Bayeux Tapestry

Those of you who have visited Elizabeth either at home or in the hospital have no doubt seen stages of this creation. It is an embroidery kit based on a segment of the Bayeux Tapestry -- in this case the very first panel in which Edward sends Harold off to France to tell William that he is to be the next King of England -- check out the Wikipedia entry for more. We bought the kit in 2001 on a visit to Bayeux where there is a marvelous museum housing the tapestry. Elizabeth always thought of it as a retirement project, but it has been ideal for this period when she has a lot of time on her hands. In fact, as she was nearing the completion of this segment, I ordered online two more from the museum; she is already nearly finished with the first of these. This one is about 26 x 17 inches, the others are bigger.

Home again

Elizabeth was discharged from the hospital today. The doctors think that she has made a good start at recovering from the gut GVHD, but she is on a *very* restricted diet for the next few weeks to try to get her gut to repair itself. Between restrictions on fat, fiber, lactose, too much simple carbs and acids; the increased immuno-suppression from the continuing steroids; generally poor and somewhat altered taste and appetite; and the need to build up her protein and weight, it is more than a little tricky to figure out what to feed her. We're working on it.

Amazing treatment

Elizabeth is responding well to steroids and eating very little to rest the gut. But she is also getting a treatment called ECP (Extra-corporeal pheresis). She is getting 3 ECP treatments this week and 3 next week -- they are predicting that she may be released early next week so these may be outpatient. I just witnessed part of today's treatment and find it a fascinating and amazing process. I am obviously no expert and apologize to those who are, but for the rest of you, here is a summary of what happens.

There is a large fully computer-driven machine that is connected to one of her ports. Blood is started flowing to the machine through a series of gates. It first goes into a centrifuge where as much as possible it is separated into three components: red cells, white cells, and plasma including platelets. The white cells are fed into a chamber in a light box and the rest is returned to her body. This cycle is repeated 3-6 times. Then the collected white cells are injected with a chemical extracted from tropical fruits -- I forget the name -- that makes them more light-sensitive and irradiated with ultra-violet light. Finally they also are returned to her body.

I haven't really gotten a good explanation of the process by which this is beneficial, but it seems to be accepted that it is. Somehow the irradiated cells stimulate the production of T-cells that are not so prone as the ones she has, which are in fact being attenuated by the steroids, to attack the gut. It seems contradictory, and the nurse running the treatment agreed, but she was not able to give me a clearer reason. One side effect is that for some 24 hours after each treatment her whole body is more light sensitive, so she has to stay out of the sun (not hard in the hospital!) and wear UV-protecting sun glasses.

Contact info

Elizabeth's phone number is 734-936-8110. She also has a computer in the room and will be checking email regularly.

Back to the hospital

Elizabeth will be readmitted to the hospital this afternoon. Her sigmoid biopsy on Wednesday confirmed what we were increasingly suspecting, that her gastro-intestinal problems are due to GVHD (graft-versus-host-disease) -- essentially the white cells generated by her new marrow are attacking her gut as a "foreign" object. This is apparently a fairly common way for GVHD to show up, so it was not entirely unexpected. In fact, they keep telling us that they want to see some significant expression of GVHD, presumably to ensure that any few remaining leukemic cells will also be obliterated. Treatment will involve high-dose steroids and no food by mouth for a while. Since the steroids have various side-effects, they will be monitoring things closely. In particular, they want to make sure there is no resurgence of CMV. They say she will have to be in the hospital for at least two weeks, but it could be longer. She will be on the BMT unit of University Hospital, 8A (assuming they can find a bed there -- it is currently full). I'll post a phone number as soon as we have one.

Update

I haven't reported for some time, largely because there were no focal events. The upsurge of CMV seems to have been tamed by Valcyte, so this drug has been discontinued for now. The increased gastric and eating problems seemed to intensify about the time Valcyte was started, so we are hoping that these were largely side effects that will now diminish, but it may take some time. These symptoms are currently making Elizabeth rather unhappy some of the time, although there is considerable variation and she does have relatively good days. She has been up to short walks some days, although not all.

Valcyte also depresses blood levels of red and white cells and platelets, so we hope and expect that these will improve in its absence -- reds and platelets are doing reasonably well, but whites have been dropping to the point that she was officially neutropenic (ANC below 1.0) at the end of last week. Also a few shots of Neupogen have been authorized and should boost the neutrophil count. Today is day 81, nearing the watershed day 100. One of the immunosuppressants, CellCept, as already been reduced to 2/3 dose, and we expect that soon also Tacrolimus will be cut back, so perhaps this will also reduce the side effects.