T+66: Perspective Now, Answers Later

The last days have been tough, but primarily for Marion since I had Saturday afternoon and yesterday off. It was wonderful for the first time in weeks to wake in my own, albeit new, bed and not have pressing obligations. But on the other side of the fence, Marion has been struggling with Kay's nausea and general poor condition. The final straw came this morning when the results of today's blood count came back: another drop in her counts, particularly her white cell count.

The problem can be seen clearly on the right side of the above graph, although the good (less worse?) news is that the rate of decrease has improved. But maybe that's because we're almost back to square one as far as white cells go.As a consequence of this the decision was made to go ahead with a bone marrow biopsy and this afternoon Kay was taken down to the operating theatre for the procedure - the biopsy is performed under general anasthetic. The biopsy was routine and the various samples have been shipped off to the hospital's lab and also to a national lab that provides a specialist second opinion. The question that needs answering is the obvious one: why is Kay's bone marrow failing to produce? In theory we will know the results of the biopsy late tomorrow. A consequence of the low blood counts is that before the biopsy Kay was given a unit of platelets and afterwards unit of red blood to boost her system.

This factual account of the day barely scratches the surface of the emotional tension that it contained. When Marion got the blood count results she called me, extremely upset. I talked her up a bit and promised to arrive in Nijmegen around 5pm. But the more I thought about her state, the fact that she'd been here all weekend and that Kay was going to have a biopsy the more I felt the need to get here asap. At 11.30am I cancelled the rest of my (fully planned) day and drove over to the hospital. I walked into Kay's room at 12:45. The atmosphere was terrible, you could cut the tension and worry with a knife.

Marion, Kay and one of our favourite nurses were present. Marion was transmitting emotional meltdown like a high power radio station, Kay was extremely withdrawn and tense. Even the nurse looked as though she was on the edge of tears and would rather be subject to an Venusian acid rain storm. Marion had requested an urgent meeting with our lead doctor to discuss the results of today's tests but, not least because I suppose that there was nothing new to say and other patients with more immediate problems, the meeting could not be arranged until tomorrow. Marion was pretty unhappy about this, amongst other things.

Marion handed me a print out of the latest blood counts and I immediately noticed that the differential white cell count indicated a relative increase in the number of lymphocytes, which *could* indicate the return of leukemia. My stomach turned and my whole body felt electrified with terror when I realised the implication of these numbers. But of course I also knew that this was a differential based on a very low count, so possibly one could not draw any conclusions from it. Irrespective, I then also felt the need to see one of the lead oncologists as soon as possible. I really didn't fancy spending the next day or two with this additional worry in my head. So I had a word with our nurse and the senior nurse and explained my specific worry. They promised that they would do their best to get us someone to talk to today.

The next hours were some kind of hell - we're slowly working our way through the full range of flavours. Marion was almost inconsolable, especially during the time we were waiting for the biopsy to be completed. I felt right on the edge of losing it, but I knew that Marion needed some support. So I gave her a bit of talking to. It was clear to me that Kay was to some extent frightened by the depth of Marion's fear. I asked her, for Kay's sake, to pull herself together at least while she's in Kay's or Natasha's presence. They cannot be expected to understand Marion's fears. I SMS'ed our GP, also a friend, to see if she could talk to Marion later in the day. Sometimes a professional shoulder, especially if it's also a friendly one, can be exactly the right thing.

When we returned to the ward with Kay, very quickly one of the lead oncologists stuck his head round the door. I had a distinct feeling that he felt that it was an unnecessary consultation, but b*gger that, I needed to get some answers. But therein lies the problem: at the moment there are no answers. We have to wait for answers. Still as I started talking to him it struck me that I wasn't after answers at all - I recognize the reality of the situation - I was after PERSPECTIVE. And it then also occurred to me that perspective is the key issue in these circumstances. If there are no answers then one can at least place the problem into some kind of perspective. Once I realized this I knew exactly what sort of questions to ask him:

Q) What about the white cell count differential?

A) The numbers are too small for the differential to have any meaning.

Q) Given the current symptoms, is medication still the top of the list?

A) Yes, it's the most probable cause but there could be other causes such as the CMV virus itself.

Q) What about the possibility that it's leukemia?

A) Leukemia cannot be ruled out but it would be very unusual if it returned at such an early stage given that everything else has gone well so far.

Q) Have you seen this kind of problem before?

A) Yes, it's not uncommon. Almost every patient has some kind of problem with viruses, including the CMV virus. These days there are a range of medication options that allow viruses to be combated.

Q) Does the anti-viral medication (merely) suppress bone marrow activity or does it damage it?

A) It suppresses activity. But it is necessary to take a look at the bone marrow to see what is going on. The marrow could be suppressed, it could be attacked by the CMV virus, it could be a rejection problem or a failure to grow. All these options need to be investigated and considered.

Q) And the treatment options in these cases?

A) Depends on the details, but ranges from managing medication to giving a bone marrow boost of some kind, perhaps even by a further transplant.

The result of this discussion is that my perspective has been broadened and put into some kind of context. As a result I feel more able to deal with the situation and, I dare to say, I think that Marion does too. However, we still need to wait for answers before we will have any idea of what to specifically expect.

The final step was to sort out Kay. After talking to the oncologist I told her that I was now feeling much better and what would she like to know? She asked if the leukemia was back and I gave her the above answer from out of my new found perspective. I went on to talk to her about the day and about Mama and how much she's worrying but that she was also feeling better. Kay brightened up considerably, mostly I think because she had been afraid of the biopsy, but also because of the reduction in tension and fear around her.

I told her that this whole thing is a fight and that we win it in our heads. Mama and I have to stay strong and look after her, and she should try to do some things for herself. I said that little things, like drinking and trying to eat something and trying to build up her strength were all ways that she could fight back. She seems to have taken this to heart: this evening she has drunk well and eaten a little lasagne. She's now fast asleep and I hope that she wakes up tomorrow feeling a little better.

Now it's my turn to try and get some sleep.