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...
Wednesday, 25 August 2010
Friday, 20 August 2010
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.
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.
Wednesday, 18 August 2010
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).
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).
Tuesday, 17 August 2010
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.
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.
Monday, 16 August 2010
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.
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.
Saturday, 14 August 2010
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.
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.
Friday, 13 August 2010
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...
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...
Wednesday, 11 August 2010
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.
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.
Saturday, 7 August 2010
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...
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...
Tuesday, 3 August 2010
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
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
Monday, 2 August 2010
Birthday Photos... (Updated end of day)
See: http://www.flickr.com/photos/howefamilypics/sets/72157624510535911/
I'll update the collection as the day progresses.
I'll update the collection as the day progresses.
Sunday, 1 August 2010
T+100: At Home!
Kay is home! A huge big "Thank You" to everyone on the ward "De Zee" (The Sea) for all the hard work that they have put into making this possible. It is definitely a non-trivial exercise.
Kay & Marion arrived home around 11:00 and Kay headed straight for the garden, parking herself on a garden chair. Shortly after she headed for (our) bed and slept for an hour or so. She's now back outside chatting with friends and family.
That's it for now, I plan to enjoy the day rather than sit here writing a blog entry. I've cleaned our sailing boat this morning and plan to take it to it's parking place next to the local lake this afternoon. With a bit of luck we might get the chance to use it in the coming weeks.
Kay & Marion arrived home around 11:00 and Kay headed straight for the garden, parking herself on a garden chair. Shortly after she headed for (our) bed and slept for an hour or so. She's now back outside chatting with friends and family.
That's it for now, I plan to enjoy the day rather than sit here writing a blog entry. I've cleaned our sailing boat this morning and plan to take it to it's parking place next to the local lake this afternoon. With a bit of luck we might get the chance to use it in the coming weeks.
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