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Beth had another “moment” this morning when she felt a fever and chills coming on. But she laid down, covered up, fell asleep and the notion that chills were coming passed. So it seems as if she is fighting off these infections herself. We are awaiting the blood lab report so we can watch the numbers go up for a change.
However, the infectious disease doctor thinks it was too early to take her off the vancomycin, so she will go back on that today.
I just got back to the hospital. Beth had only one mild fever this afternoon. Her white blood cell count was .10 yesterday and .29 today (for normal folks it’s over 5.5). But the increase in white cells is the first sign that engraftment is taking place. And it means she has her own ability to fight off infections. So much so that they discontinued one antibiotic, the vancomycin.
My guess is that that’s doctor-speak for “we’re going to continue to administer these same antibiotics (Vancomycin and Cefepime) to you” – that’s what the Infectious Disease doctor said on his way out the door, after telling us that the more recent blood cultures have been negative for the past two days. That means that the infections in her blood have been cleared out. Her initial blood cultures, from right after her transplant, showed an initial MRSA infection; that the more recent cultures – those taken over the past two days – are negative, which means that the antibiotics have done their job.
Beth slept well most of the night, although she’s continuing to have symptoms – vomiting, body aches, and a low-grade fever (100.8). On the blood numbers front, Beth’s LDH (“the disease process”) has fallen to 232 on the most recent lab results – 212 is the high normal number for that , though we’ve been told that her old marrow will continue to die (and I would think, to be present in the blood for some time), contributing to that number not being quite normal. (And her white blood count – where the normal is 5.5-11, was 0.03 this morning).
Beth was up throwing up last night (so I hear – I slept through it), and up again around 4 am throwing up again. It seems as if this is one of the delayed effects of the Busulfan, which are supposed to occur some 7-10 days after the first instance of it. (We are now on day eight). Aside from that, they are continuing to give her a fairly steady diet of the antibiotics Vancomycin and Cefepime. Otherwise, she slept quite a bit, and quite soundly last night.
The Infectious Disease doctor dropped by around 8:00 am, and looked at Beth and talked with her.
I mentioned below that there was some possibility that the source of infection may have come from the stem cells, but that has been ruled out. The cultures that they took of the stem cells are still negative. So that leaves the catheter as a culprit. They will replace that line on Monday, and do some further tests to confirm or rule out that it was the source of infection.
It is a MRSA infection – that is, a “Methicillin-resistant Staphylococcus aureus (MRSA) is a type (strain) of staph bacteria that does not respond to some antibiotics that are commonly used to treat staph infections.” Beth had some positive tests for this in an earlier hospital visit. Because she had worked in a nursing home, it is likely that she became exposed to the infection there, and just retained it in her body. They are giving her the antibiotic Vancomycin, and a fairly hefty dosage of it, which is more than capable of handling this infection.
The kids (the three youngest) will be spending the weekend with my brother. I’ve brought a stack of books to the hospital, and a stack of DVD movies. I’m here for the duration.
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.
Beth is finally sleeping peacefully. She had a somewhat violent reaction to the infusion of cells. But they haven’t ruled pout an infection. She is getting two strong antibiotics, vancomycin and cefepime. Plus the potassium solution. I told her just a bit ago, “you may feel terrible, but you don’t have leukemia anymore”. If there is no relapse, that is a true statement. We thank the Lord for gracing doctors to discover how to make all of this work.
Beth is going to get to stay again. It’s been a busy day for her. They lanced all of her abscesses, which relieved quite a bit of pressure. She got more Vancomycin, her two remaining bags of Vidaza, and FOUR units of blood instead of the usual two.
I noticed I forgot to give this post a title this morning…
This photo, showing the abscesses Beth has developed, is about as close as I wanted to get, for her privacy’s sake, but they do look like the images at the Wikipedia entry. They gave her an antibiotic called Vancomycin yesterday, a drug of last resort. That will give you some idea of how serious they think these are. You just need that kind of help when your white blood counts are as low as Beth’s are.
Zach stayed with Beth almost all day yesterday – thank you Zach! – and after an abbreviated day at work I took Sissy and Dani down to the hospital. Dani is not supposed to be there, but we snuck her in anyway. And Beth was very grateful.
None of the “medical” stuff got started unit Dr. Rossetti arrived (and I was walking into the room, coincidentally, the same time he got there) at about 5:30. We always learn things when we see Dr. Rossetti, and there were some important takeaways yesterday.
1. He really likes this second donor. This is the one he is hoping we’ll get. She is a young woman from the “international” database, but she has the best characteristics among the three potentials. We may learn more on that as early as today.
2. The Vidaza, while it’s not doing the work of enabling Beth to produce blood cells, is at least doing the work of “clearing out her marrow” – which is the function of the “conditioning” phase that will precede the transplant.
3. The transplant is potentially just 3-6 weeks away. Three weeks is optimistic, six weeks would be more typical. That would put us in the hospital (or making our daily runs to the hospital) for most of December.
We continue to be grateful for and overwhelmed by the love and concern of our family and friends, the outpouring of love and prayers from our church family, and monetary donations which continue to come in, and which are still (and soon to be) be much needed. Thank you for being here with us and for us.