More problems

Elizabeth's blood counts are not recovering on the schedule of the first round of chemotherapy -- her white count is still at 0.2-0.3. The doctors had expected it to be up by now, but tell us that it is not too unusual for the second round recovery to be slower. To make things worse, she has again gotten some sort of infection that is giving her fever, so she is back on antibiotics (after a couple of days off) and is rather miserable. Our plan to return to London next week was, of course, dependent on her counts being up so she had enough of an immune system to cope with the world. So she will not be able to go. I will still go to retrieve the many things we left in the flat there, but for a shorter time, leaving Wednesday and returning Sunday.

The long wait

A week since the last post and not much change -- white counts have been stuck at a very depressing 0.2 for 5-6 days. There have been several infusions of platelets since these levels also fall after each one. The one bright spot is that hemoglobin levels have stayed in the 9-10 range for most of the time since the last transfusion about 10 days ago, but even these are down today and she may need another transfusion tomorrow. We are still very much hoping that this week will bring enough of a recovery to allow us to make our planned brief trip to London 1-8 February.

We have talked more with the marrow transplant people -- physician and coordinator. The best available  match is still 9/10 and it looks as if we will have to go with this one. The admission date for the transplant has been tentatively scheduled for February 18, but this will depend on the timely availability of the donor. At that point she will get a stronger regimen of chemotherapy for a few days, then the transplant. The hospital stay is expected to be at least 4 weeks, possibly longer. It's a very risky process and things could go badly in many different ways, but everybody agrees that it is her only chance for a real cure.

Steady state

The infection now seems under control with just the first antibiotic and there has been no fever for the past day or more. But it still seems that they will keep her in the hospital until the blood counts recover to near-normal levels -- at this point the white count is at 0.1. She got two units of blood and one of platelets yesterday, so these levels are a bit higher. We are fondly hoping that she will start making white cells is a week or less, but it's hard to guess when she will get out.

The combination of blood and no fever has put her back at a higher energy level to the point that she is now ready to talk to people on the phone -- her room number is 734-936-8418. She may also be accessible by email and Skype, although Skype is as always uncertain because of the unreliability of the hospital wireless network and her ability to reach the computer.

a setback

Elizabeth has been checking her temperature regularly. This afternoon she had a reading of 101.8. After this continued for a while, she called the clinic and was told to report to the hospital emergency room. After more tests, they decided she should go back in the hospital, probably for the remainder of the time that she is neutropenic, around 2 weeks. They haven't figured out what sort of nasty organism is causing the fever, but they have started her on antibiotics to try to control it. As I write she is still in Emergency waiting for a bed on the unit -- they are very full and she has to have a private room. So we are back to the hospital routine.

the return of neutropenia

As scheduled, Elizabeth had her second round of chemo last week Tuesday-Thursday. It all went well with no immediate side effects and through Monday she was feeling pretty normal with enough energy to take walks of several miles. Then yesterday she was very tired  and felt constantly cold. Since the Monday red count had been only a bit below normal --- 9.6, not low enough to trigger a transfusion --- we thought it must have dropped suddenly. But today's count was only slightly lower, so we don't have a good answer. But the doctors ordered transfusions anyway -- 2 units of red and one of platelets -- and we spent the day in the infusion unit. We'll have to see if this does the trick. But the white count has gone back down to the very low level (0.2) that it was for 10 days or so during the last round and she is officially neutropenic again. Now the goal is keeping her infection-free until that recovers. 

Long-term outlook

After discussions with the doctors yesterday, we begin to understand their treatment plan. The prevailing view (at least here) is that for the particular subtype of leukemia that Elizabeth has, no amount of chemotherapy will reliably provide a permanent cure -- the only hope for that is a bone marrow transplant. Her blood and marrow may look clean, but there will always be bad cells lurking that with time will take over again. The transplant group is a separate one and they are reported to be searching for an appropriate donor. We hear that there has been one found that matches 9 of the 10 markers and that there is a possible lead to a 10 of 10 match. It will take time, in the range of months, to find, and verify any match and then collect the marrow.

Meanwhile it is important to make sure that Elizabeth remains in remission, and for this there will be continuing chemotherapy at a slightly lower level than the first series -- 3 days instead of 4. The idea is that she should have 3 days of infusions every four weeks given as an outpatient. Each time this will depress her red, white and platelet counts and require transfusions for the red and platelets and extreme care to avoid infection because of low white counts. Any infection will lead to hospital admission. So this is what is now starting -- today was the first in this series.

A bright spot is that they agreed that it would be safe to postpone the next series from 2 February to 9 February and for us to take this week -- a time when her counts will have temporarily recovered -- to go to London to have a few days of fun and clean out our remaining possessions in our flat there. From the plan outlined above it seems certain that we will not be able to return to London for a longer stay this year. Indeed, the doctors are saying that after the transplant she may not be able to go back to work for up to a year, although knowing Elizabeth I really doubt she will be anything like that slow. But we will just have to take it as it comes.