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.
Friday, June 6, 2008
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
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