Safety is no Accident

I’m kind of past the point where I feel able to write down how I feel about everything that is happening. On the one hand I think that actually I/we are doing OK. On the other we live in such a displaced reality that the word “OK” cannot calibrated to normal living. I mean, how can things be “OK” when for the last week doctors have been pumping Kay’s body full of toxic chemicals to kill her bone marrow?

But this sense of “OK-ness” persists for some perverse reason. I’m left wondering if we’ll ever return to normality when “OK” means to us what “OK” means to you. Or will we end up living the rest of our lives in the shadow of leukemia? That’s really what worries me: whether there will ever be an end to this episode. I’m afraid not. I think that when we’re through the bone marrow transplant phase, Marion and & I spend a very long time worrying – at least seven years to say the least. And you know what? I really don’t want to spend my life like that, not that I have much choice of course.

So how can one possibly return to a world where “OK” means to me what “OK” means to you?

Back to slightly less philosophical matters, I probably don’t need to say it, but I’m staggered that the medics here have made yet another blunder with Kay’s treatment. I’ve now had 24 hours and 93km on my bike to think about it and I still cannot get my head around the idea. In the worst case we could have brought a child to this hospital with leukemia and taken anyway a child with brain, kidney and bladder damage. Not to mention the expected permanent side effects of the treatment. And you know what makes me really mad? I can live with problems that arise from a doctor having to make a judgement call and getting it wrong. Ditto with failures of medical technology. But the fact that the things that have happened to us have been avoidable failures of the system makes me incandescent. Whatever happened to the Hippocratic Oath’s “do no harm”?

And the other problem with these failings is that they are faceless. No individual directly screwed up. The problems arose in the gaps between people, in the places where a system is supposed to exist to ensure consistency and continuity.

The UK Civil Aviation Authority’s motto is “Safety is no Accident”. The Hippocratic Oath’s “do no harm” can be equated to (at least) a doctor’s duty to ensure that safety of their patient at all times. And that is not happening here. Time after time Kay is being exposed to toxic chemicals without adequate safety precautions. If this was an aviation organization, it would have been shutdown years ago. I’m truly astonished that these people are allowed to go on practicing medicine in this way. Someone should have blown the whistle on them ages ago.

Intensive Experience

We’ve been hanging around in the High/Intensive Care unit for a day and a half now. I have to say that it’s an experience that I’d rather not repeat. The atmosphere in the place is so incredibly grim and intense that just being here weighs heavily on one’s soul. Of course, what should one expect from a department that looks after critically sick children? But the answer to that question is theory, which in this case is quite some distance removed from reality.

It’s difficult to describe the reality. On the one hand the department is extremely “gently” presented, lots of light, lots of space, pictures and toys around the place. The staff are friendly and professional. Even the equipment and patient bays are not particularly intimidating. In fact there’s nothing physically grim about the place at all. Also, in general the bedside parents are only as worried as one would expect (ie terrified). But they’re coping, as are we.

So why is it that I experience such a grim, intense atmosphere? I find it very difficult to say, actually. Strangely enough, I don’t think it has to do actuality of the unit. I think it’s more to do with the fact that in this department one is only separated from the potential death of a child by a very thin veil. And one can feel it all around. When you’re here you’re close to life shattering, irreversible consequences.

Here, I feel optimistic about Kay for some reason. One nurse said to Kay that she wasn’t used to having to deal with patients that talk back or want to get out of bed to pee and I think that’s what makes me feel optimistic. But that’s not to say I don’t have my worries, of course I do. And in any other place my worries would be off scale. But everything is relative – the last months have taught me this in the most explicit terms - and here there are worse things. Are you starting to understand what I mean?

Yesterday a family lost a child in the IC. The McD parents room was crowded with grieving relatives and again today. With the greatest respect for this family, as the parent of a child lying the HC/IC I found it extremely difficult to be exposed to their grief. Kay is in an isolation room in the HC unit, a small space full of equipment and no windows. Kay wants the light kept down so we’re sitting in a box in permanent twilight. Every now and again it is necessary to have a break, get some air, lighten one’s soul. But every time I step out into the McD room, I’m again confronted with this family’s pain and I end up – literally – hurrying back to Kay’s bedside. I’d rather sit here in the gloom watching Kay’s monitors and worrying about her than be confronted with what is on the other side of the oh-so-thin veil.

Waiting game

This waiting game is extremely tough. Working on the assumption that the conditioning will begin on Monday, I'm now almost finished with clearing my desk/action list for the next weeks. This is extremely confrontational, since there's now nothing between me and what happens next.

The tension and emotional build up is indescribable. I think that if a gun went off right now I'd break the world record for 100m.

I'm fine, really!

People keep asking me how I'm doing. This is an incredibly difficult question to answer when it comes down to it. But the simplest answer is that I'm doing quite well, I suppose. Like Kay, I'm keeping myself fully occupied with work and everything and anything else that I can think of strong enough to distract me from what is coming. And I think I'm doing that pretty well. Admittedly a few aches and pains here and there, but I'm dealing with those by visiting the Physio a couple of times per week.

My weak spot is my neck and shoulders, particularly my right shoulder, which is pretty painful at the moment. But, yeh, this is where I always feel a build up of stress. Apart from the treatment by the Physio, I'm supposed to spend 2x10 mins per day lying on a backstretcher. This device is great for loosening up a stiff back/shoulders. Normally I can spend 10 mins lying on it but my back is so stiff at the moment that 5 mins is more than enough. So I have something to aim for! Still none of this really gets in the way of anything.

A bit more annoying is that for the last week or so I have been waking up with a headache, the kind that feels like a fairly heavy hangover. And this has been happening even when I hadn't had a drink the evening before. Starting the day with a headache makes it even more difficult to get moving, but I have a lot of things to do, so I've taken to killing it off with ibuprofen. This has the added advantage of making my shoulder less painful. Also, I suspect that neck/shoulder issue might be causing the headaches, but I would then expect them later in the day, not when I wake up. A puzzle.

It's a shame that ibuprofen doesn't help irritable bowel syndrome problems, because then I could kill three birds with one stone. IBS is an old enemy of mine that comes and goes with the times. I've been pretty free of it for the last year or two, but yeh, it's back again. Exercise helps greatly to reduce the symptoms, but that's something that I can only really do in the mornings at the moment. By the time that evening comes around I'm just too tired to get on my bike or the cross-trainer. I was planning to jump on the cross-trainer yesterday morning, but in the end was beaten by the headache.

Another side effect of this is that I'm not burning the usual amount of calories. Combined with a reduced will to exercise and general tiredness my self discipline has also slipped meaning that I've put back on 5kg of the 10kg that I lost a year or so ago. I can feel it when I'm cycling, like dragging around a weight belt. Annoying, but you know, I'll sort that out when life gets back to normal-ish.

I was lying in bed this morning, waking up and lazily thinking about the general need to get up and do something when I felt my nose start to run. Not the normal cold sort of run, but a warm trickle - nose bleed. Fortunately only a minor one, but rather out of the blue. It set me thinking: maybe all this worry is having more effect than I'm admitting. But yeh, what can one expect? Fortunately none of these things are actually getting in the way of living the day out and none of them are strangers to me. Bearing in mind divorce, leukemia 1, Verum and leukemia 2, I've lived my life with one or more of these symptoms for many years now and I'm still just fine. Aren't I?

Anyway, I have to run. The long hours of working & computer use have given me the beginnings of "mouse-arm" in my right wrist and lower arm. I have be a little careful not to push my wrist too hard or the blogs will be silenced. The one advantage of starting the BMT will be that my wrist will have some time to recover.

So yeh, under the circumstances I'm just fine, really.

Barbaric Alchemy

The eye of the hurricane is a very beguiling* place (*I had to look that word up in the Dutch - English translator. Only the Dutch version, verleidelijk, came to mind. Just shows that I've been living here too long). Things are almost 'normal' at the moment. I'm working more or less full time, Kay is at school more or less full time. She is playing hockey and horse riding, etc, etc. Almost like real life.

However, 'almost' is the most significant word is the last sentence. In normal life one doesn't have conversations about Total Body Irradiation, etc, whereas in this Neverland in which we live such conversations seem almost normal. And that's the odd thing about the last week. We have been to the hospital twice and we have discussed the ins & outs of a Bone Marrow Transplant, we have heard about and understood the horrors of Conditioning, Kay has been milked for blood, we have blithely chatted with the Radiologist whilst stood in the radiotherapy chamber and then we have gone home, had lunch and gone back to work/school/'normal' life. This is SUCH a BIZZARE situation.

However, its not going to last much longer. The horrors of the situation are going to return with a vengence, that's clear. And it's very scary. So the only way to deal with that is to throw oneself into 'normal' life with a vengence equal and opposite to that which is coming our way. And that is clearly what Kay is doing, what I am doing and, I suppose, Marion too. In the last six years Verum has been the biggest bane of my life. At the moment it has become the biggest, best and most welcome distraction. Weird. Nothing about Verum has particularly changed to elicit such a shift in my point of view, so it must be me that's changed. Evidence of just how much one's perspective can be changed and what consequences can flow from nothing more than an altered mindset. The power of thought, I suppose.

The thing that I find most scary at the moment is the idea of sitting my precious daughter at the wrong end of a defocussed gamma ray generator for an hour, during which the generator will be turned on for 30 minutes, irradiating her from head to foot. As a physicist, this seems to me to be an especially bad idea. Side effects will include nausea, damage/destroyed mucus membranes, etc, and can include cataracts (like cooking an egg in a microwave, I guess), hormonal problems and an increased risk of secondary cancers in the future. This seems to me to be such barbaric medicine: smash everything to pieces and see if we can rebuild a person from the remains.

It's definitely true that, if we were not already there, we have now entered into the dark side of medicine where treatments are essentially nothing more than barbaric alchemy. The first time that Kay had leukemia it struck me that the treatment was really an alchemic process, although in these modern times we use modern words, we call it a "protocol". It interests me greatly that so much of modern medical technology takes the form of protocols. Medics have learnt through the years that by combining treatment A with treatment B with drug C in certain amounts and ratios and in a certain sequence that sometimes a positive result is achieved. Like turning lead into gold maybe?

Again, as a physicist and computer guy this sounds like poor science to me: dip the patient into chemical soup and bombard them with gamma rays. Then inject someone else's stem cells into their body and cook for 4 - 6 months. Open oven and, cross fingers, a cured person will emerge (with a new blood group and a reset immune system). The crudity of it is astonishing. And frightening. And indicative that the medics don't really have much of a grip on what is going on here. They have no targeted, specific techniques by which they can address the problem, the tumour, at source.

Another thing is that most of the drugs involved in this alchemy were invented in the 50's & 60's. I keep looking up the drugs that Kay gets to find that eg Vincristine was invented (discovered, actually) in the 50's, etc. Certainly since Kay first had leukemia not much has changed on the treatment side, although new technology has merged in the diagnostic side, eg the Minimum Residual Disease measure. As someone who lives in the high tech and rapidly developing world of computers and software it feels to me that medical technology creeps along at a snails pace and that, although we have gone very far with some very subtle things, for instance the decoding of the human genome, we're still at a medieval stage when it comes to treating a range of common problems/diseases.

When I think that my iPhone includes chips that have been massed produced using techology that works on the 25 nanometre scale, that is a physical expression of the exact sciences of physics, chemistry and mathematics made it possible and that there are factories the world over who are routinely stamping out millions of chips per year at this or lower scales, it seems to me that medical technology has a long way to go by comparison. I hope that the day will soon come when medics will be able to cure a given disease using specific, targeted treatments. It would be wonderful if they could simply inject Kay with nano-machines that were able to specifically identify her faulty pre-pre-B cells, kill off all these cells whilst stimulating her stem cells to manufacture new pre-pre-B's without the genetic corruption that is causing all her problems.

Well, dream on. I suppose I shouldn't moan. At least there is a treatment for Kay's condition, even if it is barbaric alchemy.

Heart of the Storm

I have the feeling that the heart of the storm is approaching. Next week's MRD will dictate whether we're dropped straight into the main event of Kay's treatment without a break, with a high level of cancer still in Kay's system and the likelihood of having to compromise on the quality of the donor match. Or whether the cancer in her system has continued to respond to treatment, whether we get a short break and some time to marshall our strength and whether there is more time to find better donor.

The first alternative is very worrying. It means that Kay's cancer has remained resistant to further treatment and that we will be pushed into a BMT in compromised circumstances. My gut feel says that this will be a much harder path than the second alternative. And what also worries me is that so far at every junction we have taken the more difficult route. Irrespective of everything that we have been told, everything that we have considered, I don't have the sense that Kay's cancer is particularly amenable to treatment. So it really would not surprise me if her MRD is above 10^-3 next week, that we have to immediately deal with another round of heavy chemo, that either Marion or I end up being the donor, that the BMT is harder and less certain as a result. Nothing about this situation so far has offered us a break and it doesn't feel to me like a situation that is going to offer us a break.

I don't mean to sound defeatist, defeatism is not in my nature. However Marion and I have joked in a fatalistic way for many years that the light at the end of the tunnel is the next train coming and that we have seen our (un)fair share of tunnels in the last 12 years. It would therefore be entirely in keeping with our history for the tunnels to continue for a while yet, for us to be tested even more deeply than we have been.

Just writing this statement makes me feel tired all over. And when I look at Marion I see that her face needs ironing and that her tears are never far away.

Please can we have a break? Can we have a little ray of sunlight apart from Kay herself? Can we avoid having to face the darkest and most difficult path?

There was a time when I was a little kid that whilst staying with my uncle I stole a pocket knife out of a draw in his house. Later my mum found and recognized it. When my uncle next visited she took me into the kitchen, gave me the knife and told me that I had to give it back to my uncle and apologize. Otherwise she would tell my uncle and she would ensure that the consequences would be infinitely worse. I remember I absolutely did not want to face my uncle. My legs felt heavy and my feet stuck to the floor, my head hung down like it was too heavy. I had to drag myself to face him in front of everyone in the room and every step became harder, like some kind of anti-gravity. To this day I remember the whole thing clearly, the fear was so great. The only thing that kept me moving was knowing that there was no going back because the alternative would be worse. It wasn't strength of character that made me face my uncle, but rather fear of the alternatives. (I suppose you could always argue that it was mum's strength of character that drove me on).

And this is how I feel about the remainder of Kay's treatment. There's no going back, the alternatives are infinitely worse. So the only way to go is forward, whatever happens. That it's not strength of character that's going to get me through this, I absolutely do not want to face whatever comes next, but simply fear of the alternatives, fear of failing to do the right thing. Fear of not looking after Kay, of not putting her first. Fear.

In every other situation that I've faced where fear was a factor I have dealt with the it by looking it in the eye, by understanding what it was about. For instance, when Verum has been in a tight financial corner, when we have had to face the very real prospect of running out of money, of failing, when I have been waking up at night covered in sweat from stress and fear, I simply looked deeply into the figures, I worked to understand the situation, to look into it and beyond it and to decided what to do. Fear then vanished, banished by the light of knowledge and the power of action.

But this situation is different. In this case fear of the known is worse than fear of the unknown. For instance, imagine that I sat down and did some internet research on bone marrow transplants from haploid donors and learnt that the success rate was 20%. Imagine that I looked into the survival rates of children with the kind of relapsed leukemia that Kay has and I learnt that it was 15%. What would I do with this information? I can tell you: it would paralyse me. It would destroy my (crumbling) mental control. It would mean that every minute of the day & night I would be haunted by images of life-without-Kay. Further, even with this knowledge there are no actions that I can take to changes thing, to bring about a better result. In principle our lot is already cast in the genetic signature of Kay's cancer and there's nothing I can do about it. So in this case fear cannot be banished by knowledge and the power of action. So I have to live with the feeling of having to drag myself to the moment of reckoning, with every fibre of my being begging to find an alternative, any alternative that means that I/we don't have to face that moment.

So, it would be so very nice if we got a little ray of sunshine, some indication that fate has not completely set its face against us.

BTW, my uncle, bless him, forgave me and gave me the knife. A lesson that I have remembered all my life.

Christmas Thoughts

I've not added to my own blog for weeks, mostly because I guess that I'd become accustomed to the situation and also because I've been too busy and too tired to expend much energy on self reflection. The initial feelings of unreality that I'd felt have passed, replaced by some kind of mind numbing acceptance of our daily reality. I've become adept at not asking certain sorts of questions, not allowing myself to think certain kinds of thoughts, not counting on realising any plans, not allowing myself to think about the future. I've tried to find joy in immediate things, things that happen by the minute, things that are small scale, details of short term life: a dry witted remark from Lauren, an acute and funny observation from Natasha, a laugh from Kay. These things are precious of course and I probably don't appreciate them enough under normal circumstances, but they don't fully compensate for losing the future.

This is no way to live one's life. Certainly, it's against my very nature to focus on micro events. I always have plans. When I reach A, in my head I'm always already planning and heading for B and I have C in mind. I have viewed this as one of my greatest short comings, the fact that I never stop and absorb or enjoy the here-and-now. It makes life rush past rather (too) quickly. One facet of this is my inability to enjoy "moments of celebration". Usually when such a moment is reached, such as closing a business deal or launching a product, my mind is already over the horizon and the moment of celebration seems irrelevant. So I suppose, on the basis of "the things that happen to us reflect the lessons that we most need to learn", I should welcome the current situation as basic lesson in establishing a better balance between the here-and-now and the future. But frankly, in my current "stripped down to bare metal" state of mind I have no time for philosophical sops, they offer no protection against the daily harsh reality of having a child with High Risk Leukemia.

The problem with this time of the year is that it's full of reflection, of past and future. Frankly this is overloading my "think only immediately" mental dampers. I know that Marion is also suffering from a similar problem. She has been bursting into tears at the drop of a hat all week and, without even having spoken about it, I know that fear of the future and the difficulty of the present is just too much for her. She's only just able to continue functioning. And I'm close to being in the same state, though for me the effect is different. I just try to retreat further behind my mental firewall, which to everyone on the outside (of my head) seems to appear as an increasing distance/detachment from daily/social matters. For instance, in the days leading up to Christmas many of my colleagues came in to my office to wish us a Happy Christmas and to offer their hope everything would go well, etc. I found it extremely difficult to deal with these very kind and dear thoughts and good wishes. I just wanted to be left alone because right now I can't deal with good wishes for the future, because we don't have a future. Or rather, contemplating any aspect of the future, even in the form of wishing us a Happy Christmas, threatens to break my mental dampers.

And here's the dilemma: on the one hand, I/we need to feel/receive support more than ever. Every kind word, comment, email that we get is treasured and makes us feel better. On the other hand, I find it extremely difficult to deal with anything that even vaguely touches on the future, or the past for that matter. For instance, just consider the word "hope". This is a word that is completely filtered out/banned from use by my mental firewall. I have no interest in the concept of hope. If it's one thing that I have learnt, when it comes to pure fate things are what they are and will be what they will be, no matter what I might hope for, no matter what I might wish. Specifically, Kay's cancer has a dimension to it that is to a certain extent resistant to the chemotherapy that she had 7 years ago and to the chemotherapy that she's getting these days. That's why her MRD is high, that's why she needs a bone marrow transplant. The idea is to reach the lowest possible MRD with chemotherapy and then kill off the rest of her bone marrow in the hope of killing off enough of the chemo-resistant cancer cells so that when new bone marrow is transplanted the very, very few residual cancer cells left will be cleaned up by the body's natural defences. However, no-one can say for certain if this will work. So it's down to fate. There's nothing that I can do to influence the outcome. No amount of hope, no amount of wishing or praying or anything else is going to affect the outcome. So I don't plan to think about it, just merely still be here when the result becomes apparent.

Mental firewalls have their limits, at least mine does. It has worked effectively enough during the last weeks, but in the context of Christmas it has barely been holding its own. Frankly, I'm terrified. I'm terrified that next Christmas there will be a gaping hole in our family. There, I said it. Now I can't see the screen through my tears. Wait a sec, I have to pull myself together...

During the last days, and especially, nights I have found it increasingly difficult to turn away from such thoughts and their consequences. Even during the day, focussing on the minute-to-minute moments and trying to treasure them, part of me is wondering how many more of them there will be. Again, one can call on a philosophical sop and say that none of us know the answers to these questions, that I could have a heart attack on my mountain bike later today. But this is of course merely a sop, the abstract versus cold reality. Cold reality wins every time in my book. So, right now I feel like the Grinch: I hate Christmas.

And New Year will be worse. I know for certain that the closer we get to New Year the more inconsolable Marion will become. And I hate New Year at the best of times. In the last years I have found an antidote to New Year, namely walking on the beach in St Cyr (near Bandol) with the family & good friends followed by sitting outside in the winter sun drinking wine at a nice restaurant. However neither of these things are possible this year and we can't arrange to have friends round on New Year because anything can happen between now and then. So, just let us return to the other 50 weeks of the year when we're not confronted with a constant stream of relativistic moments and messages, and the impossibility of having a social life during the most social weeks of the year.

I have delayed going mountain biking to write this because I felt so extremely awful, having just waved Kay & Marion bye-bye. But writing is cathartic to an extent, surprisingly enough. So I'm off to see if I can't cheer myself up some more in the woods. Frankly, I'd better just press the "publish post" button and not reread this or I'm likely to pull it - such emotional stuff. So forgive me any spelling or English mistakes...