T+7: Facts and Figures

For those of you who like to know the facts and figures of how Kay is doing I have put together the following data on her blood levels. Firstly, her red cell count:

The absolute minimum that her red cell count is allowed to reach before she needs a transfusion is 4, but the situation is reviewed from the moment that she reaches 4.8. You can see that just before she got the transplant on the 23rd, she had almost reached the stage that she needed a transfusion. However there were a lot of red cells in the transplant transfusion so her red cell count has been fine for the last week. The following graph shows her white cell count.

Her white cell count is pretty key since it provides a picture of the state of her immune system. Note that the scale is exponential. When she was admitted her count was a relatively normal 4.6. As the chemo and radiotherapy progressed it has dropped to an off-the-scale level of 0.1, meaning that it is too low to be accurately or meaningfully measured. In principle the leucocyte count has to be above 1 before Kay will allowed out of isolation. Neutrocytes are white cells responsible for protection against bacteria and are a component of the leucocyte count but are sometimes measured separately. Recent blood tests have measured the Neutrocyte count. To be released from isolation it has to be above 0.5. In the previous two blood tests it has been around 0.06, but today is was not measureable, meaning that Kay's immune system is still heading downhill.

Finally data for Kay's platelet count, which determines the clotting factor of her blood. Again this is presented on an exponential scale.

Kay's normal level runs around 300, which is what is was on admission. The minimum acceptable level is 20. As the chemo did its work you can see from the graph that the level has been hovering around 20. As a result Kay has been given a number of platelet transfusions in the last week. Unfortunately platelets don't last very long in the body, around 2 days. Although she had a transfusion on Tuesday, her count today was below 10, again indicating that her system is still on a downhill slope. She has been given another transfusion today and I expect that that will be a regular thing during the coming days.

Another indication that all the treatments that she has had are still affecting her system is that she has started to lose her hair again (shame!). At the moment it's a small amount but it is a clear reminder that we have not yet reached the lowest point in this process. We will continue to watch her levels closely during the coming days for the moment that they begin to pick up. That will be a huge moment as it will indicate that the transplanted stems cells have started to do their thing.

Otherwise Kay is doing well. She looks good, not least because her red cell count is good. She's still tired, but less so than at the beginning of the week. She is still not eating enough so the nurses are being more pushy with the NG feed, increasing the amount that she's getting from 500ml to 700ml per day.

Part of the reason that I'm writing this is to remind myself that, in spite of the fact that Kay seems so normal on the outside, she is still very much a patient with an extremely fragile system.

T+6: Busy Day

Another good day consisting of:

1) Balloon Badminton with Mama

2) Balloon Badminton with the Physio

3) Isolation Hockey with the Physio

4) A visit from and a long chat with Aunty Charlotte

5) Handcraft work making a jewelery box with Agmar

6) Visit from the football players of the local 1st division team NEC

7) House with Daddy

8) A load of farming on the computer

9) Chat with Nattie and Mama on Skype (Mama is at home tonight)

10) A long evening and late night watching "I love Holland"

11) Eaten reasonably, drank fairly well

The only thing missing was indoor hospital horse riding and a few hours sewing mailbags.

Hopefully now a long sleep. Phew!

T+5: Boyfriend has a Cold

The title says it all. Big disappointment. Isolation rules cursed to hell. All those bed pans that now have to be emptied by the nurses. What a waste. But maybe he'll be better tomorrow? Or, since the school holidays start now, some time in the next two weeks?

T+5: The Boyfriend Visits

I'd better write this down before I forget: today is the day that Kay's "vriendje" (ie boyfriend) is coming to visit. She has pointed this out to everyone who has entered her room this morning. She has been selecting her clothes and asking me for advice about which shoes to wear. She had a discussion with Leonie (duty nurse) about what knickers to put on, which left me with some fairly deep reservations.

Leonie suggested that she decouple Kay before the visit so that Kay could shower and sort out her hair. Also various different smells and hair finishes were proposed. But Kay was having none of it. "Just how much trouble do you think I'm going to go to?" was her reply to Leonie as she brushed off the idea of putting lotion in her hair. "He can take me as he finds me". Ha! I wonder how much longer that will last.

Still, in my role as father, I have to put this young fellow to the test. So I'm planning to queue up Kay's bed pans and get him to empty them during the visit. We'll soon find out just how far his attraction to Kay goes...

Ah, the joys of being the father of girls. I have lots of "Cosby" plans for putting off young men, including some variations on the "La Cage aux Folles" theme. Can't wait... :-)

T+4: Bohemian Normality

Marion & I went out for dinner last night! How daring of us, don't you think? There was a kind of naughty thrill about it, like sneaking out of class. We had an excellent meal, we chatted and I'm sure to most observers we must have appeared to be just like normal people, nonchalantly enjoying an evening out. Amazing! In fact probably the only way to tell that we're actually from Planet Leukemia would have been to listen in to our conversation, which by now is about topics and is conducted in a language that (fortuately) most people don't understand. When we got in a taxi to go back to the hospital it felt wrong to be sitting in a comfortable car, like being chauffered in a limo to an appointment with the Electric Chair. It should have been a Black Maria and the SGP (= Special Patrol Group, a UK police unit that got disbanded in the 80's for being too violent) and I should have "resisted arrest". But no, we returned to our world voluntarily and not without a small sigh of relief: the real world feels rather too unreal and not a little intimidating at the moment.

As you can conclude, Kay had another good day yesterday. Monday's decision not to give her platelets was revised because this morning she had elevated blood pressure. The combination of extremely low clotting factor and high BP is seen as a risk not worth taking. Fortunately. Kay skipped the webchair this morning because there were too many things going on around her and she felt overloaded. But in the afternoon she carried on her division lesson with Juff Jonja and then fell asleep before the physiotherapist arrived, thus missing her physio session.

I should mention that the physio sessions are great and (can) make use of modern technology, like the Wii and the Wii's balance board. But simpler things are also done. Last time the physio suspended a balloon on a tether from the ceiling and played balloon badminton with Kay. Brilliant! (I wanted to join in!).

We had to wake Kay up in the early evening to eat and shower, etc. This is always a dangerous thing to do with Kay. When she wakes up on her own she's mostly bright and shiny, but wake her up before she's ready and one risks losing one's arm above the wrist. Marion was the one who woke her up and was promptly savaged to the extent that she had to leave the room before Kay would consider calming down. Kay retreated to an improvised lair behind the (folded up) parent bed in the corner of the room, where she continued to growl at Laura, who was trying to calm her down.

I guess that the reason that children have two parents is that when one is persona non grata the other still has a chance to rescue the situation and so I managed to coax her out of her lair, gave her a cuddle and a talking too: "What are you looking forward to eating this evening? Olives? And who was it who went to the trouble of getting olives specially for you? Yeh, Mama. Think about that for a minute...". (I didn't reckon that the situation was quite bad enough to use the Mickey card).

Surprisingly Kay didn't protest about our plans to eat out. She just required that we set her up with a bunch of House DVDs and when we got back around 10.30 she was still watching House: "Ha Daddy, you have to catch up with three episodes!". So I have my homework to do today. There are worse things.

Division lesson with Juff Jonja

Balloon Badminton

T+3: Bored (Fortunately)

Not much happening today. Kay was in good form, took part in school via the webchair this morning, had an hour doing fractions with Juff Jonja this afternoon. We left her on her own this morning for a while. Marion did some walking and I wanted a shower and change of clothes after a night on duty.

But during the couple of hours I was away Kay got a lot of visitors and became quite hassled because none of them introduced themselves or said what they were there for. So she asked the duty nurse to get the child psychologist for her. Later, when the psychologist turned up (I was back by then), she complained that everyone was bothering her and that she didn't know what to do about it.

The psychologist was pretty impressed that Kay had the presence of mind to ask for her and suggested that Kay make up some "room rules" and stick them on the door for everyone to read. The primary rules will be that everyone who comes in has to introduce themselves to Kay and explain what they have come to do. She discussed this and one or two other things with Kay and left Kay feeling much happier and more in control for her surroundings. I have to say that I was pretty impressed both with the professionalism of the psychologist and with how Kay handled herself.

Kay's platelet count was again very low today (17) in spite of the transfusion that she had. This means she runs the risk of bleeds should she hurt herself, etc. But because she seems otherwise quite well the doctors decided to skip another transfusion for today. Her red cell count was still quite reasonable, but her white cell count was on the floor, which is to be expected. The next blood test will be on Wednesday.

We have to hope that the remaining days and weeks are quite so boring. I suppose that they won't be, so I have being trying to enjoy the quiet moments.

T+2: Tired Girl

Kay is pretty tired most of the time and is sleeping a lot. A good thing under the circumstances. She feel sleep around 11am and woke up when I arrived at 2.30pm. Since then she has been doing this and that, we managed to get in four episode of "House" this evening by way of passing the time. Kay is very keen on House so I have bought series 1-5 on DVD and we're working our way through it from the beginning.

Yesterday her platelet count was extremely low, 14 when it should be in the hundreds. So she was given a transfusion which should provide cover for a few days. Because of the transplant transfusion her red cell count was 7.4, which is nice and high, so no worries there. But we can expect that she will need both platelet and red cell transfusions regularly in the coming weeks.

In herself Kay is in pretty good spirits. She finds being tired all the time somewhat annoying but we keep pointing out to her that her body needs a lot of rest to receover from what it has been through in recent weeks & months. The last days she has not eaten very much and so has been on an NG feed. Today she managed to eat some chips in the afternoon and some spagetti in the evening. She wanted to come off the NG feed so that her hunger would return and she could try to eat normally. But the staff think that she can better do that gradually over a couple of days. They don't want her to lose any more weight.

Laura, our nurse this evening, just came in, looked over my shoulder and commented that I can write an awful lot about essentially nothing. So I should take that as a hint to shut up.  

T=0: Reflections

If I had to find a single word to describe yesterday it would be "understated". Considering the immensity of the implications of receiving donated stem cells the day passed quietly and without any great fuss and bother. Since the radiotherapy Kay has been pretty tired and yesterday was no exception. She slept for a while in the morning and then again later in the afternoon. She spent the rest of the time playing with Nattie, etc.

The transplant was scheduled to begin around 1pm, but in the event it was around 1.30 before it kicked off. The transplant coordinator arrived with a very full transfusion pack containing at least 500ml of processed blood and stem cells. One interesting point is that Kay and the donor have the same blood group, so it was possible to transfuse Kay with the donor's blood without any further complexities. Also, Kay's blood group will not change as a result of the transplant. As the transfusion started, we gave Lauren a call so that we could have a bit of a family moment to mark the event.

In theory the transfusion shoud have taken about an hour, but the volume and density of the blood made it quite thick. To prevent potential damage to the cells the transfusion is normally run in using a gravity feed, ie no pump. Because of the thickness, the nurse ended getting a taller stand and then, when that didn't help, putting the stand on a table. The blood pack ended up hovering around ceiling height but still the flow rate was low, it took around 3 hours or so before the transfusion finished. During that time the lead nurse or the transplant coordinator stood around holding the stand on the table. I have to say that I was pretty nervous about the blood pack falling or something and therefore did not offer to take a turn holding the stand!

Due to the volume of fluid transfused, Kay's blood pressure rose somewhat and her heart rate dropped. But this was considered to be no big deal. Kay ended up sleeping through the late afternoon and early evening. She appeared to be fairly unaffected by the moment, which I suppose could be a good thing. I talked to her at one point and said that I hoped that the stem cells would now quickly find their way into her bones and start doing their thing as soon as possible. Kay nodded in agreement and but was about as reflective as things got.

For a day with so many emotional and philosophical implications there was surprisingly little said. I think that we're all in some state of emotional limbo where we have ceased to feel strong emotions or react to (the philosophy of) a situation. For my part, I was (and am) so tired that I felt like I was underwater all day. Everything seemed to be happening as if in a dream, in some kind of slow motion.

The problem now is that Kay appears, superficially, to be in pretty good shape, just a bit tired. It's difficult to imagine that we're a long way from being out of the woods yet. My mind keeps wandering towards the idea of going back to work on the basis that there's not much happening here. But every time this thought crosses my mind I have to remind myself that we have a child with no immune system who has yet to show the full effects of the radiotherapy. It is pretty much certain that she will get infections from one source or another and foolish to think that we'll continue the next few weeks so quietly.

I was about to write that we should consider ourselves fortunate that things have proceded so quietly but a) given the events of the last six months this is a patently ridiculous thought and b) it's a demonstration of the minds incredible ability blank out the memories of pain or c) I'm too tired to maintain any perspective. Still, let's hope that the next weeks proceed in such a routine way that I'll become bored and want to be back at work as soon as possible. But I think that for the time being I'll continue with a conservative approach. In the circumstances and with our history, you never know...

T=0: Kay gets her transplant...

Video at: http://www.youtube.com/watch?v=lOmrTCrFg1g

The transplant transfusion package.

Waiting for the transfusion to finish

Kay and Nattie play a game

while the transfusion is started

T-1: Big Day Tomorrow

Its seems that we're set for the transplant tomorrow, in theory between 12:00 and 2:00pm. What a long long road we seem to have travelled to get here and yet, we still have a long way to go. I have a problem getting this into my head because Kay seems to be in such good condition. But by way of illustration, Marion tells me that the child in the room next door to Kay returned home from her transplant on New Year's Eve. But now she's been back for some weeks with a difficult viral infection.

Still, tomorrow will be a turning point from treatment to recovery. And we're all looking forward to that.

Kay has been good today. She got over the nausea from the morning and has been pretty active all day. Natasha has been here all day and the two have been hanging out together. The damned Webchair software is not working properly which means that Kay is struggling to hook into her class for lessons. I'm trying to find what the problem is c.q. get some help, but to no avail so far. The Webchair support guy said, "it works on a Mac and we know that there are problems with the Windows version". Not much good since the hospitals PC's are all Windows. Also its something of a perverse attitude from the Webchair people. But I digress...

I keep finding myself thinking about the donor and what a wonderful gift they have given Kay, essentially the gift of life. No words can possibly express how grateful I/we are to this person. I hope that they quickly recover from their procedure and live a blessed life.

T-1: Countdown resumes

Viviane, the transplant coordinator, just stuck her head around the door to say that she received word that everything is running according to schedule with the transport of the donor cells. They will arrive in Schipol this morning and at the Lab this afternoon. According to plan they will be processed tomorrow and Kay will get the transplant tomorrow afternoon. Phew! to say the very least.

Early this morning I was woken (from a facsimile of sleep) by the sound of Kay violently throwing up, the poor thing. I was pretty surprised by this because she'd been fast asleep all night, she's getting anti-nausea drugs and there didn't seem to be an obvious trigger. When the nurse arrived he mentioned that she had just been started on Ciclosporin, an anti-rejection drug, in preparation for the transplant. However he found Kay's reaction a little odd. After futher checks it seemed as though her symptoms were limited to vomiting.

The duty doctor was consulted and the message came back that it couldn't be an allergic reaction because this was the first time that she'd been given this drug. So the doctor concluded that it was "coincidence". Right, like I believe that. I mean, really?. So I just looked up Ciclosporin on the net and guess what? Vomiting is one of the many side effects of this drug. I really wonder about these doctors...

Kay is now sleeping. But it's getting time for her routine medication and, unfortunately, she threw up her NG tube, which will now have to be refitted (read: swallowed). That's going to please her no end.

The good news is that she has something to look forward to, today. Natasha is here for a couple of days so that she can be with Kay during the transplant. I wish Lauren could be here as well for that moment.

Natasha: A Ray of Sunshine

T-2: Countdown on hold - Rest Day

Today was an (extra) rest day. That includes a rest of writing blog entries!

All I'm going to say is that Kay has been doing well today.

Thanks for all your comments, it's great to know that we have a readership!

T-2: Radiotherapy

This was the day that worries/d me the most: sitting Kay in front of a Gamma Ray generator for +/- 20 mins. It also worried Kay greatly. We discovered in the weekend that she'd done some of her own research on the subject at school and judging by what she thought was going to happen she'd been reading about the history of Hiroshima. The very excellent child care staff took care of the problem and carefully explained to Kay what was going to happen and what she could expect. But still...

The first step in the process took place this morning when Kay was taken for an Echo to localize her kidneys. I had understood that the kidneys were to be given some shielding from the radiotherapy. But when we got there, the doctor told us that his instructions were only to localize one kidney. I thought that this was pretty strange and bearing in mind by (lack of) faith in the system I insisted that our nurse verify the instructions. An hour later she duly came back and explained to me that normally there should be no damage to the kidneys, but in the event that damage did occur they wanted to be sure that one of them would be working. Hmm... I found that a rather callous but rational piece of thinking. But then the nature of the whole process is callous and rational.

Mid-afternoon Kay was expected in the Radiology department. As with the trip to Radiology for the Echo, she was transported with a mask covering her face and largely under a bedsheet. When we arrived she was moved onto a special semi-reclined chair and positioned very carefully for the radiotherapy. Lead shielding was positioned strategically to protect her eyes and reduce the dosage applied to her heart, lungs and lower legs. A test film was then made to ensure that the shielding was correctly positioned and then the treatment began.

Kay was brilliant. Actually I don't have the words to described how strong, courageous and brave she was. I had tears in my eyes and was, frankly, scared stiff by the whole process. But Kay sat there and took the whole thing like, well, a Clint Eastwood character. I am so astronomically proud of her.

To give her something to occupy her the child nurse had provided the audio book version of Harry Potter and the Half Blood Prince. So Kay sat and listened to the opening chapter(s) while she was stuck in the chair. But later complained that she didn't understand what was going on because it was in Dutch and she only knew the English version and all the characters had different names. So much for that, then.

The radiotherapy procedure was first to "toast" one side of her and then turn her through 180 degrees and "toast" the other side. The first toasting took around 10 mins or so with a short break to check some radiation monitors that had been placed on her body. Then her chair was turned and the whole process of aligning the shielding was performed again. Then the second toasting took place, also around 10 minutes. Kay developed a headache about half way through but apart from that initially showed no other symptoms.

With the procedure complete, I lifted Kay back onto her bed and we packaged her up and took her back to her room. She then started developing a mild reaction, a light feverish feeling, worsing headache and some nausea. However she had been liberally dosed with Sofran beforehand so the nausea was well controlled.

After a couple of hours she had recovered enough to be quite chatty and just before I returned to the McD house for my night of rest, she was chatting with Natasha on Skype. However the full effects of the radiotherapy will not show themselves for some days, so we're not out of the woods yet. Kay's immue system is now totally erased and she is susceptible to any bug that feels like lifting a finger agianst her. But we have completed the induction therapy and hopefully Kay has had the last chemo/radiotherapy she will ever need.

The countdown goes on hold tomorrow. The transport problems have been sorted out and the donors stem cells should arrive in Nijmegen on Thursday afternoon. Kay will get them late on Friday. So we should now have a couple of days of rest before the big moment, assuming the Icelanders don't turn their Volcano up.

Radiotherapy complete, packaged up for the trip back to her room

T-2: Operation Rescue Mickey

Mickey is missing! After turning Kay's room upside down, Mickey could not be found. The only explanation is that he got caught up in the laundry change and as of late yesterday was on the way to the laundry department. Kay went to bed last night missing Mickey like crazy but put on very brave show. This is the first time that I can remember her sleeping without Mickey. She slept with Eeyore instead (just like Mickey, another winning present from Uncle Richard).

But in the meantime Kay's crazy Mama started turning the hospital upside down: Operation Rescue Mickey was launched!

At 6am this morning Mama was at the hospitals laundry department, rummaging through piles of laundry bags and (I'm sure) hassling everyone around her. But with the help of the laundry people she discovered that yesterday's laundry had already been collected and was on the way to an external cleaning company. So Mama persuaded the hospital people contact the external company both by FAX and by phone to ask them if they would be good enough to search their incoming deliveries for Mickey. Can you imagine? Asking a company to dig through the enormous pile of dirty laundry that they get from a hospital the size of Nijmegen. Unsurprisingly there was little response.

So Mama persuaded the hospital to let her talk directly to the cleaning company. Mama told Kay's story, said that she was due for Radiotherapy today and that Kay would be sorely missed. The result: all incoming laundry was searched for Mickey and within 30 minutes he had been found!

However, the laundry company is 125km from Nijmegen, so Mama promptly jumped in the car and drove all that way. When she got there, Mickey was waiting. But so was the staff of the laundry company who told Mama that they were rather moved by Kay's whole story and were pleased to have been of help. Mama then drove back to Nijmegen. But Mickey had just spent a night rolling around in other people dirty sheets and could not be allowed back into Kay's room without first being washed. So Mama put Mickey through the washing and drying machines at the McD house before she could bring him to Kay. And here is the result:

Mama is definitely, completely, totally: The Hero of the Day.

Hoorah for Mama!

(And Kay, remember that next time that you're shouting at her!)

T-3: The Volcano and the Donor

It suddenly occurred to me yesterday to wonder where the donor lives and how the donor's bone marrow will be transported. By air? Last night I put this question to our duty nurse, whose eyebrows rose somewhat when I pointed out the potential problem. He contacted the duty doctor who then came and reassured me that "everything will be alright". Under the circumstance I'm sure that you will understand when I say that "Ha!" was the very least of my responses to that piece of patronization. So this morning I asked to talk to the transplant coordinator directly.

Conversely to what Marion said previously, I learnt that from the coordinator that the donor does not come to Nijmegen, they are operated on locally and only the bone marrow is transported. She was also able to tell me that the donor is in the USA and that, yes, transporting the bone marrow is a problem at the moment. Also, and less signficantly, because of the time difference Kay will not actually receive the transplant until Friday, so as of Wednesday the countdown will be delayed by a day.

There are in fact two issues with the potential transport problem, firstly how to get the bone marrow here at all and, secondly the length of time that it will be outside the body. If the latter is uncertain or too long then maybe the marrow will have to be frozen before transport.

Later in the day we heard from the transplant coordinator that the US organization concerned has more material that is in urgent need of transporting and is considering chartering a private flight. In any case the transplant team here will meet tomorrow to discuss the situation and decide what should be done about it. Specifically I have said that I'm against Kay being given radiotherapy before the transplant date is certain. At the moment Kay is in pretty good shape, but I expect that that will change fairly quickly after the radiotherapy.

Apart from all this, Kay has had a good day. She has been out of bed a lot, doing school work and playing on the computer. She has been fairly well behaved but remains on a very short fuse, particularly with Marion and Marion's natural motherly concern.

As I put Kay to bed another potential disaster is brewing: Mickey has gone missing. For those of you not in the know, Mickey has been Kay's constant companion since she was a baby and was with her through her first brush with leukemia. I have searched the room, without turning everything upside down, but no Mickey. I have checked with Marion, who has not seen him. The only real alternative is that he got caught up in Kay's bedding when it was changed today and is now on the way to the laundry. First thing in the morning the staff will phone the laundry. Let's hope that they have found him, otherwise there will be bloody hell to pay.

There really is never a day without some kind of new flavour of worry to experience.

T-4: Quiet Day

Apart from the cloud of potential bladder and kidney problems that hangs over us, today has been a ‘good’ day. That is, Kay had the 4th ATG treatment and it passed uneventfully. The exponents just keep on working. Late last night and early this morning she had a lot of tummy pain and diarrhoea (another spell checked word!). This is another run-of-the-mill side effect of her treatment and we should in theory treat it as such. But it’s pretty difficult to see it like that when your child is rolling around in bed in pain. But still...

In herself Kay has also had a good day, less angry and difficult with Marion and I. She has even been fairly cheerful most of the day, I gather. This evening she was briefly decoupled from the monitor and various lines and allowed a shower. She spent about 30 mins just letting the hot water run over her body, lapping up the feeling. She has eaten reasonably such that the threat of being put on NG feeding has possibly receded. She has lost about 0.5kg in the last couple of days but it still way above her low point during the initial treatment.

A kidney function test this morning has not shown any damage to her kidneys. However the radiotherapy will increase the risk of damage to her bladder so, judging from what we have heard from the specialist, we can probably expect bleeds from her bladder during the next weeks. Hopefully this will only be a temporary effect. And hopefully her kidneys will show no deterioration in the next week.

I had a bad night last night and was still pretty angry and upset this morning. So I got on my bike and cycled 93km around the Nijmegen area. It was a beautiful day and there is some beautiful countryside around here. So in the course of the ride I managed to push some of my anger and despondency to one side. On the 11th of May I have a meeting with the wise minds of the hospital and complaints commission about the problems that arose with Kay’s treatment through to January. I’m surely to add this to the top three items on the list. I just hope that the list doesn’t get any longer.

Tomorrow Kay gets the final ATG and an echo in preparation for the radiotherapy on Tuesday. Wednesday is a rest day and Thursday is when the transplant is due to take place. We’re still learning about the hygiene rules – this being Nijmegen they don’t have any documentation available and the explanations that we’re given are incomplete, etc, etc – and slowly we’re learning about what can and cannot be taken into Kay’s room, etc. Surprisingly the rules seemed quite relaxed to begin with. But each nurse gives us additional rules and so, bit by bit, the restrictions are starting to meet my expectations.

T-5: Another Medical Screw-Up

I can't believe it: we had a visit this afternoon from the head doctor of the IC unit. In short he told us that yesterday a mistake had been made with Kay's chemo, namely that they had overlooked an instruction to hyperhydrate Kay during and after one of the chemos. The instructions were to run 3 litres of fluid through her in 24 hours. They ran 1 liter. In theory the consequences can be damage to the bladder leading to bleeding, and kidney damage.

We then demanded to talk to the duty oncologist, who is also the department deputy head. She arrived some hours later and we discussed the potential consequences. In short, there's definitely a risk of bleeding in the bladder but she says that there is only a small risk of damage to the kidneys. They will run extra tests to monitor her renal function during the next days.We'll have to see what happens in the coming days.

I'm not going to go into the subject further here. I'm tired and extremely angry and upset by what is clearly another serious medical blunder. Radbout's failings to one side, I have no idea what our daughter has possibly done to earn this kind bad luck in life. She's been so good and so tough during the last days and now she has to pay an additional price because of someone's incompetency.

T-6

I spoke a little too soon yesterday. When we left Kay last night - the HC/IC unit is not setup for parents to overnight - Kay was OK. Marion phoned at 11:30 and she was still OK but at 4:30am we got call to say that Kay was not feeling well and that she wanted one of us. Marion went over to find that Kay had developed something of an allergic reaction. She was sick, had a headache and was covered in a rash. Also her blood pressure dropped quite a lot. Nothing huge to worry about but still, a step backwards.

By the time that I arrived at 8:30am the worst had passed and the doctor cleared her for the next round of chemo. In fact she got two treatments today, the second being round two of the ATG. Kay was pretty frightened by the prospect of repeating yesterday's experiences but the doctors assured her that the worst of the ATG treatment was over and this indeed seemed to be the case. Both rounds of chemo passed without incident. Kay has been in reasonable spirits, relatively speaking, and when I left earlier was looking forward to watching the "New Yuri Geller", a TV program that should also be subjected to aggresive chemotherapy.

BTW the results of the biopsy of Kay's rash were negative for Shingles. This is good news meaning that we don't need to worry specifically about her developing Shingles during the next weeks. Interestingly the biopsy was not conclusive about the source of the rash.

Tomorrow we expect that Kay will be moved back to her normal room for the remainder of the ATG treatments.

Below, Marion & Kay resting this afternoon as the chemo flows...

T-7: "Nobody is allowed to leave this room. Nobody"!

Today has been a hard day. But it could have been worse. Having said this, the chemo is still running so we’re not out of the woods yet, but I gather that the first hour or so is the worst bit. We were taken up to the High Care unit around 10.30 this morning but it was not until after lunch that things started moving. The doctors checked Kay out and pronounced that the chemo could be started but it wasn’t until about 2.30 that it did start.

For the first hour or so nothing much happened. Kay was tired and wanted to sleep, Marion & I were sitting on the edges of our seats, watching the monitors like hawks. Into the second hour Kay started to complain of ‘flu like symptoms, firstly the cold shivers, then a headache. Then she was very sick. The chemo was stopped to give her a rest, and the doctor prescribed paracetamol for her headache. Fortunately she had not (and did not) develop an allergic reaction, which was our biggest worry.

However she was scared stiff by how sick she felt and demanded that the doctor and attending nurse stay in the room with her: “Nobody is allowed to leave this room, Nobody!” she yelled at the doctor. The doctor duly obeyed instructions and hung around until Kay dozed off.

Kay is still frightened by the epileptic attacks that she had last year and as soon as she started to feel the effects of the chemo she became very frightened. Marion & I had a hard job to try and calm her down. Eventually the paracetamol started working and Kay fell into a light sleep. The chemo was restarted and so far has run without further incident. Kay slept for an hour or two and woke up a little while ago feeling much better, headache gone. I have taken a break to sit on a more comfortable chair in a room with windows for a while, but when I left she was watching TV and slowly perking up. I’ll head back as soon as I’ve finished writing this blog.

In total she will have five courses of ATG. The first is supposed to be the most difficult and together with the second is performed in the High Care unit. So Kay will stay in High Care overnight and we will repeat the treatment again tomorrow. If all goes well she will be moved back to the ward for the remaining courses. I suppose that there’s an exponential decay thing going on here, the first course killing 80% of her t-cells, the second 80% of the remainder, etc, etc. This would explain why the first course causes the most problems: the reaction is the body’s response to the death of all those t-cells.

So, we have crossed the point-of-no-return, if there ever was such a thing in this story. Kay’s immune system is now on a steep descent into oblivion. Only the transplant will enable it to recover. A sobering thought. And then there’s the spectre of Total Body Radiation coming up. That’s the one that really scares me.

Still, I said to Marion earlier that we have had more difficult days than today and she agreed. Kay ‘only’ suffered the typical effects of extreme chemotherapy. I guess that ATG has broken down our normal perspective along with Kay’s immune system.

Countdown T-8

Kay's rash seemed somewhat improved this morning. However a biopsy was taken to be prudent. The results will not be known until tomorrow, but the specialists have decided that the ATG treatment will take place tomorrow. The reasoning is that either the rash is Shingles and it's now under control (rash improved) or that it's not Shingles and is therefore not relevant. The result of the biopsy will only determine whether Kay is kept on the anti-viral drug or not.

Apart from that the day has been very quiet. Kay & I played some games this morning, the 4-in-a-row score is now 10-8 to me. Kay slept for 4 hours this afternoon. Marion took the chance to go home and bring another car load of stuff this way. Even so, for some reason it was a tiring day - the result of worring about tomorrow I suppose.

Kay's mental state is of some concern to Marion and I. She is incredibly bad tempered, rude, argumentative, uncooperative, etc etc. Obviously she is suffering from stress and worry, but the degree of aggression that she radiates is rather worrying. We have asked that she get to talk to the child psychologist as soon as possible, since it is clear that she needs some support that we are not able to give. But I suspect that this will take a back seat in the coming days since I expect that the ATG treatment will make her very sick for a few days.

I have the feeling that we're now on the eve of the really difficult days of the BMT. We'll see.

Countdown T-9

Yesterday’s chemo finished at 4:30 am this morning which meant that the night was broken up by alarms going off on the infusion pumps, nurses running in and out and Kay wanting to go to the toilet every 2 hours or so. Both of us were in a fairly zombie like state this morning. Marion had spent the night in the McD house so was relatively fresh when she arrived.



Today Kay was given the same chemo again today, chemo designed to kill off her bone marrow. Again the chemo was pushed at a lower rate for a longer period and should finish around 9.30 this evening. Hopefully Marion & Kay will sleep better tonight – my turn in the McD house. Kay looks somewhat rougher than yesterday. She’s also getting dexa to prevent sickness and this has already rounded out her face and given her an extremely bad temper. She has been looking quiet flushed in the face as well, which we think is also a dexa effect. Apart from that she has had a quiet and uneventful day, fortunately.


In theory tomorrow would see her moved to the High Care unit where she will be given AGT, a drug that kills off all her T-cell lymphocytes and effectively destroys a large part of her immune system. This treatment usually causes an allergic reaction in some patients of differing strength, up to and including full blown anaphylactic shock. This is why it is necessary for her to stay in High Care for the first 24-48 hours, and bearing in mind Kay’s history with allergic reactions I assume that it will be no easy ride.


However the debate continues as to whether or not the rash on her chest is Shingles or not. The dermatologist thinks not, but is not sure what it is; the immunologist thinks it could be Shingles; the results of the smears are inconclusive. So it has been decided to postpone the AGT treatment for 24 hours, giving time for a skin biopsy to be made of some tissue from Kay’s chest. So first thing tomorrow morning this procedure will be performed. I’m sure that Kay will kick up a huge, dexa fuelled fuss about the whole thing, but yeh, it has to be done. Getting an attack of Shingles when she has no immune system is considered be too risky. So after this tomorrow becomes a rest day, one of two planned during the countdown.


One interesting thing that Marion learned yesterday is that the donor actually travels to Nijmegen for the stem cell removal procedure, which is performed on the same day that Kay gets the transplant. The donor undergoes the procedure in the early morning, the lab processes the tissue during the day and Kay gets the transplant infusion in the early evening. The logistics of this are fairly mind boggling, especially considering that the donor almost certainly has to travel long distance. I started to raise a bunch of what-if questions with the doctor about this, this afternoon, but Marion flew into a panic on the subject so I didn’t get any useful answers. Fair enough, I have the same attitude about the details of the various treatments.


Anyway, 2 days down, 8 to go.

Countdown T-10

Last night Marion asked me if I thought that everything we "needed" to take to the hospital would fit in the car. I laughed, assuming that she was joking. However I overlooked that fact that Marion is working on the assumption that they don't have supermarkets in Nijmegen and that we are actually 1200km from home and/or that she's not planning to shop for the next six weeks. The load in the car was large enough that of the seven seats, only three were left for passengers.

Nevertheless we arrived at the hospital on time, dumped a load of stuff at the McD house and took the rest to Kay's room. She has a large room (fortunately) facing south with a beautiful view of the nearby woods. We quickly settled in and the day started in routine manner. Smears of mouth, nose, etc, etc, were taken to test for any bugs that Kay may be carrying. 1001 different people looked at the rash she has on her chest and all pronounced that, although they didn't know what it was, it definitely wasn't Shingles. Eventually even the Prof dropped by and gave a nod for the kick-off.

Around 3pm the first chemo was started. Kay is connected to a veritable maze of plumbing and all the lines have to be continually flushed. Also the correct line must be used for the chemo. Once this was sorted out the chemo pump was started. The nurse left the room, promising to return within a few minutes. However, within minutes of starting the push, Kay started complaining of stomach pains. This rapidly escalated to a full blow allergic reaction, sweats, pains, swelling, etc. I had Marion hit the panic button and within seconds the room was full of people. This is the second time that we have had to do this and I can't say that it's much fun.

The push was immediately stopped and anti-allergic medicine was given. Kay slowly recovered from the reaction, but Marion & I were both pretty shocked by the rapidity of what happened - and the slap-in-the-face reminder that we're not here for a holiday.

After some debate, it was decided to start the chemo again at a lower flow rate. But unfortunately a new dose of chemo had to be ordered because the lower flow rate meant that the initial dose would overrun its use-by time limit. The new dose came in a lower concentration, the same measure of chemo in a larger volume of fluid. Instead of running it in at 230 ml/hr it would be started at 40 ml/hr, then stepped over over a period to 115 ml/hour. This means that instead of the original 3 hours it will take around 10 hours before the push is complete. How this affects tomorrow's schedule remains to be seen: the same chemo is also planned for tomorrow afternoon.

Kay is now sleeping and the chemo is running in at 115ml/hr. She has been given anti-sckness and anti-allergy drugs, so I hope that we can have a restful night. We'll see.

The photo below was taken at the start of the chemo this afternoon.

de belevenisen die ik heb beleefd

de afgelope tijd heb ik heel veel mee gemaakt. ik ben naar school geweest, en ik ben kampioen geworden van het tennisen en ik heb gehockeyt en ik heb paardgereden en nog met mijn vrienden en vriendinnen gespeeld. en ik heb sinds twee weken een nieuw vriendje en zijn naam is mauro.ik heb ook nog heel veel dingen gedaan met mijn gezin zoals: ik heb ook nog met natasha en met mama ben ik weeste stadden daar heb ik heel veel leuke dingen gedaan en ik heb met papa in de tuin gespeeld en nog veel meer leuke dingen. ik heb ook in die maanden mijn kinderfeestjes gehouden omdat ik vorige jaar mijn kinderfeest niet kon vieren omdat ik toen leukemie had heb ik het maar dit jaar gedaan. ik heb ook van andere kinderen een feestje gehad en dat was heel gezellig. en ik heb de afgelope maanden ook heel veel bezoek gehad zoals: mijn oma en opa en mijn tante en mijn nichten en neven. ik heb ook veel gelogeert met mijn vriendinnen en toen hebben we heel veel gelachen.


op school gaat het heel goed. iedereen is aan mij gewendt. ik ga gewoon volle dagen naar school. we hebben de afgelope weken een werkstuk moeten maken. en mijn werkstuk ging over leukemie ik heb daar over vertelt wat leukemie precies is en wat de bijwerkeningen van zijn en de medecijnen die je krijgt. ik doe ook gewoon mee met de gym en met de toetsen ik ga soms naar buiten maar soms ook niet als het te druk is. ik kan gewoon de lessen volgen dat is geen probleem en als ik in het ziekenhuis lig dan kan ik mee doen via de webcair dat is een computer en dan kan ik me in loggen en dan kan ik de klas zien ik heb nog soms moeite om in de les te blijven maar meestal gaat het wel goed hoor.


ik ben weer begonnen met het sporten. mijn sprten zijn paardrijden tennisen en hockey. daar ben ik weer allemaal aan begonnen het is leuk om weer te gaan sporten ik doe ook al mee aan de wedstrijden van het hockey en ik doe ook mee aan de trainingen van het hockey ik ben ook al begonnen met het paardrijden ik doe het niet elke week om dan krijg ik last van mijn spieren en dat wil ik niet ik ben nog niet begonnen met het tennisen maar ik heb wel maart competitie gespeeld en daar was ik kampioen


ik voel me wel goed soms ook niet maar meestal wel. ik heb soms best wel veel boosheid en dan moet ik het er uit doen. ik voel me bijna niet ziek meer soms dan nog wel eens maar bijna niet meer. ik moet een keer in de week naar het ziekenhuis dan is het voor controle of soms chemo en als mijn bloedwaarders te laag zijn dan moet ik een bloedtranfuctie. ik heb nog steeds medecijnen dat is wel een beetje logisch. ik hoef bijna niet meer over te geven of iets anders dat is natuurlijk wel fijn. ik ben al gewendt aan de drukte om me heen eeerst kon ik daar niet tegen maar nu wel omdat ik daar aan gewendt ben dat is wel fijn om dan kan ik gewoon naar drukte toe gaan en dat kon ik eerst niet dat is wel fijn hoor!!!! met het gezin gaat het allemaal heel goed hoor!!!!!!!!!! ik ben eigenlijk heel blij dat ik nu even thuis ben ik leef eigenlijk gewoon mijn eigen leventje net als iedereen dat is eigenlijk heel fijn s' ochtends wakker worden in je eigen bed dat is nou echt heel fijn en s' ochtends met mijn gezin aan tafel zitten en samen ombijten en s'avonds ook samen aan tafel zitten en samen eten en met elkaar dingen doen. ik ben echt heel blij. ik kan met iedereen nu goed praten ook als ik verdriet heb of iets anders. ik kijk erg uit als dit allemaal is gebeurt dan ben ik echt heeeeeeeel blij!!!!!!!!!!! maar we moeten er gewoon even doorheen net wat iedereen zegt. ik fiets ook al zelf naar school en terug dan fiets ik met vriendinnen mee en dan ga ik naar huis. soms is het moeilijk om andere kinderen te begrijpen met dingen die ze bedoelen om ik zit nu zoooooooooo vol met dingen die ik gewoon niet wil weten en dat is erg vervelend en soms ben ik gewoon niet bij de les dan ben ik in een andere wereld en dan is de juf aan het vertellen en dan hoor ik het niet wat de juf verteld en dan vraagt de juf iets aan mij en dan weet ik het niet en dan doe ik niet of ik het weet maar dan weet ik het echt echt helemaal niet. mijn vriendinnen helpen mij heel veel met dingen die ik niet weet en dat vind ik erg fijn dat doet de juf ook. en in eindhoven is de onceloof erg verbaasd als ik daar telkens kom om dan vertel ik wat ik allemaal heb gedaan in de afgelope weken en dan kijkt ze me zooo verbaasd aan en dan gelooft ze me niet en dan vraagt ze het aan papa of mama en die zeggen dan meestal ja. ik kan heel goed met natasha en met lauren en met papa en mama om gaan soms is het iets anders maar dat komt door mijn medecijnen maar met natasha en met lauren kan ik wel goed opschieten dat is wel erg fijn. ze snappen het ook wat ik mee maak en ze leven alle twee met mij mee dat doet natuurlijk iedereen maar hun doen het echt ook heel veel bijvoorbeeld: als ik verdrietig ben dan komt lauren en die vraagt of zij mij kan troosten en soms kan dat maar soms ook niet. en natasha daar kan ik juist zoveel mee lachen en dat helpt soms ook wel. wij genieten heel veel van het lente weer we hebben al heel veel dingen met elkaar gedaan zoals: buiten spelen en de stukken die we hebben gewandeld en gefietst. ik geniet echt van het thuis zijn dat vindt ik echt heeeeeeeeeeeeeeeeel fijn.


groetjes kaytje!!!!!!!!

Countdown starts on Monday

Kay's rash does not seem to be Shingles. The tests have not determined what it is, but the most likely possibility is an allergic reaction to something. So we're all set to start the conditioning phase of the BMT on Monday.

To end her hockey season in style, Kay scored four goals today as their team won 7-0. Here's is goal #4, a rather spectacular one...

Update: Mixed News

The start of the countdown is rapidly approaching, Monday should be T-10 days. Tension in the Howe household is slowly rising. Kay is doing well, but is keeping her head down and staying busy. She has recovered from the line operation but the new line is a distinct encumbrance. Last Friday she had to have the dressing changed, which from her reaction appeared to be as scary and painful as the CIA's reputed waterboarding technique. But was soon forgotten.

We had some good news on Friday. During the operation to place the new line, a bone marrow biopsy was taken for another MRD. On Friday evening our specialist phoned with the result: the MRD measure had further decreased, meaning that remission continues and provides a good basis for the transplant.

We have spent the Easter weekend enjoying some family moments. Yesterday Marion, Kay, Nattie and I cycled to Weert and back, some 20 km total. Kay did very well considering. I had to push her along for around 6 km on the way back but she cycled the rest herself.

Today we had what should have been a routine check at Nijmegen. Kay has a cold and a cough at the moment, but according the specialist, this is no problem for the BMT. Otherwise Kay seemed fine, her blood levels were excellent. However, when the specialist checked Kay over, he found a fresh rash on her chest which had apparently appeared overnight. He thinks that it's Shingles, a rash related to the chicken pox virus. This is serious enough to potentially delay the BMT if it's not sorted out in the next couple of days.

To be certain slides and cultures of the rash have been taken and we'll have the results on Friday. In the meantime Kay has been started on a high dose of antiviral medicine - more or less the same stuff that is used to treat herpes C (cold sores).

The dressing on the new line had to be changed again, much to Kay's anger and disgust. Again she kicked up a HUGE fuss and had me feeling quite panicky. I took quite a while to ger her calmed down again. Then the nurse discovered a small hole in the new line where it runs into a connector. It looked like the line had been damaged by the connector, like the power cable on an iron where it runs into the iron itself.

The nurse had to find the consulting surgeon, which took a while. He looked at the damaged line and then had to track down a repair kit, which again took a while. Once delivered, we again had to wait for the surgeon, who then set about cutting out the damaged section and gluing in a replacement. In theory the glue needed to set for four hours before the line could be used. Since it's imperative that the line is filled with heparine I was worried that we'd have to sit around and wait - by now it's almost 4pm. But the surgeon decided that it was OK to flush and fill the line even while the glue was drying.

Having had poor experiences with prematurely putting glued joints into use I was rather concerned about what would happen if the joint separated (eg while I was driving home). In principle this would lead to a bleed directly from an artery, which I'm sure would be quite distracting if I was driving at the time. So I insisted that they put a clamp on the blood side of the joint so that it if did separate no blood could leak out.

During all of this we heard that Kay's first chemo will not start until 2pm on Monday, eliminating the need to be in hospital on Friday already. So, Monday it is.

Finally we had to brave the endless queue in the Pharmacy, before finding out that the antiviral medicine that had been prescribed was not in stock and would need to be delivered to us at home later, by courier.

Then, at last we could leave - a long and hard day that we did not expect.

Cross fingers that the antiviral medicine will rid her of the Shingles by the weekend.