T+82: Blood Counts Down

Yet again, apologies for the silence. This week has been very tough, I have been very tired in the evenings and the rest of my time has been filled with another project that I'll tell you about next week.

The reason that this week has been so hard is that Kay's blood count has dropped. From last week's high of 0.7, her white cell count dropped to 0.5 on Monday and then to 0.3 yesterday. This is a huge and very worrying disappointment for us and we have been struggling to understand it. Further, the-all-important CMV virus load measure has not dropped. In the first week of the new anti-virus treatment it dropped by a factor of ten, but it remained largely the same last week and again this week. In other words, her CMV virus load is not decreasing in the way that we had hoped.

Just to recap, the CMV virus suppresses bone marrow activity, as does the anti-vrial medication given to combat the virus. As long as Kay is not able to produce her own defence against this virus, she has to be given anti-viral medication that prevents her system from developing the necessary defense, ie a circular problem.

This evening we met with the senior oncologist to hear about the latest results and discuss what happens next. She told us that it happens that the anti-viral medication reduces the CMV virus to a level where it is not making the patient sick but that it is not able to reduce it further than that. She told us that they will try an additional attack using 3rd party CMV virus antibodies.

Many of us carry the CMV virus in our bodies but our immune systems have developed a natural resistance to it in the form of antibodies able to recognize the virus. The antibodies are generated by T-cells. Kay has no T-cells at the moment so her system is unable to generate the necessary antibodies. The new treatment will involve introducing CMV antibodies gathered from regular donated blood into Kay's system in the hope that they will recognize and attack the virus that is causing all these problems. The combination of the anti-viral medication plus the - one-off - antibody treatment should further decrease the viral load on Kay's system. The production of a useful volume of CMV antibodies involves processing a huge volume of blood. In other words, this is a very, very expensive treatment.

The specialists have also reached the conclusion that too much damage has been done to Kay's new bone marrow for it to thrive unassisted. Therefore thay are planning to give her a second, additional bone marrow transplant (from the same donor), a "top-up" so to speak. This involves going back to Kay's donor and asking them to donate again, a process that will involve the donor yet again passing a medical screening test. Dear Donor.

But first it is necessary to determine whether the blood cells in Kay's body have been produced by donor stem cells or by her own (remaining) stems cells. If it turns out that a significant percentage of blood cells have her own DNA then there is a risk that a top-up transplant of donor cells would result in rejection problems. In this case to will be necessary to subject her to a further round of conditioning therapy to kill off her existing bone marrow, ie another round of major chemotherapy. The question then arises whether her system can survive more chemo. In the event that the majority of blood cells are of donor origin, a new transplant can be performed without complications. You can guess what we're hoping for. The results of the test should be in tomorrow.

On the positive side, we seem to be making progress with calorie intake. We have slowly and systematically managed to increase the amount of liquid feed that we're able to get into Kay. We have also judiciously applied the Coke treatment where necessary, but have also found that it doesn't work all the time. She still either feels sick around 10pm every evening, or is sick. Marion just this minute sent me an SMS saying that Kay has been sick and that she's thrown her NG tube up. So now, because of her low blood counts, it will probably be necessary to give her a platelet transfusion before the tube can be refitted... Marion estimates that it will be 1am before this can be done. Whoopee, another very late night.

In summary, things remain very difficult and very worrying. My belief is that the CMV virus can be beaten, that a top-up transplant can be done without further ado and that we will get through this horrible period. The reason that I believe this is that nothing else makes sense, the integral of everything that is going on still seems to me to be positive. My analytical and quantitative mind at work. But this offers me more solice than any of the other alternatives on offer.

As usual, we look forward to hearing from you. Kay loves to get cards from people and to hear that there is a world outside her hospital room.