Stories from the week (2)

It would not have been a normal week in Nijmegen without the now customary bizzare medical happenings. On Wednesday evening we had a planned meeting with the specialist in charge of kay's case. Actually, I gather he's not really in charge of Kay's case. He's just our contact person and his specialism is lymphoma. The leukemia specialist is The Professor himself, but Kay's case is actually dealt with by a review panel.

As we walk into his office, the specialist opens the conversation by saying, "So have you made a decision regarding a bone marrow transplant?". I was instantly alert, "Sorry, what do you mean?". So the specialist starts to tell us that medical technology has moved on greatly in recent years and that bone marrow transplants are not nearly as risky as they once were. In fact transplants from parents who's cell type only half matches that of the recipient are increasingly successful, etc, etc. My interpretation was that we were being offered a choice as to whether Kay should have a bone marrow transplant or not.

To put this in perspective, the first 5 weeks of the protocol are the Induction Phase. At the end of week 5 a bone marrow sample is taken and tested to see if it the cancer cell count has dropped below Minimum Residual Disease (MRD). We have been waiting now nearly two weeks for the result of the MRD test, which takes 2-3 weeks. If the MRD level is lower than a certain figure then we had been given to understand that the protocol would continue based only on chemotherapy. However if the MRD is higher than this figure, further treatment would lead automatically to a bone marrow transplant, the reason being that the higher count indicates that some cell types have possibly become desensitized to the chemo. From week 5 to week 13, the Consolidation Phase, the treatment remains largely the same, but after week 13 things differ depending on the MRD result. It had never been suggested to us that we had a choice in whether Kay got a bone marrow transplant or not.

So, back to the conversation: The specialist tells us that the results of a bone marrow transplant are nearly as good as those from continued chemo. In fact there is a view that in some cases the fact that the child had a high MRD and ended up having a bone marrow transplant could have been the factor that saved their lives on the long run... The major risk of bone marrow transplants these days is viral infection. So of course we asked how that could be controlled and the answer was more or less that it couldn't, it was pot luck.

Since were being asked to form a view c.q. make a decision about a possible transplant, my mind went into overdrive. I have been reading a book about Hematology recently, which has given me a vague outline of the issues involved. So I set about asking a variety of amateur questions to try and understand the issues involved in such a decision. Eg, can a patient who has had two years of chemo then have a bone marrow transplant? Can a patient who has had a bone marrow transplant have chemo? Etc, etc. But of course in the end one has to get the opinion of the specialist themselves. So Marion asked the relevant question: "What do you recommend?". The answer was even more puzzling than the previous conversation: "I recommend following the protocol". Hmm.... what does that mean? So I said that I didn't understand. Did the protocol allow us a decision or not? Then the specialist looked confused. So I explained: at what point are we supposed to make a decision and how does this related to the MRD result? Then the light apparently went on with the specialist. "No, no", he said, "The MRD does indeed dictate whether the patient gets a transplant or not. But some parents worry that a transplant is very dangerous. I was merely trying to explain that a transplant is not any more dangerous then two years of chemo and in fact can sometimes been seen as potentially a better treatment for some patients." Well, OK, fine. However, even as I sit here writing this I still don't understand why the conversation started with a question about our decision. In fact, I don't really understand it at all, except that the specialist was trying to put us at ease in case the MRD turns out to be negative.

You know, I wasn't worried about that at all in the first place. But I am now. Actually the biggest effect of this conversation was to remind me that we are indeed playing with fire, that we have a dangerously sick child on our hands and that the relative ease of this whole week has been an illusion.