Still waiting to open Christmas gifts

We received a huge pile of Christmas gifts this year, from the school (as noted in this article), but also from several other individuals and families who just wanted to help us out. We had all of the kids home last night, Friday night, along with several of my sons’ girlfriends, but Beth just was too tired to get out of bed. Maybe today, although I think Jer and several of the girlfriends are working, and so we won’t have them with us.

We’ve been letting Dani open “just one present” at a time, and I believe several others have opened several of their packages (we have a new coffee maker and some coffee mugs), but I couldn’t say where and when. These kids have a tremendous amount of patience, and I’m very grateful for it.

Beth is washing up right now, and we are headed down to West Penn for her daily checkup. Only, the MSS is closed for the weekend, so we’ll be back up on T7 (which is the hospital’s Hematology / Oncology (hem/onc) unit).

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.

One particular public school

The public school systems of this country are not thought well of in some circles. However, this Thanksgiving and Christmas, my daughter’s public school is going to play a major role in our lives.

Tomorrow, around 10:00 am, we’ve been told to expect a fully-cooked Thanksgiving dinner (enough to serve eight or more!) will be delivered to our home by my daughter’s teacher and her helpers.

And for Christmas, we received the following note:

We are very grateful for the love and attention that many, many people are pouring out on our family as we face these difficult times.

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 🙂