Double post

We were at the hospital all day — Beth had her bone marrow biopsy; we should have the results from that Friday.

I made the double post because the WordPress phone app said the first one had failed. Oh well.

GVH skin ailments

We are down at the medical short stay unit today, and I believe Beth is going to have another bone marrow biopsy today, and a Chimerism test. But the nurse is not sure. (It would be the second time they didn’t know what was going on here.)

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

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20120117-090653.jpg

GVH skin ailments

We are down at the medical short stay unit today, and I believe Beth is going to have another bone marrow biopsy today, and a Chimerism test. But the nurse is not sure. (It would be the second time they didn’t know what was going on here.)

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

20120117-090550.jpg

20120117-090653.jpg

One more week in the MSSU

We got the first weekend “off” since Beth began her treatments early in December. She got to stay home Saturday and Sunday, while home health workers (RNs) came to the house and took care of her treatment. It was the first time we didn’t have to pack into the car and head down to West Penn. She’s still got about another week’s worth of MSSU — she still needs to receive another five or six day’s worth of the antibiotic she’s been taking for her MRSA infection. That seems to be the big reason to get down there.

Too, she’s having another bone marrow biopsy tomorrow. From that will come the bone marrow tissue used to do the Chimerism test, which will be our first look at how the “graft” is doing. We have evidence that it’s working because her white blood cell count is way up, but doctors want to see how much of the old bone marrow is left — in theory, it can’t continue to grow or make leukemic blood cells because it should have been “destroyed” in the “conditioning” phase of chemo and radiation. But some of it may be left around. And of course, the “graft-vs-host” effect should be continuing to mop it up.

Generally, I take Beth down there in the mornings, and our oldest son Jeremy has been picking her up.

The transplant and initial complications are past; now we need to watch and pray

I’ve been putting up a lot of short posts (I’ve primarily been using my old iPhone), and now I’ll just summarize the events of the past couple of days. There are photos throughout the posts that appear down below.

Beth received her transplant, from 9:45-10:30 on Wednesday evening, December 14th. She received a very high number of stem cells (the range is 4 million to 8 million cells per Kg of body weight) — she had a young, strong donor, and she got the 8 million.

After the infusion of the new stem cells, she had a somewhat violent reaction, which lasted most of the night and the next day. Her fever went up to 103. Everyone’s initial response (all the medical folks) was that she was having an infection, and that is an appropriate place to look. Beth’s response was not common, but it happens. She seems to have settled down from that. They are continuing to give her two different antibiotics, Vancomycin, for staph infections, and Cefepime, which is good for pneumonia.

The next challenge will be that the effects of the chemotherapy (and I’m guessing they mean the Busulfan) really kick in on days 7-10. So we should be entering that phase now.

The purpose of the chemo was to destroy Beth’s existing bone marrow. This doesn’t happen all at once, but it happens over these 7-10 days. One of the doctors said that the existing marrow, while not yet “destroyed”, has been affected by the chemo and is not able to reproduce itself. And that’s where the new cells came in.

The new cells will begin to grow into new bone marrow. In the next couple of weeks, doctors will be looking for signs of engraftment, which occur probably during days 7-10 after the transplant. (These 7-10 days are different from the days 7-10 of chemo.)

30 days down the road, they will do another bone marrow biopsy and Chimerism testing to make certain that existing bone marrow is 100% donor and 0% Beth. If it’s something other than that, it would be a bad sign.

So we are not yet out of the woods. There is a 35% chance of relapse. But we know, too, that during the conditioning phase and afterward (by tweaking the response to the graft-vs-host effect – the effect by which the new tissues perceive Beth’s old marrow as enemy and continue to destroy it), the hope is that we achieve that 100% cure. But it’ll be a year or two before we know that.

Bone Marrow Biopsy Today

Watch this space for details, although I suspect that, given that this is now Beth’s 4th one of these, there will not be very much exciting happening. We’re headed down to West Penn’s Medical Short Stay unit, which is essentially a floor full of outpatient single-day hospital rooms. She’ll have a blood test and we’ll get some lab results; the biopsy is at 10:00 am, and again, Beth will go under “conscious sedation” or what’s otherwise known as a “twilight” sedative. She slept through the last one – it became painful a day later as all the sedatives wore off. While she experienced a tremendous amount of pain at some of her earlier bone marrow biopsies, she came back from the last one with no complaints at all.

See also The Papacy’s Missing Link

We are now scheduling the “pre-testing”

We got a call yesterday from the Transplant Coordinator – they want to have Beth come in now for some “pre-testing” – they want to check her heart, lungs, have another bone marrow biopsy. Since we have a regularly-scheduled appointment with Dr. Rossetti on Monday, we’re looking at going in and having some of this done on each of the next two Mondays.

Beth is about half-way through her sixth cycle of Vidaza – they always seem to kick her butt. The way things are going, this could be the last one. No word yet from the Donor. We may hear something Monday.