The primary result of yesterday's biopsy is that leukemia has not returned to Kay's bone marrow.
But apart from this good news, the situation is not simple, the medics are still not sure what the problem actually is. There remain a number of possibilities. I'm too tired and too emotionally drained to write up the full explaination right now, but the mostly likely explaination for the drop in bone marrow activity remains the CMV virus and the anti-viral that has so far been used to combat it.
There are three possible treatments for the CMV virus. It seems that the first one has only been partially effective, whilst possibly having supressed bone marrow activity. The second is currently running but it will be a while yet before we know if the new medication is any more effective. If it's not then we're possibly into a third, experimental treatment. Again, I'm too tired to go into the (very interesting) details, but that's just say that we have to hope that the current treatment is effective.
The current anti-viral also has a suppressant effect on bone marrow activity so what we're looking for this time is the medication to (significantly) reduce the CMV virus load on Kay's system to the extent that it can then be decreased. At that point either Kay's bone marrow should start to recover on it's own or, maybe, a further transplant from her donor will be requested/required. The most important thing is that the CMV load is reduced as soon as possible.
There's much more to tell, but as I have mentioned, I feel mentally and emotionally exhausted. I have some work to do this evening, but I have the idea that maybe I'll risk going to bed early and see if I can get out of bed early tomorrow. I have the idea that my efforts will not amount to much this evening.
Tuesday 29 June 2010
Monday 28 June 2010
T+66: Perspective Now, Answers Later
The last days have been tough, but primarily for Marion since I had Saturday afternoon and yesterday off. It was wonderful for the first time in weeks to wake in my own, albeit new, bed and not have pressing obligations. But on the other side of the fence, Marion has been struggling with Kay's nausea and general poor condition. The final straw came this morning when the results of today's blood count came back: another drop in her counts, particularly her white cell count.
The problem can be seen clearly on the right side of the above graph, although the good (less worse?) news is that the rate of decrease has improved. But maybe that's because we're almost back to square one as far as white cells go.As a consequence of this the decision was made to go ahead with a bone marrow biopsy and this afternoon Kay was taken down to the operating theatre for the procedure - the biopsy is performed under general anasthetic. The biopsy was routine and the various samples have been shipped off to the hospital's lab and also to a national lab that provides a specialist second opinion. The question that needs answering is the obvious one: why is Kay's bone marrow failing to produce? In theory we will know the results of the biopsy late tomorrow. A consequence of the low blood counts is that before the biopsy Kay was given a unit of platelets and afterwards unit of red blood to boost her system.
This factual account of the day barely scratches the surface of the emotional tension that it contained. When Marion got the blood count results she called me, extremely upset. I talked her up a bit and promised to arrive in Nijmegen around 5pm. But the more I thought about her state, the fact that she'd been here all weekend and that Kay was going to have a biopsy the more I felt the need to get here asap. At 11.30am I cancelled the rest of my (fully planned) day and drove over to the hospital. I walked into Kay's room at 12:45. The atmosphere was terrible, you could cut the tension and worry with a knife.
Marion, Kay and one of our favourite nurses were present. Marion was transmitting emotional meltdown like a high power radio station, Kay was extremely withdrawn and tense. Even the nurse looked as though she was on the edge of tears and would rather be subject to an Venusian acid rain storm. Marion had requested an urgent meeting with our lead doctor to discuss the results of today's tests but, not least because I suppose that there was nothing new to say and other patients with more immediate problems, the meeting could not be arranged until tomorrow. Marion was pretty unhappy about this, amongst other things.
Marion handed me a print out of the latest blood counts and I immediately noticed that the differential white cell count indicated a relative increase in the number of lymphocytes, which *could* indicate the return of leukemia. My stomach turned and my whole body felt electrified with terror when I realised the implication of these numbers. But of course I also knew that this was a differential based on a very low count, so possibly one could not draw any conclusions from it. Irrespective, I then also felt the need to see one of the lead oncologists as soon as possible. I really didn't fancy spending the next day or two with this additional worry in my head. So I had a word with our nurse and the senior nurse and explained my specific worry. They promised that they would do their best to get us someone to talk to today.
The next hours were some kind of hell - we're slowly working our way through the full range of flavours. Marion was almost inconsolable, especially during the time we were waiting for the biopsy to be completed. I felt right on the edge of losing it, but I knew that Marion needed some support. So I gave her a bit of talking to. It was clear to me that Kay was to some extent frightened by the depth of Marion's fear. I asked her, for Kay's sake, to pull herself together at least while she's in Kay's or Natasha's presence. They cannot be expected to understand Marion's fears. I SMS'ed our GP, also a friend, to see if she could talk to Marion later in the day. Sometimes a professional shoulder, especially if it's also a friendly one, can be exactly the right thing.
When we returned to the ward with Kay, very quickly one of the lead oncologists stuck his head round the door. I had a distinct feeling that he felt that it was an unnecessary consultation, but b*gger that, I needed to get some answers. But therein lies the problem: at the moment there are no answers. We have to wait for answers. Still as I started talking to him it struck me that I wasn't after answers at all - I recognize the reality of the situation - I was after PERSPECTIVE. And it then also occurred to me that perspective is the key issue in these circumstances. If there are no answers then one can at least place the problem into some kind of perspective. Once I realized this I knew exactly what sort of questions to ask him:
Q) What about the white cell count differential?
A) The numbers are too small for the differential to have any meaning.
Q) Given the current symptoms, is medication still the top of the list?
A) Yes, it's the most probable cause but there could be other causes such as the CMV virus itself.
Q) What about the possibility that it's leukemia?
A) Leukemia cannot be ruled out but it would be very unusual if it returned at such an early stage given that everything else has gone well so far.
Q) Have you seen this kind of problem before?
A) Yes, it's not uncommon. Almost every patient has some kind of problem with viruses, including the CMV virus. These days there are a range of medication options that allow viruses to be combated.
Q) Does the anti-viral medication (merely) suppress bone marrow activity or does it damage it?
A) It suppresses activity. But it is necessary to take a look at the bone marrow to see what is going on. The marrow could be suppressed, it could be attacked by the CMV virus, it could be a rejection problem or a failure to grow. All these options need to be investigated and considered.
Q) And the treatment options in these cases?
A) Depends on the details, but ranges from managing medication to giving a bone marrow boost of some kind, perhaps even by a further transplant.
The result of this discussion is that my perspective has been broadened and put into some kind of context. As a result I feel more able to deal with the situation and, I dare to say, I think that Marion does too. However, we still need to wait for answers before we will have any idea of what to specifically expect.
The final step was to sort out Kay. After talking to the oncologist I told her that I was now feeling much better and what would she like to know? She asked if the leukemia was back and I gave her the above answer from out of my new found perspective. I went on to talk to her about the day and about Mama and how much she's worrying but that she was also feeling better. Kay brightened up considerably, mostly I think because she had been afraid of the biopsy, but also because of the reduction in tension and fear around her.
I told her that this whole thing is a fight and that we win it in our heads. Mama and I have to stay strong and look after her, and she should try to do some things for herself. I said that little things, like drinking and trying to eat something and trying to build up her strength were all ways that she could fight back. She seems to have taken this to heart: this evening she has drunk well and eaten a little lasagne. She's now fast asleep and I hope that she wakes up tomorrow feeling a little better.
Now it's my turn to try and get some sleep.
Friday 25 June 2010
Sidebar: Expensive State of Mind
Here's a little story that I thought might entertain you whilst also giving you an idea of the kind of hole that long term stress creates in one's mind.
For the last year or so I have been suffering from early morning back pain. I tend to sleep on my tummy or rotated mostly toward my front and for a while I have been waking up in the morning with pain on my lower back. I've tried various things to sort this out but eventually I came to the conclusion that it must be related to our bed. Specifically I found that I was sleeping better in India than at home and I found the beds in Indian hotels more comfortable than my own bed.
In principle our bed is not that old, 7 years. It's also a very good quality boxspring and really should be expected to last ten years, at least according to what we had been told. Nor do we have such an exciting life that we would expect to wear a bed out in 70% of its lifespan, if you follow my meaning. So I/we were slow to conclude that the problem was our bed and even slower to decide to do something about it. But after months of battling leukemia I was starting to feel pretty tired and in need of a better night's sleep. So I pressed Marion into agreeing to buy a new bed in the weeks before Kay was admitted for her BMT. My thinking was that if we ordered it before the BMT it would be delivered around the time that we came out of hospital, just in time for me/us to reap the benefits of a new, comfortable bed in terms of quality of sleep. It would also provide us with a little bit of welcome retail therapy, however superficial that sounds.
But the weeks running up to admission were anything but easy and we had little time to shop for a bed. On a Saturday, a week before admission, we ran round a couple of shops to identify the kind of bed that we had in mind. Age brings different requirements for a new bed. These days the kind of entertainment that a new bed would have to support would most likely involve sitting in a semi-reclined position, either with a book or a remote control or occasionally a laptop or iPad. So we decide we were in the market for a fairly upmarket bed with reclining features. But that was pretty much all we got done on the first day. It always takes Marion & I ages to negotiate with each other the kind of thing we want, never mind negotiating with a shop.
Still, after that first day we had a fair idea what we wanted but had not settled on a particular product. As the weekend before Kay's admission approached I tabled the subject of completing the hunt. Marion was absolutely against so doing. She said that we/she had enough to do and that she couldn't spare any more time. I pointed out that it would then be months before we continued with the subject and that I was the one suffering from the current situation. In the end a compromise was reached and we decided to go back to one shop, the Auping Plaza in Eindhoven, where we had had good service, to see if we could make a final choice within a maximum of two hours, since that's all the time that we felt could be spared.
We had measured up our current bed the previous weekend and so we headed off, figures in our heads. When we got to the shop it was pretty busy so we had plently of time to look around. The previous weekend we had only looked in the half of the shop that displayed the kind of beds that we had in mind. But while we were waiting we wandered into the other half of the shop where the more stylistic Auping products are displayed. Fairly quickly we came across a bed that we both liked but that was somewhat different from what we had in mind. It was also somewhat more expensive than we had in mind. But frankly, it is so rare for Marion & I to naturally agree on anything that paying the premium for this immediate compromise seemed like a pretty damned good investment to me.
Once we had the attention of a sales person we fairly quickly evaluated alternatives, wrote them off and chose for the premium product. These beds are made to order, including mattress and material, etc, so there is a longer delivery time, some 8 to 10 weeks. We did our usual tag team negotiation thing and got a decent percentage off the list price plus one or two other bits and pieces. We gave the measurements for the bed 2 x 210 x 80cm. Deal done, we returned home to prepare for the BMT admission.
Because of my recent sleep problems I have been counting down the weeks until delivery. Marion phoned the Auping Plaza last week and heard that the bed would be delivered on Thursday this week, ie yesterday. On Tuesday she was preparing to move out our old bed and happened to check its measurements: 2 x 210 x 90... Oooops! We had ordered the new bed to be 2 x 10cm narrower than our old bed. Ahhh, disaster. Marion quickly called up the Auping Plaza, but a deal is a deal.
So our super new ultimate, but 20cm narrower, bed was delivered yesterday. It's much, much higher off the floor than our old bed and much, much narrower. Last night I felt the need for safety rails on it since I reckon that it's easy to fall out of the damned thing and it's a long way to the floor.
So how did this expensive disaster come about? Frankly, I think that it's my fault. I measured the old bed before the first shopping trip and I think that the total width of 180cm got scrambled in my head into 2 x 80cm. I'm sure that I recollect that during the first shopping trip Marion corrected me. But during the second trip, because we were both so distracted with other things, the incorrect information ended up on the order form. When we got home I even checked the measurements of our old bed but didn't cross check them with the order. I simply confirmed what I thought that we'd ordered. What should have been a rare moment of uncompromised indulgence and marital harmony has been compromised by a stupid mistake.
I guess that we'll get used to the need to sleep more accurately but the days of sharing the bed with one of the kids have passed - I don't fancy risking the almost certain fall. Unless of course anyone is looking for a good deal on a very slightly used Auping bed?
For the last year or so I have been suffering from early morning back pain. I tend to sleep on my tummy or rotated mostly toward my front and for a while I have been waking up in the morning with pain on my lower back. I've tried various things to sort this out but eventually I came to the conclusion that it must be related to our bed. Specifically I found that I was sleeping better in India than at home and I found the beds in Indian hotels more comfortable than my own bed.
In principle our bed is not that old, 7 years. It's also a very good quality boxspring and really should be expected to last ten years, at least according to what we had been told. Nor do we have such an exciting life that we would expect to wear a bed out in 70% of its lifespan, if you follow my meaning. So I/we were slow to conclude that the problem was our bed and even slower to decide to do something about it. But after months of battling leukemia I was starting to feel pretty tired and in need of a better night's sleep. So I pressed Marion into agreeing to buy a new bed in the weeks before Kay was admitted for her BMT. My thinking was that if we ordered it before the BMT it would be delivered around the time that we came out of hospital, just in time for me/us to reap the benefits of a new, comfortable bed in terms of quality of sleep. It would also provide us with a little bit of welcome retail therapy, however superficial that sounds.
But the weeks running up to admission were anything but easy and we had little time to shop for a bed. On a Saturday, a week before admission, we ran round a couple of shops to identify the kind of bed that we had in mind. Age brings different requirements for a new bed. These days the kind of entertainment that a new bed would have to support would most likely involve sitting in a semi-reclined position, either with a book or a remote control or occasionally a laptop or iPad. So we decide we were in the market for a fairly upmarket bed with reclining features. But that was pretty much all we got done on the first day. It always takes Marion & I ages to negotiate with each other the kind of thing we want, never mind negotiating with a shop.
Still, after that first day we had a fair idea what we wanted but had not settled on a particular product. As the weekend before Kay's admission approached I tabled the subject of completing the hunt. Marion was absolutely against so doing. She said that we/she had enough to do and that she couldn't spare any more time. I pointed out that it would then be months before we continued with the subject and that I was the one suffering from the current situation. In the end a compromise was reached and we decided to go back to one shop, the Auping Plaza in Eindhoven, where we had had good service, to see if we could make a final choice within a maximum of two hours, since that's all the time that we felt could be spared.
We had measured up our current bed the previous weekend and so we headed off, figures in our heads. When we got to the shop it was pretty busy so we had plently of time to look around. The previous weekend we had only looked in the half of the shop that displayed the kind of beds that we had in mind. But while we were waiting we wandered into the other half of the shop where the more stylistic Auping products are displayed. Fairly quickly we came across a bed that we both liked but that was somewhat different from what we had in mind. It was also somewhat more expensive than we had in mind. But frankly, it is so rare for Marion & I to naturally agree on anything that paying the premium for this immediate compromise seemed like a pretty damned good investment to me.
Once we had the attention of a sales person we fairly quickly evaluated alternatives, wrote them off and chose for the premium product. These beds are made to order, including mattress and material, etc, so there is a longer delivery time, some 8 to 10 weeks. We did our usual tag team negotiation thing and got a decent percentage off the list price plus one or two other bits and pieces. We gave the measurements for the bed 2 x 210 x 80cm. Deal done, we returned home to prepare for the BMT admission.
Because of my recent sleep problems I have been counting down the weeks until delivery. Marion phoned the Auping Plaza last week and heard that the bed would be delivered on Thursday this week, ie yesterday. On Tuesday she was preparing to move out our old bed and happened to check its measurements: 2 x 210 x 90... Oooops! We had ordered the new bed to be 2 x 10cm narrower than our old bed. Ahhh, disaster. Marion quickly called up the Auping Plaza, but a deal is a deal.
So our super new ultimate, but 20cm narrower, bed was delivered yesterday. It's much, much higher off the floor than our old bed and much, much narrower. Last night I felt the need for safety rails on it since I reckon that it's easy to fall out of the damned thing and it's a long way to the floor.
So how did this expensive disaster come about? Frankly, I think that it's my fault. I measured the old bed before the first shopping trip and I think that the total width of 180cm got scrambled in my head into 2 x 80cm. I'm sure that I recollect that during the first shopping trip Marion corrected me. But during the second trip, because we were both so distracted with other things, the incorrect information ended up on the order form. When we got home I even checked the measurements of our old bed but didn't cross check them with the order. I simply confirmed what I thought that we'd ordered. What should have been a rare moment of uncompromised indulgence and marital harmony has been compromised by a stupid mistake.
I guess that we'll get used to the need to sleep more accurately but the days of sharing the bed with one of the kids have passed - I don't fancy risking the almost certain fall. Unless of course anyone is looking for a good deal on a very slightly used Auping bed?
T+63: Most Difficult Days Yet
Kay's blood counts had dropped further this morning. Her white cell count was down to 0.5 which puts her back into the state where she is defined has having essentially no bacterial defence. It was expected that her counts would drop further, the new medication takes 5-7 days to have an effect. But Marion and I were both affected by the reality and have in each in our different ways found it difficult to get through the day. But as I was saying to a colleague earlier, I would much rather know what it is that I have to fear than simply live in constant fear of the unknown.
I slept at home last night and have been at the office today. When I arrived back this evening I saw that Kay has gone downhill from yesterday. She has been feeling sick for most of the last 24 hours, she has become lethargic and has slept for the greater part of the day. She has developed a mild temperature, 38.1C at the last count, and she is not a happy bunny. We're given to believe that these are effects of the new medication and I sincerely hope that that is the explaination. On the positive side she is has been off oxygen since last night. Perhaps we have seen the last of the para-flu virus. I wish that that was also true for the CMV virus.
Thanks indeed to everyone who has posted comments or sent us emails. They are indeed gratefully received. I've said it before, but to find a comment or an email from someone in my mailbox is special and each message I forward to Marion and share with Kay.
I slept at home last night and have been at the office today. When I arrived back this evening I saw that Kay has gone downhill from yesterday. She has been feeling sick for most of the last 24 hours, she has become lethargic and has slept for the greater part of the day. She has developed a mild temperature, 38.1C at the last count, and she is not a happy bunny. We're given to believe that these are effects of the new medication and I sincerely hope that that is the explaination. On the positive side she is has been off oxygen since last night. Perhaps we have seen the last of the para-flu virus. I wish that that was also true for the CMV virus.
Thanks indeed to everyone who has posted comments or sent us emails. They are indeed gratefully received. I've said it before, but to find a comment or an email from someone in my mailbox is special and each message I forward to Marion and share with Kay.
Thursday 24 June 2010
T+62: Shortcomings of being demanding parents
We had a very interesting discussion with the department's psychologist today about the situation in which we now find ourselves. She pointed out something to us that really hadn't struck me before and that puts our current situation into a better context. As regular readers of this blog may have noticed, Marion and I have in the course of Kay's treatment developed a need to be on top of what is happening and to understand the issues surrounding Kay's treatment.
Last week, as I have previously mentioned, we had a meeting with the oncologist in charge of bone marrow transplants and to discuss the various problems and issues that we were having with Kay's treatment. Partial or incomplete communication was identified as being a problem and we agreed that from then on the oncologist would ensure that we were fully informed. But, as the saying goes, "Be careful what you wish for, as you just may get it".
The psychologist pointed out to us that the oncologist is now bound to keep us fully informed. This means that when there is a potential differential diagnosis, as in the current situation, the doctors are required to spell out to us all possibilities. The fact that this list contains scary alternatives is something that we have to learn to deal with, not least because it's knowledge that we have insisted on having.
Strangely enough, although it doesn't materially make any difference to the current situation, this realisation has made me feel slightly more reasssured. After a lot of thinking about the problem I had already decided that I was not going to spend any more mental energy thinking about the worst outcome. I have the strangest feeling that Kay's bone marrow is 'simply' being repressed by her medication and, while this is not a simple problem, I have the feeling that it's the problem that we face and one that can ultimately be solved. I have this feeling for a number of reasons, both quantitative and qualitative. Firstly, the timing seems to fit. Secondly, Kay is getting better day by day. Thirdly, it's the only explanation that makes any kind of sense. Of course, this attitude leaves me wide open to being blindsided further down the road with all the consequences that brings, but on the other hand I refuse to wind myself up about something that gut feel tells me is simply not going to happen.
Yesterday, when the oncologist started to tell us about the list of alternatives to which the differential pointed I wanted to ask her to shut up. But of course, this is exactly what we had demanded from her last week and on balance I'd rather she informed us and that we have to deal with the relatively short term uncertainty that that brings than live in the permanent uncertainty that comes with blissful ignorance. In this case ignorance is not bliss, it's the equivalent of permanent fear and uncertainty. It turns one into a victim of circumstance. We have learnt that knowing more gives one a certain (illusion of) control over events, or at least the ability to act as the patient's advocate.
I am yet again thankful for the professionalism of the individuals involved in Kay's care. I was explaining to one of the staff today that although I have my criticisms of what happens here, there is not a single member of the staff in whom I have less than complete confidence. I think it is just such a shame that the whole is so much less that the sum of the individuals that contribute to it. But that's another story.
Kay started off the day a little down-in-the-dumps, to my mind. I think that she's disappointed that she will not be able to be at home for Natasha's birthday and also that she's facing a prolonged stay in hospital. But this afternoon she brightened up considerably. She was asleep when the physiotherapist came by and was disappointed to have missed her. So I said that I'd play with her the various throw & catch games that the physio had left behind. The intention was that Kay would play these games from out of her bed, but after a while she decided that she wanted play standing up. And so she did. She spent about 10 minutes on her feet playing throw & catch with me. I have to say that it cheered me up no end to see her active on her feet again. The department's teacher then turned up and Kay had her first school lesson for a few weeks, the first time that she has felt like doing so. This was supposed to be followed by a shower, but she's now pretty tired and is snoozing in bed again.
And so we have more or less passed another day, (partially) processed another shock and (partially) adapted to another period of uncertainty. But I still want to fast forward through at least the next week.
Last week, as I have previously mentioned, we had a meeting with the oncologist in charge of bone marrow transplants and to discuss the various problems and issues that we were having with Kay's treatment. Partial or incomplete communication was identified as being a problem and we agreed that from then on the oncologist would ensure that we were fully informed. But, as the saying goes, "Be careful what you wish for, as you just may get it".
The psychologist pointed out to us that the oncologist is now bound to keep us fully informed. This means that when there is a potential differential diagnosis, as in the current situation, the doctors are required to spell out to us all possibilities. The fact that this list contains scary alternatives is something that we have to learn to deal with, not least because it's knowledge that we have insisted on having.
Strangely enough, although it doesn't materially make any difference to the current situation, this realisation has made me feel slightly more reasssured. After a lot of thinking about the problem I had already decided that I was not going to spend any more mental energy thinking about the worst outcome. I have the strangest feeling that Kay's bone marrow is 'simply' being repressed by her medication and, while this is not a simple problem, I have the feeling that it's the problem that we face and one that can ultimately be solved. I have this feeling for a number of reasons, both quantitative and qualitative. Firstly, the timing seems to fit. Secondly, Kay is getting better day by day. Thirdly, it's the only explanation that makes any kind of sense. Of course, this attitude leaves me wide open to being blindsided further down the road with all the consequences that brings, but on the other hand I refuse to wind myself up about something that gut feel tells me is simply not going to happen.
Yesterday, when the oncologist started to tell us about the list of alternatives to which the differential pointed I wanted to ask her to shut up. But of course, this is exactly what we had demanded from her last week and on balance I'd rather she informed us and that we have to deal with the relatively short term uncertainty that that brings than live in the permanent uncertainty that comes with blissful ignorance. In this case ignorance is not bliss, it's the equivalent of permanent fear and uncertainty. It turns one into a victim of circumstance. We have learnt that knowing more gives one a certain (illusion of) control over events, or at least the ability to act as the patient's advocate.
I am yet again thankful for the professionalism of the individuals involved in Kay's care. I was explaining to one of the staff today that although I have my criticisms of what happens here, there is not a single member of the staff in whom I have less than complete confidence. I think it is just such a shame that the whole is so much less that the sum of the individuals that contribute to it. But that's another story.
Kay started off the day a little down-in-the-dumps, to my mind. I think that she's disappointed that she will not be able to be at home for Natasha's birthday and also that she's facing a prolonged stay in hospital. But this afternoon she brightened up considerably. She was asleep when the physiotherapist came by and was disappointed to have missed her. So I said that I'd play with her the various throw & catch games that the physio had left behind. The intention was that Kay would play these games from out of her bed, but after a while she decided that she wanted play standing up. And so she did. She spent about 10 minutes on her feet playing throw & catch with me. I have to say that it cheered me up no end to see her active on her feet again. The department's teacher then turned up and Kay had her first school lesson for a few weeks, the first time that she has felt like doing so. This was supposed to be followed by a shower, but she's now pretty tired and is snoozing in bed again.
And so we have more or less passed another day, (partially) processed another shock and (partially) adapted to another period of uncertainty. But I still want to fast forward through at least the next week.
Wednesday 23 June 2010
T+61: Worrying Developments, Tense Days To Come
The blood count from this morning confirms that Kay's cell counts are dropping. Tests rule out graft-versus-host problems, meaning that the source of the problem is Kay's bone marrow. For some reason her bone marrow activity is being suppressed. The most likely cause of this is the anti-viral drug that is being used to combat the CMV virus in combination with anti-bacterial drug that she gets to protect her from lung infections. Both these drugs are known to suppress bone marrow activity. Also the timing fits, the drop in bone marrow activity more or less corresponds to the moment that the anti-viral dosage was increased a few weeks ago.
As a result the medics have switched Kay onto different anti-viral and anti-bacterial medication. The disadvantage of this is that the anti-viral has to be given intravenously meaning that Kay will have to stay in hospital for, most likely, many more weeks yet. This is the good news.
The bad news is that the alternate explanation for Kay's reduced blood counts is a that her leukemia may have returned. This can be ascertained by doing a bone marrow biopsy, which the medics have planned for Monday. If Kay's blood counts stabilize before Monday then the biopsy will be cancelled. But if they continue to deteriorate, then the biospy will be done to determine the cause. There are other bone marrow related reasons for a reduced blood count, but I gather that none of them are very pleasant.
So we face some very tense and worrying days. In principle the next blood count will be on Friday, but it is unlikely that the change of medication will have an effect so quickly. We will have to wait until Monday before there is a blood count that may possibly reflect the changes of meds. But even that is not certain. It may take longer for the effects of the medication change to be come apparent. If a biopsy is done, I assume that there will be a MRD measurement done and this takes a week. So I think that we will have to live with this uncertainty for at least a week.
Needless to say Marion and I are very upset by this turn of events. Marion is very emotional and I'm barely hanging on to my self control. The idea of having to spend (another) week living on the edge of total disaster is not attractive. But, yet again, what choice do we have?
On the other hand Kay's general condition continues to improve. She is more active and more alert. She needs less oxygen and she is drinking more and eating the odd thing. This is a good thing. But still, my worry is that there may be no relation between Kay's general improvement and whatever is suppressing her bone marrow. But I have to put the brakes on such thoughts and hang on to the positive things: the timing, her generally good progress so far, her improved condition, etc. But yeh, it's difficult. I'm absolutely dreading the arrival of darkness and attempting to sleep. I think the furies will be out in force tonight.
Right now I think that we can use all the support on offer. Please leave your comments here or send them to "my-first-name" at howe-family dot org.
As a result the medics have switched Kay onto different anti-viral and anti-bacterial medication. The disadvantage of this is that the anti-viral has to be given intravenously meaning that Kay will have to stay in hospital for, most likely, many more weeks yet. This is the good news.
The bad news is that the alternate explanation for Kay's reduced blood counts is a that her leukemia may have returned. This can be ascertained by doing a bone marrow biopsy, which the medics have planned for Monday. If Kay's blood counts stabilize before Monday then the biopsy will be cancelled. But if they continue to deteriorate, then the biospy will be done to determine the cause. There are other bone marrow related reasons for a reduced blood count, but I gather that none of them are very pleasant.
So we face some very tense and worrying days. In principle the next blood count will be on Friday, but it is unlikely that the change of medication will have an effect so quickly. We will have to wait until Monday before there is a blood count that may possibly reflect the changes of meds. But even that is not certain. It may take longer for the effects of the medication change to be come apparent. If a biopsy is done, I assume that there will be a MRD measurement done and this takes a week. So I think that we will have to live with this uncertainty for at least a week.
Needless to say Marion and I are very upset by this turn of events. Marion is very emotional and I'm barely hanging on to my self control. The idea of having to spend (another) week living on the edge of total disaster is not attractive. But, yet again, what choice do we have?
On the other hand Kay's general condition continues to improve. She is more active and more alert. She needs less oxygen and she is drinking more and eating the odd thing. This is a good thing. But still, my worry is that there may be no relation between Kay's general improvement and whatever is suppressing her bone marrow. But I have to put the brakes on such thoughts and hang on to the positive things: the timing, her generally good progress so far, her improved condition, etc. But yeh, it's difficult. I'm absolutely dreading the arrival of darkness and attempting to sleep. I think the furies will be out in force tonight.
Right now I think that we can use all the support on offer. Please leave your comments here or send them to "
Tuesday 22 June 2010
T+60: Ups and Downs, but the trend is Up
The last days have seen mixed developments in Kay's progress. The last two blood counts have shown a downwards trend in her white cell count. Also her red count count has dropped quite steeply.
The top blue line shows Kay's red cell count. The peaks are when she's been given a blood transfusion. The first two transfusions each lasted around 3 weeks before Kay needed tanking up again. The last transfusion lasted 12 days, with a sudden drop between Sunday & Monday. Her white cell count (green line) also fell dramatically at the same time. The positive thing is that her platelet count has slowly risen during this period, meaning that her new bone marrow is continuing to improve at platelet production. I think that this indicates that her new bone marrow is not failing, which might otherwise be indicated by the drop in white cell count. But that's supposition on my part.
We have asked what this all means to the professionals but as yet have not had a definitive answer. We were supposed to have our weekly meeting with the BMT specialist today but the meeting has been cancelled for unknown reasons. Still, no-one seems bothered by these results. I'm beginning to suspect that yesterday's result was an anomally, we'll have to see what tomorrow's results are like. Kay was given blood yesterday so the important figure tomorrow will be her white cell count. Let's hope that it's back to +/- 2.
On the other hand Kay is looking much better than last week. She still needs oxygen, but she's more mentally alert, more active and sleeping less. Her colour was pretty poor during the weekend, but yesterday's blood transfusion fixed that and today she has rosey cheeks. Her heart rate and breathing rate have also improved after the transfusion, so certainly some of her poor condition during the weekend was due to a touch of anemia. She is a bit stronger, is inclined to get out of bed to sit on the toilet chair and just walked the 3 metres to the shower. As I write this she's taking one of her periodic hour long showers. She just sits on the chair in the shower and lets the hot water run over her body for an hour or so.
The last CMV virus measure showed that the level of the virus in her blood remains stable, which is a good thing. The medics face an interesting dilemma with treating the CMV virus: one of the effects of the virus in high enough concentrations is that it supresses bone marrow activity and so prevents the body from developing the necessary response. The anti-viral, the mega-expensive drug I mentioned previously, also has the side effect of repressing bone marrow activity. So the challenge that the medics face is to find the right balance between these two effects. Therefore the anti-viral is not likely to be used in concentrations high enough to rid Kay of the virus completely since that would probably have an adverse effect on her bone marrow. So one can conclude that the anti-viral is being used to keep the virus at a non-dangerous level while waiting for Kay's body to produce the long awaited T-cells.
There also seems to have been an improvement in Kay's nausea. After the events of Friday evening and partial repeat on Sunday we asked if she could be put on a lower calorie liquid feed and it seems as if this has had a positive effect. Kay has not been sick since, touch wood. Also Kay is making a positive effort to drink and eat. Yesterday she eat about 5 mouthfuls of lasagne and she has been drinking small but symbolically significant amounts as well.
Kay's just come out of the shower after 75 mins and I noticed another improvement: her skin is no longer hypersensitive. I could dry her off without her yelling from pain. She also doesn't seem quite so sensitive to temperature, the last weeks she's shivered uncontrollably after stepping out of the shower. Now she's not that cold.
Although Kay remains dependent on oxygen, the amount that she needs is very small. I suspect that the staff are now looking for reasons to send Kay home and I think that they will experiment with reducing her oxygen so that she can be off it and at home as soon as possible. But we'll have to see. I still have no idea whether we will be here tomorrow or this time next week.
The top blue line shows Kay's red cell count. The peaks are when she's been given a blood transfusion. The first two transfusions each lasted around 3 weeks before Kay needed tanking up again. The last transfusion lasted 12 days, with a sudden drop between Sunday & Monday. Her white cell count (green line) also fell dramatically at the same time. The positive thing is that her platelet count has slowly risen during this period, meaning that her new bone marrow is continuing to improve at platelet production. I think that this indicates that her new bone marrow is not failing, which might otherwise be indicated by the drop in white cell count. But that's supposition on my part.
We have asked what this all means to the professionals but as yet have not had a definitive answer. We were supposed to have our weekly meeting with the BMT specialist today but the meeting has been cancelled for unknown reasons. Still, no-one seems bothered by these results. I'm beginning to suspect that yesterday's result was an anomally, we'll have to see what tomorrow's results are like. Kay was given blood yesterday so the important figure tomorrow will be her white cell count. Let's hope that it's back to +/- 2.
On the other hand Kay is looking much better than last week. She still needs oxygen, but she's more mentally alert, more active and sleeping less. Her colour was pretty poor during the weekend, but yesterday's blood transfusion fixed that and today she has rosey cheeks. Her heart rate and breathing rate have also improved after the transfusion, so certainly some of her poor condition during the weekend was due to a touch of anemia. She is a bit stronger, is inclined to get out of bed to sit on the toilet chair and just walked the 3 metres to the shower. As I write this she's taking one of her periodic hour long showers. She just sits on the chair in the shower and lets the hot water run over her body for an hour or so.
The last CMV virus measure showed that the level of the virus in her blood remains stable, which is a good thing. The medics face an interesting dilemma with treating the CMV virus: one of the effects of the virus in high enough concentrations is that it supresses bone marrow activity and so prevents the body from developing the necessary response. The anti-viral, the mega-expensive drug I mentioned previously, also has the side effect of repressing bone marrow activity. So the challenge that the medics face is to find the right balance between these two effects. Therefore the anti-viral is not likely to be used in concentrations high enough to rid Kay of the virus completely since that would probably have an adverse effect on her bone marrow. So one can conclude that the anti-viral is being used to keep the virus at a non-dangerous level while waiting for Kay's body to produce the long awaited T-cells.
There also seems to have been an improvement in Kay's nausea. After the events of Friday evening and partial repeat on Sunday we asked if she could be put on a lower calorie liquid feed and it seems as if this has had a positive effect. Kay has not been sick since, touch wood. Also Kay is making a positive effort to drink and eat. Yesterday she eat about 5 mouthfuls of lasagne and she has been drinking small but symbolically significant amounts as well.
Kay's just come out of the shower after 75 mins and I noticed another improvement: her skin is no longer hypersensitive. I could dry her off without her yelling from pain. She also doesn't seem quite so sensitive to temperature, the last weeks she's shivered uncontrollably after stepping out of the shower. Now she's not that cold.
Although Kay remains dependent on oxygen, the amount that she needs is very small. I suspect that the staff are now looking for reasons to send Kay home and I think that they will experiment with reducing her oxygen so that she can be off it and at home as soon as possible. But we'll have to see. I still have no idea whether we will be here tomorrow or this time next week.
Saturday 19 June 2010
T+57: Waiting for T-Cells
This stay in hospital is mind-numbingly boring and therefore probably the most difficult yet. Yesterday Kay developed a light fever, 38.5C, again. She's still on oxygen and in general shows no real sign of improvement. I'm beginning to suspect that we'll not see any sign of improvement until she starts making T-cells, which is probably still many weeks away. However I asked the duty oncologist about it this morning and she said that the biggest issue is Kay's need for oxygen and that in principle she should be able to recover sufficiently not to need it. But I'm unconvinced, it's not clear to me how you can recover from a virus when you're body is not able to produce an anti-virus defence. But I guess time will tell. For now time is passing very slowly indeed.
Yesterday afternoon Kay complained that she felt sick. During the evening this feeling increased, so much so that she slept in fits and starts. Around 12.30 this morning she started crying from the pain. The doctor was called and she prescribed a painkiller. But whil this was being prepared I talked to Kay and told her that perhaps she should consider what Shrek always says: "Better out than in!". Kay, who had been lying down, decided to be brave and sat up. Within seconds she started being sick. But is was a very odd kind of sickness, initially nothing came out. After a few body wretching spasms she brought up stuff that had the consistancy of peanut butter! I've never seen anything like it and neither had the nurse. It was obvious that this stuff had been lying in Kay's stomach for hours causing all the pain. The moment it was out she began to feel much better. Unfortunately the effort of ridding herself of it also brought the NG tube out as well.
The question was, and remains, what could cause the liquid feed to turn into sludge? No-one has any idea. The preferred theory is that she's under hydrated - her urine has been rather dark of late - and that maybe the fluid is being absorbed first by her body, leaving the solid content to coagulate. Today I've been giving her extra water with her meds and she will shortly be put on an infusion. But really this is a shot in the dark. Again, we'll see. Since she's completely dependent on this stuff it would be useful to find out what's causing the problems.
But apart from the latter moment of 'excitement' there's really nothing happening. I remember an episode of "The Young Ones" called "Boring", in which everything they did turned out to be "completely boring", (which became something of a catch phrase for us afterwards). That's how this feels, but it seems to extend to everything, even as far as South Africa. Last night I tried to relieve the boredom by watching the England match... enough said I think. This afternoon I switched my allegiance to my adopted nation, but even though Holland won 1:0, it was still as boring as the England match to the extent that I dosed off somewhere around the end of the first half. I think that the wait for T-cells is going to be a very long and tedious one.
Yesterday afternoon Kay complained that she felt sick. During the evening this feeling increased, so much so that she slept in fits and starts. Around 12.30 this morning she started crying from the pain. The doctor was called and she prescribed a painkiller. But whil this was being prepared I talked to Kay and told her that perhaps she should consider what Shrek always says: "Better out than in!". Kay, who had been lying down, decided to be brave and sat up. Within seconds she started being sick. But is was a very odd kind of sickness, initially nothing came out. After a few body wretching spasms she brought up stuff that had the consistancy of peanut butter! I've never seen anything like it and neither had the nurse. It was obvious that this stuff had been lying in Kay's stomach for hours causing all the pain. The moment it was out she began to feel much better. Unfortunately the effort of ridding herself of it also brought the NG tube out as well.
The question was, and remains, what could cause the liquid feed to turn into sludge? No-one has any idea. The preferred theory is that she's under hydrated - her urine has been rather dark of late - and that maybe the fluid is being absorbed first by her body, leaving the solid content to coagulate. Today I've been giving her extra water with her meds and she will shortly be put on an infusion. But really this is a shot in the dark. Again, we'll see. Since she's completely dependent on this stuff it would be useful to find out what's causing the problems.
But apart from the latter moment of 'excitement' there's really nothing happening. I remember an episode of "The Young Ones" called "Boring", in which everything they did turned out to be "completely boring", (which became something of a catch phrase for us afterwards). That's how this feels, but it seems to extend to everything, even as far as South Africa. Last night I tried to relieve the boredom by watching the England match... enough said I think. This afternoon I switched my allegiance to my adopted nation, but even though Holland won 1:0, it was still as boring as the England match to the extent that I dosed off somewhere around the end of the first half. I think that the wait for T-cells is going to be a very long and tedious one.
Thursday 17 June 2010
T+55: Kay
In all this blogging I don't seem to have written very much about Kay herself, only about her medical state. So I'll try and correct that to an extent.
The first thing worth remarking is that Kay's eyebrows and hair are starting to grow back, BUT THEY ARE BLACK! Oh, oh, that's going to be a big problem if it continues! Kay already remarked that if her hair remains black she's going to dye it. But at the moment she's more of a mind to shave it off.
Just looking at Kay lying in bed it's difficult to see that there's much wrong with her, apart from her bald head. Her colour is good and she doesn't look sick. I suppose that the dead give-away is the monitor leads, the NG tube and the oxygen line. That and the fact that her hands tremble slightly when she uses them. But she doesn't have a fever, she's not coughing, she really has no other externally observable symptoms.
She has lost a lot of weight and that can been seen from her legs and arms which are very thin but not skeletally so. She is very weak and just getting out of bed is hard work. It's fairly heartbreaking if one allows oneself to think about it, the hockey player is nowhere in sight. It just occurred to me that maybe she could use the poster that I made for her BMT stay right now, with all the pictures of hockey, tennis and riding. A reminder of what she can achieve again in the near future.
Kay's skin is extremely sensitive, borderline painful at the moment. Washing her or drying her after a bath has to be done carefully to avoid causing her pain. She says that she can barely tolerate toothpaste because it tingles far too much in her mouth. Apparently this is a typical side effect of radiotherapy.
I estimate that she's sleeping around 20 hours per day, but a little less each day. She's gone from not showing any interest in what's going on around her to watching a bit of TV or playing a game with me or on her computer. But she soon tires and drops off again. It's difficult to get her interested in anything. For instance I suggested this morning that we could go outside for five minutes on to the lovely play terrace that they have here and enjoy a bit of sun and fresh air. She was not interested, too tired she said.
This is not the Kay we know. Marion & I have just had a chat with the child psychologist, who talked to Kay this morning. She assures us that Kay is fine and that her disinterest and "flat" mental attitude are entirely normal for a child in her situation. She said that Kay is fully aware that she is recovering slowly from a 'flu virus and that she accepts that she's tired and knows that it's all a consequence of the infection. Specifically there's no question that Kay has "given up" or that she's even worried about her current state. She's just given herself over to the necessity of getting through the current phase and knows that there's not much she can do to accelerate the process. When put like that it almost sounds as though Kay has a better grip on the situation than Marion or I.
Another improvement is that Kay has started to smile again. In the last days and weeks a smile has been hard to find. Yesterday evening some of the nurses staged an arm-wrestling challenge in Kay's room. Dave versus Mieke. Mieke secretly gave Kay a large syringe full of water so that, at the critical moment, Kay could soak Dave and give Mieke the edge. Unfortunately Dave turned out to be fairly waterproof and won easily. He then challenged Daddy to a round. Daddy has always been pretty useless at arm wrestling, but yeh, why not? So Dave & Daddy went head-to-head. Dave very politely made it look like an even competition for a minute or so and then wiped Daddy out too. Kay thought that this was all hilarious and sunshine filled the room. Today, smiles are easier to come by, and even the odd hug here and there.
So Kay is getting better, very slowly. Marion & I just have to be patient and live with the uncertainty for a little longer.
The first thing worth remarking is that Kay's eyebrows and hair are starting to grow back, BUT THEY ARE BLACK! Oh, oh, that's going to be a big problem if it continues! Kay already remarked that if her hair remains black she's going to dye it. But at the moment she's more of a mind to shave it off.
Just looking at Kay lying in bed it's difficult to see that there's much wrong with her, apart from her bald head. Her colour is good and she doesn't look sick. I suppose that the dead give-away is the monitor leads, the NG tube and the oxygen line. That and the fact that her hands tremble slightly when she uses them. But she doesn't have a fever, she's not coughing, she really has no other externally observable symptoms.
She has lost a lot of weight and that can been seen from her legs and arms which are very thin but not skeletally so. She is very weak and just getting out of bed is hard work. It's fairly heartbreaking if one allows oneself to think about it, the hockey player is nowhere in sight. It just occurred to me that maybe she could use the poster that I made for her BMT stay right now, with all the pictures of hockey, tennis and riding. A reminder of what she can achieve again in the near future.
Kay's skin is extremely sensitive, borderline painful at the moment. Washing her or drying her after a bath has to be done carefully to avoid causing her pain. She says that she can barely tolerate toothpaste because it tingles far too much in her mouth. Apparently this is a typical side effect of radiotherapy.
I estimate that she's sleeping around 20 hours per day, but a little less each day. She's gone from not showing any interest in what's going on around her to watching a bit of TV or playing a game with me or on her computer. But she soon tires and drops off again. It's difficult to get her interested in anything. For instance I suggested this morning that we could go outside for five minutes on to the lovely play terrace that they have here and enjoy a bit of sun and fresh air. She was not interested, too tired she said.
This is not the Kay we know. Marion & I have just had a chat with the child psychologist, who talked to Kay this morning. She assures us that Kay is fine and that her disinterest and "flat" mental attitude are entirely normal for a child in her situation. She said that Kay is fully aware that she is recovering slowly from a 'flu virus and that she accepts that she's tired and knows that it's all a consequence of the infection. Specifically there's no question that Kay has "given up" or that she's even worried about her current state. She's just given herself over to the necessity of getting through the current phase and knows that there's not much she can do to accelerate the process. When put like that it almost sounds as though Kay has a better grip on the situation than Marion or I.
Another improvement is that Kay has started to smile again. In the last days and weeks a smile has been hard to find. Yesterday evening some of the nurses staged an arm-wrestling challenge in Kay's room. Dave versus Mieke. Mieke secretly gave Kay a large syringe full of water so that, at the critical moment, Kay could soak Dave and give Mieke the edge. Unfortunately Dave turned out to be fairly waterproof and won easily. He then challenged Daddy to a round. Daddy has always been pretty useless at arm wrestling, but yeh, why not? So Dave & Daddy went head-to-head. Dave very politely made it look like an even competition for a minute or so and then wiped Daddy out too. Kay thought that this was all hilarious and sunshine filled the room. Today, smiles are easier to come by, and even the odd hug here and there.
So Kay is getting better, very slowly. Marion & I just have to be patient and live with the uncertainty for a little longer.
Wednesday 16 June 2010
T+54: Finally, an overview
I was driving in to work this morning when I got a call from Marion: "You need to come to Nijmegen as the lead oncologist wants to talk to both of us today". So I carried straight on on the motorway, sailing past the Waalre turnoff. But the call rattled my cage. What could be so important that I had been summoned?
Possibly the explaination lay in yesterday's "happenings": in the early afternoon Kay had a visit from the ophthalmologist (a major spelling challenge, requiring a visit to http://www.dictionary.com/). The reason for this visit is that the CMV virus, present in Kay's blood, can cause inflamation in the blood vessels of the retina which can result in scarring and loss of vision. The ophthalmologist (copy & paste is quicker than trying to write this word again) noted a number of "hot spots" on the retinas of Kay's eyes, possibly associated with the CMV virus. I was pretty shaken by this so I asked her what would happen next. She said that Kay would be kept under careful control. I asked her what this meant, weekly checks? She said, on no, it would be daily checks starting from tomorrow. Shocked again, I said that if they're all of a sudden going to start with daily checks, would it not have been better to have started checking Kay earlier? It was then her turn to be surprised. She replied that she would have to consult on the matter, but I could read from her face the real answer.
This was the last straw for me. If you've read the blogs from the last days you will know that we're yet again struggling with poor communication and lack of oversight of Kay's treatment. We're also being starved of information to the extent, again clear from this blog, that I really don't actually know what's going on with Kay, why the medics think we should still be here and what the prognosis is for various things such as the para-'flu virus, the CMV virus, the need for oxygen, Kay's loss of weight, her weakness and her shaking hands, etc, etc. So I went and quietly kicked up a fuss.
The advantage of being known as a parent-with-an-opinion and of being involved with the complaints commission is that when I make a quiet fuss people listen. So within a few hours our erstwhile "red line" doctor appeared to listen to my grievances. I started with the eye issue (my paste buffer has something else in it now) and why Kay hadn't been check earlier. I then recounted our experiences since being at home, the weight loss, the poor condition. I mentioned that we'd now taken over Kay's medication, etc. He was pretty shocked. He thought that things were going so well. He's seen Kay's videos on Youtube and hadn't realized that we're now talking about a different child. In the end he said that he wasn't our "red line" doctor anymore (news to me!) but that he'd take it up with our lead oncologist (the new "red line" doctor?) and arrange a meeting for tomorrow (today). I said that Marion would take over from me and that she would handle the discussion with the oncologist.
Back to today, even though Marion could deal with such a discussion without me - I'd emailed her a list of my questions - it could be that the summons that I'd received this morning was related to the aforesaid meeting. But also it could be something else. Specifically we'd recently heard of a child who, post BMT, got the CMV virus and spent months fighting it only to have her leukemia return. She had recently been sent home, no further treatment possible. Now, we know that there are considerable differences between the cases, but try holding that thought in your mind when you have been summoned to a meeting at short notice...
In the end the meeting was about Kay's current condition, her prognosis and the events of the last few days. Although I express more or less constant criticism of the systems in this hospital, I do have deep respect for the staff. The lead oncologist ran the meeting perfectly and took the time to explain the thinking of recent weeks regarding Kay's situation in terms that Marion and I could follow. Seen in this light her reasoning was completely sound and understandable. What it breaks down to is that Kay's symptoms of the last week could be explained by a sudden increase in the CMV virus or something else. The "something else" being a para-flu virus, which showed positive in the recent tests.
Such symptoms from the CMV virus would be a serious matter, from a para-'flu virus not. It seemed to the oncologist that such a sudden increase caused by the CMV virus didn't make sense, all things considered the level of the CMV virus in Kay's blood is still too low to expect such effects. Therefore she feels that the symptoms are most likely explained by the para-'flu virus. But nothing is certain and they remain cautious about drawing definitive conclusions. I asked about the hot spots on Kay's retinas. She said that the ophthalmologist who looked at Kay was still in training and that she should not have discussed her conclusions with me before conferring with her supervisors. In fact there a number of other possible explainations for these hot spots, including persisting effects from the leukemia. On Thursday another ophthalmologist (qualified, I assume) will take a look and give a definitive opinion.
Looking forward, the oncologist could not make any predictions about how longKay is likely to be in hospital. Her total condition, including her weight loss and psychological state, etc, are still a (holistic) cause for concern. And until she has fought off the para-'flu virus, as indicated not least by her continuing need for oxygen, she will be kept in.
The conversation continued to cover a range of other things, too many to relate here. We reached an agreement that this oncologist would from now on be our single-point-of-contact should we have problems and questions and that we will meet with her minimally once per week until such time as things with Kay improve. She will also be available to us at any time, should we feel the need to talk to her. You can see what I mean, I think? There's nothing wrong with the individuals round here. Further we agreed to physiotherapy and psychological support for Kay. Again these are areas where the department excels.
I returned to work following the meeting and then spent the rest of the day wrestling with the business. I finished the business day with a 5.30pm - 6.15 meeting and then raced back to the hospital. Now I'm on parent duty until tomorrow evening. Tomorrow promises to be a busy day with visits from the ophthalmologist, psychologist and physiotherapist.
And now I'm exhausted from all this challenging spelling, so I'm going to tackle a suduko pizzle instead.
Possibly the explaination lay in yesterday's "happenings": in the early afternoon Kay had a visit from the ophthalmologist (a major spelling challenge, requiring a visit to http://www.dictionary.com/). The reason for this visit is that the CMV virus, present in Kay's blood, can cause inflamation in the blood vessels of the retina which can result in scarring and loss of vision. The ophthalmologist (copy & paste is quicker than trying to write this word again) noted a number of "hot spots" on the retinas of Kay's eyes, possibly associated with the CMV virus. I was pretty shaken by this so I asked her what would happen next. She said that Kay would be kept under careful control. I asked her what this meant, weekly checks? She said, on no, it would be daily checks starting from tomorrow. Shocked again, I said that if they're all of a sudden going to start with daily checks, would it not have been better to have started checking Kay earlier? It was then her turn to be surprised. She replied that she would have to consult on the matter, but I could read from her face the real answer.
This was the last straw for me. If you've read the blogs from the last days you will know that we're yet again struggling with poor communication and lack of oversight of Kay's treatment. We're also being starved of information to the extent, again clear from this blog, that I really don't actually know what's going on with Kay, why the medics think we should still be here and what the prognosis is for various things such as the para-'flu virus, the CMV virus, the need for oxygen, Kay's loss of weight, her weakness and her shaking hands, etc, etc. So I went and quietly kicked up a fuss.
The advantage of being known as a parent-with-an-opinion and of being involved with the complaints commission is that when I make a quiet fuss people listen. So within a few hours our erstwhile "red line" doctor appeared to listen to my grievances. I started with the eye issue (my paste buffer has something else in it now) and why Kay hadn't been check earlier. I then recounted our experiences since being at home, the weight loss, the poor condition. I mentioned that we'd now taken over Kay's medication, etc. He was pretty shocked. He thought that things were going so well. He's seen Kay's videos on Youtube and hadn't realized that we're now talking about a different child. In the end he said that he wasn't our "red line" doctor anymore (news to me!) but that he'd take it up with our lead oncologist (the new "red line" doctor?) and arrange a meeting for tomorrow (today). I said that Marion would take over from me and that she would handle the discussion with the oncologist.
Back to today, even though Marion could deal with such a discussion without me - I'd emailed her a list of my questions - it could be that the summons that I'd received this morning was related to the aforesaid meeting. But also it could be something else. Specifically we'd recently heard of a child who, post BMT, got the CMV virus and spent months fighting it only to have her leukemia return. She had recently been sent home, no further treatment possible. Now, we know that there are considerable differences between the cases, but try holding that thought in your mind when you have been summoned to a meeting at short notice...
In the end the meeting was about Kay's current condition, her prognosis and the events of the last few days. Although I express more or less constant criticism of the systems in this hospital, I do have deep respect for the staff. The lead oncologist ran the meeting perfectly and took the time to explain the thinking of recent weeks regarding Kay's situation in terms that Marion and I could follow. Seen in this light her reasoning was completely sound and understandable. What it breaks down to is that Kay's symptoms of the last week could be explained by a sudden increase in the CMV virus or something else. The "something else" being a para-flu virus, which showed positive in the recent tests.
Such symptoms from the CMV virus would be a serious matter, from a para-'flu virus not. It seemed to the oncologist that such a sudden increase caused by the CMV virus didn't make sense, all things considered the level of the CMV virus in Kay's blood is still too low to expect such effects. Therefore she feels that the symptoms are most likely explained by the para-'flu virus. But nothing is certain and they remain cautious about drawing definitive conclusions. I asked about the hot spots on Kay's retinas. She said that the ophthalmologist who looked at Kay was still in training and that she should not have discussed her conclusions with me before conferring with her supervisors. In fact there a number of other possible explainations for these hot spots, including persisting effects from the leukemia. On Thursday another ophthalmologist (qualified, I assume) will take a look and give a definitive opinion.
Looking forward, the oncologist could not make any predictions about how longKay is likely to be in hospital. Her total condition, including her weight loss and psychological state, etc, are still a (holistic) cause for concern. And until she has fought off the para-'flu virus, as indicated not least by her continuing need for oxygen, she will be kept in.
The conversation continued to cover a range of other things, too many to relate here. We reached an agreement that this oncologist would from now on be our single-point-of-contact should we have problems and questions and that we will meet with her minimally once per week until such time as things with Kay improve. She will also be available to us at any time, should we feel the need to talk to her. You can see what I mean, I think? There's nothing wrong with the individuals round here. Further we agreed to physiotherapy and psychological support for Kay. Again these are areas where the department excels.
I returned to work following the meeting and then spent the rest of the day wrestling with the business. I finished the business day with a 5.30pm - 6.15 meeting and then raced back to the hospital. Now I'm on parent duty until tomorrow evening. Tomorrow promises to be a busy day with visits from the ophthalmologist, psychologist and physiotherapist.
And now I'm exhausted from all this challenging spelling, so I'm going to tackle a suduko pizzle instead.
Tuesday 15 June 2010
T+53: Quietly Recovering?
Tuesday morning and Kay is awake and sitting up playing Plants versus Zombies on her iPod Touch. She looks a little better and is a bit more alert than the last days bit I expect that she'll fall asleep again soon. She's complaining about muscle pain which I expect is due to the fact that she's been in bed non-stop for five days. She's not had a fever for a few days now but she still needs a 1.5 litre flow of oxygen to maintain her saturation. This morning her weight was a disappointing 27.8kg, a drop of 100gms from yesterday, even though she's constantly been on a high calorie feed. Mixed signals, I suppose.
She's now trying to help herself more as well. She just decided that she wanted to have a pee sat on a toilet chair next to her bed instead of staying in bed. But it's heart breaking to see how much it costs her to do even this simple thing, she was shaking like an old infirm lady and moving just about as fast.
We have been told that she can go home when she's off the oxygen, but as to when that's likely to be I have no idea. The nurse just turned down the flow a bit to see if her saturation remains stable. We'll have to see where that takes us. But I hope that we'll be able to go home later in the week. But of course I still think that she needs to be putting on weight before we go home.
During the last days we have had a series of problems with the quality of the care tha Kay has been getting. On Saturday evening the duty nurse screwed up with Kay's meds, mixing the wrong one with milk. I only found out because after giving this meds she disappeared for so long that I decided to give the next one myself. When I looked at what remained I noticed the mistake. I called the nurse and she admitted the mistake and then gave her next med. Again she disappeared for so long that - more than 2 hours - that I gave Kay the remaining three meds. Marion has also struggled with similar problems and we have now decided to give Kay her meds ourselves - we're more reliable than the nursing staff. I guess that the problem is that Kay gets around 5-6 different things and they need to be given gradually. This takes a lot of (broken) time and I think that the system/staff here cannot cope with the level of attention required.
For those who don't read Dutch, Marion also had a run-in with the same nurse on Sunday when Kay was sick all over the bed and threw up her tube. Marion called the nurse, who determined that before she could replace the NG tube Kay would need a platelet transfusion. She hurried off to organize the transfusion, leaving Kay sitting in a pool of vomit. Marion was left to clean the bed herself and the nurse eventually returned after a long while to say that the blood ordering system was down and that it would be some hours before the transfusion would be ready. In the end the transfusion took place at 12.30am and so it was very late befor Kay got her medication. Marion was furious with the nurse and with a system that left Kay without food or medication for many hours.
We're also now running our own parallel administration of Kay's medication just to make sure that we know what she's getting and when it's given. AS I give her her meds this morning I'm filling out a form that Marion has created, detailing the sequence of meds that Kay should get. I fill in the time when I give it to her and anything else that needs noting. I think that at the moment I trust this more than the hospital's system. I have to say that Marion has been running the sae administration since Kay came home and it's great. When Kay was admited last week I just gave the doctor here a copy of Marion's list and he used it as a basis for setting up the department's administration of her meds.
Anyway, enough for now. Kay wants to play a game, so I'll do that before she falls asleep again.
She's now trying to help herself more as well. She just decided that she wanted to have a pee sat on a toilet chair next to her bed instead of staying in bed. But it's heart breaking to see how much it costs her to do even this simple thing, she was shaking like an old infirm lady and moving just about as fast.
We have been told that she can go home when she's off the oxygen, but as to when that's likely to be I have no idea. The nurse just turned down the flow a bit to see if her saturation remains stable. We'll have to see where that takes us. But I hope that we'll be able to go home later in the week. But of course I still think that she needs to be putting on weight before we go home.
During the last days we have had a series of problems with the quality of the care tha Kay has been getting. On Saturday evening the duty nurse screwed up with Kay's meds, mixing the wrong one with milk. I only found out because after giving this meds she disappeared for so long that I decided to give the next one myself. When I looked at what remained I noticed the mistake. I called the nurse and she admitted the mistake and then gave her next med. Again she disappeared for so long that - more than 2 hours - that I gave Kay the remaining three meds. Marion has also struggled with similar problems and we have now decided to give Kay her meds ourselves - we're more reliable than the nursing staff. I guess that the problem is that Kay gets around 5-6 different things and they need to be given gradually. This takes a lot of (broken) time and I think that the system/staff here cannot cope with the level of attention required.
For those who don't read Dutch, Marion also had a run-in with the same nurse on Sunday when Kay was sick all over the bed and threw up her tube. Marion called the nurse, who determined that before she could replace the NG tube Kay would need a platelet transfusion. She hurried off to organize the transfusion, leaving Kay sitting in a pool of vomit. Marion was left to clean the bed herself and the nurse eventually returned after a long while to say that the blood ordering system was down and that it would be some hours before the transfusion would be ready. In the end the transfusion took place at 12.30am and so it was very late befor Kay got her medication. Marion was furious with the nurse and with a system that left Kay without food or medication for many hours.
We're also now running our own parallel administration of Kay's medication just to make sure that we know what she's getting and when it's given. AS I give her her meds this morning I'm filling out a form that Marion has created, detailing the sequence of meds that Kay should get. I fill in the time when I give it to her and anything else that needs noting. I think that at the moment I trust this more than the hospital's system. I have to say that Marion has been running the sae administration since Kay came home and it's great. When Kay was admited last week I just gave the doctor here a copy of Marion's list and he used it as a basis for setting up the department's administration of her meds.
Anyway, enough for now. Kay wants to play a game, so I'll do that before she falls asleep again.
Monday 14 June 2010
T+52: Short update
Yesterday we heard that Kay had tested positive for a para-influenza virus, which is like 'flu but milder. This would account for some of her symptoms, but maybe not all. In the afternoon she needed increasingly more oxygen and in the evening started to cough. We'll have to see what today brings. But also we have yet again been struggling with the rubbish care system at the Radbout. I'll return to this subject later, if I get the chance.
Sunday 13 June 2010
T+51: (Morning) Corner Turned?
Could it be that we have started to turn a corner? Kay has not been sick since Friday evening and this morning she had put on 400gm weight. She looks a little better and her meds are going in with only a bit of discomfort in her tummy. She hasn't had a fever in 24 hours, but she still needs to oxygen. Since I returned yesterday afternoon she has done nothing but sleep. I reckon that she's barely been awake for an hour in all that time. But hopefully sleep is a sign of recovery, though I'm not sure how to distinguish the sleep of recovery from the sleep of total exhaustion.
I failed to mentioned that, apart from the need to wait for the results of the various tests & cultures that have been set in motion, the doctors are also waiting for the effect of a higher dose of the anti-CMV virus drug to cut in. Monday last week the dosage that Kay was getting was raised from once per day to twice per per because the level of the CMV virus (measured the week before) had risen. According to the doctors it takes around a week for this increase to show an effect. You can see the problem here: it takes 3-4 days for the results of a CMV virus measurement to be known. It then takes another week before any adjustment to the related medication is likely to have an effect and another 3-4 days to get the results of the next measurement before knowing if the adjustment worked...
We're somewhere in the middle of this cycle, which is another reason why the medics are in no great hurry to come to a conclusion. They think that Kay's symptoms are most likely caused by the CMV virus and therefore they are waiting to see if her condition improves on the increased dosage. Perhaps the improvement that we're seeing today indicates that this softly, softly approach has been/is the right one. One thing to note as well is that the CMV antiviral
If the improvement continues I think we can conclude that 1) the biggest improvement in her nausea came from changing the NG feed, 2) that the next biggest improvement came from mixing the cyclosporine in full cream milk instead of that thin watery diet stuff (don't know the english name) and 3) that the trailing end of the vomiting was caused by the CMV virus, which would then be under control from by the Valanciclovir (that's the drug that is now costing EUR 1150,- per week. I'm awed by that figure!). Still we have to wait and see if the "If" is really the case or not.
The next challenge is to get Kay to start drinking and eating. Yesterday Marion & I did a deal with her: she had to eat five small bites of macaroni. If she didn't then Marion & I got to spend the next night together in the McD house. Kay, being a negotiator by nature, got this down to four bites before agreeing. But in the event she just slept and only woke briefly at the time that I was busy with her medication, which isn't the right time to insist that she eat something. So the idea now is to try to get her to eat at lunchtime today, when she as no meds. We'll see.
I failed to mentioned that, apart from the need to wait for the results of the various tests & cultures that have been set in motion, the doctors are also waiting for the effect of a higher dose of the anti-CMV virus drug to cut in. Monday last week the dosage that Kay was getting was raised from once per day to twice per per because the level of the CMV virus (measured the week before) had risen. According to the doctors it takes around a week for this increase to show an effect. You can see the problem here: it takes 3-4 days for the results of a CMV virus measurement to be known. It then takes another week before any adjustment to the related medication is likely to have an effect and another 3-4 days to get the results of the next measurement before knowing if the adjustment worked...
We're somewhere in the middle of this cycle, which is another reason why the medics are in no great hurry to come to a conclusion. They think that Kay's symptoms are most likely caused by the CMV virus and therefore they are waiting to see if her condition improves on the increased dosage. Perhaps the improvement that we're seeing today indicates that this softly, softly approach has been/is the right one. One thing to note as well is that the CMV antiviral
If the improvement continues I think we can conclude that 1) the biggest improvement in her nausea came from changing the NG feed, 2) that the next biggest improvement came from mixing the cyclosporine in full cream milk instead of that thin watery diet stuff (don't know the english name) and 3) that the trailing end of the vomiting was caused by the CMV virus, which would then be under control from by the Valanciclovir (that's the drug that is now costing EUR 1150,- per week. I'm awed by that figure!). Still we have to wait and see if the "If" is really the case or not.
The next challenge is to get Kay to start drinking and eating. Yesterday Marion & I did a deal with her: she had to eat five small bites of macaroni. If she didn't then Marion & I got to spend the next night together in the McD house. Kay, being a negotiator by nature, got this down to four bites before agreeing. But in the event she just slept and only woke briefly at the time that I was busy with her medication, which isn't the right time to insist that she eat something. So the idea now is to try to get her to eat at lunchtime today, when she as no meds. We'll see.
Saturday 12 June 2010
T+50: Raining Airbuses
There's not been much change in Kay's condition or situation in the last 24 hours. Her temperature is up and down, mostly down fortunately. Her need for oxygen is also up and down. Today she seems a bit more cheerful than yesterday. As yet the medics haven't come to any conclusions about the cause of the problem. A chest x-ray yesterday showed a fine shadow on her lungs, which could be caused by a virus. But it's not clear if it is a virus or which virus or what. Measuring the CMV virus, which we know that she has in her system, takes a couple of days so the results won't be known before Monday. Other tests have so far been negative, but asking for a load of lab tests on a Friday seems to be asking to wait until Monday for any results. So it remains a big puzzle.
However I'm sure that this situation has been, if not caused, certainly exacerbated by weeks of poor nutrition, this in itself caused by all the nausea that Kay has been suffering and the failure of the medics to switch Kay over to a more appropriate feed when she went home. This morning I did a google search on nutrition post bone marrow transplant and from all the medical articles on the subject that came up it does indeed seem to be a very important matter. I still have to finish reading the results of the search but my initial feeling is that, while it seems that poor nutrition does not affect the recovery of the bone marrow, it does have an effect on the patients resilience. Surprise, surprise.
Still, one article that I looked at indicates that the alternative, intravenous feeding, leads to no better results but costs 2.5 times more than NG feeding. So I don't suppose that it's the technique that is at fault but more a question of the execution. Certainly we heard last week that the feed that Kay had when she went home was actually only meant to be used in the weeks immediately after radiotherapy when the stomach & intestinal mucous membranes are damaged or weak. Once they had recovered she should have been switch over to a different and more "broad spectrum" feed. In fact, this only happened last week after Marion & I questioned the feed that she was getting. Since the change Kay has suffered much less nausea, so again a mistake/oversight by the medics has led to Kay unnecessarily suffering, in my opinion. And has contributed to us being here now.
I'm starting to think that maybe I/we should write a parent's guide to managing their child and dealing with the medics during a bone marrow transplant. It is increasingly clear to me that the parents role in all this is not purely pastoral. In fact the parents have an absolutely essential role in ensuring that the medical care of their child is executed diligently. The problem is, as in this case, that parents don't have the knowledge to question what is going on. In other words, Marion & I didn't know that the NG feed that Kay was getting post transplant was special and therefore we couldn't question its applicability. In the end we've ended up questioning it because Kay's condition continued to deteriorate and it suddenly occurred to us that the only common factor was possibly the NG feed.
I also think that Marion & I are not typical parents in these matters. We're both bloody minded individuals who do not necessarily take anything we're told at face value and we both have the intellectual ability to reason things out for ourselves. I suppose that this might not apply to the majority of parents who find themselves in this situation and I then wonder how their children fare. So much of the medical care that Kay receives seems to be based on superficial observation and guess work. For example, the doctor who did Kay's check on Thursday morning pronounced her to be in fine condition, except her temp of 38.3C. Never mind that she'd been losing weight for weeks, was greatly weakened, suffering continued nausea, etc, etc. He said that unless her temperature climbed above 38.5 we shouldn't be concerned.
I didn't trust this doctor from the moment I set eyes on him, not least for the completely biased reason that I don't trust any doctor who smells of cigarette smoke, but also because he didn't know his way around the examination room, couldn't find the forms necessary to order new meds for Kay, need help from me to determine what Kay needed, couldn't find the forms to order blood and in effect was only able to operate because the nursing assistant with him could fill in all the blanks. But she was filling in so many blanks that I was left wondering what the added value of the doctor was. And, if it wasn't that Kay needed blood, this guy would have sent us home. This what I mean by superficial observation. I'm a software guy and although the software world is full of problems, if we operated with this level of care, diligence, observation and logical thinking, it would be raining Airbuses.
I'm now resolved in this case that I'm not going to accept that Kay is fit to go home until she's back above her minimum weight of 28.5kg and that her weight gain is stable. I think that this should have been a primary metric that she should have achieved before being released a few weeks ago. Sending home a child who is losing weight seems in retrospect to be a recipe for disaster. Let's hope that it hasn't come to that this time.
However I'm sure that this situation has been, if not caused, certainly exacerbated by weeks of poor nutrition, this in itself caused by all the nausea that Kay has been suffering and the failure of the medics to switch Kay over to a more appropriate feed when she went home. This morning I did a google search on nutrition post bone marrow transplant and from all the medical articles on the subject that came up it does indeed seem to be a very important matter. I still have to finish reading the results of the search but my initial feeling is that, while it seems that poor nutrition does not affect the recovery of the bone marrow, it does have an effect on the patients resilience. Surprise, surprise.
Still, one article that I looked at indicates that the alternative, intravenous feeding, leads to no better results but costs 2.5 times more than NG feeding. So I don't suppose that it's the technique that is at fault but more a question of the execution. Certainly we heard last week that the feed that Kay had when she went home was actually only meant to be used in the weeks immediately after radiotherapy when the stomach & intestinal mucous membranes are damaged or weak. Once they had recovered she should have been switch over to a different and more "broad spectrum" feed. In fact, this only happened last week after Marion & I questioned the feed that she was getting. Since the change Kay has suffered much less nausea, so again a mistake/oversight by the medics has led to Kay unnecessarily suffering, in my opinion. And has contributed to us being here now.
I'm starting to think that maybe I/we should write a parent's guide to managing their child and dealing with the medics during a bone marrow transplant. It is increasingly clear to me that the parents role in all this is not purely pastoral. In fact the parents have an absolutely essential role in ensuring that the medical care of their child is executed diligently. The problem is, as in this case, that parents don't have the knowledge to question what is going on. In other words, Marion & I didn't know that the NG feed that Kay was getting post transplant was special and therefore we couldn't question its applicability. In the end we've ended up questioning it because Kay's condition continued to deteriorate and it suddenly occurred to us that the only common factor was possibly the NG feed.
I also think that Marion & I are not typical parents in these matters. We're both bloody minded individuals who do not necessarily take anything we're told at face value and we both have the intellectual ability to reason things out for ourselves. I suppose that this might not apply to the majority of parents who find themselves in this situation and I then wonder how their children fare. So much of the medical care that Kay receives seems to be based on superficial observation and guess work. For example, the doctor who did Kay's check on Thursday morning pronounced her to be in fine condition, except her temp of 38.3C. Never mind that she'd been losing weight for weeks, was greatly weakened, suffering continued nausea, etc, etc. He said that unless her temperature climbed above 38.5 we shouldn't be concerned.
I didn't trust this doctor from the moment I set eyes on him, not least for the completely biased reason that I don't trust any doctor who smells of cigarette smoke, but also because he didn't know his way around the examination room, couldn't find the forms necessary to order new meds for Kay, need help from me to determine what Kay needed, couldn't find the forms to order blood and in effect was only able to operate because the nursing assistant with him could fill in all the blanks. But she was filling in so many blanks that I was left wondering what the added value of the doctor was. And, if it wasn't that Kay needed blood, this guy would have sent us home. This what I mean by superficial observation. I'm a software guy and although the software world is full of problems, if we operated with this level of care, diligence, observation and logical thinking, it would be raining Airbuses.
I'm now resolved in this case that I'm not going to accept that Kay is fit to go home until she's back above her minimum weight of 28.5kg and that her weight gain is stable. I think that this should have been a primary metric that she should have achieved before being released a few weeks ago. Sending home a child who is losing weight seems in retrospect to be a recipe for disaster. Let's hope that it hasn't come to that this time.
Friday 11 June 2010
T+49 (Morning): Fever back again
Yesterday evening passed fairly quietly, surprisingly. None of the nausea that we've been struggling with at home. Yet I gave her her meds in the same sequence as at home. Perhaps I took longer than Marion, I allowed an hour between each med. But also she was given intravenous Zofran (anti-sickness) before the meds, which may have made the difference. We'll do it today without the zofran.
Irrespective, unfortunately at 1.30am I was woken by Kay being sick. This is a different thing to the persistent nausea, she was suddenly and without warning sick, same as Wednesday night. So maybe this is a symptom of whatever bug she is suffering from now. Once she had been cleaned up and settled down, she slept through the rest of the night, although the oxygen flow rate had to be turned up because her O2 sats dropped further. This morning she had a fever again, 39.1C, and she's completely miserable and withdrawn. She's also lost more weight, now down to 27.8kg from 28kg.
The decision remains not to start her on antibiotics without first knowing what the problem is, so at the moment she just has to suffer while we wait for the various test results to come and a diagnosis to be reached. I do hope that that is not a long wait, I'm aching to see my little girl smile again.
Irrespective, unfortunately at 1.30am I was woken by Kay being sick. This is a different thing to the persistent nausea, she was suddenly and without warning sick, same as Wednesday night. So maybe this is a symptom of whatever bug she is suffering from now. Once she had been cleaned up and settled down, she slept through the rest of the night, although the oxygen flow rate had to be turned up because her O2 sats dropped further. This morning she had a fever again, 39.1C, and she's completely miserable and withdrawn. She's also lost more weight, now down to 27.8kg from 28kg.
The decision remains not to start her on antibiotics without first knowing what the problem is, so at the moment she just has to suffer while we wait for the various test results to come and a diagnosis to be reached. I do hope that that is not a long wait, I'm aching to see my little girl smile again.
Thursday 10 June 2010
T+48: Back in Hospital
Well, I suppose it had to happen at least once, but it seems likely that Kay has got an infection. Apart from the now usual seemingly-medicine-related evening sickness, she was suddenly and without warning sick around 3am. (Whoopee, another broken night to add to our growing collection). This morning at breakfast Marion measured her temperature as 38.3C. Since I was due to take Kay to Nijmegen for a routine check anyway, we weren't too concerned.
At Nijmegen, the routine check confirmed the raised temperature, but the oncologist (a doctor who I've never seen before) had no worries. The routine blood test showed that Kay's white cell count had again risen to 2.5 and - excellent news - her platelet count now seems to be maintaining itself. It was 25 on Monday and 25 again today, meaning that her bone marrow is now starting to produce platelets. Unsurprisingly Kay's red cell count had dropped to 4.6, thus time for a transfusion. We were given the option of having it today or waiting unil Monday. Since I had time today, I elected for the former option.
Kay was written up for two units of blood which meant essentially that we could expect to be in the Day Care unit until the evening. Thus we were moved into a day care room and after an hour or so the standard checks were repeated. Kay's temperature had increased to 38.9C and her Oxygen saturation was hovering around 90%, which is too low. These symptoms typically indicate an infection, but could also possibly be caused by a low red cell count. But with no other symptoms and no other way to determine the root cause the duty doctor decided to play safe. So a load more blood was taken from Kay for cross matching and for cultures to test for a range of possible infections. She was then started on two broad spectrum antibiotics as a precautionary measure since we were told it will take until tomorrow before the results of the cultures come in. In other words, we could expect to be admitted.
Time passes slowly under these circumstances and, after what felt like a long wait, the first blood arrived. Shortly after we were transferred to the oncology ward, so we're now back in a different room than before but still with the lovely view of the woods. Next checks showed a slight drop in temperature, which was good news. In the late afternoon the second unit of blood was hung up and, as I write this, is still running in. The most recent check showed that Kay's temperature is now down to 37C and the nurse has also been able to reduce the flow of oxygen to a minimal level. So at the moment I'm left wondering whether it's a bacterial infection or just the effects of a low red cell count in a child who is completely exhausted and who has no reserves of any kind. I guess that we'll find out tomorrow.
For now, I'm staying with Kay in the hospital. Fortunately, these days I always carry around spare socks & underwear for just such an occasion. But I'm going to have to beg a toothbrush or intravenus anti-halitosis drugs if I'm supposed to interact with any living being with a sense of smell tomorrow.
The duty oncologist has just dropped in, this time one well known to us and with whom I have good contact. She tells me that they suspect, but only suspect, that Kay's fever could be/have been caused by the CMV virus in her blood. Also she says that they will stop the antibiotics that were started earlier because, in terms of white cell count (one's natural bacterial defence), Kay's blood is in pretty good shape and they don't want to distort this by unnecessarily pumping her full of ABs. So they now plan to watch and wait for the results of the various cultures tomorrow.
I spend a lot of time on this blog talking about Kay's medical condition. I think that you should have got the idea by now that medically Kay is doing very well. But my biggest worry right now is that Kay-the-patient is not doing very well. In fact, as I have been explaining today to anyone who will listen, Kay-the-patient is doing pretty badly. One week after her BMT she was making dance videos. Three weeks after she started with the nausea that she's been struggling with ever since. But four weeks after, when we went home, she was still able to run around the garden for 10 minutes playing hockey or football. Last weekend she could barely hit a hockey ball. Yesterday I had to carry her up the stairs and from her bedroom to the bathroom. Seen like this, it's clear that her general condition continues to deteriorate.
Equally, her mental state reflects this deterioration. She's gone from being cheerful and reasonably happy to being miserable, depressed and, today, scared. She's tired and fed up of being sick all the time, of feeling weak, of needing to sleep all the time and of not being able to do anything. She's said to us literally, "Kay is handicapped" - in the third person. I arranged today for her to talk to the excellent child psychologist that looks after the children here. Hopefully she will be able to strengthen Kay's mental state and resolve.
So, I'm not at all upset that we need to spend a night or two in the hospital. As I explained to the oncologist, I/we need at least some reassurance that this is a "normal" situation at this stage in Kay's recovery and that things will get better.
I'm now beginning her evening medication protocol. It will be interesting to see whether the same events repeat themselves this evening and what the doctors make of the situation.
More tomorrow.
At Nijmegen, the routine check confirmed the raised temperature, but the oncologist (a doctor who I've never seen before) had no worries. The routine blood test showed that Kay's white cell count had again risen to 2.5 and - excellent news - her platelet count now seems to be maintaining itself. It was 25 on Monday and 25 again today, meaning that her bone marrow is now starting to produce platelets. Unsurprisingly Kay's red cell count had dropped to 4.6, thus time for a transfusion. We were given the option of having it today or waiting unil Monday. Since I had time today, I elected for the former option.
Kay was written up for two units of blood which meant essentially that we could expect to be in the Day Care unit until the evening. Thus we were moved into a day care room and after an hour or so the standard checks were repeated. Kay's temperature had increased to 38.9C and her Oxygen saturation was hovering around 90%, which is too low. These symptoms typically indicate an infection, but could also possibly be caused by a low red cell count. But with no other symptoms and no other way to determine the root cause the duty doctor decided to play safe. So a load more blood was taken from Kay for cross matching and for cultures to test for a range of possible infections. She was then started on two broad spectrum antibiotics as a precautionary measure since we were told it will take until tomorrow before the results of the cultures come in. In other words, we could expect to be admitted.
Time passes slowly under these circumstances and, after what felt like a long wait, the first blood arrived. Shortly after we were transferred to the oncology ward, so we're now back in a different room than before but still with the lovely view of the woods. Next checks showed a slight drop in temperature, which was good news. In the late afternoon the second unit of blood was hung up and, as I write this, is still running in. The most recent check showed that Kay's temperature is now down to 37C and the nurse has also been able to reduce the flow of oxygen to a minimal level. So at the moment I'm left wondering whether it's a bacterial infection or just the effects of a low red cell count in a child who is completely exhausted and who has no reserves of any kind. I guess that we'll find out tomorrow.
For now, I'm staying with Kay in the hospital. Fortunately, these days I always carry around spare socks & underwear for just such an occasion. But I'm going to have to beg a toothbrush or intravenus anti-halitosis drugs if I'm supposed to interact with any living being with a sense of smell tomorrow.
The duty oncologist has just dropped in, this time one well known to us and with whom I have good contact. She tells me that they suspect, but only suspect, that Kay's fever could be/have been caused by the CMV virus in her blood. Also she says that they will stop the antibiotics that were started earlier because, in terms of white cell count (one's natural bacterial defence), Kay's blood is in pretty good shape and they don't want to distort this by unnecessarily pumping her full of ABs. So they now plan to watch and wait for the results of the various cultures tomorrow.
I spend a lot of time on this blog talking about Kay's medical condition. I think that you should have got the idea by now that medically Kay is doing very well. But my biggest worry right now is that Kay-the-patient is not doing very well. In fact, as I have been explaining today to anyone who will listen, Kay-the-patient is doing pretty badly. One week after her BMT she was making dance videos. Three weeks after she started with the nausea that she's been struggling with ever since. But four weeks after, when we went home, she was still able to run around the garden for 10 minutes playing hockey or football. Last weekend she could barely hit a hockey ball. Yesterday I had to carry her up the stairs and from her bedroom to the bathroom. Seen like this, it's clear that her general condition continues to deteriorate.
Equally, her mental state reflects this deterioration. She's gone from being cheerful and reasonably happy to being miserable, depressed and, today, scared. She's tired and fed up of being sick all the time, of feeling weak, of needing to sleep all the time and of not being able to do anything. She's said to us literally, "Kay is handicapped" - in the third person. I arranged today for her to talk to the excellent child psychologist that looks after the children here. Hopefully she will be able to strengthen Kay's mental state and resolve.
So, I'm not at all upset that we need to spend a night or two in the hospital. As I explained to the oncologist, I/we need at least some reassurance that this is a "normal" situation at this stage in Kay's recovery and that things will get better.
I'm now beginning her evening medication protocol. It will be interesting to see whether the same events repeat themselves this evening and what the doctors make of the situation.
More tomorrow.
Sunday 6 June 2010
T+44: Bloody Minded Determination
Kay simply amazes me. Although she's somewhat better since the change of NG feed, she remains very weak and tired. However, today was selection training for next season's hockey team formation and Kay was determined to take part. She wants to make sure that she gets put in a team together with her teammates from this season, who are a pretty competitive and skillful bunch. She felt that if she did not take part she'd end up ranked lower than her current teammates.
We told her that this wasn't so, that everyone knows that she's a good player and that no one expected her to take part in the selection training. But we could not change her mind. So we agreed with her that she could go, but that simply showing her face would probably be enough since it would indicate to the selectors that she has the Right Stuff to play at a higher level. We also said that there were rules and that if we felt at any time that she was pushing herself too hard, she would have to accept our instruction to stop.
So this morning she was dressed in her kit and down on the field at 10am, in the blazing heat of a lovely May day. Everyone was surprised and pleased to see her and she received assurances that even if she didn't take part in the selection she would not be overlooked. But still, that wasn't enough for her. She insisted that she be given a place and she took part in the initial briefing. When the girls were told to take a run round the field to warm up, Kay attempted to run too. But I could instantly see that there was no chance at all that she could keep up and after a quarter circuit of the field I called her back. She was absolutely exhausted, pale and could not get her breath. So I sat on the floor with her between my legs and calmed her down and reassured her that it was OK.
The first exercise that the girls were given was simple ball control, knocking the ball backwards and forwards to each other in pairs. Kay decided that she was going to have a go at this too. Since it didn't involve any running, I let her go. She knocked the ball around for a while with her partner but again soon ran out of puff. So we called it quits and she came a sat down with me again to watch the reminder of the training.
I think that she made her point pretty clearly and I'm sure that she won't be overlooked. But we learned today just how much condition she has lost and how much effort it will take to build it up again. But this is a challenge for which I'm ready. I just need to work out a training program with her physio and then we can set to and make sure that she's ready for next season.
What a wonderful child.
We told her that this wasn't so, that everyone knows that she's a good player and that no one expected her to take part in the selection training. But we could not change her mind. So we agreed with her that she could go, but that simply showing her face would probably be enough since it would indicate to the selectors that she has the Right Stuff to play at a higher level. We also said that there were rules and that if we felt at any time that she was pushing herself too hard, she would have to accept our instruction to stop.
So this morning she was dressed in her kit and down on the field at 10am, in the blazing heat of a lovely May day. Everyone was surprised and pleased to see her and she received assurances that even if she didn't take part in the selection she would not be overlooked. But still, that wasn't enough for her. She insisted that she be given a place and she took part in the initial briefing. When the girls were told to take a run round the field to warm up, Kay attempted to run too. But I could instantly see that there was no chance at all that she could keep up and after a quarter circuit of the field I called her back. She was absolutely exhausted, pale and could not get her breath. So I sat on the floor with her between my legs and calmed her down and reassured her that it was OK.
The first exercise that the girls were given was simple ball control, knocking the ball backwards and forwards to each other in pairs. Kay decided that she was going to have a go at this too. Since it didn't involve any running, I let her go. She knocked the ball around for a while with her partner but again soon ran out of puff. So we called it quits and she came a sat down with me again to watch the reminder of the training.
I think that she made her point pretty clearly and I'm sure that she won't be overlooked. But we learned today just how much condition she has lost and how much effort it will take to build it up again. But this is a challenge for which I'm ready. I just need to work out a training program with her physio and then we can set to and make sure that she's ready for next season.
What a wonderful child.
Thursday 3 June 2010
T+41: Eureka Moment?
Wednesday evening was terrible. Poor Kay was so sick, the whole evening. Starting around 6pm she was sick a couple of times through to 9pm. From 9pm through to 11pm she was constantly retching, having more nothing in her stomach to bring up. The only thing that she did bring up was any medicine that Marion tried to give her. This is a big problem since it is essential to keep a stable concentration in her blood of two of the drugs that she needs.
I sat with her constantly from 9-11pm and I felt terrible and increasingly worried at what her body had to cope with. She was shaking from tip to toe, in pain from her stomach and practically begging to go to sleep. Everytime she tried to sleep she was hit by another bout of nausea and retching within minutes. Heartbreaking.
We tried various tactics to try to calm her system, including giving her an anti-sickness drug. But her tummy could not even hold this down. She did however find a posture that allowed her to retch without throwing up the NG tube. This meant that very fortunately it was not necessary to add to her suffering by making her swallow the NG tube again.
At 11pm I decided that enough was enough and I phoned the hospital. Within a few minutes I was called back by the duty oncologist, who also happened to be the head of the transplant group. I explained Kay's situation to her. She felt that the situation was not serious enough to require admitting Kay. She told us to stop her NG feed, water it down by 50% and then run it during the night at a rate that would merely ensure that Kay remained hydrated. Since we had an appointment with her the next day, Thursday, she said that she would review the situation with us then.
Once we change Kay's feed & hydration she rapidly fell asleep, though whether that was just coincidence I can't say. However watering down her feed gave Marion and I an idea: when we considered it, is seemed to us that Kay's nausea began around the time that she became dependent on being fed by tube. We had previously commented on how much the particular feed that Kay had been given stinks - worse than baby food even. We started to wonder whether the problem might, to some extent, be related to the type of feed that she was getting.
Next day Kay was checked thoroughly by the oncologist. Disappointingly she'd lost 0.5kg weight in four days, which essentially means more lost muscle tone. The super news was that her white cell count was up to 2.6, roughly half way back to a normal level. Her red cell count was still slowly dropping, but posed no problem. Her platelet count was 13 and very border line. The oncologist thinks that her system is starting to produce platelets and was initially reluctant to give Kay a transfusion. But when she considered the matter further she decided that the chance of Kay having to swallow the NG tube again was pretty high and a low platelet count would increase the risk of a consequent hemorrage. So a transfusion was ordered.
I put our idea about the NG feed to her and she thought that we could be right. So she arranged for a dietician to call Marion and discuss the subject. The result was that they agreed to change Kay onto a type of feed that she'd had last year and that had worked just fine. In the meantime we have the idea that Kay's nausea has decreased dramatically, although not gone away. The remaining nausea seems to be directly related to her medication and we feel that it's a bit easier to control.
As a result of all this, Kay brightened up almost immediately. As we left the hospital she suddenly said that she was hungry (!!!) and that she fancied an ice cream. I didn't need to hear this twice and so she chose a "Magnum" from the hospital shop and ate three quarters of it in the back of the car on the way home. When we got home we even bashed a hockey ball around in the garden for a few minutes before tiredness caught up with her.
She really has lost a huge amount of muscle tone and is very weakened from everything she's been through. But we're now hoping that we have found a way to reduce the nausea and that we can start to think about rebuilding her strength.
I sat with her constantly from 9-11pm and I felt terrible and increasingly worried at what her body had to cope with. She was shaking from tip to toe, in pain from her stomach and practically begging to go to sleep. Everytime she tried to sleep she was hit by another bout of nausea and retching within minutes. Heartbreaking.
We tried various tactics to try to calm her system, including giving her an anti-sickness drug. But her tummy could not even hold this down. She did however find a posture that allowed her to retch without throwing up the NG tube. This meant that very fortunately it was not necessary to add to her suffering by making her swallow the NG tube again.
At 11pm I decided that enough was enough and I phoned the hospital. Within a few minutes I was called back by the duty oncologist, who also happened to be the head of the transplant group. I explained Kay's situation to her. She felt that the situation was not serious enough to require admitting Kay. She told us to stop her NG feed, water it down by 50% and then run it during the night at a rate that would merely ensure that Kay remained hydrated. Since we had an appointment with her the next day, Thursday, she said that she would review the situation with us then.
Once we change Kay's feed & hydration she rapidly fell asleep, though whether that was just coincidence I can't say. However watering down her feed gave Marion and I an idea: when we considered it, is seemed to us that Kay's nausea began around the time that she became dependent on being fed by tube. We had previously commented on how much the particular feed that Kay had been given stinks - worse than baby food even. We started to wonder whether the problem might, to some extent, be related to the type of feed that she was getting.
Next day Kay was checked thoroughly by the oncologist. Disappointingly she'd lost 0.5kg weight in four days, which essentially means more lost muscle tone. The super news was that her white cell count was up to 2.6, roughly half way back to a normal level. Her red cell count was still slowly dropping, but posed no problem. Her platelet count was 13 and very border line. The oncologist thinks that her system is starting to produce platelets and was initially reluctant to give Kay a transfusion. But when she considered the matter further she decided that the chance of Kay having to swallow the NG tube again was pretty high and a low platelet count would increase the risk of a consequent hemorrage. So a transfusion was ordered.
I put our idea about the NG feed to her and she thought that we could be right. So she arranged for a dietician to call Marion and discuss the subject. The result was that they agreed to change Kay onto a type of feed that she'd had last year and that had worked just fine. In the meantime we have the idea that Kay's nausea has decreased dramatically, although not gone away. The remaining nausea seems to be directly related to her medication and we feel that it's a bit easier to control.
As a result of all this, Kay brightened up almost immediately. As we left the hospital she suddenly said that she was hungry (!!!) and that she fancied an ice cream. I didn't need to hear this twice and so she chose a "Magnum" from the hospital shop and ate three quarters of it in the back of the car on the way home. When we got home we even bashed a hockey ball around in the garden for a few minutes before tiredness caught up with her.
She really has lost a huge amount of muscle tone and is very weakened from everything she's been through. But we're now hoping that we have found a way to reduce the nausea and that we can start to think about rebuilding her strength.
Wednesday 2 June 2010
T+33 - T+39: Sick, Sick, Sick
Firstly my apologies for not having written in the last week. I've been in the UK for a few days and then away for a two day business meeting. All in all it has been a very busy week. Secondly I want to say that I'm totally in awe of Marion. She seems to be completely on top of Kay's situation and coping extremely well under very difficult circumstances. She has a positive attitude, she's calm and gentle with Kay and generally stable and just plain nice. Unlike me she's not flustered by Kay's sickness and not worried by her state. She doesn't seem as stressed as I feel, though perhaps she's just dealing with it better than I am. Whatever, she gets a 10/10 from me.
In general the doctors are very pleased with Kay's progress. Her blood levels continue to improve, slowly. I'll put the figures into a graph in the next days so that you can get an idea of her progress. She's not suffering from anything but continued nausea. Her medication seems to be working. She's now getting an anti-viral drug to combat the CMV virus in her blood, in addition to the cocktail of other stuff. An interesting point to note is the cost of the various medicines, which is generally printed on the prescription label on the box. The Kepra that she gets as protection against further epileptic attacks costs EUR 250,- per bottle. A bottle lasts a couple of months. The cyclosporine anti-rejection medication costs EUR 500,- per bottle. Each bottle lasts about 10 days. The winner of this little competition is the new anti-viral, which costs EUR 1150,- per bottle. Again, a bottle lasts around 10 days. In total I guess that Kay is getting around EUR 1500,- per week in medication. Some day in the far future I'd be interested to know what this whole process has cost.
So, medically things are going well. However on the care front, to my mind, things are not going so well. Kay is still suffering from bouts of intense nausea. For instance, last Thursday she was sick four times, each time regurgitating the NG tube. Not a single day has passed without the NG tube having to be refitted. This seems to be taking a toll on her stomach, which has become painful and very sensitive. Kay herself is worn out by all the sickness. She is miserable, tired and has no energy. The footballing, hockey girl from two weeks ago is nowhere in sight. The nausea and pain are scaring her. They're scaring me for that matter, but Marion has discussed it all with the doctors and she says that it's all part and parcel of the bone marrow transplant experience. Intense nausea six to seven weeks after the treatment is 'normal'.
Funny, we have something of a role reversal here. In the past I've been the calm and unworried parent and Marion the worrier. At the moment it's the other way round. I suppose that this comes in part from the fact that I've been out of it for essentially 5 days. In this time the immediate experience has faded slightly and, stepping back into our little world, what I see is a very sick, miserable child who seems worse than when I went away. She looks like a stick figure from a Lowery painting. Also Marion has done all the hospital trips since we have been home and therefore I'm out of touch with the medical situation. Tomorrow it's my turn to take Kay to Nijmegen so I'll have the chance to catch up with the medical perspective.
But irrespective, the care side is hard. Kay is almost always nauseous during the late evening. So far this has meant that Marion - and me, when I've been home - has not been getting to sleep much before the early hours. I'm suffering from this rather badly, but for some amazing reason, Marion seems to be doing well on so few hours of rest. Equally, the cleaning consequential to all this sickness is no passing matter either. Bedding, duvets and clothes are regularly going through the wash. Mattresses have been turned and carpets cleaned. But even so, the carpet in our bedroom stinks of sick and Marion happily remarked that the one good thing about this was that it would give her an excuse to replace the carpets in the future.
In theory we are entitled to support from social services. Marion has been looking into this and has got as far as being allocated a budget that she can spend putting together the sort of services that we need. This is a good system since it is flexible and ensure some sort of competition between the various agencies for the budget that we have been awarded. Marion is still looking into what is available and how the system works.
Even though (and perhaps, in spite of the fact that) I have been away for some days it seems to me that in some respects this is the hardest part of the BMT journey so far. We're largely on our own with a practically sick child, having to make judgement calls about whether she is fit enough to be at home and having to deal with all the care that comes from being at home. Although the benefits of being at home are indeed many and we wouldn't wish to be anywhere else, there's also a cost in terms of additional work and worry. Having said all this, I'm currently sat in the garden on a warm sunny day, Kay is lying on the sofa watching TV and all is quiet. So maybe the lesson is (again): live and enjoy your life from minute to minute. Actually there are generally far more minutes that are either neutral or enjoyable than minutes that are difficult and worrying. We just tend to weigh the worrying minutes more than then neutral/enjoyable ones, I suppose.
In general the doctors are very pleased with Kay's progress. Her blood levels continue to improve, slowly. I'll put the figures into a graph in the next days so that you can get an idea of her progress. She's not suffering from anything but continued nausea. Her medication seems to be working. She's now getting an anti-viral drug to combat the CMV virus in her blood, in addition to the cocktail of other stuff. An interesting point to note is the cost of the various medicines, which is generally printed on the prescription label on the box. The Kepra that she gets as protection against further epileptic attacks costs EUR 250,- per bottle. A bottle lasts a couple of months. The cyclosporine anti-rejection medication costs EUR 500,- per bottle. Each bottle lasts about 10 days. The winner of this little competition is the new anti-viral, which costs EUR 1150,- per bottle. Again, a bottle lasts around 10 days. In total I guess that Kay is getting around EUR 1500,- per week in medication. Some day in the far future I'd be interested to know what this whole process has cost.
So, medically things are going well. However on the care front, to my mind, things are not going so well. Kay is still suffering from bouts of intense nausea. For instance, last Thursday she was sick four times, each time regurgitating the NG tube. Not a single day has passed without the NG tube having to be refitted. This seems to be taking a toll on her stomach, which has become painful and very sensitive. Kay herself is worn out by all the sickness. She is miserable, tired and has no energy. The footballing, hockey girl from two weeks ago is nowhere in sight. The nausea and pain are scaring her. They're scaring me for that matter, but Marion has discussed it all with the doctors and she says that it's all part and parcel of the bone marrow transplant experience. Intense nausea six to seven weeks after the treatment is 'normal'.
Funny, we have something of a role reversal here. In the past I've been the calm and unworried parent and Marion the worrier. At the moment it's the other way round. I suppose that this comes in part from the fact that I've been out of it for essentially 5 days. In this time the immediate experience has faded slightly and, stepping back into our little world, what I see is a very sick, miserable child who seems worse than when I went away. She looks like a stick figure from a Lowery painting. Also Marion has done all the hospital trips since we have been home and therefore I'm out of touch with the medical situation. Tomorrow it's my turn to take Kay to Nijmegen so I'll have the chance to catch up with the medical perspective.
But irrespective, the care side is hard. Kay is almost always nauseous during the late evening. So far this has meant that Marion - and me, when I've been home - has not been getting to sleep much before the early hours. I'm suffering from this rather badly, but for some amazing reason, Marion seems to be doing well on so few hours of rest. Equally, the cleaning consequential to all this sickness is no passing matter either. Bedding, duvets and clothes are regularly going through the wash. Mattresses have been turned and carpets cleaned. But even so, the carpet in our bedroom stinks of sick and Marion happily remarked that the one good thing about this was that it would give her an excuse to replace the carpets in the future.
In theory we are entitled to support from social services. Marion has been looking into this and has got as far as being allocated a budget that she can spend putting together the sort of services that we need. This is a good system since it is flexible and ensure some sort of competition between the various agencies for the budget that we have been awarded. Marion is still looking into what is available and how the system works.
Even though (and perhaps, in spite of the fact that) I have been away for some days it seems to me that in some respects this is the hardest part of the BMT journey so far. We're largely on our own with a practically sick child, having to make judgement calls about whether she is fit enough to be at home and having to deal with all the care that comes from being at home. Although the benefits of being at home are indeed many and we wouldn't wish to be anywhere else, there's also a cost in terms of additional work and worry. Having said all this, I'm currently sat in the garden on a warm sunny day, Kay is lying on the sofa watching TV and all is quiet. So maybe the lesson is (again): live and enjoy your life from minute to minute. Actually there are generally far more minutes that are either neutral or enjoyable than minutes that are difficult and worrying. We just tend to weigh the worrying minutes more than then neutral/enjoyable ones, I suppose.
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