T+92: Blood Counts Collapsed

Yesterday was a bad day, to say the least. All week we had been looking forward to going with Kay to watch the arrival parade of the Nijmegen "Vierdaagse", four day walking event. This event, that attracts 40,000 walkers from the world over, involved walking 30, 40 or 50 km each day for four days. On Friday afternoon the walkers pass the hospital and their achievement is celebrated in grand style. The children have the chance, in bed and all, to be transported down to the curbside and to watch the celebrations. We were all looking forward to this very much. It would have been a great distraction for Kay and she would have been able to be outside and participate in life for a few hours and I had stayed at the hospital with Marion to enjoy the moment.

But in the event Kay was not allowed to go. Her blood counts, which had been stable at 0.4 (white cells) all week suddenly collapsed yesterday, dropping off the scale, ie < 0.1. Essentially this means that her bone marrow is back to where it was just after the conditioning therapy 90 days ago. Marion & I were absolutely gutted by this unexpected turn of events. But because the hospital was essentially closed yesterday we have not had a chance to discuss it with the BMT specialist so we have no idea what it means. We avoided telling Kay about the counts, we just told her that under the circumstances the duty doctor was not comfortable with Kay going outside, etc. And that if she did there was a big risk that she could develop a fever and be back on the monitor and need oxygen again, etc. Kay bought it rather philosophically and reluctantly.

This disappointment came after yet another morning when Kay had been screaming in pain from her bladder. The pain has become so bad that she started saying that she's just not strong enough to see this through and that she just wanted to go home and for all this to stop. She's fed up of being stuck in the same room with no idea when she will be able to go home, she doesn't know when the pain will end or what is going to happen to her. Marion was pretty much in a similar state, though with the pain substituted by the pain for her fear for her child. And I was having a very hard time to control my own sense of panic and fear. I think that it is fair to say that looking at the three of us, yesterday was one of the worst days yet, maybe the worst.

Further, after all the success with Kay's feeding, yesterday her weight dropped sharply as well. She has also been sick a couple of times in the last 24 hours. Again we have no idea why and it seems that neither does anyone else. Perhaps some part of her weight gain was fluid retention, but as she is on fluid balance I guess someone should know what. The most likely explaination for the sickness is that it's the virus since it isn't preceeded by nausea.

We had a serious talk with the duty doctor yesterday and she will focus on stabilizing Kay's pain relief. The problem is that the inside of Kay's bladder is infected with the BK virus and the normal stretching and contracting movements that the bladder does causes pain. There's not much that can be done about this, the doctor checked with a urologist whether a catheter would be better but the answer was not, that the catheter would irritate the wall of the bladder just as badly.

I struggled to understand why I was feeling so damned depressed and frightened yesterday. The facts are the that drop in Kay's blood counts doesn't really change anything. We already knew that she needs a boost transplant of stem cells and we had already been warned that her blood counts probably would not pick up until the viral load has decreased and the boost transplant has taken place. I'm not in much of a hurry to talk to the BMT specialist because I'm pretty sure that this is what we will hear - these events change nothing about her diagnosis or treatment. So why has my reaction been so strong? Why when I got home yesterday did I feel so incredibly bad?

On the drive back from the hospital I could only think that this time I'm the problem, that my mental state is so low that I'm not able to act proportionally to these kinds of events. I think that the same is true for Marion. So I went past our GP's and picked up prescriptions for the anti-anxiety medication that she recommended for both of us. I took the first table of the fast acting part of the medication last night before bed but I have to say that I didn't notice any effect. This morning I'm better than I was but only as a result of 7 hours of sleep. I'm now off out on my bike for 50km or so. That usually helps pick up my mental state. We'll see.

If they weren't already, these days are the hardest yet. An apparent backwards step in Kay's bone marrow, terrible symptoms from the BK virus, cabin fever from 7 weeks locked up in the same room with no end in sight. We're all exhausted. We need some good news, a solid development in the right direction. Another drop in the CMV virus would be good. A reduction in the acute BK virus symptoms would help. But better yet, a stable increase in Kay's white cell count would be wonderful. Please...