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!
Wednesday, January 28, 2009
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
Friday, January 9, 2009
We’re back in St Louis today. We scheduled this visit last December with Dr. Vij to discuss the allogeneic stem cell transplant. Hopefully today we will find out whether Tom or Skibby (or both!) are a match. If not, we would have to look for an unrelated donor. But, I’ll know more about that later. I figured I’d take this opportunity to update everyone on what happened earlier this week.
Loyal readers will recall that Greg got pneumonia (or "ramonia") in November. He started with fever, and he spent about 4 days in the hospital in Springfield before they transfereed him to Barnes in St. Louis because (we suspect), they didn’t know what to do with him.
Anyway, this past Monday night, about 6 p.m., Greg comes downstairs where Matthew and I were, wearing his coat, hat, gloves & boots. I said, "Where in the world are you going?" "No where. I’m freezing!" Great. Here we go again. Of course, I have about 3,000 fever thermometers in the house, and couldn’t find one. After tearing apart all the bathrooms, I finally find one. He’s at 101.2. I’m supposed to call the doctor if he’s 101 or greater. We decide to monitor for a while, and by 8:30 he’s up to 102. Remembering what happened last time with St. John’s, I called Barnes directly. Five minutes later the BMT Fellow on call calls back & tells me what I already know: they want him there (a 200 mile trip). Sigh. Here we go. We make child care arrangements (Huge Thanks to the Wherleys!), wait for Eric to get home from hockey practice, and pack a bag. We got on the road at about 10:00.
The good news is, there’s not much traffic between here and St. Louis at that time of night, and I was driving, so we got there in record time. We didn’t have to go through the ER, and went directly to the floor, so we were in his room by 2 a.m. The nurse did all the preliminary stuff, and we saw the doctor at 3:30 a.m. The chest X-ray was at 4, and the antibiotics started flowing at 4:30. Good thing he didn’t need any rest! They have a wonderful system there that ensures the IV pump will start beeping (loudly!) just as soon as you begin to nod off. Works like a charm!
Greg had taken a Tylenol prior to leaving the house, as we didn’t want to drive with him in that condition. So, his fever had pretty well abated by the time we got to the hospital, and because they started the antibiotics so quickly, never returned with the intensity he had at home. They spent Tuesday running tests, & cultures, which were all negative (although that’s not uncommon). They never did find out what the culprit was.
As usual, we got conflicting info from each doctor we spoke with. But we talked them into letting him come home on oral antibiotics on Wednesday. They told him he could go home in the morning, but he needed one last dose of each IV antibiotic and platelets (he was at 17!) before we could leave. So, naturally, we got on the road about 5:15. Nothing like rush hour in St. Louis.
Oh, and now, because he’s had so many transfusions, he’s developed antibodies to the blood products. I’m not sure I fully understand it, but basically, if he gets blood containing the certain "bodies" his "antibodies" will eat them up or attack them, causing a reaction. So, now each blood product has to be precreened to make sure he doesn’t receive the ones he attacks. This narrows the pool of blood products he can get, and I guess it narrows more each time he gets a transfusion.
That’s about all for now. Later today, while Greg is getting his biopsy, I’ll try to blog about our meeting with Dr. Vij. Until then, lets all keep our fingers crossed for good news!
Love,
Greg & Ann
Loyal readers will recall that Greg got pneumonia (or "ramonia") in November. He started with fever, and he spent about 4 days in the hospital in Springfield before they transfereed him to Barnes in St. Louis because (we suspect), they didn’t know what to do with him.
Anyway, this past Monday night, about 6 p.m., Greg comes downstairs where Matthew and I were, wearing his coat, hat, gloves & boots. I said, "Where in the world are you going?" "No where. I’m freezing!" Great. Here we go again. Of course, I have about 3,000 fever thermometers in the house, and couldn’t find one. After tearing apart all the bathrooms, I finally find one. He’s at 101.2. I’m supposed to call the doctor if he’s 101 or greater. We decide to monitor for a while, and by 8:30 he’s up to 102. Remembering what happened last time with St. John’s, I called Barnes directly. Five minutes later the BMT Fellow on call calls back & tells me what I already know: they want him there (a 200 mile trip). Sigh. Here we go. We make child care arrangements (Huge Thanks to the Wherleys!), wait for Eric to get home from hockey practice, and pack a bag. We got on the road at about 10:00.
The good news is, there’s not much traffic between here and St. Louis at that time of night, and I was driving, so we got there in record time. We didn’t have to go through the ER, and went directly to the floor, so we were in his room by 2 a.m. The nurse did all the preliminary stuff, and we saw the doctor at 3:30 a.m. The chest X-ray was at 4, and the antibiotics started flowing at 4:30. Good thing he didn’t need any rest! They have a wonderful system there that ensures the IV pump will start beeping (loudly!) just as soon as you begin to nod off. Works like a charm!
Greg had taken a Tylenol prior to leaving the house, as we didn’t want to drive with him in that condition. So, his fever had pretty well abated by the time we got to the hospital, and because they started the antibiotics so quickly, never returned with the intensity he had at home. They spent Tuesday running tests, & cultures, which were all negative (although that’s not uncommon). They never did find out what the culprit was.
As usual, we got conflicting info from each doctor we spoke with. But we talked them into letting him come home on oral antibiotics on Wednesday. They told him he could go home in the morning, but he needed one last dose of each IV antibiotic and platelets (he was at 17!) before we could leave. So, naturally, we got on the road about 5:15. Nothing like rush hour in St. Louis.
Oh, and now, because he’s had so many transfusions, he’s developed antibodies to the blood products. I’m not sure I fully understand it, but basically, if he gets blood containing the certain "bodies" his "antibodies" will eat them up or attack them, causing a reaction. So, now each blood product has to be precreened to make sure he doesn’t receive the ones he attacks. This narrows the pool of blood products he can get, and I guess it narrows more each time he gets a transfusion.
That’s about all for now. Later today, while Greg is getting his biopsy, I’ll try to blog about our meeting with Dr. Vij. Until then, lets all keep our fingers crossed for good news!
Love,
Greg & Ann
Thursday, January 8, 2009
Betcha Didn't Even Know We Were Gone!
Well, we're back from Greg being in the hospital in St. Louis for 2 days. Betcha didn't even know were were there! He's OK now, and I couldn't blog from there because it all happened so fast, and I didn't have my laptop with me.
I'm at work now, & don't have time to post all the details. Basically, he got a fever again, so they did the IV antibiotic thing & he's fine now. We go back to St. Louis tomorrow to meet with Dr. Vij, and I will post again with the whole story after we meet with him.
I'm at work now, & don't have time to post all the details. Basically, he got a fever again, so they did the IV antibiotic thing & he's fine now. We go back to St. Louis tomorrow to meet with Dr. Vij, and I will post again with the whole story after we meet with him.
Wednesday, November 26, 2008
Happy Thanksgiving!
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
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 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
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