T+32: An evening in the Catherina

I'm writing this entry while sat with Kay in an isolation room in the Catherina Hospital in Eindhoven. Marion took her to Nijmegen this morning for a 'routine' check, if anything about this phase of Kay's treatment can be considered to be routine. In principle everything was OK, except that Kay's blood pressure was a bit high. However the blood test results were not back before they left and a promise was made that the results would be phoned through later.

Late afternoon the call came through that her platelet count was 11, ie extremely low. Marion then made an appointment for me to take Kay to the Catherina tomorrow afternoon for a transfusion. But another call followed, the specialist saying that the combination of low platelet count and high blood pressure was too risky and that he wanted her to get a transfusion this evening. But this meant that the Catherina would have to be able to prepare the procedure and an isolation room at very short notice. So we then had to wait to see if this could be arranged. At 6:15pm we got a call to say that we were expected at the Catherina at 7pm. Great work from all involved.

And here we are. Kay has just watched an episode of House on my iPad (I've dumped all of seasons 2 & 3 from DVD onto my iPad for just such eventualities). She's now fast asleep while the transfusion runs. Hopefully we will be home within the hour. Having written that I thought that I'd better check Kay for a rash indicating an allergic reaction and, guess what, she seems to have a rash over her chest and shoulders. I just woke her a bit to check that she feels OK, which she does, but I rang for the nurse anyway. The nurse took a look and has now gone to find the doctor. Welcome to the live action medical blog...

While I'm waiting for the doctor to appear it's worth relating our (actually largely Marion's) bad evening yesterday. We had a very nice day again yesterday. I played hockey and football with the girls, Kay slept and they watched some TV. They played Monoploy, etc, etc. When it came to evening medicine time, Kay started complaining of nausea. I should mention that giving her her medication is a whole palava. She's sensitive to certain combinations of the meds and to the order that they are given. She's also fussy about the rate that they are given. Failing to meet any of her exacting standards results in nausea or worse. If one is not careful, worse can mean that she throws up all the meds and the process has to be restarted.

Marion has developed a scheme that meets Kay's requirements, but even then it doesn't guarantee a reliable result. The scheme involves giving each of the meds separately over a few hours to reduce the chance of interaction and also to prevent having to redo anything in the event that Kay is sick. (We're pretty sure that a lot of this is in Kay's head, but practically speaking it's not particularly relevant, we just have to get on with the situation as it is). The down side is that the morning and evening meds take hours to complete and occupy a lot of Marion's attention.

Anyway, yesterday evening Marion was heading for bed at 11.30pm, before which she had to give Kay her last medicine, an antibiotic. How it came about I don't know, but there was suddenly a lot of yelling and Kay was sick all over her bed, throwing out the NG tube as well. Since she's dependent on the NG tube for feeding, it was essential that it be refitted. So we had to call the district nurse out, who arrived at 12:15. By the time that Marion got to bed it was around 1am. The night was then broken up by several alarms from the feed pump. Normally I'm the first to hear and react to these alarms. But the previous night I'd not managed to fall asleep before 4am, waking again at 7am. So last night I took a sleeping tablet, nothing more than an (USA) over-the-counter thing, but I was less responsive to external stimulii. Anyway, the result is that Marion is pretty damned tired today. So as far as that goes, we're still taking it in turns which means that I'm due for a poor night again tonight. Whoopee.

Now, back to the live action. The doctor has just been in and checked Kay. It seems that the rash is confined just to her chest and that she has no other symptoms unless being in deep sleep is a symptom. Kay was completely unresponsive while we poked and prodded her looking for signs of the reaction. In the end I was a bit concerned so I (verbally) prodded her until I got a reaction and made sure that she felt OK too. In the meantime the transfusion has finished and is being flushed. Hopefully we'll be cleared to go home in the next few minutes and I'll have the pleasure of having to fully wake Kay. I'd rather pull a tiger's tail.

T+30: Roller Coaster Experience

Having Kay at home is such an up and down experience. She fell over yesterday while playing outside and took the skin off her elbow and bashed her knee. This could be a big deal. We disinfected the wound and put a gauze dressing over it, but it bled for a pretty long time, soaking the dressing. She screamed blue murder when we disinfected the wound, my ears are still ringing. We kept her knee under close watch, I expected it to swell up and develop a huge bruise. But in the end this didn't happen. But really, something as simple as a garden fall turns into a major exercise and worry.

Then today can best be summarized by this video. Watch it and you'll see what I mean.

T+28: Just because you go home doesn't mean the story ends

I start writing this by first letting out a huge sigh: this is not what I'd expected. Marion & Kay had been told to be back in Nijmegen for 9am, meaning a 6.30am start. I have only been exposed to the short hand version of the following story, for the full blown version I guess you'll have to wait for Marion to write her email and then stick it through Babelfish. But it goes something like this:

They arrived on time and were shown into Room 11, ie just where we have spent the last 5.5 weeks. Leonie, one of excellent nurses how has looked after us, hadn't received any instructions beyond performing a normal blood test. She knew nothing about a possible virus and/or fungus infection and the associated tests and lung scan that had to be performed. After waiting for a while, ie most of the morning, it dawned on Marion that something had gone wrong with the arrangements, where upon she started to kick up a fuss. The duty doctor was called, who didn't know anything. She consulted the oncologist who had given the orders for the tests and it turned out that the instructions for the tests had not been transferred from the night staff (it was that late by the time she had a chance to write them out) to the day staff.

Thus it was afternoon before the virus and fungus blood tests were started, meaning that it would be evenin before the results came in. Thus it would not be possible to do a lung scan today because the need to do the scan hung off the results of the fungus blood test, etc, etc. However, Kay had to stay until (at least) the fungus test was in.

The fungus test came in in the late afternoon and was negative, phew! Permission was then given for Kay to go home. We're still waiting for the results of the virus test, but that is seen as a lesser worry. But in theory, if this is positive we could still be summoned to return to Nijmegen tomorrow.

So, Kay and Marion are back home. I've taken my overnight bag out of my car but have not yet unpacked it because I'm beginning to get the feeling that unpacking is an waste of time. We'll see.

Now, on to more cheerful stuff, some photos from Wednesday and yesterday:

Home at last! Kicking a ball around garden. Is this the same 'patient' that struggled even to get out of bed for a shower in the afternoon?

Scoring a goal against Mama. Kay remains supremely competitive.

Mama just doesn't stand a chance.

Hockey Team drops by to say "Hello".

Spreading the news that she's home.

Yesterday: one day at home and already bored with the quarantine rules.

T+27: Mixed Messages

Today was a super day, in principle. Kay has been outside enjoying the weather, kicking a ball around, etc, etc. However Marion got a call from the oncologist this afternoon that they are concerned that finer testing of yesterday's blood samples shows problems in Kay's blood. The tests indicate that the common CMV virus is growing in her blood and possibly she may have a fungus infection in her lipungs. So tomorrow she will have additional tests and a scan of her lungs. Both Marion and I think that this will result in Kay being admitted again. We're both pretty worried by this news. After such a lovely day going back into hospital feels like being called to the 7th level of hell. I'd planned to write a more positive message today and put some of yesterdays photos on the blog, but frankly I don't feel like it at the moment.

T+26: An Extremely Strange Day

As Douglas Adams once wrote, postponing revealing the end of a story causes stress and is unhealthy. Therefore I shall jump straight to the end of today's events and say that we're now at home and Kay is tucked up in her own bed. But how this came about is somewhat less than simple.

Once I heard from Marion that we were sat to go home, I started packing everything up in the McD room and loading up the car. It seemed strange to me that Kay had so quickly got over the nausea after having suffered from it for more than a week. But that is indeed what seemed to have happened. I got to Kay's room around lunchtime. She was still in bed and still very flat, complaining of feeling very tired but no nausea. Also her blood pressure was on the high side. At that point we were waiting for a transfusion of platelets to start. Once the transfusion was running I started to ferry Kay's stuff back to the car and Marion chased up Kay's medicines and various other things.

You wouldn't believe how much stuff we have accumulated in 6 weeks. It took three trips before everything was loaded. After I returned from the 1st trip, Kay said that she need a wee. As she sat on the pot she started complaining of pain in her tummy. But she said that it was a different sort of pain, a stabbing feeling in the area of her stomach. The pain rapidly grew extreemly bad, Kay was lying on the bed screaming in agony. We rang for the nurse and I must admit that I felt very panicky. Just as the nurse arrived Kay suddenly threw up, violently and the NG tub came out again. This carried on for a few minutes and left Kay quite exhausted and Marion & I wondering what the hell was going on.

Kay fell asleep pretty quickly and a short while later the duty doctor turned up to check her out. She couldn't find anything and came to no particular conclusion but said that she would talk to the duty oncologist. So we waited and wonder whether we would be allowed to go home, whether in fact we should go home. A while later the oncologist turned up and we had a chat with her. She was not to concerned about Kay's state. She thought that the pain, sickness and high blood pressure might be related to the concentration of cyclosporine in Kay's blood. She theorized that possibly the dosage of cyclosporine had been increased too quickly and decided that they would take a look at Kay's blood to be sure. But in principle, if Marion & I were OK with it, we could still go home. I admit that I had cold feet about the idea, but after a chat the specialist suggested that we be initially allowed home "on leave", meaning that a bed would be kept available for us for a few days. Also we would be expected back on Friday for a routine blood test and possibly another platelet transfusion.

We returned to Kay and explained to her what had been agreed. She wanted a shower before going home, but complained that she felt very weak and could barely stand up and walk to the shower. She appeared to be very weak and her leg muscles looked rather atrophied. The specialist returned a short while later and check Kay over and explained to her (again) that she was satisfied and that there was a bed for her if anything went wrong. So that was finally it.

The last nasty job was to refit the NG tube. While Marion sorted this out, I took another load of stuff back to the car, checked out of the McD house and then moved the car to the main entrance of the hospital. I returned just in time to have missed all the staff saying bye-bye to Kay.

She was given a trophy for completing the treatment, which she's displaying in the photo above. We then piled out to the car (with another load of stuff) and then we were off home.

Kay fell asleep pretty quickly and woke up just before we get home. At home, she ran into the house and started searching for the cats, Charlie in particular. After that she headed into the garden and insisted on playing some football firstly with Marion and then with me. After that she was busy doing this and that until Natasha arrived home from hockey training. Nattie brought the rest of Kay's team with her, so Kay went out to the front gate and, at a distance, had a quick chat with her team mates.

Later we sat down to eat and Kay even managed to join in, although she eat very little of course. Still, I'm stunned. I started wondering if we'd brought the right child home. The sick, weak and tired Kay from the afternoon had vanished and in her place was a child who ate, kicked a mean football and went up/down stairs without showing any sign of weakness.

I'll put some more photos of all this up tomorrow, but for now I'm glad just to be hanging on the sofa at home with Kay & Nattie tucked up in bed upstairs.

T+26: GOING HOME!

Sickness decreased, leucos up, red cell count up (from transfusion), platelets same (getting another transfusion), BUT WE CAN GO HOME!

Scary, but true.

T+25: Discharge Meeting Postponed

Kay has been sick again this morning, again losing the NG tube. She has also developed a rash on her arms, legs and upper body. The duty doctor has seen her but as yet has not drawn any conclusions except to postpone the discharge meeting that was planned for this afternoon. Hopefully we will hear more this afternoon. We may yet get to go home tomorrow but I suspect that the chances are decreasing.

T+24: This is hard

It may well be that Kay can go home on Wednesday but at the moment her nausea is getting worse. In the last 24 hours she has been sick 4 times, each time throwing up her NG tube. Yesterday evening and early this morning she was sick. The reinstallation of her NG tube in the evening was extremely painful for some reason. This evening she started feeling sick again around 8pm. She bravely fought off the feeling for as long as she could but eventually, just when I was briefly out of the room, she was very sick and brought up the tube again. I walked back in just in time to drag the tube out of her throat. Again the process of refitting it caused her pain and when the tube was in she complained that it was painful and stopped her swallowing properly. But given the choice of taking it out or leaving it, discretion won.

I arranged for her to get a paracetamol for the pain in her nose and cuddled her until she fell asleep, around 11pm. But an hour later she suddenly woke complaining that she felt sick again. I stopped her feed pump, but shortly after she was sick again and again the tube came up. I've proposed that we now leave refitting the tube again until morning. It means that she won't get fed during the night, but she's absolutely fed up, very upset, tired and her nose is painful. So letting her rest I think is the better course of action, but I have yet to hear whether the doctor approves.

I'm exhausted. I was up early(ish), I've been at the office and then I've been running around all evening with one thing or another. On top of this the feeling of complete helplessness is debillitating. I'd do anything to relieve Kay of this problem. I think that the nurses are getting sick of me asking whether there's anything more that can be done. But the answer seems to be, no, she just has to get through it. I hope that this isn't the beginning of another medical mistake, a moment when we as parents should make more noise about the problem. I think not, she has no other symptoms than nausea and so as long as that remains the same I guess the professional wisdom is the right wisdom. But it is very hard.

And I wonder how we will cope if this pattern carries on at home. Not least the amount of washing and cleaning involved will impose an unwanted additional load.

T+24: Going Home on Wednesday!

Today Faithless' new album was released, entitled "Not Going Home". I'm glad to say that he (and I) got it wrong: the plan is that Kay will go home on Wednesday. The basic reason is visible below:

Kay's leukocytes have risen from 0.4 to 0.7 and, better yet, her neutrophils are at 0.6, just above the minimum threashold of 0.5. The doctors are now convinced that Kay is showing a solid trend in the (initial) recovery of her immune system. They also think that they have found a good enough balance with her cyclosporine level and have today switched her on to oral medication.

However, her red cell count had dropped to 4.7 and her platelets to 17. Therefore the decision was taken to give her 450ml of red blood cell and a platelet transfusion. I suspect that this was also done to make it easier for her to go home. The only thing that bothers me is that the effect of Friday's platelet transfusion only lasted for 2 days. I hope that this will be taken into account, meaning that her blood should initially be tested a couple of times per week when we're at home.

When Marion called me with today's news (I was at the office), she gave me a near heart attack. The first thing that I heard was stress in her voice, then I realized that she was crying. I really thought that I was about to hear the very worst news, not the best. I think that my heart rate hit 180 for a short while.

Now we have to start the logistic operation to move back home, including moving a car load of stuff from the McD house and Kay's room, cleaning the house, ensuring that we have all the right meds and supplies, etc, etc. So it will be a busy few days. But needless to say, we all can't wait.

T+22: Still uncertain about going Home

I had a chat with a doctor yesterday evening about Kay's state. The last two evenings she's had what seems to be a very mild allergic reaction to something, possibly the cyclosporine anti-rejection drug. Yesterday the duty doctor wanted to see the reaction for himself, which is nothing more than some red patches on her knees (yesterday) and her shoulders, arms & lower leg (Friday). It's not entirely clear whether it is an allergic reaction because it seems to appear only in the evenings, not with the same meds in the morning, or even what's causing it.

During the chat with the doctor it became clear to me that they are wrestling with the correct dosage of cyclosporine for Kay. In theory they should be able to find a dosage that results in a more or less constant concentration of cyclosporine in the blood. However, with Kay everytime that they measure the concentration they find that it's too low so they keep increasing the dosage - it's now been increased four times and Marion & I suspect that this is what is causing Kay's nausea since the nausea started last Monday when the cyclosporine dose was increased.

The cyclosporine is currently administered intravenously. Before Kay can go home, she has to be switched on to oral cyclosporine. But they have to have stablized the concentration of intravenous cyclosporine before they can switch to the oral version. So the instability plus the mild allergic reaction is raising some questions about what's going on. I gather that from today Kay will ge her meds later, 8am & 8pm, so that she can be kept under closer observation.

Regarding the nausea, the doctor told me that he really doesn't think that it's linked to the cyclosporine. I showed him Kay's dance video from T+7 and asked him why, 7 days after the transplant, Kay was so well and active and now, 21 days after, she feels so bad. He said that it's all due to the time it takes for the effects of the chemo, the radiotherapy and the BMT itself to work their way through her body. Whilst a patient can recover from a heavy chemo within three weeks, the combination of all of the above puts a much bigger strain on the body that takes longer to reach its maximum effect and longer before recovery starts. So in other words, this is just more or less normal for the stage that Kay is at.

Exceptionally, yesterday I was talking to the father of another BMT patient on the ward who is more or less at the same stage as Kay and he was telling me the same thing, that his son feels very sick, etc. However this boy also has problems with infections in his mouth, etc, which is something that Kay has avoided (so far).

So I suppose that all our joy at seeing Kay dancing around was always going to be short lived and that her current state is still very good, everything considered.

Yesterday was otherwise pretty quiet. I did manage to get Kay to play a short game of Room Hockey, but within 5 mins she was tired out. Spent the evening having a "House Party", ie we watched five episodes of House back-to-back. That has to be enough for one evening.

T+21: Mickey Escapes Again

We're all struggling with one sort of cabin fever or another. This afternoon even Mickey made another attempt to escape, again concealing himself in Kay's dirty bedding. Marion, now familiar with the intimate workings of the laundry system, managed to track him down quite quickly. He had only managed to get as far as the department's laundry bin and Marion only had to look through three sacks of dirty laundry to find him. He got a good telling off from Kay followed by a big cuddle when he was returned. He is now tied securely to Kay's bed to prevent any further escape attempts and the staff have been strictly warned to keep a good look out for him.

Like the weather outside, the dark cloud here is still hanging around, getting bigger even. Kay is still feeling very nauseous and has been sick a number of times. She drinks & eats hardly anything and so is on more or less a constant NG feed. Yesterday she managed to throw up her NG tube as well and so the day was officially declared a "rotdag", a bad day, and she was given another bead for her Tough Kid Necklace (Kanjer Ketting). (I've not mentiond this before, I'll try to remember to write about it in the coming days).

Her blood results today were also a little disappointing, see below:

The total white cell count has remained the same all week, 0.4. However, a component of the overall white cell count, neutrocyte count has risen to 0.26. This is generally seen as a good thing and indicates that her system is still moving forward, albeit slowly.

Her platelet count has fallen from a high of 44 on Monday to 19 today. This triggered another platelet transfusion. Her red count count has remained stable at 4.9, just above the transfusion threshold. Again this is seen as a good thing. Overall she remains in an ongoing fragile state but, apart from the sickness, has no other complicating factors - YET.

She is now a lot weaker than a two weeks ago when she was making dance videos and even since last weekend when we played Room Hockey. She now barely gets out of bed and I can't imagine her running round the room again for quite a while yet.

The conversations about going home continue however. Marion has had a detailed conversation with the transplant coordinator today about "being at home, do's and dont's". She is now home for the weekend to prepare the house for Kay's eventual return. Lucky me, I get the whole weekend in the hospital so that I can have the joy of going to work on Monday. Somehow there's something wrong with this picture but I'm too tired to work it out. I have a feeling that Marion has cleverly managed to categorize "going to work" as being the same as a "free day". Hmmmm.....

T+19: No Improvement in Blood Counts

Slightly disappointing results this morning: Kay's white cell count remains 0.4 and her platelet count is dropped to 28. Better is that her red cell count has risen ever so slightly, so maybe a blood transfusion can be avoided.

Kay has spent all day feeling nauseous (spell checked!) and has unfortunately just been sick again. She's a bit down from the high of making dance videos, but so far its just a bit of a dark cloud in an otherwise blue sky. The nurse is checking whether to put Kay back on the antiemetic (also spell checked) drug again. We'll just have to see where this takes us.

When I got here this afternoon Marion was in bed with Kay, under the blankets. She's been suffering from the cold at night for the last few nights and now is feeling it during the day too. On the other hand I'm walking around in shirt sleeves, so I one of us is well screwed up. Hopefully she's not getting sick or anything nasty. I was going to recommend that she run up and down stairs a few times, but she's dragging around a few extra kilos as well at the moment so I think that that idea will be treated as a non-starter.

We had a minor outbreak of panic a few hours ago when we realized that we were down to our last bottle of alcoholic mouthwash and that tomorrow the shops will be shut (Ascension - (spell checked!)). The clear threat to Kay's health from poor oral hygene and to our mental well-being from de-toxing got Marion out of bed and moving pretty quickly. She's now on her way back with a few bottles of Sauvignon Blanc (not spell checked, I know that one by heart) and, hopefully, feeling warmer. I guess that there's a lesson in this somewhere...

T+18: Sleeping Beauty

I could take photos of Kay sleeping the whole day long, she's so beautiful. And also because she practically slept the whole day. So, not much to report. The only noteworthy thing is that she's been complaining about feeling sick for the last 24 hours. The cause is unclear. It's not so bad that she's prepared to accept drugs to damp the feeling, but neither is it so insignificant that she can step over it. Still, at the moment a minor concern. (However I literally just wrote that and then Kay phoned me to say that she had been sick. So I reckon that this is a symptom of something. Whether its a symptom of something significant remains to be seen).

Tomorrow is the midweek blood count which will give a better idea of the rate at which Kay's system is recovering. In other words a better idea about when she's likely to be able to go home.

A couple of days ago it suddenly occurred to me that the DNA of Kay's blood - ie white cells - will from now on be different from her own DNA. This idea could form quite a cunning twist in a crime novel, don't you think? Somehow a poor innocent donor gets convicted of murdering someone based on the presence of their DNA at the crime scene, whilst the perp. gets away with it. Of course, not that I expect that Kay would murder anyone. But if she did...  

T=17: Blood Counts Rising

The great news today is that Kay's blood counts have continued to rise. The white cell count had arisen to 0.4 today:

What is even more interesting is that it seems that her platelet count is starting to recover as well. Without a transfusion it has risen to 45.

Her red cell count is hovering around 4.9, which is very low. But at the moment the medics don't plan to do anything about it unless Kay starts suffering from extreme tiredness.

Marion tells me that she spoke to our lead doctor this morning and he said that if things continue like this Kay will probably be allowed to go home early next week. That's an idea that is far too attractive to even think about right now, although Marion is going to start the process of preparing the house for Kay's return this week.

After another bad night I decided that I had to get my ass into gear and do some exercise. So I set out to do a quiet 50km ride along the river towards Germany and back. When I got to the half way point - a ferry crossing - I thought that I'd continue on for a little way to the next crossing point. However that turned out to be another 20km up river, so my ride ended up at just over 80km. I'm sat here at the moment feeling refreshed and tired in a heathy-ish sort of way instead of the stressed/bored/cabin fever tiredness of the last days. Hopefully I'll sleep better tonight, but that's far from certain since it's my turn to sleep on the bed of nails.

Oh, to be at home.

T+15 & 16: Four in a Bed

I've been a bit lax with updating the blog for the last couple of days, mostly because I have been too tired in the evenings to put pen to metaphorical paper but also because not much worth reporting has happened. We have enjoyed a few days with Natasha, although that made us miss Lauren more than usual. On Saturday Kay & Nattie got themselves lost in the Sims 3 to the extent that it felt like we were missing a couple of people. In the evening all four of us squeezed onto Kay's bed and did some family vegatating in front of the TV. Fun for a while, but rather cramped and sweaty after a couple of hours.

Yesterday was Mother's Day and both Kay and Nattie made Marion some very nice presents. The above picture shows Marion reading the card that Nattie had made for her. I have some nice photos of Kay giving Marion her present but Kay's blogging rules do not allow me to publish photos of her without her headscarf on, so I'm afraid that you'll have to miss those.

I worked out how to set up an ad-hoc wireless LAN using my laptop. This allowed us to connect my iPad and the girls iPod Touch's together so that we could play a networked game of Uno. This was very cool for a while. But for some reason Uno kept reporting a network error and we couldn't managed to finish a game :-( So the girls went back to the Sims.

Later in the afternoon I played a round of Room Hockey with Kay, which was great fun. Kay managed about 10 minutes before her legs needed a rest, which then turned into a short snooze.

Nattie & I headed back to the McD house early, since I planned to go to the office today. But I had another terrible night's sleep, waking up at 3am and only dozing after that. At 6:45 I attempted to get out of bed but I was so dizzy with tiredness that I reckoned that I'd be a danger to other road users if I tried driving. So I emailed the office and flopped back into bed. I felt like a complete lazy sod, frankly. But then it's not like me to lie around if I don't need to, so take your pick.

T+14: HUGE NEWS!

This morning's blood results are back: Kay's white cell count has started to rise! Leucocytes are 0.2! Wow!

Fantastic news.

T+13: A day in the life of...

7:00: Today started early (again). I've been awake from about 5am, fully awake but trying to find sleep again (and failing) since 6am. At 6:45 I got up to get a cup of tea and continue working on rebuilding my laptop while it's still quiet (ha!). At 7:00 the night nurse comes in to do her final check on Kay and asks me if she should leave the NG feed running or not. Since we have currently given up trying to get Kay to eat anything, I told her to let it run. Kay woke up around 7.15 saying that she couldn't sleep anymore. She tells me that she can only sleep on her tummy or with the covers over her head. I say that I have the same thing, that there's too much light in the room and one feels so exposed lying in bed. Kay agrees. I ask if she wants the radio on, she says yes. So we have a nice start-the-day cuddle listening to Radio 10 Gold.

8:00: I sit back down with my laptop and start a backup running, then check my email. While I'm doing this, Kay falls asleep again. So much for not being able to sleep anymore. Leonie, our day nurse, comes in to check Kay at the start of her shift. We have a chat about how much Kay is sleeping and Leonie tells me that it's also a side effect of the radiotherapy. She says that they get teenage patients who just sleep the whole time. I think about Lauren and start to wonder if she's been sneeking away for sunbed sessions under a gamma ray generator. Leonie asks if there's anything she can do for us, but we're OK. Time for another cup of tea and breakfast. The breakfast provided for parents is truly terrible so I have a couple of raisin buns to eat. Missing some juice though, but yeh, shortcomings of the Hotel Paediatric Oncology.

8:30: I decide to get dressed and change the room from its night to its day configuration. This involves stripping the parent camp bed and thoroughly washing it, the mattress and the pillow. The sheets/covers can only be used once and then have to go into the wash. Expensive. The bed ends up being stored in the bathroom and the chairs & tables moved around for day use. After this I head to the McD parents room for breakfast - we're not allowed to eat in Kay's room. I have a superficial chat with the father of the boy from two rooms further along. His son received his transplant two days ago, from a Dutch donor interestingly enough. We discuss the advantages of blog communication - his son runs his own blog. Both of us avoid talking about anything more substantial. When I get back to the room, Kay is still asleep.

9:00: Big day, today. My Apple iPad will arrive from the US, arranged for me by my good friend Ron (thanks, Ron!). I have been counting down the minutes (maybe this is why I've not been sleeping?) until it arrives. Get on the Fedex tracking site and see that the package is at Veldhoven and will be delivered before 12pm. Another gadget to keep me occupied. I guess that by now there's more computing power in this room and in a average African nation. The alarm on my iPhone goes off to remind me that it's time for Kay to clean her teeth. But she's still sound asleep, so that will have to wait a little while. Not much else to do right now, so it's back to fixing my laptop.

9:50: Kay wakes up, again. This time it seems like she's here to stay. For a while I'm busy seeing if she wants anything but she's not interested in eating or drinking. She picks up her laptop and starts looking at something that Frank sent her. Around 10:20 she reminds me that she needs to clean her teeth - see, the alarm does have some function. Leonie comes back in to check whether Kay needs anything but also gets a negative answer. I'm trying to get MS Office downloaded from the office to my laptop so that I can install it (again). A new check of the Fedex tracking site says that my package has left Veldhoven and will be delivered on time, before 12pm, thus. I get myself involved in a email conversation with the office and for a while time passes quickly.

11:00: I'm in need of a shower and a change of clothes so I tell Kay that I'm off to the McD House. Mama is cooking there and will be along shortly. Kay's still on her laptop and barely acknowledges my departure. I find Leonie and tell her I'm off for a shower and that Kay will be on her own for a while. The only thing on the medical menu for the day is a visit from the Physio. Blood counts are only done on Monday, Wednesday and Friday, so there's no transfusion likely today. I get to the McD house, make a cuppa and then Fedex turns up. So I spend the next 2 hours showering, having lunch and messing around with my iPad, not necessarily in that order...

14:00: I head back to Kay's room, Marion is already there. She tells me that the word from the staff is that they no longer expect Kay to develop ulceration problems in her mouth, etc. Oma has arrived for a surprise visit and is sitting on the bed with Kay playing some kind of word game. Kay is much more awake and active than yesterday. Marion is very taken with the iPad. But as yet I have no 3G connection for it and it really needs a network connection to work to full effect. As I carry on messing, Jolanda and her son, Kay's friend Joep, turn up for a visit. Not long after that some friends of Oma's turn up and the room is getting rather too crowded. I start fretting that it's too crowded for Kay's safety so after a while I offer to leave. But Oma's already planning to leave with her friends and Marion & Jolanda decide to retreat to the girls gossip corner. I'm left with the kids who promptly set about keeping themselves busy with various games. Leonie comes in to check out if Kay is OK and fixes up drinks for the kids. They are flat out busy with Room Hockey and the ball is flying everywhere when the Physio sticks her head in the door. She comments that she's obviously not needed here today and say's she'll see Kay next week. Rather a rapid and convenient conclusion in my opinion. In amongst all this the cleaner decides to start cleaning Kay's room. There seems to be some rule that he's not allowed to move anything and since there's stuff all over the place, I tidy up. Otherwise he's going to work to no significant effect. Even so I have to point out to him that he missed cleaning under Kay's bed.

16:30: All visitors have departed and things have returned to "normal". Kay feels a bit tired but wants to play a game with Marion. I'm using the Kindle application on the iPad to carry on reading my book but just on different hardware than yesterday. But I don't think that the iPad is a replacement for Amazon's Kindle: the Kindle is much lighter, easier on the eyes for reading and has much better battery life. At 5pm Kay is tired so she and Marion flop on the bed and on goes the TV. Marion says in her Command Tone,"Rob!". I dully respond, my perennial response to the Command Tone. "How about a glass?", referring to our daily oral hygene ritual using chilled flavoured alcohol that we import ourselves. I point out that it's too early by an hour. Marion grumbles something about me being a boring sod. Or maybe I just made that up. I don't know.

17:30: Hmmmm... a nurse we had never seen before comes in to give Kay her evening meds. While she was doing this, all of a sudden Kay creases up in pain and starts crying, breaks out in a sweat. The nurse has blithely dumped the contents of one of the syringes into Kay's line, something that, based on past experience, *everyone* should know causes Kay considerable pain. Marion complains to the nurse and I point out that we've mentioned this 20 times. Marion says that it's even in Kay's case notes. Nurse steps over it, obviously we're just moaning parents. I take an instant dislike to this woman. Hopefully it's the last time that we see her. 17:50, still ten minutes to go until we can open the mouthwash.

18:30: Mouthwash ritual in progress, evening looks a little brighter. Marion heads off to warm up the food that she cooked earlier at the McD house. Kay's not eating. I'm well into a Val Mcdermid book, on the iPad. I finished Diane's "The Bay at Midnight" a couple of days ago. I have been tasked to bring full containers of mouthwash to the McD parents room - it's important not to complete this hygene treatment without food in one's stomach. While we're sitting eating the mother of the BMT girl three doors away comes in. Marion switches into social interrogation mode, I don't want to know, (Hasn't she learnt anything?). I try to focus on "The Weakest Link", but I can't decide what I hate more, Ann whats-her-name-with-the-dreadful-wink or ward gossip. I get back to the room at 19:15 after hearing all about the election, Brown, Cameron and that other guy, which is even more boring and predictable than a day locked up with a sleeping Kay. Kay is in a playful mood, sticks her tongue out at me which is a challenge to a tickle-attack. Then, after having been thoroughly tickled, starts sending me SMS's from Marion's phone, "I love you".

19:45: Time to Skype with Nattie. We take turns in asking Nattie about her day and making arrangements to pick her up tomorrow.

20:15: I pack up my stuff and head back to the McD house for the relative comfort of the beds there. Marion is complaining that there's nothing on TV. So, what's new? Kay is threatening to call me on the phone early tomorrow, monkey. Marion's pestering me to tell her what I'm going to do this evening, a type of question that I avoid answering because an answer is then usually followed by a bunch of comment. My plan is to connect my new Sony Z1 Core i7 SSD laptop up via the HDMI cable to the huge screen Philips TV in the McD lounge and watch last weekend's Doctor Who episode either via the Slingbox from home or via a fudged connection to the BBC's iPlayer. While messing around with my iPad. Gadget heaven. So you can imagine the kind of comment that I'd get if I said this to Marion. But now she's thinking I'm off out on the town, chasing skirt or something equally devilish. She really doesn't know what kind of boring old sod I am. When I get back there's two couch-potato fathers slumped in front of the TV watching Big Brother or something equally banal. There goes my evening...  Now, what was that other idea? Oh yeh, iPad.

T+12: Sleep, Sleep and more Sleep

Kay is extremely tired and slept the greater part of the day today. She's complaining that her legs feel weak, which is not surprising. She finally climbed out of bed around 5pm for a shower and when she'd finished I challenged her to a round of balloon badminton to give her a bit of exercise. After 10 mins of this, she climbed back into bed. In herself, Kay seems fine. Not too much "cabin fever" yet. I keep thinking that all this sleep is a symptom of how hard her body is now working, rebuilding it's entire hemo-ecosystem, the stem cells dividing to produce the precursors of each of the leucocyte, granulocyte and red blood cell lines, etc, etc. A fascinating thought.

Marion has been very depressed all day. The sad events next door have badly affected her in combination with home/normal life sickness. The disadvantage of building social contacts with other parents in the department. Although it was my day off, I felt too tired to go cycling. I feel right on the edge of getting ill and although I know that going cycling makes me feel better, I don't want to push my system so hard that I get sick. So I offered to swap places with Marion and give her the chance to get some sun and air. I have no problem with sittting with Kay, I can burn the time messing around with my laptop and reading, etc. I seem to have an endless supply of minor things that I've been meaning to look into for a long time.

I bought a (fantastic) new laptop some weeks ago. But somewhere in the last days something got screwed up on it. Adobe PDFmaker wouldn't work and various other smalls things weren't right. I tried to sort out the problem but it just seemed to get worse such that the power management stopped working. SO yesterday I bought an external HD, backup the laptop threee different ways and then returned it back to it's factory configuration. So now I have to repeat the job of configuring it from scratch. In normal life this would be a massive pain in the ass, but here it's just another way of mindlessly burning time.

Anyway, Kay & I ended the day "House"ing again. Only one episode this time since it was quite late when we finally started. Afterwards I tucked Kay up in bed and she was asleep in no time.

T+11: No Title

The boy in the next door room, recent recipient of a bone marrow transplant, died today after having been moved to the intensive care. We don't know the details, the staff of course are saying nothing. Our hearts go out to the parents and family.

Kay continues to be as well as she can be under the circumstances. Our doctor tells us that the daily case review spends the least amount of time on her, which is a situation that we hope continues.

Marion & I have been out having dinner with Frank this evening. We're both starting to suffer major home sickness. I'm fed up of sleeping on a bed that is literally and figuratively barely removed from the floor, constantly being disturbed by pumps, peeps, pees, pots and personnel. Marion is desperate for her garden and her house, I would guess.

But as long as these things remain our only worries, we're not doing badly.

T+10: Day by Day

Kay continues to do well although we are now into the period when she has absolutely no resistance. According to Marion - I have been at the office for the greater part of the day - Kay spent most of the day sleeping. Her blood levels remain extremely low with her leukocyte count off the scale. She had a platelet transfusion as expected. Her red count is still dropping but still above the level that a transfusion would be required.

This evening I continued to feed Kay's addiction to "House" (which I share, I have to admit). We got through episodes 17 & 18 of series one, so we still have a long way to go yet. But we were very satisfied that House got Vogler in the end. I do wonder how a child who has been subjected to so much medicine can be so addicted to a medical series. We were lying there this evening watching a scene in which the camera focussed on the various fluid lines running into a patient. Kay has more, right next to her bed. Weird.

We had a lot of responses to Kay's dance videos here, on youtube and in response to Marion's emails. It's so good to hear from everyone. These are long days and the messages that we get break them up. I gather that many people have the habit of reading Marion's email over breakfast. Equally we look forward to seeing what responses we get the morning after a posting. I know that many people simply don't know what to say to us. I'm not sure that I know what to say to us. But it doesn't matter, it's the thought that counts.

Kay is lying in bed now, lightly snoring away. Such a lovely sound.

T+8: Fun Time

Today can be summarized as follows:

1)   All Kay's hair fell out. She's now back to looking like a real cancer victim.

2)   For English viewers: http://www.youtube.com/watch?v=CUyX8_zjL6I

3)   For Dutch viewers: http://www.youtube.com/watch?v=86D2zm2C84E

The videos pretty much say everything.

(Hopefully YouTube won't screw up the video conversion this time. If you get noisy playback, let me know)