even visit Dad if he (Matthew) passes the "medical exam") but Eric couldn't get anyone to switch with him from work, so he won't be able to make it. Bummer.
So, keep those comments coming & have a great weekend!
Love,
Us
Thanks for all the great comments. Francis: can you send that cow? Ian: He IS Lex Luther and after this is over he's going to take over the world! Carolyn: Can't you keep those people in line? I'll be back as soon as I can. There seems to be some horrible imbalance in the Universe. Daniel: I'm glad to see you're your usual, sunshiny self. Always so cheery to hear from you!
Other than that, not too much to report. Overall, Greg still feels fine (altho that doesn't stop the docs from coming in, asking him how he feels, then billing for a level 3 visit). He's starting to feel a few symptoms of the chemo, most notably in the nether regions of his GI tract (I'll let you imagine the rest). We'll get to see Matthew this weekend (he can even visit Dad if he (Matthew) passes the "medical exam") but Eric couldn't get anyone to switch with him from work, so he won't be able to make it. Bummer.
So, keep those comments coming & have a great weekend!
Love,
Us
Thursday, June 26, 2008
Two Thirds Done
Officially Day Plus One. These are pics I took today while Greg was getting his stem cells. The top one was getting ready to go for a walk -- he's got to wear his mask & take his IV pole with him. Plus, he can't leave the floor, so we just do laps around the unit. But, it gets him out of the room, and since he's still getting Dex (the steroid), it helps with blood sugars, too. The other pics he's getting his cells. You can see the bag in the upper left corner of the picture. Its interesting because, if you've been following our saga from the beginning, you remember how much trouble he had collecting his cells. So, some bags have 0.1 units, some up to 0.3 or 0.4. We can actually tell which ones are which. The volume of each bag is the same, but the color is much deeper in the ones with more cells. Plus the ones with less cells infuse much more quickly.
Thanks for the great comments. Its great knowing we have all the prayers and support. Judy, I don't want to post the address of the duplex here, so could you please e-mail it to Francis? I don't have his e-mail address here. Kathy, margaritas sound great! I was reading Greg the comments while he was getting prepped for the transplant, & he asked the nurse (the one in the picture above) if he could get some Tequila IV. Turns out she's a real Tequila afficionado. She promised to check, as she likes hers straight.
So far Greg has had 8 of his 12 bags of cells. He's tolerating all the meds & the preservative really well. I'm even getting used to the smell. Its kind of like canned creamed corn, only a lot stronger. I can walk down the halls past the closed rooms & tell exactly who is getting their cells today, just by the smell. But, that's a good thing -- the smell is well worth it.
He's still mostly a-symptomatic, although a little lower-intestinal problem started late yesterday. So, we are on "C-Diff" precautions, mostly b/c he had it when he was here 4 years ago. So, whenever we leave the room to do anything (other than me leaving the floor to go home for the day), we must wear gowns & gloves -- even if I just want to go to the restroom. Its really a pain, but it helps protect everyone else. I'm on self-imposed fluid restrictions!
Greg's blood counts continue to go down, & he's officially neutropenic again, so no fresh fruits or veggies. His white count is 2.0 and his ANC is 182 (these are the infection-fighting white cells -- they're supposed to be over 1000). I'm hoping someone from dietary is going to come by & offer some advice sometime today, as he still has to watch blood sugar, too. I guess its another stick of butter for lunch!
Matthew seems to be having a great time with Grandma & Auntie Skibby -- he got new underwear! (I knew Grandma would come through!). He's very excited about it. Ah, to be 4 again......Eric hasn't been around too much, what with work, lacrosse and swimming, but the time he spends with Matthew has been really helpful in giving him some sense of normalcy. I'm excited to see both boys this weekend.
Thanks again to all of you for your love, prayers & support. As always, it means the world to us. Greg really enjoys the comments. It gets pretty boring up here.
Love,
Greg & Ann
Wednesday, June 25, 2008
Transplant, Day Zero
Well, its 2 p.m., and after a lot of hurry up & wait and a little frustration on the part of our patient Patient, he's getting his stem cells. They just thawed bag 3 of 4 and are ready to hang it.
We're in his regular room, and the nurse is actually performing the transplant. We've been told there's a doctor on the floor somewhere, but they usually don't take part. (I remember 4 years ago the doctor was in the room for part of the transplant -- I couldn't figure out why. His role seemed to consist of pouring the liquid nitrogen used to store the frozen cells onto the floor, trying to make the tiles crack, while the nurse did all the work.)
The pre-meds made Greg pretty loopy, which is probably OK, as his mood wasn't too great this morning. There's a lot of boredom here, with a lot of untimely interruptions. You really can't get any work done, or even watch a TV show. As soon as William Powell announces: "And the killer is...." someone comes barging into the room to do something. The woman who cleans the room is the worst -- she rattles around like a herd of buffalo, talking and complaining the entire time.
They will be giving Greg his 12 bags of stem cells over the next 3 days. There's several reasons why, but a big one is because of the preservative -- too much in one day is toxic. It also smells pretty bad, and will be coming out of his pores & breath over the next several days. I told him that in retaliation, I'm going to the Hill to eat as much garlic as I can. Every day about 3 people from various departments throughout the hospital come by to see if he has any complaints or suggestions. Greg's next suggestion is going to be to change the smell of the preservative to something good. Like bacon. I'll let you know how that works out.
Well, in the time it took to write this, he's about done. Greg came through it with flying colors. Sometimes there's immediate side effects, like nausea, drop in oxygen rate, even cardiac problems. But, true to form, his side effects were minimal.
His lab work shows his blood counts continually going down, but that's normal too. In about 4 days, his white count should be zero. Then they slowly start coming up. He had to have 2 units of whole blood last night. Naturally, they started that at about 10:30 p.m., and it took 4 hours. Even with a sleeping pill, he didn't get much sleep. He's napping now, but I'm betting someone will come barging through the door in about 5 minutes to do something.
Other than that, he's doing fine. Its going to be a long 3 weeks, though. A hospital is no place to be sick!
Thanks to all for the prayers, love & support. Although we can't talk to everyone each day, please know we think of you and appreciate all you do. I'll post again tomorrow (officially Day Plus One).
Love,
Greg & Ann
We're in his regular room, and the nurse is actually performing the transplant. We've been told there's a doctor on the floor somewhere, but they usually don't take part. (I remember 4 years ago the doctor was in the room for part of the transplant -- I couldn't figure out why. His role seemed to consist of pouring the liquid nitrogen used to store the frozen cells onto the floor, trying to make the tiles crack, while the nurse did all the work.)
The pre-meds made Greg pretty loopy, which is probably OK, as his mood wasn't too great this morning. There's a lot of boredom here, with a lot of untimely interruptions. You really can't get any work done, or even watch a TV show. As soon as William Powell announces: "And the killer is...." someone comes barging into the room to do something. The woman who cleans the room is the worst -- she rattles around like a herd of buffalo, talking and complaining the entire time.
They will be giving Greg his 12 bags of stem cells over the next 3 days. There's several reasons why, but a big one is because of the preservative -- too much in one day is toxic. It also smells pretty bad, and will be coming out of his pores & breath over the next several days. I told him that in retaliation, I'm going to the Hill to eat as much garlic as I can. Every day about 3 people from various departments throughout the hospital come by to see if he has any complaints or suggestions. Greg's next suggestion is going to be to change the smell of the preservative to something good. Like bacon. I'll let you know how that works out.
Well, in the time it took to write this, he's about done. Greg came through it with flying colors. Sometimes there's immediate side effects, like nausea, drop in oxygen rate, even cardiac problems. But, true to form, his side effects were minimal.
His lab work shows his blood counts continually going down, but that's normal too. In about 4 days, his white count should be zero. Then they slowly start coming up. He had to have 2 units of whole blood last night. Naturally, they started that at about 10:30 p.m., and it took 4 hours. Even with a sleeping pill, he didn't get much sleep. He's napping now, but I'm betting someone will come barging through the door in about 5 minutes to do something.
Other than that, he's doing fine. Its going to be a long 3 weeks, though. A hospital is no place to be sick!
Thanks to all for the prayers, love & support. Although we can't talk to everyone each day, please know we think of you and appreciate all you do. I'll post again tomorrow (officially Day Plus One).
Love,
Greg & Ann
Tuesday, June 24, 2008
And On the Third Day, He Rested
Hi to all!
First, to reply to the comments from yesterday: Yes, they made enough cookies. However, they’re all gone. Kim, I’M not sure I can handle you getting domestic all of a sudden! But, I always knew you’d come over from the Dark Side of carry out. We got Cindy H to do it – I always said there’s hope for you. You’re right about the hospital making you crazy. The problem is they won’t give ME any meds! Greg promised to share, though.
Our Patient is doing well. In hospital speak, he is at "Day Minus One," meaning one day prior to transplant. Today is his "Day of Rest," although, as I said earlier its impossible to really rest in here. But, he’s doing his best. So far so good. No real side effects from the chemo, though they’ve promised its coming – mouth sores, fevers, and this horrible intestinal thing called "C-Dif" which is short for "You’re Gonna Want To Die." I’d say more on that later, but, you don’t want to know the gory details. They’re continuing to pump fluids (so of course he had to go on Lasix yesterday), as well as steroids. So, blood sugar has again become an issue. He’s been eating very carefully, and we’ve been taking walks, but the steroids continue throughout the week, so insulin is also on the menu. Yuk.
We’re both going to try to get some work done today, as daytime TV really sucks. I’m trying to go on some sort of outing every day, too, so we don’t BOTH go completely psychotic in here. Yesterday, it was the grocery store. I’m hoping for something a little more exciting today.
Grandma & Auntie Skibby are keeping the boys busy. Yesterday they went to the zoo, and the mall may be on the list for today. At the grocery store yesterday, Eric talked Matthew into asking for Spam. They actually "cooked" some, & he liked it. Someone please call DFS and save my baby!
That’s all to report today. I’m glad we’re boring, because exciting around here usually isn’t good. We hear from the nurses that there are some really ill people on this floor, and I see some really stressed-out families in the halls. So, every day we thank God Greg is doing so well.
Thanks to all for the comments & support. We look forward to them!
Love,
Us
First, to reply to the comments from yesterday: Yes, they made enough cookies. However, they’re all gone. Kim, I’M not sure I can handle you getting domestic all of a sudden! But, I always knew you’d come over from the Dark Side of carry out. We got Cindy H to do it – I always said there’s hope for you. You’re right about the hospital making you crazy. The problem is they won’t give ME any meds! Greg promised to share, though.
Our Patient is doing well. In hospital speak, he is at "Day Minus One," meaning one day prior to transplant. Today is his "Day of Rest," although, as I said earlier its impossible to really rest in here. But, he’s doing his best. So far so good. No real side effects from the chemo, though they’ve promised its coming – mouth sores, fevers, and this horrible intestinal thing called "C-Dif" which is short for "You’re Gonna Want To Die." I’d say more on that later, but, you don’t want to know the gory details. They’re continuing to pump fluids (so of course he had to go on Lasix yesterday), as well as steroids. So, blood sugar has again become an issue. He’s been eating very carefully, and we’ve been taking walks, but the steroids continue throughout the week, so insulin is also on the menu. Yuk.
We’re both going to try to get some work done today, as daytime TV really sucks. I’m trying to go on some sort of outing every day, too, so we don’t BOTH go completely psychotic in here. Yesterday, it was the grocery store. I’m hoping for something a little more exciting today.
Grandma & Auntie Skibby are keeping the boys busy. Yesterday they went to the zoo, and the mall may be on the list for today. At the grocery store yesterday, Eric talked Matthew into asking for Spam. They actually "cooked" some, & he liked it. Someone please call DFS and save my baby!
That’s all to report today. I’m glad we’re boring, because exciting around here usually isn’t good. We hear from the nurses that there are some really ill people on this floor, and I see some really stressed-out families in the halls. So, every day we thank God Greg is doing so well.
Thanks to all for the comments & support. We look forward to them!
Love,
Us
Monday, June 23, 2008
And......He's Off!
Grandma and Auntie Skibby arrived Saturday night, armed with cookies. Matthew & Eric were thrilled to see them. They were glad to see Grandma & Auntie Skibby, too.
Greg and I left home early Sunday morning, to leave enough time to drop my stuff off at my "summer home" and get Greg one last good meal before 3 weeks of hospital food. We arrived at the hospital at 1:55 as we were told he was to check in no later than 2:00. When we got here & told them Greg was here to check in, the nurses looked at us as if we were from another planet. The nurse said, "And you are...?" And Greg said, "Sick!" Seems they don't do things that way (even tho we were just doing what we were told). "Oh, no sir. We call you when we have a room ready. We don't just give you a time to come in!" Luckily, he was on the Sunday list, and a woman was in the process of checking out. She just wasn't gone yet. They assured us it wouldn't be more than an hour. So, we wandered around the hospital for 2 1/2 hours, until they finally called us. Got Greg settled in, answered the same questions 10 times to 10 different people, and waited, and waited, and waited....for them to bring his first dose of chemo. 8:00 they told us. 8 came & went. 9:00. 9 came & went. I finally left, as I was exhausted. Finally at 10:10 p.m. they gave him his first round. They're also keeping him WELL hydrated, so he was up all night. A hospital is no place to get rest!
This morning, we were visited by about 8 more people who asked all the same questions we already answered last night. Which of course makes our patient Patient very happy. I've only had to peel him off the ceiling 3 times so far (he's also getting steroids, which only help the situation!)
But we're here & we're going. His room has a good view, its quiet, and we're settling in. Even the food isn't too bad. He'll be getting his second and final round of chemo in a few minutes. This is strong stuff! His counts should zero out sometime today. He has to wear a mask whenever he leaves the room, and I've used more hand sanitizer in the last 18 hours that I've used in the last year.
That's about it for today. Thanks to all for your continuing support. We couldn't do it without you!
Love,
Greg & Ann
Greg and I left home early Sunday morning, to leave enough time to drop my stuff off at my "summer home" and get Greg one last good meal before 3 weeks of hospital food. We arrived at the hospital at 1:55 as we were told he was to check in no later than 2:00. When we got here & told them Greg was here to check in, the nurses looked at us as if we were from another planet. The nurse said, "And you are...?" And Greg said, "Sick!" Seems they don't do things that way (even tho we were just doing what we were told). "Oh, no sir. We call you when we have a room ready. We don't just give you a time to come in!" Luckily, he was on the Sunday list, and a woman was in the process of checking out. She just wasn't gone yet. They assured us it wouldn't be more than an hour. So, we wandered around the hospital for 2 1/2 hours, until they finally called us. Got Greg settled in, answered the same questions 10 times to 10 different people, and waited, and waited, and waited....for them to bring his first dose of chemo. 8:00 they told us. 8 came & went. 9:00. 9 came & went. I finally left, as I was exhausted. Finally at 10:10 p.m. they gave him his first round. They're also keeping him WELL hydrated, so he was up all night. A hospital is no place to get rest!
This morning, we were visited by about 8 more people who asked all the same questions we already answered last night. Which of course makes our patient Patient very happy. I've only had to peel him off the ceiling 3 times so far (he's also getting steroids, which only help the situation!)
But we're here & we're going. His room has a good view, its quiet, and we're settling in. Even the food isn't too bad. He'll be getting his second and final round of chemo in a few minutes. This is strong stuff! His counts should zero out sometime today. He has to wear a mask whenever he leaves the room, and I've used more hand sanitizer in the last 18 hours that I've used in the last year.
That's about it for today. Thanks to all for your continuing support. We couldn't do it without you!
Love,
Greg & Ann
Wednesday, June 18, 2008
Good to Go!
Hi everyone! Sorry about not posting for the last 2 weeks, but nothing much really has happened. Every post would have been: "Greg feels good. Getting rest." That's about it. But, I kinda like it that way. We've had more than our share of drama the past few weeks.
Greg and I traveled to St. Louis yesterday to see Dr. Vij. It was a quick, uneventful visit. (I'm not really sure why we had to be there & I got the impression the doc was thinking the same thing.) Basically, Greg is feeling good, his lab work was OK (white count a little low, but that's to be expected given the disease) & he's set for admission.
He'll be admitted on Sunday (6/22) at 2:00 p.m. They don't waste any time, and will start high-dose chemo immediately. Grandma and Auntie Skibby come Saturday night, & I"ll be going with Greg to stay for the duration. I think I have all of the child-care situation worked out. I hope so, anyway!
I'll start posting regularly again next week.
In the meantime, we can't thank you enough for all the help, prayers & everything everyone is doing to help. We couldn't make it through this without you!
Love,
Us.
Greg and I traveled to St. Louis yesterday to see Dr. Vij. It was a quick, uneventful visit. (I'm not really sure why we had to be there & I got the impression the doc was thinking the same thing.) Basically, Greg is feeling good, his lab work was OK (white count a little low, but that's to be expected given the disease) & he's set for admission.
He'll be admitted on Sunday (6/22) at 2:00 p.m. They don't waste any time, and will start high-dose chemo immediately. Grandma and Auntie Skibby come Saturday night, & I"ll be going with Greg to stay for the duration. I think I have all of the child-care situation worked out. I hope so, anyway!
I'll start posting regularly again next week.
In the meantime, we can't thank you enough for all the help, prayers & everything everyone is doing to help. We couldn't make it through this without you!
Love,
Us.
Monday, June 9, 2008
Transplant 2.0
Sounds like a new version of software.
The good news this a.m. is, that with the stem cells collected Friday, Greg now has a Grand Total of 2.0 units! The nurse told him its in 12 bags, so, because of volume issues, they have to give it back to him over 3 days. I have no idea what this means in terms of risk or complications, but we see the doctor on the 17th, so we'll find out then.
We will also find out then when his new admission date is. "Possibly" the 23rd, is what we're being told, but it depends on Greg's health. Since he feels good now, and isn't experiencing any major problems, we're betting on admission the 23rd. So, I'm going to go ahead & start arranging child care assuming we're going that date. I've heard from Judy and Debbie on possible dates they're available, and sent an e-mail to Skibby. I'll start calling people tonight & throughout the week to begin making a schedule.
Greg got home Friday night, & we've spent the weekend eating, sleeping and playing, pretty much. Its great having him home.
Again, we can't thank you all enough for your thoughts, prayers, good wishes, mojo, karma & everything else you all did for us and continue to do for us. We really couldn't be getting through this without the support of such wonderful family and friends (and a whole bunch of people we haven't even met!). I won't be posting as often now that Greg is home & just resting, but I do have pics of his "final haircut" when I shaved the last bit of fuzz from his head, which I'll try to post in a day or two. I'll post after our visit to the doc on the 17th, & then try to post daily when he's admitted in St. L.
Thanks again to all!
Love,
Us
The good news this a.m. is, that with the stem cells collected Friday, Greg now has a Grand Total of 2.0 units! The nurse told him its in 12 bags, so, because of volume issues, they have to give it back to him over 3 days. I have no idea what this means in terms of risk or complications, but we see the doctor on the 17th, so we'll find out then.
We will also find out then when his new admission date is. "Possibly" the 23rd, is what we're being told, but it depends on Greg's health. Since he feels good now, and isn't experiencing any major problems, we're betting on admission the 23rd. So, I'm going to go ahead & start arranging child care assuming we're going that date. I've heard from Judy and Debbie on possible dates they're available, and sent an e-mail to Skibby. I'll start calling people tonight & throughout the week to begin making a schedule.
Greg got home Friday night, & we've spent the weekend eating, sleeping and playing, pretty much. Its great having him home.
Again, we can't thank you all enough for your thoughts, prayers, good wishes, mojo, karma & everything else you all did for us and continue to do for us. We really couldn't be getting through this without the support of such wonderful family and friends (and a whole bunch of people we haven't even met!). I won't be posting as often now that Greg is home & just resting, but I do have pics of his "final haircut" when I shaved the last bit of fuzz from his head, which I'll try to post in a day or two. I'll post after our visit to the doc on the 17th, & then try to post daily when he's admitted in St. L.
Thanks again to all!
Love,
Us
Friday, June 6, 2008
Coming Home -- Need Bananas
That really was the voice mail message I received this morning from my hubby....
When we last left Our Hero, he was at 1.5 units of stem cells. Happy to report that he produced 0.2 more yesterday, so has reached his mandatory minimum of 1.7 (tho we still hope for a few more!) So, they've hooked him up again today, trying for more. But, we have reached the magic number for the transplant. Considering where he was a week ago, this is VERY good news. 2.5 would've been ideal, as its safer, but we'll take what we have. (We'll ask the doctor when we see him the 17th for the specifics about the risks associated with using less than 2.5 units). Still hoping to squeeze out 0.3 more, though. They're going to keep him a little longer today, but his blood counts (reds, whites, plateletes) have started dropping, indicating that he's probably "tapped out." At least for this go-round. Depending on what they collect today, they may just give him 2 weeks of rest before the transplant, or they may rest him a week, then try to collect again. Hard to say at this point.
All week long, as they've been collecting stem cells, they've had to fill him full of IV fluids, to keep him from getting dehyrated. Naturally, now he has too many fluids on board, so they have to give him Lassix (a diuretic, not the eye surgery) to take the fluids off. Hence, the bananas. (They replace the potassium lost through the Lassix). Imagine, Barnes Hospital, one of the top 10 hospitals in the country, is sending him home with a prescription for. . . bananas. Isn't modern medicine fascinating? I'm just so jazzed he gets to come home, I'm planning banana pizza, banana pot roast, banana pancakes, banana fritters, banana's on a stick, banana daquiris, banana gumbo, banana sandwiches, you name it. Send Banana recipes. (Debbie, didn't you write the book on banana recipes?) Actually, the whole banana episode should be over in a day or two, and he probably only needs to eat two or three. Then, he should be normal (whatever that is).
So, here's the new timetable as of 11:30 this a.m.:
We are definitely tentative for admission on June 23. How's that for certainty? I assume they'll call him to let him know what he collects today, but you know what they say when you assume....
In the meantime, I would be remiss if I didn't address some of yesterday's comments.
Ginger, most of what Judy said about the Potato Salad Legend is correct, except, its not a Legend (its true), there was no Empress, she wasn't beautiful, the potato salad did not taste good, the family wasn't mean and ungrateful, and the whining and complaining was certainly justified. Actually, I think the only true thing she said was that the potato salad was unattractive (to say the least). I'll leave it at that -- your imagination can fill in the rest. Needless to say, I'm beginning(?) to think that both of my sisters are delusional (I'm really the only sane one in the family.)
Dave: I certainly thought of you and all the other parents of every goalie on the planet when I watched that replay.
Shelly G: Thanks for the thoughts & good wishes. But, if you take Judy's kids, you have to take my crazy sisters, too. Better yet, just send them, and you bring the cheesecake here.
Obviously, everyone is in a MUCH better mood today than we've been in at least a week. Thanks to all for the prayers, the good wishes, the comments & the laughs. We need a little comic relief now & then. Your love & support means the world to us all.
Love,
Us
P.S. Ian, I'm posting this now, so you'd better get your comment in before Judy. I may not post again for a few days, so this may be your last big chance to tick her off for a while.
P.P.S. The Mister Potato Head was a "mercy trophy." I don't recall eating any potato OR pasta salad last summer.
When we last left Our Hero, he was at 1.5 units of stem cells. Happy to report that he produced 0.2 more yesterday, so has reached his mandatory minimum of 1.7 (tho we still hope for a few more!) So, they've hooked him up again today, trying for more. But, we have reached the magic number for the transplant. Considering where he was a week ago, this is VERY good news. 2.5 would've been ideal, as its safer, but we'll take what we have. (We'll ask the doctor when we see him the 17th for the specifics about the risks associated with using less than 2.5 units). Still hoping to squeeze out 0.3 more, though. They're going to keep him a little longer today, but his blood counts (reds, whites, plateletes) have started dropping, indicating that he's probably "tapped out." At least for this go-round. Depending on what they collect today, they may just give him 2 weeks of rest before the transplant, or they may rest him a week, then try to collect again. Hard to say at this point.
All week long, as they've been collecting stem cells, they've had to fill him full of IV fluids, to keep him from getting dehyrated. Naturally, now he has too many fluids on board, so they have to give him Lassix (a diuretic, not the eye surgery) to take the fluids off. Hence, the bananas. (They replace the potassium lost through the Lassix). Imagine, Barnes Hospital, one of the top 10 hospitals in the country, is sending him home with a prescription for. . . bananas. Isn't modern medicine fascinating? I'm just so jazzed he gets to come home, I'm planning banana pizza, banana pot roast, banana pancakes, banana fritters, banana's on a stick, banana daquiris, banana gumbo, banana sandwiches, you name it. Send Banana recipes. (Debbie, didn't you write the book on banana recipes?) Actually, the whole banana episode should be over in a day or two, and he probably only needs to eat two or three. Then, he should be normal (whatever that is).
So, here's the new timetable as of 11:30 this a.m.:
We are definitely tentative for admission on June 23. How's that for certainty? I assume they'll call him to let him know what he collects today, but you know what they say when you assume....
In the meantime, I would be remiss if I didn't address some of yesterday's comments.
Ginger, most of what Judy said about the Potato Salad Legend is correct, except, its not a Legend (its true), there was no Empress, she wasn't beautiful, the potato salad did not taste good, the family wasn't mean and ungrateful, and the whining and complaining was certainly justified. Actually, I think the only true thing she said was that the potato salad was unattractive (to say the least). I'll leave it at that -- your imagination can fill in the rest. Needless to say, I'm beginning(?) to think that both of my sisters are delusional (I'm really the only sane one in the family.)
Dave: I certainly thought of you and all the other parents of every goalie on the planet when I watched that replay.
Shelly G: Thanks for the thoughts & good wishes. But, if you take Judy's kids, you have to take my crazy sisters, too. Better yet, just send them, and you bring the cheesecake here.
Obviously, everyone is in a MUCH better mood today than we've been in at least a week. Thanks to all for the prayers, the good wishes, the comments & the laughs. We need a little comic relief now & then. Your love & support means the world to us all.
Love,
Us
P.S. Ian, I'm posting this now, so you'd better get your comment in before Judy. I may not post again for a few days, so this may be your last big chance to tick her off for a while.
P.P.S. The Mister Potato Head was a "mercy trophy." I don't recall eating any potato OR pasta salad last summer.
Thursday, June 5, 2008
Thursday
I couldn't think of a catchy title for today....
Just a quick update: Greg collected 0.11 units yesterday, giving a grand total of 1.5. (See previous posts for the Ph.D. explanation of the math involved).
OK, NOW they're talking about possibly collecting through tomorrow, and then giving him a few days rest, bringing him back mid-week next week, starting growth factor again, then collecting more the following week. It really does depend on who we talk to. This stuff changes by the minute. Of course, that's not definite, either. If they do that, then the 6/23 admission may not be a go (or, it might be a go. Sigh.). Hopefully, we'll know more Friday or Saturday, but probably not, at the rate things are going. Anyway, to all the wonderful people who are waiting in the wings to help me with the munchkins, why not put a hold on any plans at least until this weekend. Maybe then we can hammer out a plan? I hate to leave you all hanging, and I appreciate all you're doing to try to work this out, arrange vacation time etc. I wish things were more definite. Hopefuly, we'll know more soon. As always, I'll keep you posted!
Thanks to all! Keep praying! (We're getting there...)
Love,
Us
Just a quick update: Greg collected 0.11 units yesterday, giving a grand total of 1.5. (See previous posts for the Ph.D. explanation of the math involved).
OK, NOW they're talking about possibly collecting through tomorrow, and then giving him a few days rest, bringing him back mid-week next week, starting growth factor again, then collecting more the following week. It really does depend on who we talk to. This stuff changes by the minute. Of course, that's not definite, either. If they do that, then the 6/23 admission may not be a go (or, it might be a go. Sigh.). Hopefully, we'll know more Friday or Saturday, but probably not, at the rate things are going. Anyway, to all the wonderful people who are waiting in the wings to help me with the munchkins, why not put a hold on any plans at least until this weekend. Maybe then we can hammer out a plan? I hate to leave you all hanging, and I appreciate all you're doing to try to work this out, arrange vacation time etc. I wish things were more definite. Hopefuly, we'll know more soon. As always, I'll keep you posted!
Thanks to all! Keep praying! (We're getting there...)
Love,
Us
Wednesday, June 4, 2008
The Tortoise and the Hair
Or lack thereof.
I keep forgetting to blog this, but Greg's hair did finally start falling out late last week. I say finally, because, according to the literature, it was supposed to fall out about a week earlier. But, as I've said before, he never really does anything he's supposed to do. He tells me there's not much left. I'll try to post a pic when I can. Send sunscreen!
Special thanks to the Connor family for thinking of me yesterday. It was just what I needed and really brightened my day.
Talked to Greg this morning. They got another 0.2 units yesterday. Going in the right direction! That makes a grand total of 1.4 units. Altho I blogged yesterday that we need 1.7, his doc wants to get 2.0, just to be on the safe side. (It seems the information changes by the minute -- depending upon who we talk to.) If he keeps up the way he has, we could have this by the end of the week. Keep bugging the Big Guy (and no, Ian, you don't have to show your work).
Yesterday we got the new, very tentative, schedule. The admission date of next Monday, June 9, is definitely off. If he can complete the collection by the end of the week, the new plan is to give him two weeks off to rest his bone marrow and admit on Monday, June 23. We would see the doc in St. L on the previous Tuesday, June 17. If we don't complete collection, then we have no idea what the plan will be. But, lets think positive, right?
He's gotten 2 transfusions over the last week or so, and he'll get plateletes today. Other than that, I'm just encouraging him to rest, rest, rest so he can continue producing those stem cells. He's getting pretty bored, as there's only so much TV you can watch, but there's a hockey game tonight, and Debbie left him with DVDs of Gilligan's Island, Green Acres, and My Favorite Martian, among others. Oh, joy.
Thanks to all for the love, prayers and support. I really can't tell you how much it means to all of us.
Love,
Greg, Ann, Eric & Matthew
I keep forgetting to blog this, but Greg's hair did finally start falling out late last week. I say finally, because, according to the literature, it was supposed to fall out about a week earlier. But, as I've said before, he never really does anything he's supposed to do. He tells me there's not much left. I'll try to post a pic when I can. Send sunscreen!
Special thanks to the Connor family for thinking of me yesterday. It was just what I needed and really brightened my day.
Talked to Greg this morning. They got another 0.2 units yesterday. Going in the right direction! That makes a grand total of 1.4 units. Altho I blogged yesterday that we need 1.7, his doc wants to get 2.0, just to be on the safe side. (It seems the information changes by the minute -- depending upon who we talk to.) If he keeps up the way he has, we could have this by the end of the week. Keep bugging the Big Guy (and no, Ian, you don't have to show your work).
Yesterday we got the new, very tentative, schedule. The admission date of next Monday, June 9, is definitely off. If he can complete the collection by the end of the week, the new plan is to give him two weeks off to rest his bone marrow and admit on Monday, June 23. We would see the doc in St. L on the previous Tuesday, June 17. If we don't complete collection, then we have no idea what the plan will be. But, lets think positive, right?
He's gotten 2 transfusions over the last week or so, and he'll get plateletes today. Other than that, I'm just encouraging him to rest, rest, rest so he can continue producing those stem cells. He's getting pretty bored, as there's only so much TV you can watch, but there's a hockey game tonight, and Debbie left him with DVDs of Gilligan's Island, Green Acres, and My Favorite Martian, among others. Oh, joy.
Thanks to all for the love, prayers and support. I really can't tell you how much it means to all of us.
Love,
Greg, Ann, Eric & Matthew
Tuesday, June 3, 2008
Slow & Steady Wins, Right?
Well, some good news to report.
Greg just called, and they're continuing collecting again today. Yesterday they got 0.2 units. That's not great, but its frankly better than either of us expected. Bear with me here, because there's math involved, but I'll try to summarize the situation as best I can.
One million cells equals 1 unit. They ordered 5 units -- enough for two transplants. There's no way we'll get that at this rate. However, for a full transplant, they need 2.5 units. Its probably unlikely we'll get that either (Greg is wondering: "What's with this 'we' s--t?"). Anyway, the grand total of stem cells collected thus far is 1.2 units, including the .9 they got last year. If he can get 1.7 units (just need .5 more), we can do what's called a "mini auto," short for mini autologous stem cell transplant. The way I understand it is, they do the same process, just by giving him less cells (kinda like a mandatory minimum). The drawback is that the risk of complications rises a bit, and recovery may take longer. But, the doc wants to keep going, so he's hooked up again today. Keep your fingers crossed.
Greg is going to try to talk to the nurse coordinator today to see if they think we're still on track for admission next Monday or not. I know a lot of people have rearranged their schedules to take care of the kids & otherwise help out. I'll let you all know just as soon as I do.
I know a lot of people have been trying to reach us by phone the last few days, but its been hard to get back to everyone. Frankly, last night we were both too tired to really talk to anyone. I'll try to return some calls tonight, but I have so little time with the kids each day, its usually after 8:30 before I can really talk. We really do appreciate all your support.
Thanks, too, for all the comments & good wishes. Altho we can't respond to all, we read them, enjoy them & look forward to them. Oh, and someday, when I have a little more energy, I'll tell you all about Debbie getting lost in a thunderstorm in St. L Friday night, and Greg & I "talking" her in on the phone using our map. It was like talking down the space shuttle. I think she went by the Arch about 4 times, & at one point was on her way to Kansas City. This may replace the Great Potato Salad Incident in Family Lore (but probably not).
Thanks again to all. I'll post again when I have more news.
Love,
Greg, Ann, Eric & Matthew
Greg just called, and they're continuing collecting again today. Yesterday they got 0.2 units. That's not great, but its frankly better than either of us expected. Bear with me here, because there's math involved, but I'll try to summarize the situation as best I can.
One million cells equals 1 unit. They ordered 5 units -- enough for two transplants. There's no way we'll get that at this rate. However, for a full transplant, they need 2.5 units. Its probably unlikely we'll get that either (Greg is wondering: "What's with this 'we' s--t?"). Anyway, the grand total of stem cells collected thus far is 1.2 units, including the .9 they got last year. If he can get 1.7 units (just need .5 more), we can do what's called a "mini auto," short for mini autologous stem cell transplant. The way I understand it is, they do the same process, just by giving him less cells (kinda like a mandatory minimum). The drawback is that the risk of complications rises a bit, and recovery may take longer. But, the doc wants to keep going, so he's hooked up again today. Keep your fingers crossed.
Greg is going to try to talk to the nurse coordinator today to see if they think we're still on track for admission next Monday or not. I know a lot of people have rearranged their schedules to take care of the kids & otherwise help out. I'll let you all know just as soon as I do.
I know a lot of people have been trying to reach us by phone the last few days, but its been hard to get back to everyone. Frankly, last night we were both too tired to really talk to anyone. I'll try to return some calls tonight, but I have so little time with the kids each day, its usually after 8:30 before I can really talk. We really do appreciate all your support.
Thanks, too, for all the comments & good wishes. Altho we can't respond to all, we read them, enjoy them & look forward to them. Oh, and someday, when I have a little more energy, I'll tell you all about Debbie getting lost in a thunderstorm in St. L Friday night, and Greg & I "talking" her in on the phone using our map. It was like talking down the space shuttle. I think she went by the Arch about 4 times, & at one point was on her way to Kansas City. This may replace the Great Potato Salad Incident in Family Lore (but probably not).
Thanks again to all. I'll post again when I have more news.
Love,
Greg, Ann, Eric & Matthew
Friday, May 30, 2008
Friday Update
Thanks for all the good wishes and prayers. We sure need them about now. We're still trying to figure all this out, so bear with us.
Greg went to clinic this morning, and found out yesterday's count. Basically, they were not able to collect ANY stem cells Thursday. That's not good. Typically, the collection begins 12 to 14 days after getting the Cytoxan. They began on day 14. The first day is supposed to net the highest number of cells. But, when has Greg ever done anything according to the protocols?
Greg had a long chat with his nurse-coordinator, and they discussed his entire history. He really never has done anything according to plan. He doesn't respond well to chemo, and he's usually late when he does. For example, his white counts always come back much later than the literature says they should. So, one possible theory is that he's a "late bloomer." Maybe he will release his stem cells later than he should. Based on that possibility, they did not attempt to collect any stem cells today. Instead, they gave him another shot of growth factor, and will do that again Saturday & Sunday. Then, they'll try to collect again on Monday. We won't get the count until Tuesday a.m. Basically, we're in a holding pattern until then. But, I can't underestimate how serious this is. No stem cells means no transplant. At least not this kind of transplant. This is not unheard of, but its not usual, either. Sigh. We haven't really been told what we do if this attempt to collect fails. So, direct lines to the Big Guy Upstairs are definitely warranted. Thanks to all for your love & support.
Matthew and I came up to St. L today and are spending the weekend. Eric had to work, so he's taking his first solo at home. The neighbors will let me know how good the parties are.... Note to Eric: When my parents left me home alone for the weekend, the house was always cleaner when they got home than when they left. (Of course, in this case, that means you have A LOT of work to do!)
We plan to just try to relax & enjoy the weekend, as its all out of our control anyway. My oldest sister, Debbie, (she hates when I call her "oldest") is on her way here from Cudahy tonight with her two youngest girls, Larisa (17) and Kacey (15). Matthew is looking forward to seeing his cousins. They love playing with him. The duplex will be very cozy. Matthew gets to sleep in the kitchen. We plan to go to the zoo tomorrow. Greg continues to feel good, so we'll take that as a positive sign.
Tonight, we went to Zia's restaurant, on the "Hill" per the recommendation of Daniel & Judge England. Judge, you were right, the Chicken Spedini Proscuitto was great! Greg ordered Chicken Parmesean, and had entree envy. Ted Drew's Custard tomorrow.
So, I may not have much to report again until Tuesday. Meanwhile, we really can't thank all of you enough for all your support.
Love,
Us
Greg went to clinic this morning, and found out yesterday's count. Basically, they were not able to collect ANY stem cells Thursday. That's not good. Typically, the collection begins 12 to 14 days after getting the Cytoxan. They began on day 14. The first day is supposed to net the highest number of cells. But, when has Greg ever done anything according to the protocols?
Greg had a long chat with his nurse-coordinator, and they discussed his entire history. He really never has done anything according to plan. He doesn't respond well to chemo, and he's usually late when he does. For example, his white counts always come back much later than the literature says they should. So, one possible theory is that he's a "late bloomer." Maybe he will release his stem cells later than he should. Based on that possibility, they did not attempt to collect any stem cells today. Instead, they gave him another shot of growth factor, and will do that again Saturday & Sunday. Then, they'll try to collect again on Monday. We won't get the count until Tuesday a.m. Basically, we're in a holding pattern until then. But, I can't underestimate how serious this is. No stem cells means no transplant. At least not this kind of transplant. This is not unheard of, but its not usual, either. Sigh. We haven't really been told what we do if this attempt to collect fails. So, direct lines to the Big Guy Upstairs are definitely warranted. Thanks to all for your love & support.
Matthew and I came up to St. L today and are spending the weekend. Eric had to work, so he's taking his first solo at home. The neighbors will let me know how good the parties are.... Note to Eric: When my parents left me home alone for the weekend, the house was always cleaner when they got home than when they left. (Of course, in this case, that means you have A LOT of work to do!)
We plan to just try to relax & enjoy the weekend, as its all out of our control anyway. My oldest sister, Debbie, (she hates when I call her "oldest") is on her way here from Cudahy tonight with her two youngest girls, Larisa (17) and Kacey (15). Matthew is looking forward to seeing his cousins. They love playing with him. The duplex will be very cozy. Matthew gets to sleep in the kitchen. We plan to go to the zoo tomorrow. Greg continues to feel good, so we'll take that as a positive sign.
Tonight, we went to Zia's restaurant, on the "Hill" per the recommendation of Daniel & Judge England. Judge, you were right, the Chicken Spedini Proscuitto was great! Greg ordered Chicken Parmesean, and had entree envy. Ted Drew's Custard tomorrow.
So, I may not have much to report again until Tuesday. Meanwhile, we really can't thank all of you enough for all your support.
Love,
Us
Thursday, May 29, 2008
Numbers
Well, yesterday's collection didn't go as well as we wanted. Greg only collected 0.1 units. This is pretty discouraging, since usually the first day is the best day. Greg had a long talk with the resident, who met with the doc in charge of pheresis. The plan is to try again today, and see how many they get. If the number goes up, then we can probably continue to collect. If not, they'll try to come up with another plan.
Lisa, I like your idea about finding a stem cell broker. I'll "Google" that.
Will keep you all posted.
Thanks for all the support.
Love,
Us
Lisa, I like your idea about finding a stem cell broker. I'll "Google" that.
Will keep you all posted.
Thanks for all the support.
Love,
Us
Wednesday, May 28, 2008
Harvest Time!
Its 9:30 and Greg is in the chair & hooked up to the machine! His white count made it over 5, so they're harvesting the stem cells. We thought they were going to harvest a total of 2.5 million, but the orders say to harvest 5 million. We're a little confused as to why, because we understood that 2.5 are needed per transplant. Maybe (pure speculation) they plan to bank some for another transplant down the road? Of course, it would be helpful to speak to the doc, but all we're seeing is the nurses (who are wonderful and knowledgeable, but sometimes give conflicting info). So, with the .9 he has in the bank from last year, he needs 4.1 total. Hopefully, he can do this over the next 3 days.
They will harvest for about 4 hours, then it goes to the lab to be counted. He'll get a call tonight, anywhere from 7 to 9 p.m., letting him know how many they got & whether he has to come back tomorrow. (Pity the poor slob who has to count all those: "One, two, three, four......" I guess it takes a while to get to 5 million. What if he loses count?)
Thanks to all for the great comments. They really help to lighten things up, and Greg really enjoys reading them. Keep it up!
And,
PRAY!!!
Thanks!
Us
They will harvest for about 4 hours, then it goes to the lab to be counted. He'll get a call tonight, anywhere from 7 to 9 p.m., letting him know how many they got & whether he has to come back tomorrow. (Pity the poor slob who has to count all those: "One, two, three, four......" I guess it takes a while to get to 5 million. What if he loses count?)
Thanks to all for the great comments. They really help to lighten things up, and Greg really enjoys reading them. Keep it up!
And,
PRAY!!!
Thanks!
Us
Monday, May 26, 2008
Home Sweet Home
There's no place like home!
The boys and I went up to visit Greg this weekend. It was a quick trip, because Eric worked until 8 on Saturday night, and had to be back to work at 12:45 today. Got to St.L about 11:30 Saturday night. Both boys slept most of the way up. Once we got there, Matthew was really cranked up & finally fell back asleep about 4 a.m. He and his dad had a great time. Eric & I were snoring.......
Speaking of snoring, the last photo above is them "watching" Indy. Exciting race......
Well, the duplex is REALLY small (if you can't already tell from the pics). But, its very pleasant inside, and Toni (the owner) has made every effort to make it seem like a home. She has 8 or 10 units in the same general area. Most people who rent from her are those who've had lung transplants, and end up staying for 3 months or more. I didn't get any pics of the basement, but there's a washer & dryer, and two twin beds down there. To give you an idea of what its like, both Eric & Matthew said, "I'm not sleeping down there!" They slept on a blow up mattress in the living room -- after we removed some of the furniture to make it fit. Very cozy.
Don't really have much to report on the medical side. Greg went to clinic every day, but since its the weekend, they didn't order any labs. I'm not sure why, as you don't suddenly get better just because its the weekend. The nurse went ahead and drew some Sunday, but it was "express" so we didn't get all of his counts. We'll have a much better idea of what's happening tomorrow. He's scheduled to start pheresis tomorrow, but, unless his counts have improved dramatically in a short period, I don't think that's likely. So, time to knock on the Big Guy's door again.
Enjoy the pics.
Love,
Us
P.S. Quick Tuesday morning update:
Its almost 10 a.m. Greg's plateletes are good, and his whites are over 4. Ian, you'll be happy to know that he's no longer neutropenic. (I wonder if that had something do to with my visit this weekend?) Anyway, altho its a day later than we wanted, it looks like he'll be able to start pheresis tomorrow (Wednesday). It can take about 4 days, and they don't collect on the weekend, so that's a bit of a bummer, but all in all, not bad news.
More details as they develop.....
Friday, May 23, 2008
"Rocco, I'm sure gonna miss ya"
Well, we had a little scare yesterday a.m. when Greg showed up at the clinic extrememly tired -- way more than he should be. Turns out he was very dehydrated, his pulse was 160, and his blood sugar was off the charts (over 400). As you saw from the last post, he wasn't eating the most healthy, but, he wasn't gorging on sugar and junk, either. His white count was really low, too. I thought I was going to be making an unscheduled trip to St.L.
They got him hydrated, and gave him an IV antibiotic prophylactically. He felt a lot better. He was good and ate more carefully yesterday. However, Rocco and the boys sure are gonna miss him!
Today, his blood sugar was still high (300), even with the good diet. So, there's a possibility an infection is lurking. The nurse explained that with his whites so low, and the blood sugar so high, that's one possible explanation. Skibby can probably explain this better, but that's the gist of it. Today they sent him home with a 14 day supply of oral antibiotics. But, he's feeling MUCH better.
This diet thing is going to be tricky, though. High blood sugar means no carbs. He's neutropenic, so no fresh fruits or veggies. Also, he can't have a lot of protien, as its hard on your kidneys, something multiple myeloma patients really have to watch. I think he's having a stick of butter for lunch.
His platetelets are coming up a few ticks every day, so they haven't needed to transfuse him yet. That's good. The boys and I are going up to see him this weekend. We still hope to start harvesting stem cells early next week.
Thanks for all the prayers. Keep 'em coming!
Love,
Us
They got him hydrated, and gave him an IV antibiotic prophylactically. He felt a lot better. He was good and ate more carefully yesterday. However, Rocco and the boys sure are gonna miss him!
Today, his blood sugar was still high (300), even with the good diet. So, there's a possibility an infection is lurking. The nurse explained that with his whites so low, and the blood sugar so high, that's one possible explanation. Skibby can probably explain this better, but that's the gist of it. Today they sent him home with a 14 day supply of oral antibiotics. But, he's feeling MUCH better.
This diet thing is going to be tricky, though. High blood sugar means no carbs. He's neutropenic, so no fresh fruits or veggies. Also, he can't have a lot of protien, as its hard on your kidneys, something multiple myeloma patients really have to watch. I think he's having a stick of butter for lunch.
His platetelets are coming up a few ticks every day, so they haven't needed to transfuse him yet. That's good. The boys and I are going up to see him this weekend. We still hope to start harvesting stem cells early next week.
Thanks for all the prayers. Keep 'em coming!
Love,
Us
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