Good news, bad news

The good news is that Beth’s white blood cell count is up above 3.8 — given how it had dropped over time with the Vidaza treatments, this makes it seem as if it’s rocketing up. Her white counts haven’t been at this level since back in August. Her hemoglobin level was up to 10.4 — I think that may still be up from her transfusions the other day, but I’m not sure of that.

The bad news — and I admit, this is the non-glam part of the whole deal — the mucositis / mouth sores are just not very pleasant at all. She’s being treated with Acyclovir, which “is used to decrease pain and speed the healing of sores or blisters”; she’s also being treated with regular use of a couple of different mouth rinses that help to function kind of like salve on a burn.

Later, we’ll be going on a walk around the floor. She’s at the point now where getting up and about will help speed the healing process.

Mouth sores


Beth has only been having small fevers, and her blood pressure is still elevated (154/107 this morning), but her biggest annoyance continues to be the mouth sores. I don’t know if what she’s got at the corner of her mouth counts, but in the photo above, the white lining under her tongue is part of the “lining” that was built up by the Kepivance, to protect against mucositis (mouth sores) and which now seems to be peeling off like so much snake skin.

We hear Beth could go home “soon”, so I’m going to go in to work for a few hours today and just play it by ear.

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.

“Technically, the first day of engraftment”

The doctor was in, and even though Beth has been feeling pretty bad, he said, “the worst is over”.

The doctor just told us that technically, today is Beth’s first day of engraftment. Her white cell count was 2.0, so she’s no longer neutropenic — can eat anything she wants, there is no need for us to maintain a sterile environment at home, etc. She can fight the fevers on her own.

She’s feeling quite a bit of bone pain, still some minor fevers and headaches, but as the doctor said, “the worst is over”. The nurse here, too, said that one thing they don’t say enough about is that this second week past the transplant is the worst. But she has no signs of GVH at the moment — liver, GI tract, and skin are at an acute risk at the moment, but no signs of it. I guess there are still opportunities for complications, but the worst is past.

The most annoying thing is the mucositis — the mouth ulcers. They’re affecting her ability to eat, giving her pretty decent heartburn. She’s definitely been through the wringer.

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.