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
Monday, June 30, 2008
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
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