T+86: Mama's Birthday / New Virus

Today (Monday) was Mama's birthday. She had the good fortune to be able to enjoy it at the hospital. But Kay had a surprise in store, she had arranged a special breakfast-in-bed for Mama. The staff decorated the door outside Kay's room and hung a poster on the wall wishing Mama Happy Birthday. I brought Natasha and Lauren with me in the early evening and we had a whole 90 minutes together doing the cards-and-presents thing before Marion took Nattie & Lauren home. Not a bad day, but not a good birthday either.

On the medical front, Kay is doing better with respect to calorie intake and general nausea. The new liquid feed seems to be tolerated by her system much better and we're now able to pump it into her at reasonable rates. We're still not hitting the target of 1600 calories per day, but we're doing better every day. And the most important thing is that her weight is increasing, it's now above 28kg, which is a decent improvement. Kay has more energy and is sleeping less, although she is still very tired.

I mentioned last week that she was starting to suffer from a bladder infection, lots of pain urinating, etc. At the end of last wek two cultures of her urine were taken but both provie inconclusive. However she was started on an antibiotic, just in case. On Saturday things took a turn for the worse. She was literally screaming with pain when she had to pee and breaking my fingers while holding my hand during the process. She had to pee at least every 30 minutes, so you can imagine the all too frequently repeated scene. I was going crazy running backwards and forwards with bedpans.

Around midday I kicked up a mild fuss that nothing was being done to alleviate Kay's pain. So the duty nurse called the doctor, who prescribed additional medication to relax Kay's bladder. But the pain continued. In the evening I again raised the subject with the late shift nurse. She too felt that Kay was in too much pain for a simple bladder infection and she called the doctor again. Again, without coming to see Kay, the doctor told the nurse that all was being done that could be done at that point. By this time Kay been being pissing razorblades for more than 3 days.

On Sunday Marion started making a fuss about the matter. Kay had been sick and thrown up the NG tube without having felt nauseous. This was something different. By coincidence the duty doctor happened to be making a routine visit when Kay had to pee. She then became concerned that Kay was in way too much pain for a normal infection (deeerrrr) and decided to do something about it. The concern at that point was that Kay could have got another virus - the BK virus - to which BMT patients are also susceptible after a transplant. The doctor arranged for an ultrasound echo to be made of Kay's bladder and it turned out that walls of her bladder were way thicker than normal. Also she started to show blood in her urine. The doctor was then rather motivated to quickly identify the cause of the infection. She arranged for a urine sample to be urgently tested for the BK virus. This test normally takes two weeks, but Kay's case was seen as very urgent and therefore the results were expected in 24 hours.

The results came in late this afternoon and sure enough Kay has the BK virus. The doctor was pleased by this outcome. The BK virus can be treated and I gather from her phraseology that the alternatives are much worse. The interesting thing though is that the treatment for the BK virus also attacks the CMV virus. So the current CMV virus treatment has been stopped and tomorrow the BK virus treatment will begin. The good news with this treatment is that it only runs three times per week. The bad news is that the medication can damage Kay's kidneys and therefore a protective medication must be given 3 hours before the treatment and twice after the treatment. Also, Kay must be hyperhyrated during the treatment. The good news is that this drug is not (as) toxic for bone marrow (but for kidneys instead). The bad news is that the BK virus does suppress bone marrow activity. In other words this is a damned tricky medication and, while the load on Kay's bone marrow from the current CMV treatment will decrease, the new virus will compensate. Whether this is better or worse, no-one can say.

The biggest downer of this twist in the story is that we were on track to be able to take Kay home later this week or sometime next week. Most of the care had been arranged for Kay to get the 2x daily intravenous medication for the CMV virus at home. I suspect that the new medication is just too tricky to be done at home and that we're going to be stuck in hospital for many weeks yet. The doctor was non-specific about how long it will take the BK antiviral to bite, but it's clear that it will take at least a week and probably longer. We had hoped that Kay would be able to celebrate her birthday (2nd August) at home, but under the circumstances I doubt that this will be possible.

The paperwork requesting an additional stem cell donation from the donor will has probably gone out of the door today. So we're on course for a top-up transplant in the next weeks. Let's hope that we get some synchronicity in the events and that this new drug plus the antibody treatment for the CMV virus reduces Kay's viral load such that when the transplant arrives her system is able to offer it a 'cleaner' environment.

The only thing that I'm left wondering about is, if the BK antiviral also attacks the CMV virus, why has this drug not been tried earlier? Why the (expensive) antibody treatment instead. I suspect that I can guess the answer and I suspect that I'm not going to like it very much. But tomorrow I have a meeting with the head oncologist, so I'll ask her.

It's late now. Kay is sleeping peacefully, so I'm off to bed myself.