Back in the hospital

Beth has something like a urinary tract infection going on. The urinary tract thing has been driving her crazy for days. She’s tested positive for both the BK virus and also the CMV virus. My understanding is that both of these are very common, and wouldn’t be a problem for folks who have normal immune systems. But it’s also common for folks who have had transplants (and the related immunosupression) to have to fight off these viruses.

So she’s back in the hospital, and they’re treating this with “aggressive IV fluids”. She’s already had an ultrasound on her kidneys, and everything there appears to be fine.

White cell count; mucositis, and elevated blood pressure

Beth’s white blood cell count this morning was 2.89; that’s the highest it’s been in months. And that’s the type of thing that’s going to let her fight off any infections that come her way.

The biggest challenge right now is the mucositis. She had gotten Kepivance both before the chemo, and after the transplant, in order to thicken the lining in her mouth, esophagus, and GI tract. I believe this was to prevent mouth sores, which are caused by the chemo. However, she’s been dealing with this the last few days — the thickened lining “peels off”, and in her case, it hasn’t entirely prevented the mouth sores. So she’s fighting both the sores and this peeling lining. (Though she has, at the insistence of the nurses, continued to try to eat things like jello, cottage cheese, and pudding).

Her blood pressure remains elevated, her legs and feet remain swollen a bit, mild fevers (below 100 F) continue to come and go. And while these things are annoying, they seem to be subsiding as well.

Probably won’t be home for Christmas

One of the resident doctors came in this morning and explained some of what seems to be going on with the persistent fevers.

They’ve done lots of tests and blood cultures, and one of the probable sources of infection — the catheter — has been ruled out (so far the “cultures” they took from the piece they removed are negative).

There seems now to be a higher and higher probability that the infections (and the fevers, which come and go with regularity) seem to be introduced through her gastro-intestinal (GI) tract. One of the major side effects of the chemotherapy is something called mucositis, which manifests itself in the form of sores in the mouth and evidently all through the GI tract. Since she has no current immune system, bacteria from the environment (food, drinks, etc.) are making their way through her GI tract, and into lesions caused by mucositis.

This is a pronounced-enough effect that a significant portion of pre- and post-transplant treatment involves the administration of “Kepivance”, which is supposed to cause the body to produce a coating within the GI tract, and it has worked — she really does have a coating, and no mouth sores, but that’s no guarantee of no small lesions throughout her stomach and intestines.

The primary symptom, I guess, is the fact that she continues to have fevers, even though they are continuing to administer the strong antibiotics, vancomycin and cefepime. And so, if this is the case, the fevers will continue to come and go through the next few days, until there is some “engraftment” and she begins to produce white blood cells, some 10-12 days after the transplant. (The transplant was on the 14th, so days 10-12 will, at this point, straddle Christmas). With the production of her own white blood cells, the fevers and infections should “resolve themselves”, but until then, we are here.

The bottom line is that she can’t go home until she has gone 24 hours “off antibiotics and fever-free”, which obviously, at this point, hasn’t happened.

But the trade-off, as the Doctor said, was that right now, she is giving up one Christmas at home, in order to have many more in the future.

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.

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.

A donor has been selected

We got a call today from the Transplant Coordinator, telling us that the donor has been selected. They actually select the third of the three donors we had been undergoing testing — the last one to come in. This is good news — when we saw Dr. Rossetti, he had liked that second one a lot. And he likes this one better.  This first choice is a young female, not from the U.S., same blood type as Bethany. She will be contacted with the news, and if she agrees to do it, she will be scheduled for a complete physical exam. She will also be given a list of tentative dates for the procedure; the earliest of these will be about three weeks after the physical exam.

The donor goes through a five-day regimen of injections to (a) increase her production of stem cells and (b) force the stem cells out of the marrow and into the bloodstream. On the day of the transplant, the donor will be hooked up to a machine like a dialysis machine: blood will flow out of one arm, through the machine, which will “harvest” the stem cells, and the remaining blood will be put back into the other arm. This is about a 6-8 hour process for the donor. The stem cells will be stored in a bag very much like a regular unit of blood. Since the donor is outside of the US, they will be put on an international flight to Pittsburgh, and transported to the hospital.

By that time, Beth, also, will have undergone an 8-day regimen of intensive chemotherapy and full body radiation. The intention, again, is to destroy all of her damaged bone marrow. The hope is that the new stem cells will “engraft”, or set up shop, within 30 days, and begin to form new bone marrow within Beth’s bones. About that point, Beth will begin to face “rejection” issues — “graft vs host”. Some of this effect is good — the immunity effect of the new “graft” will, it is hoped, destroy any remaining damaged bone marrow and leukemia cells. This is vital, in fact, in preventing relapse. The unfortunate side is that the “graft vs host” also can have side effects that can be very serious, and can even lead to death (i.e., pneumonia and other infections become a very real danger.). And this danger lasts about a year.

Needless to say, Beth is very apprehensive about this. But at least we are moving forward now.

Another uneventful weekend

We had an uneventful weekend. Of course, my Facebook friends who pay attention here know that I fixed the toilet over the weekend. Those kinds of small household chores scare the daylights out of me.

Speaking of “fear”, I fully expect that we’ll hear from the doctor this week to say that they’ve selected a donor (from among the three 10/10 matches we’ve found) and there is a schedule for the transplant. Almost any way you put it, it looks now like we’ll be tied up with hospitals for Christmas. (Unless they decide to hold off the transplant until after Christmas, but I can’t see them doing that.) If they do select a donor this week, our 3-6 week “window” falls right in December.

Beth had a restful weekend. Going to church has become her big event for the week. Getting up and showering, then going to Sunday School and the worship service is a major effort. But she loves the church, she loves the people there, and she’s even made some good friends. But then she has to come home and take a long nap.

And, as far as my theological writings are concerned, this one is sure to be a winner: The theologia crucis and Luther’s critique of the analogical nature of theological language. At least the title is an exciting one 🙂

Our second potential donor is approved

Yesterday I learned that we have confirmed a second 10/10 donor, and we may learn of testing results from a third. That would mean we will be able to select from among three potential qualified donors. Given that there are 10 million people in the US database, and seven million people in the international database, to come down to only three potential matches … that’s just an amazing number to me.

One of these individuals is from the United States, by the way; the other two are from the International list. So in that case, we may have to wait for an international flight to bring in the stem cells on “transplant” day.

In agreeing to submit to all of the additional testing we’re asking them to do, all three of these folks are tacitly consenting to be donors, but once the doctors select the best donor, then that person will need to be recruited — that is, I guess there is all kinds of paperwork and legal stuff to be filled out. I don’t know much at all about that process, but there is some further work to be done.

We’ve been under the impression that it will take about six weeks from the time a donor is selected until “transplant”. So if the donor is selected next week, that would put “transplant” for us right in the middle of December. And that, in turn, would mean a week or more in the hospital, followed by 30 solid days’ worth of running to the “medical short stay unit” at West Penn, where Beth would have daily blood tests and would then receive transfusions of whatever might be needed on that particular day, whether that be additional hemoglobin, or platelets, or intravenous antibiotics, or whatever.

I say “30 solid days’ worth of running”, but that’s only if she’s healthy. There is a 75% chance during this time that she will need to be admitted because of some kind of infection. In fact, the whole first 100 days, Beth will be in an extremely vulnerable condition – not having an immune system of her own, but dependent upon the immunities of the new stem cells that are implanted into her.

It’s a long and convoluted process, and given that this is the only cure for the leukemia that Beth has, as bad as it gets, the cure is not worse than the disease. Although, we are told, it may seem that way at times.

The good news is that God Rules. That is the one constant in the world that we can truly count on.

The disease has been controlled

The Doctor’s report yesterday was fairly decent. The disease has been “controlled” by the medication she is taking. That’s the biggest thing. The real danger back in June was that she would progress from where she was (“15% blasts in marrow”) to aggressive “acute myelogenous leukemia” (AML, marked by 20% blasts in the marrow). After her biopsy last week, we found out her blasts level was back down to 4% (and all healthy people have 5%).

There are still anomalies in her blood. Overall, her blood levels are very low (though rising), and a certain kind of white blood cells called “monocytes” are doing some crazy things. The marrow report said “in summary, there is an absolute monocytosis consistent with a myeloproliferative disorder.”

The particular brand of leukemia that Beth has, “chronic myelomonocytic leukemia” (CMML) is marked by both “myelodysplastic” and “myeloproliferative” characteristics. And as I’ve written in the recent past, when the disease is marked by a change from “myelodysplastic” to “myeloproliferative”, at least one study I’ve seen has suggested that this is a not-good progression in the disease.

(Our doctor is not one among those who sees this as a progression — he prefers to look at the actual numbers, and to say, “they are still in the good range”. And I am certainly in a position that I need to trust his understanding of things more than my own.)

The bottom line is that, while all of these movements are traceable and discussion-worthy, the only important thing is that Beth be in “the best condition possible” for the bone marrow transplant, which likely will happen in 6-8 weeks. Again, some think the dysplastic–>proliferative switch is a progression that can hurt her chances in the transplant; but our doctor does not.

On that front, we do not yet have a donor, although there are a half-dozen individuals who match on 10 out of 10 specific DNA markers. These folks are going through additional testing. The reason we only have six is because Beth has an unusual combination on a couple of the more important DNA markers. And among these six, none are “ideal” – in the sense that there is an “ideal” profile of a healthy young male, no tattoos or piercings, who has not had any major diseases in his life.

These folks are older, some of them are older females who have had multiple pregnancies (and the related antigens that can cause some issues).

Our doctor says that we will move ahead with the transplant just as soon as one of these donors is selected. And I’m hoping to place a call today to the “transplant coordinator” at the hospital who is actively working on this to find out what’s happening.