New schedule

Elizabeth's blood counts seem to have stabilized -- they decided she didn't need the normal Friday lab work and there have been no transfusions this week. She is generally functioning well, including going for 2-mile walks, but still gets tired more easily than normal.

It seems that the marrow donor can't fit in to the previous schedule, so it is being moved up a week -- hospital admission is now expected to be around March 11 with the chemo and marrow transfusion coming soon after that. She has a slew of medical appointments over the next ten days all checking out in various ways that she is fit to undergo the transplant procedure. There will be another bone marrow biopsy on March 9 to see what is really going on in there. An unhappy consequence of the new schedule is that we won't have time to go off on our little trip.

We are gastronomically well prepared for the hospital stay -- together we have now prepared quite a stock of dinners that I can relatively easily bring in to replace the horrible hospital food and as I reported earlier the soup supply for lunches is excellent. So to the extent that good food can facilitate her recovery, we are in good shape.

The next few weeks

I haven't posted for a while because there wasn't much new. Elizabeth has been home two weeks. She is slowly recovering from the last round of chemotherapy -- it did a lot more damage than the first one. She is now making white cells, particularly neutrophils, which is good -- there is less danger of infection. But she is still not making either red cells or platelets. This means that she needs transfusions regularly -- she has had several of platelets already and got both on Friday. The docs tell us that this is not unusual -- it can take a long time to recover from the intensive chemo that she had and particularly platelets come back slowest. Her energy level is also recovering slowly -- she works at going up and down down stairs and we go out for walks -- so far a mile is feasible, but tomorrow we hope to try a bit longer one if the footing isn't too bad -- we had about 4 inches of snow today.

We met with the BMT (bone marrow transplant) team on Friday. The original plan was for her to be admitted around now for the transplant, but things haven't been finalized with the donor and in any case they want her to have recovered more thoroughly to be strong going in to the process. On the other hand, they don't want to delay too long to risk that the leukemia might return -- it is considered important that she be in complete remission at the start of the transplant process. So the current thinking is that she will be admitted around March 19 for the transplant. At that point she will be in the hospital for at least a month and in a rather delicate state for the first 100 days after the transplant.

If she can get to a state of not needing transfusions so frequently, we are hoping to be able to get away for a few days in March to someplace warm and fun -- we'll see if it works out.

Home again!

Elizabeth was discharged from the hospital this afternoon. Her temperature has been normal for several days and her white counts finally made it over the magic 1.0 mark. Ongoing problems include relatively severe edema and elevated liver enzymes, but it is expected that these will sort themselves out eventually with a bit of drug help. She is still quite weak, but can get around the house. Given these problems, the transplant will certainly be delayed from the originally scheduled admission on February 18, but it hasn't been determined by how much -- this probably depends on recovery from the above mentioned side effects. For now we will again try to enjoy for a while a simulated normal existence.

New room and phone

Elizabeth has been moved to a different room. Her new phone is 734-936-8109.

Soup alert

Nothing much new to report -- blood counts remain low and the fever/infection persists despite many tests trying to discover its cause. Everyone is stumped for now. They are planning to do a bone marrow biopsy today to try to understand why the counts are not recovering.

Although Elizabeth's appetite is not very good, one thing that still appeals are the soups that I bring most every day for lunch. I expected the backlog from earlier contributions would last through this hospital stay, but with this extension we are close to using them up, so if any of you living locally have time and energy to make another batch of soup, it would be appreciated. The  guidelines remain in force. The main points are using clean chopping boards and cooling it quickly after cooking.

I take them in a thermos that holds 2 cups and serves both of us. We have lots of freezer containers, so feel free to bring a large container for me to divide up. They can be left on our front porch while the weather is still cold. While I am away Wednesday evening-Sunday afternoon my daughter Mira will be in town to be with Elizabeth and can put them away.