We’re going to have to sit on pins and needles for a bit

bkking2a — Not a typical urinary tract infection

This is serious enough to be concerned about it. I mentioned that Beth has tested positive for two viral infections. I’ve got an inquiry into the doctor, but it seems to me that, while they are treating these things aggressively, they can become serious enough to cause serious worry.

BK Virus: “BKV is a particular problem. BKV is a human polyoma virus that is ubiquitous in the environment and infects children at an early age. Although the most effective treatment has not been established, there has been some success with antiviral agents such as cidofovir and vidarabine. Preventive methods include mesna (2-mercaptopurine sodium sulfonate) combined with forced diuresis and continuous bladder irrigation.” An earlier journal says: “Mesna and forced diuresis are equally effective in abrogating the urothelial toxicity of preparative regimens for BMT. Since HC after BMT is virtually always associated with persistent BK viruria, strategies aimed at the prevention or elimination of viruria in BK seropositive recipients are warranted.”

CMV Virus: “As a consequence, T-cell chimerism after BMT should give a positive prognosis with respect to control of CMV.”

She seems to be covered with respect to the T-cell chimerism; as for BK, she’s got the urinary tract infection symptoms, and also, orange urine. They are giving her lots of IV fluids. On top of this, she’s got the old MRSA infection (at least it’s present enough for them to bring out the yellow gowns), and so it seems as if we’re going to have to sit on pins and needles for a bit.

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.

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.

Still in the hospital

Beth had a couple of tests today – an echocardiogram to check to see if her infection settled in her heart (or rather, to verify that it didn’t), and also an MRI, to check her lower spine and hip bones for that same trace of infection. She also needed two units of blood, some platelets, potassium, and magnesium. This is the sort of thing they’ll do in the Short Stay unit, but they haven’t yet (to my knowledge) replaced her catheter.

After work today (just a short day), I stopped by the hospital, but she was sleeping. I came home and did some shopping, now I’m headed back to the hospital to see how she’s doing and spend the night with her.

Overnight and the near future

I spent the night at home last night for the first time in nearly two weeks. Beth seems to have stabilized. I’m going to give her a call later this morning. The plan is that they will remove her “triple lumen catheter” today – the doctors sort of having isolated this as the source of her recent infection – and they’re going to put another one in. It should be possible for her to come home after that. The kids have all been wonderful. Everyone’s been pitching in – giving rides when needed, cooking meals, cleaning the house (a bit), washing dishes, getting the garbage out.

Beth is not out of the woods yet, medically, although there is great hope. Still, GVH can cause pneumonia and organ failure leading to death, and even prior to that, she’s still going to be neutropenic for the next week or two. And we still have the daily trips to the short-stay unit for about three more weeks. So I’m headed for work this morning, and I’m going to try to work at least half-time for the next couple of weeks. My two older boys have cars (for which I still pay the car insurance); they have both volunteered to share the rides to and from the hospital.

A visit from the Infectious Disease Doctor

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.

What’s the greatest danger? (Part 2)

“Transplant is the only cure”
Once the decision has been made to go with the bone marrow transplant or stem cell transplant, an entirely different set of dangers arises from those faced because of the leukemia. In principle, the existing bone marrow is destroyed, and so the leukemia is destroyed. There is a significant possibility that it will return, but that danger is down the road.

The goal of this transplant is to completely eradicate her old, damaged bone marrow, and to replace it with new healthy and growing marrow that is capable of producing untainted blood cells. There is a great deal of danger in this process. Sometimes it seems to me that this is a case of “the cure is worse than the disease,” except the disease, CMML leukemia, is very bad indeed.

To eliminate the old bone marrow, Mom is going to be put through a regimen of “intense chemotherapy” (and note that the regular old kind of chemotherapy is bad enough for most people), with chemotherapy drugs with names like Fludarabine, Busulfan, and Thymoglobulin. These are still so far down the road that I haven’t yet looked them up. Then there are two day’s exposure to “total body irradiation”.

All of this will occur over a period of 6-8 days prior to the actual “transplant” (which in Mom’s case is then an infusion or a “graft” of stem cells from a non-related donor). In this process, not only is her bone marrow destroyed, but her immune system is destroyed.

For the first 30 days or so after the transplant, there is a danger that the graft will not “engraft”, that is, it will completely reject her system, but that risk is controlled with drugs, and it’s minimal. The larger possibility is that, with her depleted immune system, she will suffer from an infection. It can be bacterial, or viral, or fungal; she will likely develop “mouth sores”, she won’t be able to eat, and she’ll experience nausea, vomiting, and diarrhea. There are dangers of liver and kidney damage, and also pneumonia, which can be a killer.

There are drugs and antibiotics to deal with these. But still, the first 30 days is only the beginning.

When the “graft” becomes “engrafted,” there is a whole new set of dangers. Mom will have no immune system, and in essence, the “graft” will be in charge. The “graft” will have its own immunities, and they will have their way with her. There is a danger that they will reject her, in large and small ways. This is called graft vs host disease (GVH).

True, some of this GVH effect will do a clean-up job on any leftover bone marrow or leukemia from the old regime. In fact, “graft vs host” is what provides some of the magic of this transplant process. It’s often the final nail in the coffin of the leukemia.

Unfortunately, it’s also a killer in its own right. There are two phases: “acute”, while the actual “graft” is still moving around in there, and also “chronic”, beginning at approximately 100 days after the transplant, when the “son of graft” cells are taking over.

In all, the GVH period can last up to a full year or more. Symptoms may be as mild as a skin rash, but GVH can also affect major organs, and I have a friend whose wife died from GVH complications some two years down the road.

The good news is that, if Mom makes it down the road that far, there is an excellent, excellent chance that she will have beaten the leukemia and can look forward to a normal life span. There may be some lingering GVH symptoms – we’ve encountered a couple of people who can’t make tears.

But that’s a relatively minor thing to live with, compared to leukemia.