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!

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.

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

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

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.