T+54: Finally, an overview

I was driving in to work this morning when I got a call from Marion: "You need to come to Nijmegen as the lead oncologist wants to talk to both of us today". So I carried straight on on the motorway, sailing past the Waalre turnoff. But the call rattled my cage. What could be so important that I had been summoned?

Possibly the explaination lay in yesterday's "happenings": in the early afternoon Kay had a visit from the ophthalmologist (a major spelling challenge, requiring a visit to http://www.dictionary.com/). The reason for this visit is that the CMV virus, present in Kay's blood, can cause inflamation in the blood vessels of the retina which can result in scarring and loss of vision. The ophthalmologist (copy & paste is quicker than trying to write this word again) noted a number of "hot spots" on the retinas of Kay's eyes, possibly associated with the CMV virus. I was pretty shaken by this so I asked her what would happen next. She said that Kay would be kept under careful control. I asked her what this meant, weekly checks? She said, on no, it would be daily checks starting from tomorrow. Shocked again, I said that if they're all of a sudden going to start with daily checks, would it not have been better to have started checking Kay earlier? It was then her turn to be surprised. She replied that she would have to consult on the matter, but I could read from her face the real answer.

This was the last straw for me. If you've read the blogs from the last days you will know that we're yet again struggling with poor communication and lack of oversight of Kay's treatment. We're also being starved of information to the extent, again clear from this blog, that I really don't actually know what's going on with Kay, why the medics think we should still be here and what the prognosis is for various things such as the para-'flu virus, the CMV virus, the need for oxygen, Kay's loss of weight, her weakness and her shaking hands, etc, etc. So I went and quietly kicked up a fuss.

The advantage of being known as a parent-with-an-opinion and of being involved with the complaints commission is that when I make a quiet fuss people listen. So within a few hours our erstwhile "red line" doctor appeared to listen to my grievances. I started with the eye issue (my paste buffer has something else in it now) and why Kay hadn't been check earlier. I then recounted our experiences since being at home, the weight loss, the poor condition. I mentioned that we'd now taken over Kay's medication, etc. He was pretty shocked. He thought that things were going so well. He's seen Kay's videos on Youtube and hadn't realized that we're now talking about a different child. In the end he said that he wasn't our "red line" doctor anymore (news to me!) but that he'd take it up with our lead oncologist (the new "red line" doctor?) and arrange a meeting for tomorrow (today). I said that Marion would take over from me and that she would handle the discussion with the oncologist.

Back to today, even though Marion could deal with such a discussion without me - I'd emailed her a list of my questions - it could be that the summons that I'd received this morning was related to the aforesaid meeting. But also it could be something else. Specifically we'd recently heard of a child who, post BMT, got the CMV virus and spent months fighting it only to have her leukemia return. She had recently been sent home, no further treatment possible. Now, we know that there are considerable differences between the cases, but try holding that thought in your mind when you have been summoned to a meeting at short notice...

In the end the meeting was about Kay's current condition, her prognosis and the events of the last few days. Although I express more or less constant criticism of the systems in this hospital, I do have deep respect for the staff. The lead oncologist ran the meeting perfectly and took the time to explain the thinking of recent weeks regarding Kay's situation in terms that Marion and I could follow. Seen in this light her reasoning was completely sound and understandable. What it breaks down to is that Kay's symptoms of the last week could be explained by a sudden increase in the CMV virus or something else. The "something else" being a para-flu virus, which showed positive in the recent tests.

Such symptoms from the CMV virus would be a serious matter, from a para-'flu virus not. It seemed to the oncologist that such a sudden increase caused by the CMV virus didn't make sense, all things considered the level of the CMV virus in Kay's blood is still too low to expect such effects. Therefore she feels that the symptoms are most likely explained by the para-'flu virus. But nothing is certain and they remain cautious about drawing definitive conclusions. I asked about the hot spots on Kay's retinas. She said that the ophthalmologist who looked at Kay was still in training and that she should not have discussed her conclusions with me before conferring with her supervisors. In fact there a number of other possible explainations for these hot spots, including persisting effects from the leukemia. On Thursday another ophthalmologist (qualified, I assume) will take a look and give a definitive opinion.

Looking forward, the oncologist could not make any predictions about how longKay is likely to be in hospital. Her total condition, including her weight loss and psychological state, etc, are still a (holistic) cause for concern. And until she has fought off the para-'flu virus, as indicated not least by her continuing need for oxygen, she will be kept in.

The conversation continued to cover a range of other things, too many to relate here. We reached an agreement that this oncologist would from now on be our single-point-of-contact should we have problems and questions and that we will meet with her minimally once per week until such time as things with Kay improve. She will also be available to us at any time, should we feel the need to talk to her. You can see what I mean, I think? There's nothing wrong with the individuals round here. Further we agreed to physiotherapy and psychological support for Kay. Again these are areas where the department excels.

I returned to work following the meeting and then spent the rest of the day wrestling with the business. I finished the business day with a 5.30pm - 6.15 meeting and then raced back to the hospital. Now I'm on parent duty until tomorrow evening. Tomorrow promises to be a busy day with visits from the ophthalmologist, psychologist and physiotherapist.

And now I'm exhausted from all this challenging spelling, so I'm going to tackle a suduko pizzle instead.