Greg needs plateletes again tomorrow. They were still at 16 this week, after receiving a unit last week (20 is the cutoff). Hemoglobin (reds) is up to 9.3 -- after two transfusions over the last two weeks. That's a decent number, so no whole blood needed this week.
Sigh.
He's feeling well, finishing up painting the kitchen. The doc says the most important thing is how he's feeling. Keep praying. Thanks!
Wednesday, February 25, 2009
Thursday, February 19, 2009
Make That a Double
Well, after going four weeks with no transfusions, now he gets two in a row.
Last week his reds were at 6. The double-dose of packed red blood cells got him feeling better (a little more energy) and got his levels up to 8. That is the cutoff, so he gets two more units today.
Also, plateletes were at 16 (20 is the cutoff for transfusions), so he gets that today as well. We suspected the plateletes were low -- his socks were a little too tight and he had some bruising from them. (Note to self: buy more expensive socks.)
So, he gets to spend the day with the nurses at the hospital (this will take a minimum of 5 hours). At least they give him lunch -- and we all know how great the hospital food is!
Last week his reds were at 6. The double-dose of packed red blood cells got him feeling better (a little more energy) and got his levels up to 8. That is the cutoff, so he gets two more units today.
Also, plateletes were at 16 (20 is the cutoff for transfusions), so he gets that today as well. We suspected the plateletes were low -- his socks were a little too tight and he had some bruising from them. (Note to self: buy more expensive socks.)
So, he gets to spend the day with the nurses at the hospital (this will take a minimum of 5 hours). At least they give him lunch -- and we all know how great the hospital food is!
Wednesday, February 11, 2009
Four week limit
Well, four weeks seems to be about the limit. Greg needed whole blood this week, and got 2 units yesterday. We knew it was coming -- he was REALLY tired all weekend. But, he got his tank topped off and feels much better.
Plateletes were OK, and ANC is low, so lots of hand washing. We're used to that, though.
That's about all for now. We don't see the doc again until March 6.
Thanks for all the support!
Plateletes were OK, and ANC is low, so lots of hand washing. We're used to that, though.
That's about all for now. We don't see the doc again until March 6.
Thanks for all the support!
Tuesday, February 3, 2009
Yesterday's Labs
Greg had his blood drawn yesterday & all his lab work was still stable. No transfusions for the 4th week running! Woo Hoo!
Keep the prayers coming!
Keep the prayers coming!
Wednesday, January 28, 2009
Steady
Labs were steady again this week. No transfusions. Yea!
Its a game of inches......
Oh, and for you non-locals, we had a major ice/snow storm here starting Monday afternoon. Of course, nothing was salted at the clinic, and Greg slipped and fell while leaving. Not good for someone with brittle bones and no plateletes. Fortunately, although his knee and hip were a little sore for a few days, they are much better now. It appears no permanent damage.
The boys have all been home for two days now. Got the kitchen painted!
Its a game of inches......
Oh, and for you non-locals, we had a major ice/snow storm here starting Monday afternoon. Of course, nothing was salted at the clinic, and Greg slipped and fell while leaving. Not good for someone with brittle bones and no plateletes. Fortunately, although his knee and hip were a little sore for a few days, they are much better now. It appears no permanent damage.
The boys have all been home for two days now. Got the kitchen painted!
Thursday, January 22, 2009
Thursday, January 22, 1009
Well, we got the long-awaited results from St. Louis, and, unfortunately, its not very good news.
The biopsy confirms what Dr. Vij has long suspected -- Greg does have Myelodisplastic Syndrome (if you're new here it means his bone marrow is so damaged it doesn't produce enough red cells, white cells or platelets). Its sometimes called "Pre-Leukemia."
In addition, his Multiple Myeloma is now officially out of remission. He had 32 percent cancer cells in this last biopsy. Back in September he was at 18 percent. Twenty percent is the cutoff for "partial remission." So, the cancer is back, too.
And, to top all that off, neither Tom nor Skibby was a match to be a donor for an allogeneic stem cell transplant. So, now they're searching for an unrelated donor match, and IF they find one (huge "if"), the transplant itself will be very risky. If you're interesting in becoming a donor, here's the web site: http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html I signed up last year, but haven't been called by anyone to do it. There's a fee involved, and also an age limit (I think 55 or 60). And, I don't want to raise a lot of false hope for people, either. He probably needs some guy named Stanislaus over in Brataslava to sign up in order to find a match.
Greg had his labs drawn locally yesterday (he goes once a week now), and those numbers, while low, were stable, and for the second week in a row he didn't require a transfusion. So, a little good news.
Now its time to pray they find a match. Dr. Vij still says he's in no hurry to do a transplant. We're just watching and waiting.
This sucks.
The biopsy confirms what Dr. Vij has long suspected -- Greg does have Myelodisplastic Syndrome (if you're new here it means his bone marrow is so damaged it doesn't produce enough red cells, white cells or platelets). Its sometimes called "Pre-Leukemia."
In addition, his Multiple Myeloma is now officially out of remission. He had 32 percent cancer cells in this last biopsy. Back in September he was at 18 percent. Twenty percent is the cutoff for "partial remission." So, the cancer is back, too.
And, to top all that off, neither Tom nor Skibby was a match to be a donor for an allogeneic stem cell transplant. So, now they're searching for an unrelated donor match, and IF they find one (huge "if"), the transplant itself will be very risky. If you're interesting in becoming a donor, here's the web site: http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html I signed up last year, but haven't been called by anyone to do it. There's a fee involved, and also an age limit (I think 55 or 60). And, I don't want to raise a lot of false hope for people, either. He probably needs some guy named Stanislaus over in Brataslava to sign up in order to find a match.
Greg had his labs drawn locally yesterday (he goes once a week now), and those numbers, while low, were stable, and for the second week in a row he didn't require a transfusion. So, a little good news.
Now its time to pray they find a match. Dr. Vij still says he's in no hurry to do a transplant. We're just watching and waiting.
This sucks.
Friday, January 9, 2009
We're Going to DisneyWorld!
We really are. We booked a trip for Spring Break this coming March. We booked it last fall before this whole Myelodisplastic Syndrome thing reared its ugly head.
Dr. Vij looked at Greg's counts over the last few months, and said that although they are low, they haven't gotten any lower, and he's not had any major problems because of them. So he's in no hurry to do the allogeneic transplant at this point. As long as he's not having any major problems (defined as bleeding, frequent transfusions, frequent 'ramonia' or other infections), he doesn't want to rush into it because of the potential life-threatening complications of the allogeneic. So, now we wait, & monitor the counts. That's OK with us. All in all, the doc says he's in pretty good shape, considering. He's still got problems, but not as bad as they could be. We're waiting for them to do the biopsy now to confirm the MDS and see if there's any change to his disease. We won't get the results until next week.
Also, we were supposed to find out today whether or not Tom or Skibby is a match to be a donor for the transplant. While they got the results back from their tests, no one thought to "type" Greg! So, they drew about 13 vials of blood today (no wonder his counts are low!) and we'll find out those results in about 3 weeks.
Once again, thanks to all for your love, prayers, help & support. We'll post new results as we get them.
Love,
Us
Dr. Vij looked at Greg's counts over the last few months, and said that although they are low, they haven't gotten any lower, and he's not had any major problems because of them. So he's in no hurry to do the allogeneic transplant at this point. As long as he's not having any major problems (defined as bleeding, frequent transfusions, frequent 'ramonia' or other infections), he doesn't want to rush into it because of the potential life-threatening complications of the allogeneic. So, now we wait, & monitor the counts. That's OK with us. All in all, the doc says he's in pretty good shape, considering. He's still got problems, but not as bad as they could be. We're waiting for them to do the biopsy now to confirm the MDS and see if there's any change to his disease. We won't get the results until next week.
Also, we were supposed to find out today whether or not Tom or Skibby is a match to be a donor for the transplant. While they got the results back from their tests, no one thought to "type" Greg! So, they drew about 13 vials of blood today (no wonder his counts are low!) and we'll find out those results in about 3 weeks.
Once again, thanks to all for your love, prayers, help & support. We'll post new results as we get them.
Love,
Us
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