Final entry

Now that our Kay has departed I will not update this blog anymore. Marion & I will update our own blogs (see links right) with details of funeral arrangements, etc. We are missing the addresses of many people with whom we have had contact via the blog. We'd like to send you all a remembrance of Kay, so please send your contact details to Marion at howe dash family dot org or Robert at howe dash family dot org. I wrote our email address like this to prevent spamming.

Kay Eleanor Howe: 2/8/2000 - 19/9/2010

5)time of death 7:35 am


The End

End in Sight

Kay's heart is failing. Alarm phase one, for the last time, I think.

Bedtime Thought

The number of candles burning around the world for Kay means that we'll soon have to apply for a carbon emissions license and buy in quota from some green minded power plant. This could get expensive.

:-)

Nite Nite.

Pattern of the Days

It seems that Kay is determined to start our days with a big scare and finish them quietly. At least, this has been the pattern of the last days. Marion has proposed a solution to this apparent problem. She has determined that Kay doesn't like being left alone at night, so she's proposing to sleep on the plastic garden chair in Kay's IC room.

I'm dead set against this idea, Marion is already on her nth pair of last legs and losing more sleep seems to me likely to result in me ending up with two patients. (Sorry, but this time I am thinking of myself). At the moment we have reached a compromise which is that she will stay with Kay until midnight and then come to bed. But do I trust her? Hmmm... We'll have to see.

Kay is stable with reasonable blood gas figures. Feeding into her small intestine has now reached a volume where intravenous feed has been stopped. Due to the heparin used to protect the dialysis filter, Kay has developed some very nasty looking hematomas (bruises/bleeds) on her body. The heparin has now been stopped, so it is likely that the dialysis filter will quit shortly. When this happens, dialysis will be stopped and we'll see whether Kay's kidneys can do the work. So far they have been doing a good job the last days.

The most bone marrow toxic medications were stopped yesterday in preparation for the bone marrow boost. This should also help her bone marrow to recover more quickly. The risk is that the CMV virus will gain ground, but we think that the alternative medication worked better anyway (but I'm learning that I'm wrong about 95% of the time with these kinds of things).

Anyway, I'm off to bed. Tonight is an exciting night. By special arrangement we can sleep in real beds. I'm hoping to count a lot more sheep... and spend more time with Kay in my dreams.

Back to Yesterday

Kay's state seems to have stabilised at around the same level as yesterday afternoon, before she was switched onto self-triggered ventilation. The last blood gas showed that O2 was good but CO2 still too high. Next blood gas at 6pm.

I forgot to mention that her CRP this morning was about 15% worse than yesterday and still high. Her chest xray was no better than yesterday.

In the meantime we have stood down from an active Alarm Phase 2. (Definition: phase 2 I SMS immediate friends and family that Kay's situation has taken a turn for the worse. Phase 1, I press the panic button and phone them. Tuesday evening was Phase 1)

I thought that Marion looked as though she'd been put through the mangler this afternoon. Then I went and had a shower and saw myself in the mirror... Could probably get a role in the remake of the Thriller video. When we're through this I plan to spend some long afternoons snoozing in bed with Kay.

How's it going, fish?

DNR Status Revised Downwards

Kay was already dnr for some situations. The rules have now been formally changed so that she's dnr for more situations. You can read something into that I think.

She has been put back on a controlled breathing program. Her blood gases have stabilised at more acceptable levels. But she's back to needing high ventilation pressures. Thus the risk of blowing a lung, thus the change in dnr status to "do nothing if she blows a lung".

Again, we're terrified, the electricity of fear coursing through my body. But we continue to feel that Kay's still fighting and as long as she's doing it, we can do it too.

On the plus side, her white cell count rose today and her red cell count remained stable. The white cell count is not of any great signficancce, yet. But the fact of an increase is not negative.

To be realistic, she has a very small chance of pulling through. But we're willing her on and on. I put my head against her head and pour all the energy and will power I have into her. Maybe it's like a fish trying to change the direction of an oil tanker, but I'm doing my best / we're doing our best and maybe, just maybe, it will make a difference. Hopefully it will end up being a fractal effect, a small change having large (positive) consequences.

The more fishes there are, the more chance of changing the direction of the oil tanker.

Situation suddenly deteriorated

Blood gases have suddenly worsened. Very critical situation. Ventilation mode changed back to machine only but no room for manouevre. Co2 too high, o2 too low. So far they have not been successful in managing both at the same time. Atmosphere very serious amongst staff. Next hours will be critical.

Start willing/preying again. Kay needs it.

Not Better, Not Worse, Just Different

Nothing much to report. Instead, a couple of pictures...

Wednesday Morning, Natasha sees Kay



Thursday Evening, Mama and Kay

Fresh Breath

Kay has been fighting the ventilator too much. She's a control freak you know? So they have tried an experiment, turning the ventilator into a mode where it waits for the patient to take a breath themselves. The machine detects the trigger and then does the breathing for the patient. So, if you like, the patient sets the pace and the machine does the work, the control freak's setting.

The advantage of this mode is that the pressures that Kay requires are so far quite a bit lower than before. Her saturation was initially lower, 88%, so this remains an experiment. But it's possible to return to the previous mode without problems. But if she takes to it it means that there's a little bit more room for manoeuvre with her breathing. The adoption of this mode does not imply any improvement in her condition, you can be sure that I asked.

Interesting News Not of Immediate Importance

Again, I'm bowled over by how things work in these circumstances. We just heard that not only has the donor agreement to give more bone marrow for a boost, but that this will happen on MONDAY. In principle Kay will get the boost on Wednesday, if I'm correct about the timing. It will take weeks for the boost to have an effect, but still. As a result her CMV medication is being changed to something less toxic.

The O2 supply has just been turned down to 95%, the lower the better. But she's still fighting the ventilation every now and again. The feed rate into her intestines has been increased a bit, which is good. It's now 30ml per hour. If we can reach 50ml/hr then the intravenous feeding can be stopped. She's till peeing like a horse, 1.5 litres negative fluid balance yesterday.

Back to "not negatives", the chest xray from this morning was ... not worse than yesterday and the CRP was not worse than yesterday.

Oh for the day when we are able to count only positives.

Little acts of kindness

Yesterday night, when we came back to our room, there were fresh glasses next to our bed. This morning when I came down from seeing Kay, there was a breakfast tray in our room. These, and many other, little acts of kindness fill my heart and bring me to the point of tears. I really never knew that there are so many wonderful, loving and caring people in the world.

Near miss

I woke at 7am and went immediately up to see Kay, accompanied by Leonie, with hope in my heart for a better start to the day. But when we walked into her room, her O2 saturation was 88% and dropping. With a growing feeling of panic I watched it drop down to 81%, with Kay turning a purplish colour. I was so scared I asked Leonie to go and fetch Marion, it seemed like disaster was imminent. The nurse who had been with Kay all night said that actually she'd been doing pretty well. O2 supply had been turned down to 85%, a big improvement. But 30 mins earlier she had had to clean Kay's nappy and Kay reacted badly, her saturation dropping.

The doctor came in and carefully boosted Kay's already high ventilation pressure, still to a lower figure than yesterday fortunately. Very slowly Kay's saturation started to creep upwards and during the next hour reached 93%. Still, what we need to see is a return to the lower pressures, lower O2 feed and steady saturation of the night.

But one thing that we have noticed is that if Kay is not sedated deeply enough she fights the ventilation and we all had the feeling this morning that she was only lightly in a coma. Certainly I can imagine that Kay would react badly to a nurse pushing on her to force her rectum to empty if she were only lightly sleeping. Kay hates all unwanted intervention and she's getting a hell of a lot. So they're now discussing increasing the sedation. I hope that this will improve her breathing as well.

Another scary start to the day, but after an optimistic night. But you can see just how fragile Kay is. Let's hope that the day only gets better.

The Pilot's Analogy

The best way to describe where we are tonight is by an analogy. I’ve thought that Kay’s condition is something like an aircraft in a steep dive. The pilots are putting all the force that they dare on the controls, hoping to pull the aircraft out of the dive without breaking anything, before it hits the trees. During the last days the pilots have been warning the passengers to brace themselves for collision (head between your knees, kiss your ass goodbye) because their best estimate was that the plane was going in. But by pulling every trick in the book, this evening it seems that the pilots have pulled the aircraft of out the dive.

However, this doesn’t mean the problems are over. The aircraft is now hurtling along at tree top height and has possibly been severely damaged by the huge forces that were applied to its control surfaces. There only needs one oversized tree in the way or a structural failure or even just rising ground for disaster to strike.

But by continuing to apply careful control inputs and looking out for big trees the pilots are hoping to get the nose of the aircraft to rise, very slowly. There's nothing they can do about rising ground, that's just going to be good luck. Unfortunately the aircraft is travelling very, very fast and care has to be taken not to overload the structure while trying to pull the nose up. Equally trees are flashing by on either side very quickly.

So this is not a moment to stop sweating, nor is it a moment for reflection or satisfaction. It’s a moment for looking out for what comes next and trying to return the aircraft to a safe and stable state.

The passengers have had another horrible, nightmarish day, but they are hoping that by willing the pilots on and willing the aircraft to keep flying they can contribute to the recovery. In the meantime they are planning to have a drink and some trolley snacks and try to sleep, without looking out the window at the trees flashing past.

Lovely Song

While nosing around on iTunes I came across "If you see Kay", by The Script.

Excerpt of lyrics:

So if you see kay will you tell her that I love her,
And if you see kay let her know I want her back,
If she listens say I miss her,
Everything about her,
Make sure you say I'm sweet f.a without her,
If you see kay


If you see my friend, doesn't matter where or when, tell me if you see kay
If you see my friend, doesn't matter where or when, tell me if you see kay

Results of Briefing

We've had another briefing session with the doctors this morning. Again it was emphasized that everything is maxed out, no more tricks in the cupboard. But Kay is just holding in there. Her O2 saturation is hovering around 93%, but her CO2 levels are too high. Also they are using very high pressures to ventilate her which increases the risk of exploding a lung, a terminal event.

However, the CRP is lower and they said that, with some imagination, her chest xray looks a fraction better than yesterday. But at least not worse. We're still forced to find solice in counting the absence of negatives. They have decided that from now on they are going to accept 'worse' numbers for her O2 saturation and CO2 levels. They said that patients with an O2 saturation of 87% or CO2 about 10 are not necessarily harmed by these levels.

The goal remains to buy time. I hope that the dropping CRP and imaginary improvements in her chest xray can be converted into a real improvement in her lungs.

Having people around us is helping enormously to get us through the day. Yesterday we were supported by friends and family. Today we have a few friends here. Everything helps.

Knife pressed against thread

I just went up to hear how things have gone over night. The good news is that her CRP infection indicator has dropped dramatically. But bad news is that her O2 saturation has been at the bottom end of acceptable all night and that they have been fighting to keep it stable.

Eventually they have had to turn up the ventilation pressure, which increases the risk of damaging Kay's lungs into the danger zone. Everything is being pushed and pushed to the max and further to buy her time. And no-one knows how long it will be before an improvment in CRP translates to an improvement in breathing.

This is going to be another very long and agonizing day. And I hate waking up to another dose of terror/panic attack.

Too much stress in an evening

This evening they decided to try turning Kay on her back to see if this would improve her breathing. Note that yesterday morning, before things got this bad, turning her was considered to be too risky. However, with much care and preparation she was put on her back. Marion & I stood by, just in case anything went wrong. The process went well, but the results were very scary. Before she was turned she had at O2 saturation of 95%. Once turned she briefly reached 92% but the started dropping.

The doctors had decided to use the opportunity to grab a frontal chest xray. But by the time the mobile xray unit came (10 mins) Kay's saturation was down to 85% and decreasing. The nurse told the xray team to hurry up because "we're into reserves here". Preparations were then made to turn her back onto her tummy. Frankly, I was quaking from head to foot. I was so terrified that I developed a skull splitting headache and started to feel quite unwell. But the process of turning her back was again well executed and fairly quickly her saturation returned to 95%. Her heart rate remained pretty stable through out, but her BP was fluctuating for quite a while and was still not stable when we left. We waited an hour or so for the following blood gas results to come in, checked with the medics and are now preparing for bed.

I had a long chat with the head IC doctor this evening. He took the time to explain Kay's xrays to me, comparing yesterday's with last Saturday's. He showed me that most of the infection is in Kay's left lung, but her right lung is also not free of infection. Typically a child of her age should have a lung volume of 400ml, but Kay current has only 160ml and most of that is her right lung. Thus the ventilator is working her right lung in overdrive, while her left lung is not doing much at all. It's actually possible to see this on her rib cage, which is flattened slightly on the back left and rounded slightly on the back right.

The risk is clearly that her right lung becomes too damaged to work properly because of the high pressures involved in ventilating a single poorly working lung. This evening's xray showed no visible damage, but the medics remain unhappy with her lung function and are doing everything they can to think of ways of relieving it. I was told that people can surivive on a single lung, so I conclude that if Kay's right lung can clear up somewhat, another 40ml of volume will make a lot of difference to her breathing. But this is just my too logical thinking, I guess.

Anyway, Kay has survived another day and we just have to hope that enough time can be bought for her to fight off this infection. Meanwhile I have to try and let this evening's stress drain away.

Oh, BTW, Kay is peeing nicely. I'm sure you wanted to know that.

Tiny tiny wee bit of light

Kay's latest blood gas analysis shows that her 02 is very good and her CO2 has decreased. This indicates a tiny improvement in her breathing and creates a little bit of room w.r.t. ventilation. Also, the doctors have optimized the concentration of anti-fungal medication in her system to achieve maximum effect. They are pretty pleased with this result.

Maybe, maybe there's a little less tension on the thread?

Don't hold your breath.

The five worst things you can hear

When the doctor says:

1) your child probably won't live through the night

2) think about what arrangements you need to make

3) have you said goodbye / given her a cuddle?

4) your child is DNR = do not resuscitate

5) (something I've not yet heard and hope never to hear)

------

Kay is still stable, sat 98% but high CO2. No aspergillus in her eyes. They're probably going to see if they can stop dialysis because her kidneys are working better. Her system is accepting food. Now, if only her lungs can beat the bug... Keep your will power flowing.

Still there... just

Our little fighter is still hanging in there. Lungs still very bad but not worse than yesterday morning. CRP infection indicator down a little to 366, for what it's worth. Staff are doing everything they can to optimize her treatment. Other systems working better, she's peeing a little more, her BP requires very little support, feeding is going a little better. But yeh, it's all worth nothing without a working set of lungs.

Lauren arrived late last night and has been with Kay. Nattie will arrive shortly, but probably won't want to see Kay if/until the very last.

We made the night but this is equally going to be a long day. Marion & I got some chemically induced sleep, so we're not worse than when we went to bed.

Guess that should be the theme of this entry, "Not worse". But then worse isn't possible without a complete disaster.

Stable for now

But on a very very thin thread. We've had wonderful support from staff, friends and family. Now we're going to try to sleep. And will our tough cookie, Kay, to beat the bug.

Different ventilator

They have changed her ventilator. This resulted in a small improvement, but slowly that's leaking away too. She's still there and fighting.

End probably in sight

We have been told that Kay might not make it through the night. If she does the chances are smaller that she'll make it through the day. We have rung the emergency alarm bell. Marion is lying in bed with Kay.

Situation Critical(er)

Just spoke to the doctor. Kay's breathing has deteriorated and now she's up against the limits of the support she can be given. If she continues to get worse, we'll be into the end game. This will be a long night.

Please, please, let Kay get through this...

Extremely Fragile

(I'd written the text below...)

Not much to tell. The CRP has decreased slightly, so hopefully we're about to turn the corner with the infection (again). Worryingly her white cell count is down to 0.2, but this fits in with the overall infection picture. Fluid extraction has been slowed to 50ml/hr to avoid overshoot and to give her kidneys the chance to start working again, but I suspect that that's not going to happen until she turns the corner. Otherwise she remains largely stable, but receiving a lot of support.

(Then Marion came in with some news...)

...but Marion just walked in and has scared me with the latest news. Kay was due to get a heart echo today, which would involve turning her on her back. But they have decided that her condition is too fragile to risk turning her over... Jeez, I just had another of those awful panic attacks.


So, things are extremely marginal. I feel sick to my stomach with fear.

No Significant Change

Title says it all. Kay has been stable all day, but still heavily supported. We're taking a short break and eating at Frank's this evening. Spanish style mussels just being served. Yummmmmm...

A bit to add

Maybe my interpretation of the current numbers is a bit too negative. The staff today seem quite content with Kays state, but not to imply complacency either. The CRP is indeed high and higher than yesterday but the rate of increase has dropped at lot, which implies something started yesterday is doing its job. It was always going to take 48 hours before the additional meds had an effect, so one can conclude that things are as they should be right now. At least, if you follow my meaning. As they really should be is that we should be in France on our terrace sitting in the sun with the kids playing in the pool.

Mixed Results

Kay's condition improved slightly yesterday evening. Her bp was up with less support medication, her O2 saturation was up with less oxygen and generally she was more comfortable. But during the night this improvement has reversed. Also the CRP infection indicator in her blood has risen again and is now extremely high. Very worrying.

Update

We had a meeting with the doctors earlier. Long meeting but short story. Kay is showing signs of (continuing) infection. The most likely alternative is one or more fungal infections. Treatment for fungal infections is being broadened. The next most likely alternative is bacterial infection, treatment for which is also being reintroduced. They have also been experimenting with the ventilation this afternoon and have reduced the rate of fluid extraction.

It looks like some or all of this has had an effect already, but the usual caveats apply. Her blood pressure has risen and the support medication is being reduced. Her breathing is a little better. But of course it will take longer before we can be certain of a positive improvement.

My biggest concern really is that Kay has been without an effective immune system for so long now that she's developed an entire potpourri of infections. The medic's thinking seems to be taking them in that direction. There is talk of not one, but potentially a variety of fungal and/or bacterial infections. The ultimate (and potentially only) cure for these things increasingly becomes Kay's own immune system. But of course, the more medication she gets, the more negative load there is on her own system and the harder it becomes for her to assist/take over the fight. Her immune system is showing a little bit of resiliance, her white cell count was 0.8 on Friday, 0.9 yesterday and 1.0 today. Tiny improvements, but more importantly no further drop.

Reintroduction of Antibiotics

I slept badly last night, woke up at 2am and merely dozed thereafter. At 5am I went up to see how Kay was doing. The answer was that she's slowly been getting worse during the night. When I arrived they were struggling with her O2 saturation, which was hovering around 90%, lower than when we went to bed last night. My worries increased further, but the doctor was already ahead of me.

After a while he came in and explained that he'd taken the time to review Kay's progress, or lack of it, over the last few days and that he'd concluded that she'd started going backwards from the moment that the broad spectrum antibiotics had been stopped on Friday afternoon. We'd been saying that most of yesterday that it seemed as if her reversal had started then. He thought that either she still has a bacteriaal infection or that she's picked up a new one. Her temperature seems a little high, although that's damped by the dialysis, her breathing is difficult, her CRP - infection indicator in her blood - had increased yesterday and she's generating a lot of mucus in her lungs which they keep having to suck out. The latter is something new, she wasn't doing it earlier in the week. So he planned to start her immediately on broad spectrum antibiotics again and take culture from all her lines and from the mucus to see if the infection could be identified.

If I understood correctly, the full results of Friday's lung examination are not in yet - it takes a few days to culture the specimens. Also, the full report of the lung specialist is not yet in, I guess waiting on the cultures. The primary conclusion was that she doesn't have PCP and nothing was visible in her lungs which, in combination with the discovery of aspergillus antibodies in her blood, was enough to lead to the conclusion that the problem's a fungal infection. That since this conclusion and the change to her meds Kay's condition has slipped backwards may indicate that there's something else as well as aspergillus.

The positive thing is that there doesn't seem to be anything else wrong (yet). Her BP is stable with a small amount of support, hugely less than she needed at the start of the week. The feeding directly into her small intestine is working well and the intravenous feeding has been stopped, which means that more fluid is being removed from her system by dialysis and the load on her liver is greatly reduced. She is visibly less swollen than a couple of days ago.

The road to recovery was never going to be smooth, so actually I felt quite reassured after my conversation with the doctor. His thinking seemed entirely logical to me and points to a specific cause for Kay's deterioration. This is much better than having no theory or idea why she's going backwards. The antibiotics will take a couple of days to reach their full effect, so I don't suppose that we'll see a dramatic improvement in the course of today.

Worry Returns

Kay's condition was described to us as "marginal" this evening. The team has spent a lot of time this afternoon adjusting the ventilation to see if they could improve her figures. But to no significant effect. She still requires BP medication and 85% oxygen compared to no medication and 65% oxygen yesterday morning. They also think that she's probably not sedated enough and have slightly increased her sedation medication to see if that helps.

We're both exhausted. I think that we're in the process of switching from short term adrenaline fuelled survival to a long term i-don't-know-what fuelled marathon. I really have no idea how we're going to keep on going, certainly not if the days carry on like today, even thought today wasn't very dramatic.

I really hope that tomorrow sees a return on Friday morning's numbers or better. If she gets worse, there's not much room before we're back into the life threatening zone.

Parents Flat Out

This morning we dropping in on Kay at 7am, as has become our habit. We when back to bed with a cup of tea and the virtual newspaper. But then both of us went knock-out for a further two hours. When we woke we hurriedly dressed and went back to Kay. But in the course of the morning my battery went flat and Marion didn't look any better. I went back to the McD house with the intent to get on my bike, but lay on the bed first to assess how tired I felt and whether I should cycle or not. The answer came itself, in about 30secs I went unconscious for around two hours. I think I only woke up because I got hungry. Now eating and heading back to see how Marion is doing. And Kay of course, but I think it's Marion who needs immediate attention. See if she has slept/wants to have a snooze.

Step backwards

Overnight Kays blood pressure dropped and as a result she's back on BP support medication. Also the ventilation has been increased slightly. Fluid reduction continues however and this morning she looks a little less swollen. She remains stable and there's no real concern about the need for additional support. This is not likely to be a linear process.

Another Day Over(ish)

The most signoficant piece of news today is that Kay has tested negative for a "PCP" infection, which was the top of the list of possible nasty infections. Next, she also does not seem to have any aspergillus (thanks for the spelling, Sam. I originally copied it from Marion!) clusters in her kidneys or liver, which is another good thing. This evening the duty doctor came along to explain the status of things with us, but he was less than logical in his explanation. Everytime I asked him a question, he answered a different question. Kinda like talking to a politician.

Anyway, what I gather from him is that Kay's primary problem is inflamation of the lungs. This is usually caused by an infection, but they have not been able to identify the source of the infection. It could well be that the infection has passed, possibly as a result of all the antibiotics or whatever, but that what is left is very serious inflamation. Secondly Kay has aspergillus antibodies in her system which indicate that there's aspergillus somewhere. But they don't know where. It could well be that the aspergillus infection is an secondary opportunistic infection to whatever caused the lung problems in the first place. But then this would just be guess work.

The practical consequence of this is that the treatment for PCP has been reduced from curative to preventative, thus greatly lowering the load on Kay's bone marrow. The treatment for aspergillus continues. General broad spectrum antibiotics will also continue, at least as a preventative measure. Kay is now so full on holes, tubes and invasive objects that the chances of another infection are considerable. Also she's been turned into a morphine and dormicum junkie and as such will have to be detoxed during the next weeks, as and when they start to think about bringing her out of the coma.

We have been told that when (if) she comes out of the coma she will be in shit state. Specifically the muscles she uses to breathe will be significantly atrophied so that great care will have to be taken to rebuild them. Equally all other muscles will be similarly atrophied. The boy who visited us earlier this week is still using a wheelchair a year later.

Having heard that in the best case we should count on being here at least five weeks, I took the opportunity to drive home today to pick up various things, including my bike and cycle gear. Hopefully tomorrow I'll be able to get out and cycle for a bit. Guess it will be a short ride, I doubt I'll make 30km at the moment. When I got home I was so tired from the drive that I was worried if I would be able to make it back to Nijmegen. What I did get back I fell asleep for an hour in Kay's room, with nurse & doctor moving around.

Kay got a new bed today, the old one was calibrated for an adult (special beds that are designed to prevent pressure sores). Turned out that the job of changing her from one bed to another was massive since both beds could not be fitted into the IC isolation room at the same time. I was not present when this happened, so you'll have to read Marion's account. This will present a nice challenge to the internet literate: which translation tool works best? Babelfish? Google Translate?

Anyway, I'm extremely tired for now. Marion's probably proxy-watching "Holland's got talent" for Kay, so I'm avoiding going back into Kay's room. But I guess that I need to show my face for a minute before heading to bed. Just hope that I don't pick up a TV virus while I'm in there.

The Road Ahead

Kay has just been turned on her back for an ultrasound investigation of her organs. The concern is that an asparagillis infection can spread itself throughout the body and form 'lumps' of infection in the organs, eyes and brain. An investigation of her eyes/brain is not possible at the moment, eyes because her eyelids are too swollen to open, her brain because she's not stable enough to move for a CT scan.

The doctor has told us that asparagillis is pretty tough to fight and that the fight will take a while. I said that we had no intention of beating the record set by the boy we saw last Monday, which was five weeks in IC. The doctor's response was that we had no choice, that we could expect Kay to remain in IC for at least five weeks. She literally said that we had to hope that Kay's stay in IC was at least as long, shorter wouldn't be good.

I'm still trying to get my head around this idea. One week here already feels like a lifetime. And then there's everything else that needs attention, Lauren's schooling, work, home, bills, etc, etc. We need to start getting ourselves organized for another long stay.

Good news is that Kay's kidney's are starting to do more work and that generally she's a little bit stronger. But these are all IC relative terms.

Stable Overnight

Not much to tell. She's had a good night, remains stable with a good bp. She's lost around a litre of fluid and the effects can be felt, the skin on her legs is no longer drum tight and her face is slightly less boxer-like. Late yesterday the lab phoned to say that and indicator in Kays blood for asparagillis, a very nasty fungal infection, had shot up. So the suspicion is that this whole thing is caused by asparagiliis. The problem with this theory is that the indicator showed nothing the rest of the week. Have to wait for the results of the lung investigation before conclusions can be drawn. I have a suspicion that the asparagillis maybe a secondary opportunistic infection.

Today's Impressions: Endoscopy

Poo Two

Sorry, that was just too good a title to miss. But yeh, guess what? Kidneys are also starting to do something. Small steps.

KayTube

Kay's valiantly withstood two invasive procedures this afternoon. The first was a deep dive into her lungs to remove samples for various cultures and investigations. She remained stable throughout, even under duress. The second involved putting a scope down her throat, through her stomach and into her small intestine so as to be able to accurately place a feeding tube directly into her intestines. Again she withstood the whole procedure very well. But Daddy being Daddy, I videoed the endoscopy for posterity: KayTube on YouTube?

Well, maybe not. But I am starting to build up a collection of material so that we can show Kay "While you were sleeping...", but then the version without Sandra Bullock. (There's a question for Kay; would you prefer to watch Sandra Bullock or an Endoscopy of your own stomach and small intestine?). Kay was still stable when I came down here to write this entry. But I'd better head back and find out how she's doing.

Marion had a bad night and is now sleeping. I think I'm going to put my feet up in Kay's room and vegitate for a bit.

BTW, I just met one of the oncologists. She told me that they now considered that Kay was hanging from two threads. So much the better.

Scary procedure starting

The investigation of Kays lungs is about to begin and it's not without risk. The waiting starts again...

Poo

Apologies for the delay in this morning's update, we had some technical problems. None of our mobile devices could get a data connection, damn KPN. Because we're surrounded by buildings the connection is sometimes fairly tenuous anyway. And last night our ISP changed our home IP address on us, which caused a problem with our mail flow. All sorted out for now.

This morning has begun with Poo! Oh how happy are we, we are! Not seen Poo for days, even with an enema yesterday. Today the Poo came of it's own accord. Could her body be starting up systems shut down until now? Otherwise, not much change. O2 up to 75%, everything else seems stable. Fluid extraction rate was up to 120ml/hr, but she has had to have blood, so the net reduction is lower. She doesn't look any different to my eye. I've looked at her lung xray from this morning but to my untrained eye it doesn't look much different from yesterday's. Little bit better on the left maybe, little bit worse on the right. But then I'm no expert. We'll see what the day brings. What it's not brought so far is morning drama. A small relief.

Day End

Kay sneakily waited until we went out to eat this evening before squeezing in another improvement. O2 down to 65%, BP meds stopped (!), BP 90, HR 120 down from 160, ventilation pressure down 15%, fluid extraction up to 100ml/hr. Great kid. Nite, nite.

Quiet Afternoon

Not much to report. BP remains good (not that their share price reflects it... HaHa!) pulse, saturation, etc, all ok. Dialysis had to be stopped to replace the filter, a process that took a couple of hours and involved about 5 different people. Just had a meeting with the Docs, conclusion much as I already mentioned. Small improvement, situation remains critical. Tomorrow the lung culture is planned along with an attempt to fit a feeding tube into her small intestine using a scope. Kay will be able to join the circus as a sword swallower after this. Tonight they will attempt to further reduce O2 and various other support drugs.

Marion's promised Kay that we will all go to EuroDisney. I've told her that even in extremis I'm not going to agree to any such promise. Disney Hell is the only thing I can imagine that's worse than IC - talk about a stick on the end of a carrot. Meanwhile I'm working on my plan for a new theme park based on modern interpretation of Dante's Inferno. Will include such experiences as irradiating your child, discovering your child in a coma, inducing allergic reactions in people and finally, balancing the life of your child on the head of a pin. Fun for all the family.

Better Atmosphere

Please read and sign the "Standard Terms and Conditions of Intensive Care" before reading the following. The atmosphere is Kay's room is noticeably more relaxed this morning, more smiles on faces, more time to chat. Her blood pressure is good, high even. This in spite of the fact that both her bp meds and her fluid levels are being reduced. The infection indicator in her blood is down from 300 to 100 or so. Her red cell count is holding around 5.1, a small drop from yesterday's 5.3. What is amazing is that her white cell count is UP to 1.4. Today's lung xray looks a little better. Conclusion: the thread is under slightly less tension.

Better night

First news of the day, the night went well. The blood pressure support meds have been reduced from 3.0 to 0.5, a good thing. O2 is down to 75%. Even with the reduction in bp support they have managed to keep taking 60ml/HR fluid out of her systems. What's on the planning for today we'll find a little later. But it seems as though Kay has won back a little ground.

Reflections of the Day

It's been a long hard day. So far every day has started off with drama and today was no different. She's been turned on her back, a process that takes two doctors and three IC nurses and about 30 mins. She's had to have a catheter replaced with a larger one, she lost 400ml blood and it took two hours. She's been xrayed several times she's had the new NG tube to her small intestine removed and refitted. For the second time they ahev not been able to correctly position it, so it's been removed again. She's had an arterial line refitted because of problems accurately measuring her blood pressure. And later this evening she's been turned back onto her tummy and resettled. A hard day for her.

At the moment she's stable and her O2 level is being reduced with the hope that as her fluid level decreases her lungs will be able to work better. But at the moment they only dare extract 60ml per hour and it seems likely that, taking into account what's being put in, her net fluid level will only decrease very very slowly.

However people who have seen her each day say that she looks better today and the nurse this evening also thinks that her face is less puffy than yesterday. But she is so incredibly swollen that I dare not publish photos of her here. Marion's Mum came to see her today and we gave her a strict warning on the subject before letting her in. In the event she said that she was very glad that we had prepared her first.

Whether it means anything or not, her blood levels are not deteriorating as rapidly as last week. Her red cell count was 5.2 this evening, which is not bad considering the dilution effect of all the fluid in her system and the fact that she lost 400ml of blood earlier. Her white cell count is 1.1, which is also not bad considering she's being pumped full of bone marrow toxic medication.

So, from my amateur point of view, there are potentially some spots of light if she can be kept alive long enough to benefit from them.

I've hung a huge photo of Kay up on the wall of the IC room - the photo at the top right of this blog - to remind us all of what a beautiful and fantastic girl she is. The evening staff have all been blown away by the photo. Hopefully it will inspire them to even greater achievements.

Impression

Situation Meeting

Kay's life is hanging by a thread and every now and again there's a tug on the thread, is the best description of her situation. She's pretty much on maximum everything. The goal is to get her fluid levels down. The dialysis is working now, but only reducing her fluid level by 40ml per hour / 1 litre per day. So there's a long way to go. But as Tesco says, every little helps. She's been on her back most of the afternoon, but she will be turned on to her tummy shortly. This is better for her right now.

She's starting to suffer a bit from pressure sores, so turning her has helped that problem. One plus point is that the blood indicator for infection has decreased from yesterdays high of 450 to 300 or so. This may indicate that the infection, whatever it is, is receding. But note the caveat. Not much else to tell. No point in trying to describe how we feel, we're in undiscovered linguistic territory.

Wait provisionally over

Procedure to fix dialysis complete, Kay stable throughout, even on her back. Tough cookie. Now there's a chance to reduce fluid levels in her body. She has *** 9 LITRES *** extra fluid in here system which is making her breathing more difficult. Lung photo was a tiny bit better than yesterday but the biggest improvement would come if the fluid levels can be reduced.

Terrible terrible wait

Things with Kay are not going well, technical problem with dialysis. We were kicked out of her room for a few minutes about 90mins ago. Now we're sitting here, quaking from tip to toe, waiting, waiting... And dreading every footstep in the corridor.

Worse

Kays's need for oxygen has increased. Yesterday and through the night it was more or less a constant 65%. Early this morning it increased to 90% and then reduced back to 85% where it is now. The lung investigation has been cancelled.

3:30am No Change

I woke during the witching hour when the demons dance around ones bed and in ones head. So I went upstairs and sat with Kay for a while. Everything the same. Now on our way up to start the day. In theory they will try to do a lung exam this morning. Also the xray will again be important.

Some not negative news

The results of Saturday's bone marrow biopsy just came in: no leukaemia visible in Kay's bone marrow. One potentially fatal problem less and an indication that the transplant could be successful.

I've said it before...

I've just had a lovely email from someone that has filled my heart. Until you're in this situation you can't imagine how important such things are. I really hadn't realized just how many truly wonderful people there are in the world (or maybe just in our world?). All of us are bombarded all the time by how shit things are, how badly people behave, how we're destroying the world, that it's very easy to become jaundiced about the human race. But the facts are different and, I guess, not at all newsworthy: our world, at least, is full of caring people. And this is a source of heart filling warmth. Big Hug to All.

Process complete

The new line has been placed. A new feeding tube has also been placed directly through her stomach into her small intestine so that they don't need to feed her intravenously. This represents slightly less load on her liver. However the doctors felt that that this was enough stress for her system so the lung investigation has been postponed until tomorrow morning. She has since been returned to lying on her tummy and she's back to being stable.

Earlier I got the idea in my head that this is actually intensive care for us, that the goal is to keep Kay going long enough for Marion and I to catch up with reality. Not a pleasant thought. But this afternoon we got a very welcome visit from a family whose son has been through the same thing. A bone marrow transplant patient, he developed a lung problem and ended up in the same state as Kay, in the ic on ventilation, on dialysis. He was there for five weeks. He sat here this afternoon and was a source of wonder and inspiration to Marion and I. Living proof that Kay can survive this terrible situation.

Tense afternoon starting

The process of turning her on to her back, installing a new line for dialysis and attempting to get material from her lungs for a culture has started. Because this is a sterile process we have been kicked out of the ic to the waiting room. We are in for some extremely tense hours, this process is not without risk.

Systems Failing

In the morning meeting with the doctors we were told that Kay's systems are slowly failing. In particular her kidneys are shutting down. She will be put on dialysis this afternoon. That her kidneys are shutting down can be a temporary thing, in other words if she should recover, her kidney function would likely be restored.

There's no sign that the infection is improving. The xray of her lungs showed that they are clearer than yesterday but the conclusion is that this is because of the aggresive ventilation that she's getting. She is still getting maximum support.

However, it has become easier to ventilate her, sufficiently so that they now think there's a possibility to do a "lung wash" (don't know the english technical term), in other words a culture of her lungs. The hope is that this will allow a diagnosis to be made and the medication to be targetted. The broad spectrum toxic load on her system could then be reduced, improving her chances.

But her chances are truly very small.

Stable through the night

First news of today is that there's no change. The next big thing today will be a chest xray. Hopefully the extent of the infection will also be stable or, if we're lucky, reduced.

Still critical

There's been a slight improvement in Kays condition but not enough to get excited about.

No change

Nothing new to tell. She's stablen but still very critical.

Puzzle

There's still no clear evidence about what type of infection Kay has. Bacterial cultures of her blood have revealed nothing. But infection indicators in her blood are on the increase. Today's xray also shows that the infection in her lungs is worse than yesterday. So they medics have decided to get the last broad spectrum weapons out of the cupboard. Kay will be started on a broad spectrum anti fungal drug along with the broadest spectrum anti biotic. Then that's it, more or less the maximum they can do without knowing exactly what the infection is and it's too dangerous to try to take material from lungs for a culture.

Equally the support that she's getting is more or less the maximum that can be given. Her life is hanging by a very thin thread.

Please, please can she get a break here? Please?

Liquid Fear

An xray of Kays lungs shows that they are packed full of infection. The doctor expects that it will take one - two weeks to get the infection under control. The challenge is then to keep Kay stable on the ventilator for long enough to get the infection under control. This will be extremely touch-and-go, whether her body can keep it up for that long, whether any other complications develop and whether her residual immune system has enough strength to fight the infection.

Today's doctor will not offer any opinion about Kay's prospects. She thinks that yesterday's doctor was far too expansive when she said that she expected Kay to pull through. Her situation is obviously extremely critical and reading the nom verbal communication only increases my worries. Our oncologist has just turned up for today's status meeting. Will speak with her later.

A bit worse

First report of the day: Kay's state is somewhat worse, the nurse described it as "not better than average", which in Dutch means not very good at all. She requires more support than yesterday, specifically for her bp. But on the other side her temp is down to something like normal and as I write this she is partially breathing (inhaling) without support from the ventilator. But the doctor said earlier to Marion that Kay's lung are very very sick.

We will have a "state of play" meeting with the doctors a bit later when we'll get to know more. But the day has not started on a positive note and I'm feeling scared s**tless again.

How to sleep during a life and death crisis

I've just woken up after a reasonable night's sleep. The fact that I have been able to sleep is largely due to you, dear reader, our friends and our family. We have been allowed to sleep in Kay's room in the oncology department, which is normally not allowed. But because the ward is quiet and the demand for rooms low in the weekend they have not yet had to release Kay's room. This will probably have to happen tomorrow. But for me that huge advantage of sleeping here is the feeling of safety, the feeling of being surrounded by the staff of the hospital, people who care about us rather more deeply than is good for their professional detachment. They know who they are, so I won't mention them by name here.

And then, as I tried to sleep I started to think about all the people who care about us. I started to list them in my head, I literally lay there and recited their names one by one. And as I did this I relaxed more and more, I had the feeling of floating on a sea of light and warmth and the hands of all our friends and family. I felt comfortable and reassured and even more safe and I eventually drifted off into sleep...

Marion's just gone upstairs in her pyjamas to see how Kay has gone through the night. We'll have a Sunday morning cup of tea in bed after that and then begin today's vigil. I'll try to keep the blog up to date as best I can, but there's no phones or mobile comms allowed in the IC, so I have to step outside the department to update the blog or make/receive phone calls.

Perspective

I've made a mistake with my blog posts today. I described Kay's condition as "critical". In fact I just discovered that she has spent most of the day classified as being in "acute danger". Her condition has only just been reduced to "critical". Acute danger means that we had to be with her every minute, for obvious reasons I think. Critical means that we're allowed an hour or two off.

In the course of the years of Kay's fight with leukemia and its consequences I've had conversations with doctors and seen expressions in their faces that I have interpreted as "dire". But today I had a a couple of conversations that take the biscuit c.q. win the cigar in terms of dire:

1) When I arrived this morning I immediately saw that Kay's numbers were worse. I asked to talk to the duty doctor and he told me that they were of the opinion that she would need to be intubated pretty much immediately. He also told me in a round about way that this was going to be a very risky procedure that she might not survive. I asked if I should get Marion and he said very firmly, Yes. This is a conversation that I don't want to ever repeat.

2) A little later the head of the IC arrived. He took me on one side and told me in no uncertain terms that a) intubating Kay was likely to kill her and b) that once on ventilation it was pretty unlikely that she would come off it. He literally said that "In the ic unit we go for very small chances and we'll do our best in this case". His face was worse, a mask of professional detachment that said everything I needed (or rather, didn't need) to know.

3) The Prof of Oncology turned up to support us, the gentle man. We discussed the situation with him, but frankly, we're way beyond oncology now. But I asked him what was going on, what would happen. He replied that they would have to see how Kay responded but that at some point they would have to assess whether it was reasonable to continue treatment, whether her system could take any more. Again, the solid poker face that said everything. Last chance saloon with the odds stacked against us.

So far Kay has beaten the odds. But she's still in critical condition and we have a very long way to go before we're even back to where we were at the beginning of this week. The consequences for her body of all the aggressive medicine is unknown but far reaching. For instance, she's on morphine. She's pumped so full of fluid that her face looks like she's been 57 rounds with Mike Tyson. It will be a long time before the consequences of these things have been worked out. Then there's the effect on her bone marrow. That's easy. She's getting every antibiotic and antifungal medicine on the books. So at the end of this she'll have no bone marrow left.

Thus, even though she's been downgraded from acute to critical, don't get your hopes up.

Doctor pronounces that Kay will make it through

Marion tells me that the doctor just said that she thinks Kay will make it. It seems that Kay has become strong enough to fight the ventilator, so as a result they are going to put her into a deeper coma. This is a good thing, so I'm told.

Condition critical but stable

Kay's condition is stable and the ic doctors are satisfied so far. They have been able to reduce the ventilation a bit and her saturation has remained good. Her temp is bouncing between 38.9 and 38.4, at the moment it's on its way up again. No sign yet that the medication is working but her condition is not getting worse. The big question is how long she can be kept in this state before her body starts failing and whether the medication is effective before then. In the best case she will be in ic for the next week at least. But the situation remains critical and we can only live from minute to minute. My brother is here with us, which is a huge help, we've been talking shop all afternoon. Nice to have such an interesting business as Verum at a time like this. Sorry for the lack of formatting but my iPad doesn't like the google blog editor very much.

I wish... ...to hold my Kay in my arms and give her the biggest Daddy's cuddle in the world.

Prepare for the worst

Kay is now in an induced coma, on a ventilator. We have essentially been told that her chances of recovering are small. I think that we'll be lucky if she sees the day out. Lot of grim faces amongst the staff, which is never a good sign in an ic.

Photos...

Don't know what I'd do without my iPhone/iPad/Laptop during all this.

Intensive Care

Short note: Kay has developed a very serious Lung infection. She was admitted to high care this afternoon and upgraded to intensive care this evening. She's having such difficulty breathing that she getting machine assistance, not quite the fully ventilated kind. The big proble is that it's not possible for the doctors to k ow what lung infection she has. Thus they have to guess and both of the top candidates require treatment with medication that is bone marrow toxic. So they have chosen to throw caution to the wind and blast her system with these drugs. This means that we'll be back to square one and she will need to boost. Theprocess of contacting the poor donor has be started today. Marion and I have passed through hell and are living what is on the other side.

T+132: Déjà Vu Again

We're back in hospital. Kay was admitted earlier today because she has been extremely sick the last 24 hours, four times during the night and roughly every 30 mins during the morning. In the afternoon it slowed down and so far this evening she's not been sick. However she's developed other symptoms, a low oxygen saturation, a fever and a general feeling of being unwell. Also, because of the sickness her mineral levels are low. Since she's been admitted she's been put on intravenous antibiotics and minerals and I have to say that she's improved somewhat. However the big worry is that her blood counts have dropped again. Take a look at the graphic below:

The green line is Kay's white cell count, the blue line her red cell count. The transaction shown at point A shows the typical improvement in Kay's red cell count after 1.5 units of red blood. The green 'mountain range' in the middle of the graph shows how her white cell count rose and then dropped in the middle of June. The point B shows what happened to her red cell count just before the crash in her overall counts: a transfusion caused a much smaller increase in her red cell counts. This indicated that her bone marrow had already crashed w.r.t. red cell production. The drop in the white cell count followed shortly after.

Look at the area C, you can see a similar thing. Kay's white cell count has climbed and then started dropping. What is really bothering me this evening is area D. Kay had 1.5 units of red blood on Monday and it's had a much lower effect on her red cell count. This implies to me that we can expect another crash in her white cell count in the coming days. If that happens, we'll be back where we were 10 weeks ago.

The specialist is thinking the same thing, I suspect. The CMV virus load in Kay's system has been very slowly increasing during the last weeks and is now at 3x10e4. Lower than 10 weeks ago (then 10e5), but higher than 3 weeks ago. She suspects that the drop in Kay's counts maybe caused by the CMV virus. She has already switched Kay from the CMV/BK virus antiviral - cidofovir - that she's been on for the last 5 weeks or so back to the previous CMV only antiviral, Foscanet. Again, this worries me because we know that Foscanet suppressed bone marrow activity. So if this continues we can expect Kay's bone marrow to crash again and another long battle with the CMV virus to ensue. I expect that this will result in Kay needing the postponed bone marrow boost (and another long stay in hospital). Certainly Foscanet can only be given intravenously and the dosage is 3x per day.

Ok, I hear you say, stop crossing bridges before you get to them. And you would be quite right to say that to me. And it's exactly what I should do. But this is the problem that I have long feared: that Kay's bone marrow cannot recover due the CMV virus load but that can't recover due to the treatment for this problem either. Also it's not clear to me, or anyone else I suspect, that the BK virus has gone and thus stopping the cidofovir may result in its return.

On the plus side, Kay is getting VIP treatment from the staff here. We have been given a super room and a dedicated nurse for this evening. Everyone is focussed on making her comfortable and trying to cheer her up. This is a good thing because Kay is absolutely mentally and physically exhausted. She's unable to sleep at night due to lots of nameless fears that circulate in her head. She's going to need lots of support in the coming days I suspect.

All in all this has all the attributes of a very worrying situation. It looks to me very much like what happened in June. Let's hope that there's a simpler and more innocent explaination.

In the meantime Marion & I have to start living split lives again, running backwards and forwards to Nijmegen. Oh boy.

T+131: Tiring Days and the Zombie CEO

I'm so tired, I've really had to drag myself to the computer this evening to update the blog. Things here are medically good, clinically very difficult. Kay's blood counts remain wobbly but generally good. I'll be interested to see what they are tomorrow. If I get the chance (and have the energy) I'll post them here. There's not really much to say about her medical progress, we're just waiting and hoping that her blood counts continue to rise, that T-cells appear soon and that the viral loads start to drop. But it could be weeks before we know any more on this subject.

Otherwise Kay is not doing so well. She has been very sick for the last week. On Saturday I think she was sick nine times in the day. This is a different sort of sickness than she had all those weeks ago. Then the sickness was confined to evenings only and once it was gone it was gone until the next evening. Now Kay is sick any time of the day or night, without warning. The poor thing. She is really run down by the whole experience and begs not to have to throw up again, says that she can't take any more. She looks like a ghost half  the time, pale and worryingly ephemeral. Getting feed and medication into her is a constant challenge.

Marion is completely brilliant with the situation. She starts at 7.30am with medication and more or less struggles with the subject the whole damned day, if she's lucky finishing around 11pm. She's become a dab hand at cleaning up vomit whilst issuing a variety of soothing assurances to Kay. But the problem is that the sickness has no respect for humanitarian hours, it carries on, unpredictably, right through the night. After a string of broken nights, with both Marion & I having progressed to being day-time zombies, we decided to sleep apart. Taking turns, one of us will sleep with Kay in our bed, the other in the guest room, the idea being that one of us will get a good night's sleep. Since I need to be up early tomorrow to take Kay to Nijmegen, I wanted to sleep well tonight, so I volunteered to take the first night (Tuesday). The disadvanatge of this plan was that today was due to be a very busy day in the office, with an important customer seminar scheduled for the afternoon. A bad night would result in a Zombie CEO at the office.

Kay & I settled down around 11pm or so. Trouble started at 12.30am, when Kay was suddenly sick. I was drifting off to sleep when I heard a thump as Kay dived out of bed onto the floor and stuck her head in a bucket, poor poor thing. She's becoming quite skilled and not so much cleaning up was necessary. We settled back down again. At 2am she needed (help) to go to the toilet. At 3.30am she managed the toilet on her own. But at 5am I was yet again woken by the sound of her diving onto the floor and being sick. This time she missed the bucket. Worse yet, the convulsions were so strong that she also had an involuntary attack of diarrhea and end up coated up to the armpits under her pajamas in you-know-what.  

The clean-up operation took rather longer this time and included showering Kay down and warming her up, scrubbing the carpet and loading the various soiled items of clothing into the washing machine, all whilst trying not to wake Marion. Unfortunately, Marion cottoned on to the fact that there was something happening, but by that time I'd sorted everything out. There was not much of the night left, especially as I had to be at the barbers at 8am and the office at 9am. I'm sitting here now feeling like there's 220 volts of tiredness running through my body from head to foot and I shall be off to an early bed shortly.

We have no idea why Kay is being sick. Neither do the medics. A friend gave me the name of a specialist dietician who, out of desperation, I called today. She suggested that Kay's digestive system needs priming with 'good' bacteria, since the radiotherapy will have killed all the naturally occuring bacteria in her system. This sounds like a brilliant idea and I plan to raise it with the specialist tomorrow. But if that's not the solution, I'd like to know what is, this is a very very hard situation for us all.

I'd like to put in a special word for all the guys at Verum, who put in a lot of work to make our seminar the decent event that it turned out to be. I hope that their Zombie CEO didn't let the side down. Thanks guys, you're great!

T+124: A lot and a little to say

I'll begin again with apologies for not updating the blog for the last days. There's a fair mix of things going on that mean that we're/I'm either flat out busy or flat out tired and there's not much left in between.

Medically Kay is doing well. Her white cell count droped slightly to 2.1 on Monday, but this is of no concern. In fact personally I'd be worried if it carried on sky rocketing because that could be seen as abnormal. Her red cell count was 4.8 but the rate of decrease was such that the doctors wanted to wait until tomorrow before giving Kay blood. The result is that at the moment she's extremely pale and tired, typical symptoms of anaemia. In the light of the dramatic improvement in her blood counts, the oncologists decided last Friday not to go ahead with the bone marrow boost. This is also a good thing, not least because the less treatment one needs, the better. The CMV virus load has been slowly increasing during the last weeks, it's risen from 10e3 to 10e4 in about four weeks. The medics are not too bothered by this at the moment, especially because of her blood counts.

Kay remained very sick during the weekend. Last week she had to have her feeding tube refitted 9 times, 8 times because of sickness and once because the tube split. However practice makes perfect and although she has continued to be sick she has refined her technique to such an extent that she's now able to keep the feeding tube down. (If you ever need advice on the subject, Kay can tell you exactly how it is done). As a result of this, we've had quite a few broken nights recently, which is hard in the circumstances.

The sickness decreased yesterday and (so far) today she's not been sick (spoken too soon, see below). I still think that it's a tummy virus as I have been feeling very bad for the last few days with something similar. I've had a sore throat for days and, in common with Kay, my stomach has been doing aerobatics in the afternoons and evenings for the last couple of days. Kay's getting better but I've just gone to bed because I feel pretty rough.

Even though she's at home, Kay is still pretty fed up with the whole situation. Being at home leads her to want to do things and the things that she wants to do most are of course the things that she is least able to do. We have tried to be relativistic with her along the lines of, "You're at home, you can sleep in your own bed, you have your family around you, friends can visit, etc". But all this is not enough. Kay is very mature in many things but in this respect she's just a frustrated 10 year old.

Tomorrow we have a very busy day, much like last Friday. Treatment will start at home at 8am with medication to protect her kidneys. Then I will drive her to Nijmegen. The BK virus treatment will start at 10am. In the afternoon she will be given the CMV virus treatment and then a special inhalation treatment to protect her lungs from fungal infections. Probably she will also require blood and platelets. I suspect that it will be 8 to 9pm before we're home again. Last Friday left me exhausted, so I suspect that tomorrow is going to be another marathon.

There's a lot more to tell about the last days but I think that I'd better get some rest before tomorrow.

Jeez, the carpet next to my bed stinks of vomit and everytime I get in or out of bed it releases a foul odor. It's been cleaned several times but the smell persists. Kay was just sick and I rushed to her bedroom to help her. Now the smell of vomit seems to be lodged in my nose, thanks to Kay and the carpet, and my stomach is doing competition aerobatics. Window open and time to try to sleep, I think. Distract myself from heavy thoughts by trying to work out how to replace the carpet in our bedroom without myself having to move all the furniture and the (new) bed out...

T+119: Wow! Brilliant News!

Kay's white cell count has risen to 2.7! Amazing!

I have 1000 questions for the doctors and some stories to write about here. But I'm too stunned to put words together in a sensible order at the moment.

T+117: No Boost Necessary?

"Curiouser and curiouser", said Alice. Kay's white cell count has gone from 0.5 on Saturday to 1.0 on Monday to 1.6 yesterday, ie sky rocketing up. I'm so concerned not to burst this bubble of good fortune that I've not dared to ask anyone why the sudden rise. But apparently if this trend continues the stem cell boost stands a good chance of being cancelled. There are of course rules on the subject of when a transplant can take place, bearing in mind that there's risks to both the donor and the recipient, and if Kay's counts are rising on their own accord then it may be that the risks outweigh the benefits. On Monday the specialists will review the situation and decide whether the boost can/should go ahead.

Yesterday the team in Nijmegen worked flat out to get everything sorted so that Kay could go home and be treated as an out patient from now on. They did a brilliant job and, yet again, our heartfelt thanks goes out to them. Marion cleared out Kay's room. Kay had insisted that Marion take my Jag because she feels that she's less likely to get sick than in Marion's Volvo. Problem is, my Jag is a much smaller car and Marion ended up with the thing literally loaded to the roof with stuff, including bags of medicine. When they got home we had to unpack the car around Kay before we could get her out.

Kay continued to be very sick yesterday, twice throwing up her feeding tube. She was very scared about travelling home because she felt so sick and, while Marion was out loading the car, she phoned me up crying her heart out because she felt so bad and was so worried about travelling and messing up the car. In the event the car was so tightly packed that if she had been sick on the way, it wouldn't have made a mess of the car, just the stuff in it.

She continued to be sick most of the evening, oscillating between sleep and nausea. Apparently her kidney function is down - the current antiviral medication is bad for the kidneys - and it is essential that she gets enough fluid. Also her medication is vital. So Marion ended up sleeping downstairs on the sofa with Kay - who felt better on the sofa than in bed - and working through the night to get all the medication done and to ensure that Kay was sufficiently hydrated. Marion told me this morning that the night had passed well and that Kay hadn't complained of tummy ache for most of it. But I spoke to her a minute ago and Kay had just been sick again. Weird.

But in any case, being at home is obviously a mixed blessing. Brilliant for Kay, a hell of a lot of work for Marion. But still, I think that Marion is right that being at home will probably result an overall improvement in the situation, certainly if Kay's health starts to improve. For the moment we must first sort out why she's being so sick (again).

T+116: A day of being sick

Poor Kay. Yesterday afternoon, for some reason, she was suddenly sick and threw up her feeding tube. She stayed that way until almost midnight, threw up her feeding tube a second time and generally was completely miserable. No temperature, fortunately. But still, we struggled to ger her medication done and she had way too little feed during the day. We really have no idea of the cause, maybe she's still suffering from a tummy bug or maybe it was the meds or the few spoonfuls of soup that she had for lunch. Hopefully it's a passing thing.

Today Marion & Kay were up early and out the door to Nijmegen. We're hoping that she'll be allowed to come home this evening and we can then shift to day care for the next 10 days before the boost. But there's no knowing until she's at home, I guess. Marion & I hope to eat out this evening, so fingers double-crossed.

T+115: At Home, White Cell Count Up

I'll keep this short because I've got work to do. After all the hassle on Saturday, yesterday Kay was allowed home. Her condition had improved quite a bit overnight, possibly due to the antibiotics that were started on Saturday afternoon. She still had a bit of a fever, but it could be controlled by paracetamol. And in the event she didn't show any signs of it at home - but then of course it was probably being controlled by the paracetamol.

Kay did the Jeckyll & Hyde thing again when she got home, the transformation from a sick child who sleeps all day into one who wants to ride their mountain bike (in the rain), makes soap from a kit, walks up and down stairs and dances to Justin something-or-other. Unsurprisingly she was complaining bitterly this morning about having muscle pain.

Marion took her to the Catherina for today's dose of antibiotics this morning. They did a routine test of her blood and told Marion that Kay's white cell count is 1.0 !!!!! This is a big deal, we've not seen such a high figure for many weeks and it means that her system is starting to recover even before she gets the stem cell boost.

Tomorrow she has to be back in Nijmegen for the antiviral treatment, but I think that there's a good chance that the move to be based at home will go ahead and that we'll be able to check out of the McD house for a while. We'll see, we continue to live from hour to hour.

For some strange reason I couldn't sleep again last night and Marion was fading in and out of sleep. Typically, we also ended up killing five mosquitos in our bedroom during the night. Yeh, you know how that goes: you just start to fall asleep after hours of lying awake and zzzzziiiippppp, a mosquito flies past your ear. We killed them by burning their ears off with rude words.

T+113: What a sh*tty day and it's not over yet

I was phoned by Kay at 6:30am this morning - I was sleeping at the McD house - because she had been sick at 5:30 and was feeling sick again. I was fairly awake anyway so I grabbed a shower and ran over to find Kay in a right state, feeling very sick. Shortly after she threw up again, poor thing. But fortunately no fever, just sickness. Still, Kay felt so bad that she started to doubt whether she should go home today. I told her that we'd see how things worked out. After a while she fell asleep and that's how she spent most of the morning.

I spent the morning somewhere between very tired - I got to bed after midnight last night - and very bored, just looking forward to going home later. Around lunchtime the duty oncologist stuck his head around the door to see how things were going. I asked whether Kay needed platelets before she went home and neither he nor the nurse had bothered to check the blood tests from the early morning. So he went away and came back 10 mins later with the news that, indeed, it would be best if Kay had a platelet top up. But then he added that a culture of her blood had revealed a bacterial infection, nothing serious mind you, but that she would need to be put on antibiotics which have to be given intravenously. However he promised to try and arrange for tomorrow's and Monday's treatments to be done in Eindhoven. So in principle we could still go home later but the price would be two mornings hanging out at the Catherina.

I went and got a cup of tea and came back to find Kay sobbing her heart out. The news that she'd got yet another bacteria had hit her hard and she was very depressed by yet another setback. She was very worried that her body is giving up the fight and scared of the consequences of another infection. I arranged for her to talk to the duty ward doctor who is someone that Kay likes and trusts (Esther, it's time to came back from holiday!). She told Kay that the new infection is no big deal and that it's just another thing and that all the doctors are pleased with Kay's general progress. That Kay shouldn't worry herself, etc. After a while Kay cheered up, especially when the conversation moved on to other things.

The antiviral treatment progressed normally during the afternoon, but around 3pm Kay started to feel very bad again, complaining of feeling sick and pressure on her chest. She also broke out again in a rash that has been coming and going the last few days. Again she started to doubt whether she should go home, whether she could cope with the car ride. So I suggested that she get out of bed and sit in a chair for a while, which she did. That seemed to go OK but then the nurse measured her temperature, 39.1C. Bl**dy Hell! Too high for it to be sensible for her to go home. So we officially decided to call off the trip home for today and re-evaluate the situation tomorrow.

And here we are, Kay fast asleep again and me bored stiff, too tired to do very much and completely fed up that I have to spend another damned night here. Can't remember if I mentioned it, but I've cut out alcohol because I think that it doesn't mix well with my tablets and since I've done that I've slept better. But the idea of spending a Saturday night alone here without a decent (or even indecent) glass of wine makes me feel so depressed that I'm starting to wonder if I need to take more antidepressants... Ha!

Actually, as far as I can tell the only effect of the medication that I've been given has been to give me a more or less permanent headache. I certainly don't feel any less tired or less foggy in my head. And I'm not convinced that the tablets help me to sleep either since I've mostly slept terribly since I started taking them.

Anyway, I've bought the film "Shutter Island" from iTunes to watch this evening and we also have some kids film in case I can distract Kay from watching crappy TV. Whoopee, one big party.

T+112: Home Base?

What a mixed week this has been so far. The last days Kay has been running a fever on and off and has been sick a number of times. She has oscillated between cheerful and sadistic, carelessly ripping into anyone who happened to wake her up or otherwise cross her sights. I have to say that yesterday, after a day of her mood, I was happy to head home. What a darling! I read an article yesterday about the CEO of British Airways taking his own food on flights because he feared that the aircrew were spitting in anything he was served onboard and I now understand why Kay is sticking to nasogastric feeding. But I exaggerate, she's not been nasty to the domestic staff, yet.

As I sit here she's started feeling very sick again, but that could be because she's watching "Holland's Got Talent", an oxymoron of a TV program if I ever came across one. She's also developed a rash on her arms which the doctor thinks is an allergic reaction to something, but isn't quite sure what. She's not had anything new today. But yeh, this is a typical day in the life of...

The interesting news is that there's a move afoot to shift Kay over to day care so that she can be based at home. The idea is to compress the current four days of treatment per week into two days, reducing the antiviral treatment from 3x per week to 2x per week (but the same total dose per week) and shifting the immunoglobine treatment to the same day as one of the antiviral treatments. The latter will end up being a fairly long day. But of course the advantage is that she'll get to sleep in her own bed.

The first step in the move should take place tomorrow, the idea being that she will go home mid-afternoon after the body of the antiviral treatment has been completed, this instead of Sunday morning. Then she will have to be back on Tuesday, but the idea is that if alll goes well she'll be able to go home again to return on Friday. The week after the boost is due to take place which will involve a few days in hospital and will allow us to evaluate if the new arrangements are suitable.

I have my concerns about this change, considering that as I write this Kay has just been sick again and that we generally just seem to proceed from one problem to the next. I'm also concerned that all of a sudden, after weeks of it being necessary to treat Kay 3x per week, this can now be brought back to twice. On the one hand this maybe because the acute BK virus symptoms have largely gone and that the CMV virus load is stable. But on the other hand I'm worried that the virus load is stable because of the current level of treatment and so fiddling with something that works just before the bone marrow boost doesn't seem such a good idea to me.

I guess that it will be a long evening. Even after throwing up, Kay is still feeling sick and there's a queue of medication that still needs to be dumped in her stomach. Here there's professional staff to do that, at home it's just us. Hmmmm...

T+110: Home and Away

Kay got to go home for Sunday and Monday, another brief but welcome break from a too long stay in hospital. She rode her new bike briefly but spent a lot of the time at home sleeping.

Unfortunately on Monday she started to feel nauseous and first thing on Tuesday was sick. The symptoms associated with the nausea were different than she has previously experienced -yes, we now able to discern different flavours of nausea - this time it was a constant feeling, not one that built up during the day. I had to take her back to the hospital for 9am, so we decided not to pump her full of medicine before the trip, not least because I didn't want the inside of my car coating in a mixture of exotic medications.

When we got to the hospital Kay was extremely unhappy and, frankly, unwell. She was in a terrible mood and refused to cooperate with just about anything. This, combined with the need to start the BK virus treatment, meant that we ended up running way behind with her medication. In fact that whole day was one big struggle with Kay's nausea and bad temper. At the end of my day there - Marion arrived to take over in the early evening - my nerves were jangling.

Kay however had done me a great favour, she had saved the worst for Marion. She was sick several times during the evening and Marion ended up having a worse time of it than I did. During the course of the night Marion too started feeling nauseous and developed a splitting headache. On the way here this evening I've developed a headache that has hardly been touched by Ibuprofen and I'm now starting to feel my stomach as well. We also heard that one of the other Mum's got something similar. So the provisional conclusion is that maybe there's some kind of bug floating around, though it would be worrying to think that it was working its way round the ward.

Kay & Marion spent most of the day today horizontal and sleeping. In the afternoon they both seem to have brightened up. Kay no longer feels nauseous, she just has some pain left over in her tummy. Marion was active enough to try and do some shopping. But then she was let down by her car, which refused to start. She ended up having to phone Volvo customer care and within 10 minutes the local Volvo garage was with her. The car it seems has developed some fault that involved it being towed away and Marion having to arrange to get a hire car. Whoopee.

But then just think, normally at this time of the year we would be in France and we would have had to do all that in French, whilst suffering the awful weather that they have there in August. And I don't know about Marion but I've forgotten my French since we were forced to abandon lessons last October. So, we have to consider ourselves to be very fortunate, stuck here in sunny Holland in a hospital room at a constant 23C. Whoopee again.

On the medical side everyone seems generally content with Kay's state. The acute BK virus symptoms have abated. Yesterday Kay's white cell count had reached 0.7, higher than in a long time but still damned low. Essentially what we're now waiting for is the boost transplant. Then we hope that the recovery process will accelerate. The other good news is that her medication load has been decreased. Blood pressure and bladder medication has been stopped. We have also agreed that if everything remains the same, Kay will be able to go home every Sunday and Monday for the foreseeable future (ie next Sunday & Monday, maybe. Ha!)

So, all in all, things have been worse. My laptop just told me that I have 14 mins of battery time left, so I'm posting this without re-reading or spell checking it - too lazy to get the power supply out.

T+106: Boost Delayed

The week so far has been routine. Kay benefited hugely from a couple of days at home. On Tuesday, back in her room at the hospital, she was smiling, happy and very funny. In the evening she was chatting to the nurse saying that she was looking forward to going back to school and the new school year. When asked why, she replied, "Next year we get Sex Education... with pictures!". Daddy choked on his mug of tea and had to be resuscitated.

Medically there's not so much to report. The acute BK virus symptoms, namely peeing blood and pain, have died down. So it looks like the BK virus is in remission. Next week the BK virus load will be measured. The CMV virus load remains the same at 10e3 and although this is above the 'safe zone' of 10e2, no-one seems very bothered. Kay's weight is slowly increasing and she's now passed her minimum weight of 28.5kg, this morning she was 28.8kg. So that at least is one battle that we have won. She's also off the antibiotics for the line infection. This makes life a lot simpler since that's intravenous medication. She's also been taken off the anti-rejection medication. Cyclosporine is a fairly nasty drug that also suspressed bone marrow activity, so we're hoping to see an increase in Kay's blood counts, although there's the possibility that this won't happen until she's has the stem cell boost.

The disappointing news is that the boost has been delayed by two weeks until the 26th August because of some issue at the donor's end. To be honest I'm not that disappointed, I'm still awed that the donor is prepared to undergo the transplant procedure again and if they need an extra two weeks to get sorted, that's fine. We love our donor.

Since things are progressing routinely and we have a break in the antiviral treatment on Sunday's and Monday's it's likely that Kay will be able to go home again tomorrow until Tuesday morning. Without the need for intravenous antibiotics this will be a much simpler exercise than last weekend. All of the routine medication is stuff that we can deal with at home without support.  The medics are also looking in to the possibility that the antiviral medication that Kay gets three times per week could be done at the Catherina hospital in Eindhoven. This would mean that Kay could be based at home and have the treatment as a day patient.

Kay is very excited about going home again. She has big plans to ride her mountain bike round the garden. Kay's definitely got the wind in her sails again since last weekend and has started to push herself to do things. In the last days she's twice been with the physiotherapist to the gym upstairs (yes, they have a great (big) gym for the kids here). She's pushed herself a little hard and is now suffering from muscle pain. I keep assuring her that this is a healthy kind of pain, but for Kay, pain is pain.

So, the next big planned event is the bone marrow boost. We just have to hope that everything else remains stable and routine until then. And tomorrow another couple of days at home...

Beste Allemaal (Dear Everyone)

Beste allemaal (Translation at the end)

Dankjewel voor jullie mooie cadeautjes en kaarten. Ik heb het heel fijn thuis gehad twee daagjes even met het gezin thuis zijn. Ik heb een mountain bike gekregen en een set om zelf parfum te maken en een set om zeep te maken. ik heb iets voor in bad en ik heb magnetische oorbellen gekregen en een ring en armband en een abonnement voor de 10 voor taal en om zelf armbanden te maken en ik heb ook een boekenbon gekregen en ook nog een hockeytas . Nog veel meer.

Ik heb heel fijn gehad op mijn verjaardag. En ik heb gefietst op mijn mountain bike dat was heeeel leuk. Ik had een nadeel en dat was dat ze de thuiszorg moest komen drie keer per dag omdat ik nog antibiotica krijg maar dat was bijna niks. Ik heb ook op mijn verjaardag heel veel bezoek gehad mijn opa en oma granny en grandpa en mama’s tante en oom en mijn tante en de broer van Daddy en er was een vriend van mij gekomen en een vriendin en mijn oppas kwam ook even en dat waren ze en natuurlijk wij.

Maar ik baal wel dat is terug naar het ziekenhuis moest om ik had het heel goed naar mijn zin thuis. Het leukste wat ik heb gedaan op mijn verjaardag was fietsen om ik voelde me net gewoon vrij gewoon een normaal kind en dat was erg fijn. En het was ook fijn om even niet aan het ziekenhuis te denken dat was vooral fijn. En ik heb ook een nacht met nattie geslapen en dat was erg gezellig en leuk dat was erg fijn om met je zusje te slapen en het was ook fijn om in mijn eigen bed te slapen was erg fijn.

PS: echt heeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeel erg bedankt voor alle cadootjes en kaarten en telefoontjes die ik heb gehadt

Groetjes kay

------------------------  (Follows a direct translation)

Thank you for all the cards and presents. I have had a very nice time at home for two days, enjoying being with my family. I got a Mountain Bike and a perfume making set and also a soap making set. I got things to put in the bath and magnetic earrings and a ring & armband and a subscription for "10 for Language" (puzzle book magazine - Daddy) and a set for making armbands and a book token and a Hockey Bag. And lots more.

I had a very nice time on my birthday. I cycled on my Mountain Bike and that was reeeeally great. I had one disadvantage and that was that the District Nurse had to come three times per day because I need antibiotics but that was almost nothing. I had lots of visitors on my birthday from my opa and oma (Marion's parents - D), Granny and Grandpa, Mama's Aunt and Uncle, my Aunt and Daddy's brother and there was also a friend (male) and a friend (female) and my childminder was also there for a while, and that was everyone and also us of course.

I am pretty fed up that I had to go back to the hospital because I was very happy at home. The nicest thing I did on my birthday was riding my bike and I briefly felt free, just a normal child and that was very nice. It was particularly nice not to think about the hospital for a while. I also slept for a night with Nattie and that was very cosy, it's very nice to sleep with your sister and it was also nice to sleep in my own bed, very nice indeed.

PS: really very maaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaany  "thank you's" for all the present and cards and phonecalls that I have had.
Groetjes kay