Saturday 31 July 2010

T+99: Not much change

Apologies for the silence, I've been between laptops for the last few days. My new Dell arrived yesterday so I've been working hard at getting it basically configured.

Kay's last few days have been mixed but fairly stable. Eariler in the week she developed an infection around the line in her chest which caused her a lot of (additional) pain. She has been given a broad spectrum antibiotic and it seems that the infection is clearing up. Certainly on Thursday she seemed to have less pain in her chest. I haven't yet spoken to Marion to hear how things are today. (I'm struggling getting used to the keyboard layout of this laptop, making lots of tryping mistakes). This infection is of concern because in principle it could stop her coming home for her birthday.

For the rest there's not too much changed. On Wednesday her white cell count rose slightly from 0.4 to 0.6, which is a good thing. However these are still small figures. The CMV virus load has remained the same this week. We had hoped that it would drop from last week's 10e3 into the "safe zone" of 10e2. But that's not happened yet. We're still hoping that it will drop further before the bone marrow boost transplant. The boost is scheduled to take place on the 13th August.

The BK virus symptoms remain largely the same, Kay is still urinating blood and on occasion has a lot of pain after urinating. Marion is of the impression that there is less blood in Kay's urine, but we'll have to see.

Kay in her self is extremely tired and very low. According to Marion she slept the whole day yesterday. On Thursday she was more active, to the extent that I shot this iPhone video http://www.youtube.com/watch?v=UuhKTnA3hLw of her singing with Lauren. She was cheerful and we played some games and danced for a few minutes to some 80's music (Brass in Pocket). But at the end of the afternoon she was absolutely exhausted and complaining that she had done too much. Everytime that she feels pain it all becomes too much much for her and she feels that it's very difficult to go on. The trick at the moment is to keep her spirits up, to bring in the outside world and to offer her something to look forward to.

She has had a lot of cards and presents from people. Also, her school has arranged a sort of "treasure box" of presents for her from the children. They have given her one present to be opened each day of the school holidays, each present from one of her classmates or friends at school. These things cheer her up enormously and give her something to look forward to each day. Also she feels less "forgotten" by her friends and classmates, which at this time of the year is an easy feeling to have, with everyone going on holiday and the school being closed.

The biggest thing on the horizon is the possibility that she will be allowed home tomorrow so that she can wake up in her own bed on her birthday. We have warned her to be cautious and not to get up her hopes since we'll only know that she can go home tomorrow. But as long as everything remains stable... 

The plan is that she will come home tomorrow and will return early Tuesday morning for the next BK virus treatment. The logistics around this are fairly complicated. She will have to have a platelet transfusion tomorrow to ensure that her platelet level remains high enough during the time that she's at home. Then there's her medicine regime, which is pretty extensive. Also she will probably need to have antibiotics via her line, which is beyond our skills. So I gather that Marion has arranged for nursing support at home. Marion is on top of all of the details involved, to be honest what's left of my mind has been tied up in the business this week.

We're doing our best not to look forward to her being at home, but still, it would be fantastic. Plus, Marion & I would get the chance to share our new bed together for the first time. What a strange idea!

Tuesday 27 July 2010

T+95: We Love Kay's Donor

Big News: Kay's donor has agreed to provide a top-up transplant! Wow! Fantastic! Our gratitude knows no bounds, if it ever did. The procedure will probably occur in the week of 9th August. Another big week, as if we haven't already had our fair share.

More Big News: Assuming everything remains stable Kay will be allowed to go home on Sunday & Monday so that she can wake up in her own bed on her 10th birthday. Fingers crossed that everything remains good enough. Big hug to Leonie, who has fixed this up.

Further News: Her blood counts bounced back yesterday, white cell count back to 0.4. Bl**dy Hell! This excursion has resulted in us burning ourselves up all weekend. No real explaination from the medics, could be a natural fluctuation since 0.4 is next to nothing anyway. One of my favourite comedians, Mike Harding (you have to be Mancunian), once desribed one of his teachers as the sort of person who would tell you on Friday that he was going to strap you on Monday. This is exactly what this little escapade feels like now. Jeez.

In spite of all this Kay is mentally very low. She has developed chest pain around her line in addition to the bladder/peeing pain. There's no externally visible indication of what this could be, no sign of infection. But the surgeon will come and take a look at her later today. The added pain from the line has increased Kay's misery and she finds it all too much. She requires quite a lot of of support at the moment. She's also taken to sleeping a lot (again), but I suspect that that may be due to her red cell count being low. She will get a transfusion later today.

Right now (in between me writing this...) she's screaming with pain when she pees. She's just been given painkillers and is now trying to sleep. Poor thing, all this pain is so difficult for her. I keep telling her that pain is pain and doesn't mean that there's anything seriously wrong, but that's a message I'd have trouble believing in her state.

Oh and by-the-way, I started to ask her whether she wanted a main birthday present for use in her room or for when she got home and she damned well guessed what I'd got in mind - a mountain bike. Child is so damned perceptive, it's impossible to get anything past her.

Sunday 25 July 2010

T+93: The Things one does for one's Children

I'm struggling to provide you with a measure of today. On the one hand, measured on a scale of a day, it was not a bad day. Kay has had much less pain today, probably because she's now getting systematic pain control. As a result she has been happier and more active. Right this minute she's got TMF on the TV and is doing a word puzzle. She slept a lot this morning and has been quite active this afternoon. Chatting with Aunty Alison & Uncle Dom in Australia. Oma (Marion's Mum) then came to visit with Oom Wim (Marion's Uncle) and we went to the Theatre square (this hospital is brilliant w.r.t. facilities) and we flew (Guy & Glen's) helicopter. And we showed Oma Mama's birthday present from Daddy. Kay spent around 2 hours talking to Oma & Oom Wim, etc. When they left she fell into a deep sleep for an hour or so. Great!

Measured on a scale of longer than one day, everything remains the same. The BK virus symptoms remain the same, Kay is still tried by nasty thoughts and we're still locked up in this room with no view of the future. Still, this remains a challenge in shortening one's horizons.

Story for today: at 17:30 Kay told me that she was hungry. Her stomach had rumbled a whole three times! She wanted to eat something. She doesn't need to say that to me more than once. So I asked her what she wanted. "The pasta that was made by Aunt Audry's friend that one time when we visited them in France" was the answer. Since I wasn't there, that's a wish that's a bit difficult for me to fulfill, even ignoring the limited ingredients available in her hospital room. So I asked if there was anything nearer to home that met with her desire. "Penne Pasta with Butter", was the answer. So I checked with the ward. Sorry, not possible the response. I checked with Marion, maybe there was pasta at the McD house? No, but there is a fresh pizza Margarita in the McD fridge. Kay decided that this was good enough, so the deal was struck.

I had previously saved a pizza box from New York Pizza (by now I'm a volume customer) for just this moment. So I grabbed my box and hurried over to the McD house. I pre-warmed the oven to 200C and then made sure that the pizza was well cooked. Since the weather has cooled off, I took the opportunity to change into long trousers. Shorts will be a bit chilly later when Kay is asleep and I head back to my own bed. The pizza timer pinged. I cut it up into Kay sized pieces, packed it in my saved pizza box and practically ran back to the ward. It's a 10-15 minute walk each way (big hospital), but I guess I broke some kind of record getting to Kay's room.

I walked in, announcing that the pizza boy had arrived and hoping that Kay was still hungry - by this time it's 18:15. She happily took the box out of my hands, opened the lid, selected a slice, took a bite, and...   put that piece back, selected another piece, took a bite and... announced that it was far too heavy for her tummy. In the meantime I was trying to cool down, seems like the decision to put on long trousers was a bad one, the sprint from the McD house had left me rather too warm considering the temperature in the hospital. I told Kay that it was fine if she didn't want to eat the pizza but two mouse-sized bites could not have overloaded her tummy. I said that the feeling of heaviness was in her head. She tried another bite, but obviously it wasn't going down. Ok, no problem.

I took the pizza off her and tried a bite myself. Frankly it was tasteless supermarket heavyweight cardboard crap and I guess that if we want Kay to eat we'll have to make sure that we offer her food with some kind taste and that isn't just an excuse to shove calories in one's mouth, which can be the only explaination for the existance of this stuff. I mean, who the hell eats this kind of trash anyway? It's even blown off by post Chemo, post Radiotherapy patients - peoeple who are known to have no sense of taste at all.

I mentioned last week that I'd been working on a project for a while. I'm now able to reveal what the project was: Mama's birthday present. I have made Marion four photo albums, one for each one of the girls and one of them together. The photos date from the start of digital photography in the Howe Household, thus the end of 1999. I have put days of work into these albums, I've classified all 20,000 photos in my collection and then sorted out the best ones for albums. I've then edited them and finally produced the albums and had them printed. I started this process during Kay's bone marrow transplant period and have been working on them ever since. Unfortunately the company I chose to print them required 7 days for processing, so the albums arrived late, Wednesday to be precise. I picked them up from home yesterday and gave them to Marion in the evening. I think that she was pleased with them. You can see the photos that make up the albums at www.flickr.com/photos/howefamilypics. They are in various "Sets". The "Favourites" set holds just the ones that I like best.

A week tomorrow it's Kay's birthday. I guess that will be celibrating it in Room 13. This poses a problem: do we buy Kay presents that focus on her confinement or do we buy things that encourage her to look forward? She has wanted a Mountain Bike for a while and I had promised her one. Seems like a good idea for a birthday present, but then what's the message that Kay will get if we wheel a new bike into Room 13? I think Marion & I need to think this out fairly carefully.

That said, I already have a "Perfume Making" set and a "Soap Making" set, which are things that she can do here. I've also got a "Bomb Making" set (from a company called Insha'Allah Inc. They also have a set called "Make your own Microbes" that temptingly describes itself as providing "All the fun of The Andromeda Strain in a Box", but I think that we have enough microbes already), but I guess that this will need to wait until she's home, certainly given the way that she's feeling about Room 13 right now.

I took another one of the short term anti-anxiety tablets last night and for the first time in months I slept beyond 6.30am. In fact I woke at 8:45 and then had to scrape my tired ass out of bed in a hurry to get over to Kay before she started complaining. So if I'm late for work tomorrow, you know why. Probably going to have to think about setting an alarm for the first time in living memory.

Anyway, these are the last words that I'm going to write from my beautiful new Sony Vaio Z1 laptop. Sony know how to design a fantastic machine but they simply do not know how to support it. In spite of having bought an on-site, next day warranty with the system, Sony refuse to honour it and insist that to get my 3G modem fixed I have to send the Z1 back to them for a week or more.

I have no idea how they expect me to work c.q. survive without a laptop for a week - and bare in mind that this is a laptop targetted at busy executives. In the meantime we have argued with them and they have agreed that we can return the Z1.

I'm heart broken, it's a fantastic laptop with a beautiful screen. I did all the work on Marion's photo albums on the Z1's Adobe RGB screen and the (colour) results are great. But I cannot work with a laptop that doesn't have next day, on-site service. So I have ordered the Dell equivalent. Everytime I buy a computer from somewhere else than Dell I live to regret it. So the Dell laptop may not have such a great screen and may not be as well put together as the Sony, but it comes STANDARD with a 3 year next day, on-site warranty, included in the price. And we know from experience that Dell honour their warranties.

No brainer, Sony you damned IDIOTS. I hope you read this (or the complaints I've put on Facebook).

Saturday 24 July 2010

T+92: Blood Counts Collapsed

Yesterday was a bad day, to say the least. All week we had been looking forward to going with Kay to watch the arrival parade of the Nijmegen "Vierdaagse", four day walking event. This event, that attracts 40,000 walkers from the world over, involved walking 30, 40 or 50 km each day for four days. On Friday afternoon the walkers pass the hospital and their achievement is celebrated in grand style. The children have the chance, in bed and all, to be transported down to the curbside and to watch the celebrations. We were all looking forward to this very much. It would have been a great distraction for Kay and she would have been able to be outside and participate in life for a few hours and I had stayed at the hospital with Marion to enjoy the moment.

But in the event Kay was not allowed to go. Her blood counts, which had been stable at 0.4 (white cells) all week suddenly collapsed yesterday, dropping off the scale, ie < 0.1. Essentially this means that her bone marrow is back to where it was just after the conditioning therapy 90 days ago. Marion & I were absolutely gutted by this unexpected turn of events. But because the hospital was essentially closed yesterday we have not had a chance to discuss it with the BMT specialist so we have no idea what it means. We avoided telling Kay about the counts, we just told her that under the circumstances the duty doctor was not comfortable with Kay going outside, etc. And that if she did there was a big risk that she could develop a fever and be back on the monitor and need oxygen again, etc. Kay bought it rather philosophically and reluctantly.

This disappointment came after yet another morning when Kay had been screaming in pain from her bladder. The pain has become so bad that she started saying that she's just not strong enough to see this through and that she just wanted to go home and for all this to stop. She's fed up of being stuck in the same room with no idea when she will be able to go home, she doesn't know when the pain will end or what is going to happen to her. Marion was pretty much in a similar state, though with the pain substituted by the pain for her fear for her child. And I was having a very hard time to control my own sense of panic and fear. I think that it is fair to say that looking at the three of us, yesterday was one of the worst days yet, maybe the worst.

Further, after all the success with Kay's feeding, yesterday her weight dropped sharply as well. She has also been sick a couple of times in the last 24 hours. Again we have no idea why and it seems that neither does anyone else. Perhaps some part of her weight gain was fluid retention, but as she is on fluid balance I guess someone should know what. The most likely explaination for the sickness is that it's the virus since it isn't preceeded by nausea.

We had a serious talk with the duty doctor yesterday and she will focus on stabilizing Kay's pain relief. The problem is that the inside of Kay's bladder is infected with the BK virus and the normal stretching and contracting movements that the bladder does causes pain. There's not much that can be done about this, the doctor checked with a urologist whether a catheter would be better but the answer was not, that the catheter would irritate the wall of the bladder just as badly.

I struggled to understand why I was feeling so damned depressed and frightened yesterday. The facts are the that drop in Kay's blood counts doesn't really change anything. We already knew that she needs a boost transplant of stem cells and we had already been warned that her blood counts probably would not pick up until the viral load has decreased and the boost transplant has taken place. I'm not in much of a hurry to talk to the BMT specialist because I'm pretty sure that this is what we will hear - these events change nothing about her diagnosis or treatment. So why has my reaction been so strong? Why when I got home yesterday did I feel so incredibly bad?

On the drive back from the hospital I could only think that this time I'm the problem, that my mental state is so low that I'm not able to act proportionally to these kinds of events. I think that the same is true for Marion. So I went past our GP's and picked up prescriptions for the anti-anxiety medication that she recommended for both of us. I took the first table of the fast acting part of the medication last night before bed but I have to say that I didn't notice any effect. This morning I'm better than I was but only as a result of 7 hours of sleep. I'm now off out on my bike for 50km or so. That usually helps pick up my mental state. We'll see.

If they weren't already, these days are the hardest yet. An apparent backwards step in Kay's bone marrow, terrible symptoms from the BK virus, cabin fever from 7 weeks locked up in the same room with no end in sight. We're all exhausted. We need some good news, a solid development in the right direction. Another drop in the CMV virus would be good. A reduction in the acute BK virus symptoms would help. But better yet, a stable increase in Kay's white cell count would be wonderful. Please...

Thursday 22 July 2010

T+89: Small Improvements

Tuesday was a hell of a day for Kay. The treatment for the BK virus started, which involves hyperhydration. The result was that for the greater part of the day she needed to pee every 20 mins or so and peeing causes her great pain. It was very tough, also for me since I was walking backwards & forwards with bedpans the whole day, etc. Everytime I settled into doing something, like trying to read, I'd have to get up again to help Kay. Kay is also very tired because her sleep is constantly being broken up by the need to pee. We have resorted to putting a nappy on her at night so that she doesn't need to get out of bed quite so often. But this still needs to be changed every hour or so.

At one point we tried to reduce her pain by giving her a paracetamol suppository, but this had her screaming her head off with pain to the extent that I felt right on the edge on panic. Eventually we sat her on a bedpan and she managed to excrete the suppository. But the experience left my nerves ringing and I demanded to talk to a doctor about what could cause Kay such pain. Essentially the doctor didn't know but promised to keep a close eye on things. The next paracetamol went in via the NG tube.

The good news on Tuesday was that the CMV virus load has dropped by a factor 10, from 10e4 to 10e3. I guess that this means that Friday's attack on the CMV using a targetted immunglobine worked. If it wasn't for the BK virus I think that we would be feeling extremely happy. But as it is, things remain complex and uncertain and Kay's still got a lot of pain. Still, with the change of medication as a result of the BK virus and the decrease in CMV load it's possible that we might start to see an improvement in Kay's blood counts. But the head oncologist is cautious on the subject, she thinks that the stem cell "top-up" transplant will be necessary before a significant improvement in Kay's counts can be expected.

It's getting easier to get enough calories into Kay. Ditto with medication. I discussed this with the specialist on Tuesday. Last week I had raised the idea that Kay was producing too little stomach acid (and that the anti-acid meds that she was getting every now and then were not helping) - thanks to my Dad for the idea - and as a result Kay was started on a drug that helps the stomach digest food. The specialist asked me whether there had been an improvement and I told her that I thought that the combination of a different liquid feed plus the stomach medication had had a big effect. We're now able to run the liquid feed at 125ml/hr, which is twice what we were able to achieve a couple of weeks ago. Yesterday we were only 100ml short of the 1.6 litre daily target and I expect that by pushing the feed a little harder we will be able to hit the target while still allowing Kay to have some rest periods during the day.

Kay got her school report yesterday and what an amazing school report it is. She got straight A's for most of her core subjects. In spite of not having attended school for a large part of the year and only being able to keep up with remote classes sporadically, she has managed to get top marks in arithmetic, reading and comprehension skills. An incredible result under the circumstances and a testament to the support that she has had from her teacher, Esther, and from the hospital's resident teacher. And also to Kay herself, who works quite hard practicing sums, reading and doing puzzles.

Today we have the second dose of the BK/CMV antiviral med. Kay is in poor shape with a lot of pain around her bladder. But there's been less blood in her urine since the first dose of this medication so we have to hope that her actue symptoms will quickly lessen. And oh yeh, I forgot to mention, she has a further two new viruses, one of which is a simple rhino (cold) virus and the other something similar. Neither is a big worry at the moment.

So we continue on. Tired, struggling but making slow progress.

Tuesday 20 July 2010

T+86: Mama's Birthday / New Virus

Today (Monday) was Mama's birthday. She had the good fortune to be able to enjoy it at the hospital. But Kay had a surprise in store, she had arranged a special breakfast-in-bed for Mama. The staff decorated the door outside Kay's room and hung a poster on the wall wishing Mama Happy Birthday. I brought Natasha and Lauren with me in the early evening and we had a whole 90 minutes together doing the cards-and-presents thing before Marion took Nattie & Lauren home. Not a bad day, but not a good birthday either.

On the medical front, Kay is doing better with respect to calorie intake and general nausea. The new liquid feed seems to be tolerated by her system much better and we're now able to pump it into her at reasonable rates. We're still not hitting the target of 1600 calories per day, but we're doing better every day. And the most important thing is that her weight is increasing, it's now above 28kg, which is a decent improvement. Kay has more energy and is sleeping less, although she is still very tired.

I mentioned last week that she was starting to suffer from a bladder infection, lots of pain urinating, etc. At the end of last wek two cultures of her urine were taken but both provie inconclusive. However she was started on an antibiotic, just in case. On Saturday things took a turn for the worse. She was literally screaming with pain when she had to pee and breaking my fingers while holding my hand during the process. She had to pee at least every 30 minutes, so you can imagine the all too frequently repeated scene. I was going crazy running backwards and forwards with bedpans.

Around midday I kicked up a mild fuss that nothing was being done to alleviate Kay's pain. So the duty nurse called the doctor, who prescribed additional medication to relax Kay's bladder. But the pain continued. In the evening I again raised the subject with the late shift nurse. She too felt that Kay was in too much pain for a simple bladder infection and she called the doctor again. Again, without coming to see Kay, the doctor told the nurse that all was being done that could be done at that point. By this time Kay been being pissing razorblades for more than 3 days.

On Sunday Marion started making a fuss about the matter. Kay had been sick and thrown up the NG tube without having felt nauseous. This was something different. By coincidence the duty doctor happened to be making a routine visit when Kay had to pee. She then became concerned that Kay was in way too much pain for a normal infection (deeerrrr) and decided to do something about it. The concern at that point was that Kay could have got another virus - the BK virus - to which BMT patients are also susceptible after a transplant. The doctor arranged for an ultrasound echo to be made of Kay's bladder and it turned out that walls of her bladder were way thicker than normal. Also she started to show blood in her urine. The doctor was then rather motivated to quickly identify the cause of the infection. She arranged for a urine sample to be urgently tested for the BK virus. This test normally takes two weeks, but Kay's case was seen as very urgent and therefore the results were expected in 24 hours.

The results came in late this afternoon and sure enough Kay has the BK virus. The doctor was pleased by this outcome. The BK virus can be treated and I gather from her phraseology that the alternatives are much worse. The interesting thing though is that the treatment for the BK virus also attacks the CMV virus. So the current CMV virus treatment has been stopped and tomorrow the BK virus treatment will begin. The good news with this treatment is that it only runs three times per week. The bad news is that the medication can damage Kay's kidneys and therefore a protective medication must be given 3 hours before the treatment and twice after the treatment. Also, Kay must be hyperhyrated during the treatment. The good news is that this drug is not (as) toxic for bone marrow (but for kidneys instead). The bad news is that the BK virus does suppress bone marrow activity. In other words this is a damned tricky medication and, while the load on Kay's bone marrow from the current CMV treatment will decrease, the new virus will compensate. Whether this is better or worse, no-one can say.

The biggest downer of this twist in the story is that we were on track to be able to take Kay home later this week or sometime next week. Most of the care had been arranged for Kay to get the 2x daily intravenous medication for the CMV virus at home. I suspect that the new medication is just too tricky to be done at home and that we're going to be stuck in hospital for many weeks yet. The doctor was non-specific about how long it will take the BK antiviral to bite, but it's clear that it will take at least a week and probably longer. We had hoped that Kay would be able to celebrate her birthday (2nd August) at home, but under the circumstances I doubt that this will be possible.

The paperwork requesting an additional stem cell donation from the donor will has probably gone out of the door today. So we're on course for a top-up transplant in the next weeks. Let's hope that we get some synchronicity in the events and that this new drug plus the antibody treatment for the CMV virus reduces Kay's viral load such that when the transplant arrives her system is able to offer it a 'cleaner' environment.

The only thing that I'm left wondering about is, if the BK antiviral also attacks the CMV virus, why has this drug not been tried earlier? Why the (expensive) antibody treatment instead. I suspect that I can guess the answer and I suspect that I'm not going to like it very much. But tomorrow I have a meeting with the head oncologist, so I'll ask her.

It's late now. Kay is sleeping peacefully, so I'm off to bed myself.

Friday 16 July 2010

T+83: Thirteen Medicines Per Day

To pick up where yesterday's entry stopped, Marion had a hell of a night with Kay. The transfusion of platelets was finished around 1:30am. Then the NG tube had to be refitted. Kay was extremely upset by this and the whole thing was something of a drama. When they finally settled down, Kay's bladder infection started playing up and she needed to pee every 15 mins for the following two hours. After that it slowed down to just every half hour. The result was a badly broken night.

The good news today is that the result of the DNA test on Kay's blood cells shows 90% are of donor origin. This means that she can get have a top-up transplant without the need for further conditioning. Phew. Also, her weight has increased again, soit looks like we're making progress on that front too. Now we just need to get this damned virus sorted out.

The antibody attack on the CMV virus was started this afternoon without further ado. But it will be (a) week(s) before know whether it's had any effect. Contrary to what I understood yesterday it seems that this treatment will be repeated once per week for the next six weeks.

Kay has been started on two new medications today, one for her apparent bladder infection and one to help her stomach digest food. I was curious so I counted how many medications she's getting on average and it's around 13 different drugs per day, some repeated twice per day and some three times. I wish that we could collect airmiles from the Pharmacy, we'd be able to take the entire family on a round the world trip by now.

I'm sat here, early Friday evening, feeling totally exhausted. My body is aching, my head is spinning and my mind clouded in fog. The recommendation has been made that I get some chemical help from my GP since it seems clear that I'm suffering from deep seated chronic fatigue. But I'm pretty drug resistant, so I'll have to discuss it with my GP.

Anyway, enough for now. I want to lie down and... and well I don't know what, I'm too tired to do anything and it's too early to sleep.

Thursday 15 July 2010

T+82: Blood Counts Down

Yet again, apologies for the silence. This week has been very tough, I have been very tired in the evenings and the rest of my time has been filled with another project that I'll tell you about next week.

The reason that this week has been so hard is that Kay's blood count has dropped. From last week's high of 0.7, her white cell count dropped to 0.5 on Monday and then to 0.3 yesterday. This is a huge and very worrying disappointment for us and we have been struggling to understand it. Further, the-all-important CMV virus load measure has not dropped. In the first week of the new anti-virus treatment it dropped by a factor of ten, but it remained largely the same last week and again this week. In other words, her CMV virus load is not decreasing in the way that we had hoped.

Just to recap, the CMV virus suppresses bone marrow activity, as does the anti-vrial medication given to combat the virus. As long as Kay is not able to produce her own defence against this virus, she has to be given anti-viral medication that prevents her system from developing the necessary defense, ie a circular problem.

This evening we met with the senior oncologist to hear about the latest results and discuss what happens next. She told us that it happens that the anti-viral medication reduces the CMV virus to a level where it is not making the patient sick but that it is not able to reduce it further than that. She told us that they will try an additional attack using 3rd party CMV virus antibodies.

Many of us carry the CMV virus in our bodies but our immune systems have developed a natural resistance to it in the form of antibodies able to recognize the virus. The antibodies are generated by T-cells. Kay has no T-cells at the moment so her system is unable to generate the necessary antibodies. The new treatment will involve introducing CMV antibodies gathered from regular donated blood into Kay's system in the hope that they will recognize and attack the virus that is causing all these problems. The combination of the anti-viral medication plus the - one-off - antibody treatment should further decrease the viral load on Kay's system. The production of a useful volume of CMV antibodies involves processing a huge volume of blood. In other words, this is a very, very expensive treatment.

The specialists have also reached the conclusion that too much damage has been done to Kay's new bone marrow for it to thrive unassisted. Therefore thay are planning to give her a second, additional bone marrow transplant (from the same donor), a "top-up" so to speak. This involves going back to Kay's donor and asking them to donate again, a process that will involve the donor yet again passing a medical screening test. Dear Donor.

But first it is necessary to determine whether the blood cells in Kay's body have been produced by donor stem cells or by her own (remaining) stems cells. If it turns out that a significant percentage of blood cells have her own DNA then there is a risk that a top-up transplant of donor cells would result in rejection problems. In this case to will be necessary to subject her to a further round of conditioning therapy to kill off her existing bone marrow, ie another round of major chemotherapy. The question then arises whether her system can survive more chemo. In the event that the majority of blood cells are of donor origin, a new transplant can be performed without complications. You can guess what we're hoping for. The results of the test should be in tomorrow.

On the positive side, we seem to be making progress with calorie intake. We have slowly and systematically managed to increase the amount of liquid feed that we're able to get into Kay. We have also judiciously applied the Coke treatment where necessary, but have also found that it doesn't work all the time. She still either feels sick around 10pm every evening, or is sick. Marion just this minute sent me an SMS saying that Kay has been sick and that she's thrown her NG tube up. So now, because of her low blood counts, it will probably be necessary to give her a platelet transfusion before the tube can be refitted... Marion estimates that it will be 1am before this can be done. Whoopee, another very late night.

In summary, things remain very difficult and very worrying. My belief is that the CMV virus can be beaten, that a top-up transplant can be done without further ado and that we will get through this horrible period. The reason that I believe this is that nothing else makes sense, the integral of everything that is going on still seems to me to be positive. My analytical and quantitative mind at work. But this offers me more solice than any of the other alternatives on offer.

As usual, we look forward to hearing from you. Kay loves to get cards from people and to hear that there is a world outside her hospital room.

Sunday 11 July 2010

T+78: Coca Cola It's the Real Thing

The heat of the last days plus general tiredness has discouraged me from updating the blog. This morning I settled down with my laptop to write an update only to discover that its 3G hardware seems to have failed. This update is coming via my iPad, but the browser doesn't support the full range of formatting available in the blog. Anyway...



Kay's blood counts rose again according to Friday's figures, up to 0.7. So it does seem that we have rounded a corner. The last CMV count was not greatly changed but no-one seems to bothered by that. In fact the medics have begun to talk about the possibility of Kay going home, everyone feels that Kay's condition will improve greatly if she's at home. The notional date for her going home is 19th July, which would make the best possible birthday present for Marion. But there's a lot of ground to cover first: her medical situation needs to be stable and provision needs to be made for her to get intravenous medication at home, at least twice per day. This is complex and I'm also left wondering about how it will be funded.

As mentioned before, Kay's biggest problem no longer seems to be medical but the fact that we have been unable to get enough calories into her. I had a long chat with the Dietician on Thursday and we agreed to change Kay onto a different type of liquid feed and to setup a more systematic way of experimenting with flow rates, concentrations and timing. Marion started with this on Thursday evening, but more or less immediately Kay was very sick. My feeling was that it was unlikely to be related to the new food since she'd only been on it for a short while. But the sickness continued through Friday (evening).

As agreed, Marion had kept the flow rate low and had built in pauses, but still the problem continued. Both of us started to feel a little desperate, it seemed as if this new food was worse than the old one. Yesterday Marion was chatting with one of more experienced nurses here who suggested that giving Kay Coca Cola might help. Apparently this is common practice in the Rotterdam children's hospital. Since at that moment Kay was feeling sick, Marion gave her 30ml fresh Coke via the NG tube. Ten minutes later, miracle of miracles, Kay was feeling better, no problem with her tummy.

Later that evening Kay started complaining of feeling sick again, as usual. So I ran 20ml of Coke into her, again via the NG tube. Within 30mins the sickness had again passed. Now we're left wondering if this really could be a big breakthrough. (Just think how much all those things that we're so used to thinking about as unhealthy, like McDonalds and Coca Cola, have contributed to Kay's progress here. One of the Nurses told me last week that McDs is the only takeaway food that the department will allow the chemo-kids because McDs is the only company that will guarantee that the food is fresh enough and that the oil clean enough for the food to be served to immune-compromised children. So don't believe everything you hear about McDonalds, this company has my deepest respect).

But before we all go off halfcocked claiming that Coke is a wonder product, we have to remember that the feed has been changed and that the dosage of the anti-rejection drug (nasty drug) is also slowly being reduced and that the Coke trick has only worked twice. But that said there does seem to be a cause-and-effect relationship at work and we're curious to keep on trying it.

Perhaps the biggest change in the last few days is in Kay herself. Following a long talk with the child psychologist her attitude has change by 180 degrees. The "anti-attitude" has largely vanished and instead she is thinking and acting in a positive way. She's still sleeping at lot, but when awake she's looking for things to do, attempting to eat a little, even smiling. Yesterday evening we had a good Thunderstorm pass by and Kay sat with Lauren & I on the spare bed watching the storm. Her feeling of sickness had passed following the Coke solution and she didn't feel tired, so she sat with us till late watching the lightshow. The psychologist had identified that Kay was feeling isolated from the outside world, so a program of (re)building contact with school and her friends is being put in place. There's no reason that she cannot have visitors, so you're all very welcome (though not at the same time!)

In great need of exercise, yesterday I cycled a 90km loop from our house towards Venlo, then along the Maas for 10km and then back home. When I started around 9am it was 28C, when I finished the air temperature measured on my bike was 38C. Unbelievably hot! The only way to stay cool was to keep moving forward, if I stopped at a traffic light I started to melt. I drank at least 2 litres during the ride and had to drink another two bottles of a rehydration drink when I got home. Jumping into the pool when I got home was a very pleasant moment, to say the least. Maybe t was a bit crazy to do such a long ride in this weather but after the last weeks I really needed to clear my system out and stretch myself a bit.

Tonight Holland goes mad. I'll be at home with Nattie and Lauren, Marion will be here. Kay has been given permission watch on the big screen projection in the children theatre. I think that this permission is more important to Marion though. I wonder what state the country will be in tomorrow?

Thursday 8 July 2010

T+75: Looking Up

A lot of detailed stuff has happened the last days but the most important thing is that Kay's white cell count picked up slightly today, from 0.3 on Monday to 0.5 today. The doctors are now of the opinion that Kay is out of the danger zone, though we still have a long way to go. However worry #1 for us has become Kay's weight and physical state. Her minimum weight was previously set at 28.5kg. She has been in a long slow decline and yesterday her weight reached the all time low of 27.1kg. She has had to have mineral suppliments because we're not able to get enough liquid feed into her during a day without causing sickness. She's extremely tired and weak, probably because her body is slow consuming itself in order to keep going.

We feel that is problem is not "owned" by anyone. The doctors seem mostly concerned with Kay's medical state, the dietican merely says that Kay needs 1600 calories per day and doesn't offer any ideas on how that should be achieved. The nursing staff are struggling with the problem us much as we are, but there's more of them so the problem is dispersed amongst them. So I have concluded that Marion & I have to get organized on the subject and try to find ways to pump 1.6 litres of feed into Kay per day.

The problem is that Kay doesn't seem to be able to take a flow rate of more than 60ml per hour, meaning that the feed would have to run 24 hours per day. But it's clear that if we do this then Kay becomes very sick, seemingly because of a build up of feed in her stomach. Though again, we're not completely sure that this is the reason, but we have noticed that if Kay isn't given any feed then she doesn't feel sick. All very approximate, but what we need to do is try to be systematic about testing the various ideas we have on the subject. My view is that we should try "sprints", ie put the feed on (say) 80ml / hr for 3-4 hours, then pause for an hour or so and repeat, etc. So, we're going to try out flavours around this theme in the next days.

Marion was told today that the staff feel that Kay will really not start to improve greatly while she's in hospital. She is certainly in a poor mental state, but I think that that is at least partially a dietary issue. However, the staff are working on devising a way for her to continue her treatment at home. This will be a welcome move, subject in my opinion to us seeing an sustained increase in Kay's weight. The last time that we were sent home while Kay was losing weight, the problem continued at home and we were even less able to deal with it.

The child psychologist had a long chat with Kay today about how she feels about her circumstances. The result of this was that Kay & the psychologist had a talked with Mama & Daddy. Basically Kay is fed up with us being pushy about her doing things and has asked us to let up. Further Kay feels isolated from the ouside world and is afraid of losing her friends because of her long confinement. She has asked for our help in "bringing the outside world into her room". So we will try to organize visits from her friends and fidn ways to keep her in contact with people outside her room. We feel that we have in fact been trying to do these very things, but it seems that we have been going about it in the wrong way. Both Marion & I were rather frustrated to hear this since we feel that we've not been pushing but merely offering alternatives to Kay lying in bed all day. But yeh, we have to hear what we're being told.

Later the psychologist said to me that Kay is suffering from an "anti-attitude" and this is a perfect description of the problems that we have been facing with her recently. For example, she saw me eating yogurt with fruit yesterday and, without me saying a word, she said that she would love some too. So I spoke to the nurse and in the end arranged for Kay to get just yogurt (her choice). But when it turned up she tasted two spoonfuls and then said that it was the wrong yogurt, it was too thick. So I said that I'd ask Mama to buy some thin yogurt. Kay said she's like that, so I sms'd Marion. She asked what flavour yogurt. Then Kay said that she didn't want yogurt, she wanted Optimel, etc, etc. So it doesn't matter what you try to do for her, it's always going to be wrong. This has always been a characteristic of Kay when she's "in a mood", but she's permanently in a mood these days. If there are two alternatives, then better offer then one that you don't want her to choose first. But right now any alternative is the wrong one.

Needless to say we find this very frustrating. As parents we feel the base need to ensure that our child is getting enough food inside her. This makes us vunerable to the latter kind of manipulation - we're so desperate to improve this eating problem that we'll jump through hoops-on-fire to get whatever Kay wants, and still it's never going to be the right thing. So my conclusion is that in order to be able to lay off on the calorie subject with Kay we need to get control of the liquid feed situation.

This tangled web of problems - weight loss, withdrawn listless child, sickness, liquid feed rates, parental pressure, frustration, Kay's feeling of loss and isolation, etc - is actually very difficult to see through. Everything is so interdependent. Where does the solution lie? Part of the problem is that my head is still so full of fug and tiredness that I can't see how to go about resolving the various issues. I've been doing a lot of suduko puzzles recently and this is just like that situation in a puzzle when you know that there's a way of reasoning through the current state but that no matter how you look at it you just can't see where the breakthrough might lie. I might add that I often use these puzzles to measure my mental state. Sometime I can immediately see locked pairs, etc, etc, and sometimes I can't, usually when I'm really tired. It's an interesting metric.

Anyway, it's late now. I'm less tired than the last days but still, this is a real mental and physical marathon. I've not been cycling for weeks and as a result I've started to suffer lower back pain and stiff muscles, etc. I've started doing various exercises in the morning and evening to strengthen my tummy muscles, which is the usual cause of my back pain, but the real issue is that I have to get back on my bike and knock off the kilometers. Hopefully I'll get the chance on Saturday morning. Target = 80 - 100km. We'll see.

Monday 5 July 2010

T+73: Daddy is Tired

Frankly, I'm too tired to write anything at the moment. Kay is about the same, so nothing major to report. I'll try to find the energy to write tomorrow.

Friday 2 July 2010

T+70: Turning the corner,maybe?

Kay's white cell count was slight up today, from 0.2 to 0.3, which is the equivalent of saying from nothing to next-to-nothing. She ha been suffering nausea from 7pm yesterday, more or less right through the night. She was sick at 1am and agin at 9am. The poor thing is scared of being sick and scared of having to swallow the NG tube again, but both times she managed to keep it in.

This morning she was very withdrawn, mostly because of the sickness. But it's quite hard to see her so miserable. We're trying everything we can think of to managed the nausea but there are rather many variables that are difficult to control.

I'm too hot to write much more, it feels like it's 30C in our bedroom (at home) at the moment. Dread trying to sleep in this heat.

Thursday 1 July 2010

T+69: Better news

Twice per week, on Monday and Wednesday, blood is taken from Kay in order to measure the CMV load (concentration) in her system. The results arrive on Thursday and Monday respectively. We heard today that Monday's CMV load has dropped from 10e5 to 10e4, ie by a factor of 10. This is very good news and signals what we hope will be a sustained trend.

Additionally the result of a further set of (technically very interesting) tests have come in. These results indicate that the vast majority of the white cells in Kay's system contain donor DNA, indictating that they have been produced by the donor bone marrow. The alternative is that they could have Kay's DNA indicating that that weren't produce by the donor marrow, which could then imply that the donor marrow had failed. So good news that they are donor-origin cells. Also, should Kay need an additional top-up transplant, which is a possibility under the circumstances, that fact that most cells have donor DNA makes a top-up possible without the need for renewed conditioning therapy, something that her poor body could probably not take again. Continued smiles all around.

These results serve to confirm the primary diagnosis that it's the CMV virus plus anti-viral medication that have suppressed Kay's new bone marrow. Of course, we still have a long way to go and the situation remain complex and fragile. But at least some of the more obvious disaster scenarios have been eliminated.

Kay is a little brighter today. Yesterday Marion took her outside, across the road to the McD house. (Tip: I was recently reading a book in which the action took place in New Jersey around a canal and a bay. I was curious about the layout so I looked up the location on Google Earth. Brilliant, it added a whole new dimension to my understanding of the story. I love technology! So if you're curious where about our location/layout, check us out on Google Earth!) They hung around there in the garden for a short while and then came back: A Grand Day Out, although not quite Wallace and Gromit.

Today she has not been feeling quite so strong. Her blood pressure was pretty high this morning and that rather knocked her out. She's lying here now watching TV and looking a little better, but smiles require outrageous actions. In this vein, earlier today there was some pretty good dance music on the radio. I started dancing around to see if I could get a smile (funny, girls like this dance stuff) and I ended up grabbing her arms and waving them around in time to the dance music. Kay was laughing her head off, oh so wonderful and worth making an idiots of oneself for (terrible grammar, but I don't care! Just don't make me read "Eats Shoots and Leaves" again).

I'm in the 'fortunate' position of being able to enjoy two whole nights in Kay's room. This is because Saturday is Natasha's birthday and Marion is busy preparing to make a fuss of her. I have a sneaking suspicion that the staff here are trying to sort things out so that Kay can go home for the day. But shhhhussshhhh, don't mention the idea to Kay!