MRD Result on Monday

Not much to add to the title. Kay's blood levels were reasonable on Thursday and she didn't need a transfusion. She's been to school and yesterday had a (very delayed) birthday treat with her friends - they went bowling and then spent the evening making pizza.

Bone Marrow Taken

Kay had a bone marrow sample taken yesterday for the MRD. This procedure is performed under general anaesthetic (had to look that up in the spell checker...) so she was pale and tired when she got home last night. She'd also been sick in the car on the way home, including her NG tube. So she had to face the delight of having it refitted when she got home. Today she's a little tired and has decided not to go to school. Her teacher will come to our house this afternoon to give Kay some dedicated attention.

Kay's Hb (red cell) count was a little on the low side yesterday, but the rest of her levels were OK. However we have to go to the Catherina on Thursday for a blood test. I suspect that if her Hb is still low then we'll be there all day while she gets a unit of red blood.

For now we're waiting on the results of the MRD. Fingers crossed!

What next?

Kay got through this week's chemo with only a medium amount of trouble. The dreaded asparaginase caused an allergic reaction again, right at the very last moment. The doctors took great care to ensure that Kay was effectively protected by anti-allergic drugs before the asparaginase was given. Also, 25ml was infused over a period of 4 hours, 4x slower than normal. If any reaction, such as a rash, was noticed the infusion would be paused. In theory this protocol should have prevented an allergic reaction and largely it did. However, at the end of the infusion Kay broke out in a fever of +39C. She was sick, etc, in other words seemingly an allergic reaction. During the course of Wednesday evening her blood pressure dropped to 87/29 and her heart rate rose to 140 - 150. All pretty worrying. Marion says that the doctors were not really sure what was happening. The symptoms of the reaction were not typical and the lateness of the reaction was also strange - effectively it started after the infusion was complete. Kay symptoms stayed this way through Wednesday evening but slowly during the night her pulse & temperature dropped and her blood pressure rose. On Thursday morning her blood pressure was 90/47 and her heart rate was around 120. Still her face was quite puffy. So, the doctors were cautious and, much to both Kay & Marion's frustration, kept her under observation until late in the afternoon when they were allowed to go home.

Now it turns out that there's an interesting adder in the grass with this protocol: the line from the infusion pump into Kay's portal has a volume of about 1.5 - 2ml. Before the start of the procedure this line is filled with saline. At the start of the procedure 2ml asparaginese is rapidly pumped into the line, ie 2ml in 30secs or so, to fill the line. Then the infusion is started at a rate of 6ml per hour. After something less than four hours, Marion said that the pump alarm went off indicating that the infusion was complete. However Marion worked out that given the time that the pump had run only 23.5ml had been run in. She discussed this with the nurse who pointed out that there was still about 1.5ml in the line. The nurse then proceeded to flush the contents of the line, meaning that Kay got the last 1.5ml in about 30 secs, the time it took to flush the line. And this is when her reaction started. Seems pretty obvious, doesn't it? So then the question is why the line was flushed in this way?

Anyway, Kay is back home and in good form. In spite of being tired and having no appetite she insisted on going to school yesterday morning. The child amazes me, truly. How she can go from low BP, high temp & pulse to school in 36 hours is incredible. If determination was a treatment, Kay would have cured herself by now.

So the question arises: what next? Kay has reached the end of the second phase of the ALR 10 protocol and, before our meeting with the specialist last Wednesday, we had no idea what would happen next. But the meeting all was revealed...

On Monday Kay will have another bone marrow sample taken for another MRD. This MRD will be done very quickly, within a few days and will determine the immediate course of action. If the MRD is below 10^-3 (ten to the minus three) then she will be put on maintenance chemo until her bone marrow transplant. The lower the MRD the more time there is to find a suitable donor. However, we have been given to understand that there is to be no unnecessary delay, even with a low MRD the BMT will follow as soon as possible.

If her MRD is higher than 10^-3 then she will get an extra cycle of chemo starting a week on Monday, this time a type of chemo that is normally used with AML leukemias. This chemo is of the short-sharp-shock type that will hit Kay's system very hard. It will probably knock her out for up to three weeks and it will IMMEDIATELY be followed by the BMT. In this case the choice of donor will be a compromise, driven by the time available. If no suitable donor is found then either Marion or I will function as donor, ie a cell type match of 5/10. We're told a haploid transplant (ie where the donor has only 1/2 the same chromosomes) is a realistic and manageable option. However, obviously it's not a preferrred option and therefore I assume that there's more risk involved and more intervention required after the BMT. So, in principle, if her MRD is too high then we're now about 4-5 weeks away from the BMT, irrespective of the 3rd party donor search.

So, I can summarize by saying that if Kay's MRD remains too high, from a week on Monday we will be entering a very intense and tough period in her treatment. If it's low enough, then hopefully we will get a few weeks of relative calm and rest before a BMT, with a better chance of having a more highly compatible donor.

I really hope that it's the second alternative: both Marion & I could do with a break. I'd like to package Marion up and send her down to France for a long weekend so that she can spend a few days sleeping in the sun, recharging her batteries.

Home and Away

A short update: it turned out that Kay also had a virus as well as a bacterial infection. The virus was the reason that she needed the oxygen. However she improved well enough so that she got a weekend pass to go home on Saturday. So we had a quiet family weekend recovering from the dramas of the previous weeks. Now she's back in Nijmegen on the chemo. The expectation is that if all goes well she will be home again on Wednesday. After that we have no idea what to expect. Marion & I have an appointment on Wednesday to hear what the plans are for her continued care after this week.

We heard today that five potential donors have been identified during the initial search. These donors will now be contacted to provide blood for a more detailed type match, a process that will most likely take many weeks yet.

Kay remains positive, difficult and damned tough. She's generally happy, if fed up of being tired and having no energy. She's also complaining that her legs hurt due to lack of use, but she continues to push herself along. On Saturday she cycled 1.5km on Uncle James' VR cycle simulator. (On Sunday I did 20km on it and it left me with rubber legs!).

I'll have to publish a list of the best gadgets for long stay hospital patients/parents. Contenders for the top place are the Slingbox and the Amazon Kindle. WebChair for linking to school is excellent. The TACX iMagic cycle simulator also ranks highly, though for home use only. A laptop with mobile internet and Skype/Windows Live is essential. The iPhone / iPod Touch is unmissable especially with the addition of Logitech portable speakers. Kay has also discovered that the department has a Wii - I expect that when she's in here for a while she'll be driving everyone mad with her Guitar Hero game! I'll have to write to the Gadget Show...

Can you imagine how much stuff we're dragging around?

Slow Improvement

Kay is slowly recovering from the infection. Her white cell count has risen from 0.0018 to 0.2 and her other blood levels also show a recovery. She looks better but doesn't have a lot of energy and is sleeping a lot. She remains fairly grumpy but yesterday I arranged for her to have a bath and that cheered her up quite a bit. In order to go home she has to have been fever free for at least four days and off the oxygen, which she currently still needs. Tomorrow will be the fourth fever free day and so we hope that she will be able to spend the weekend at home before returning next week for the final chemo of this stage of the protocol.

This morning I heard more about the timescales for Kay's bone marrow transplant. In short it is likely to be 10-12 weeks before the BMT can begin. Typically this is how long it takes to find a donor and have bone marrow ready to be transplanted. At the moment our contact person doesn't know anything specific w.r.t. Kay's case, she will hear more on Thursday this week. But we can expect to continue in some kind of BMT limbo for the next 4-6 weeks when the first results of the first donor search will be known. At the moment we do not know what kind of treatment Kay will get in the intervening period.

Today Kay has for the first time made use of the WebChair schooling software that has been kindly provided by KPN. WebChair is an IT product that allows Kay to attend her class at school, remotely. A large monitor, wireless microphone and a video camera have been installed in Kay's class. The video camera can be remotely panned and zoomed. Kay has a laptop with the WebChair client software that allows her to make a connection with the system in the class, hear and see what is going on and control the video camera. The camera and picture quality are good enough for Kay to be able to read whatever is written on the school whiteboard. She can also look round the class and zoom in/out on whatever is going on. Kay's teacher wears the microphone and so in this way Kay can take part in lessons.

Kay's teacher emailed her assignment for today and Kay completed that assignment together with the rest of the class. Kay then emailed her work back to her teacher who then marked it and returned the marked work back to Kay. We live in a wonderful digital age.

Needless to say we are all very grateful to KPN for providing all this equipment and software for free.

The Masked Father

I recovered sufficiently today to feel able to visit Kay. So I drove across to Nijmegen to see if I would be (medically) welcome. The rules were that I had to wear a mask and had to confine myself only to Kay's room, which was all fine by me. The result was that Marion got the afternoon off and went to the McD house to have a sleep and a decent shower.

My impression of Kay, having not seen her for almost a week, was not too bad. The most striking thing is that she is humourless, very grumpy and obstreperous. Her way of fighting back, I guess. She's not had a fever for more than 24 hours and generally seems to be slowly recovering. The concern is that her recovery is rather too slow and that there might be something else in her system apart from a bacterium. So she is now also getting stronger anti-fungal medicine as well. She showed some signs of subcutaneous bleeding today, so was given platelets. Exceptionally she got a mild allergic reaction to the platelets, causing a rise in temperature, blood pressure and heart rate... but hopefully these symptoms were only related to the allergic reaction.

Fortunately there has been no need for her to be moved to the high-dependency unit during the last days, so we have been spared that extra level of worry.

Marion is looking pretty worn out, I have to say. The toll on her during the last days is very visible. I'm looking forward to a time when she can take a good long holiday and recharge her batteries. Hopefully Kay will continue to improve. She has to be fever free for four days before they will consider the episode closed. I expect that she will then slide directly into the next and final chemo of the initial phase of the protocol, so I expect that we will be here for at least another week. I also hope that we'll learn more about the search for a donor during that period.

Results of investigation

After another round of poor communication this morning at Nijmegen, the investigation into Kay's condition started this afternoon. During the night Kay had had another temperature spike of 40.6C and was again sick, again resulting in the NB tube coming out. Her pulse was high, 150, and she needed a higher oxygen flow rate. The nature of the infection is that she has good periods when she's active and bad periods when she has fever and is knocked out. So she has been variously doing puzzles and sleeping a lot during the day, I gather.

The results of the various investigations have led to the conclusion that Kay has a variety of streptococcus (I forget what name Marion mentioned) that is very difficult to combat. The antibiotics that she has been getting should eventually deal with it, but it is likely to take 2-3 more days yet. We have been told to expect potentially increased pneumonia in the meantime, with the probability that she will be moved to the high-care unit (one step below intensive care). She will in any case be kept under close supervision and her blood will be tested for the infection everyday until she is fever free.

I'm not welcome in Nijmegen until my symptoms have disappeared, so I reckon it will be a few days yet before I can see Kay for myself. However Marion seems quite calm at the moment, which is a little reassuring.

Still, this remains a very worrying situation which is still slowly escalating. Let's hope that it starts to show a positive trend soon.

Where is Doctor House when you need him?

Kay's state is pretty worrying. Since Sunday she been treated with antibiotics but continues to periodically spike a fever. Blood tests showed on Tuesday that she has a streptococcus infection that should have been sorted out by the antibiotics. Yesterday further investigation showed that she doesn't have a fungal infection in her lungs, but does have (light) pneumonia. Again the latter is something that the antibiotics she has been getting should have dealt with. Today she essentially has shown no further improvement. So the decision was made to move her to Nijmegen for further investigation and treatment.

The course of the week has been spotted with her being sick (from coughing) and throwing up her NG tube, I think about five times now. Her blood levels have remained low, so yesterday she had an extra unit (or two) of blood and extra platelets. Low blood levels and throwing up the NG tube has been an nasty combination because at one point she had to wait some hours to get platelets before the NG tube could be put back, which ended up being at 1.30 am. To be honest it has been a pretty gruelling week for Kay.

On the positive side her white cell count (neutrocytes) has been increasing, meaning that her system is gaining ground. And we have been told that this can strengthen some of her symptoms as her body fights back more. But on the other hand the doctors in Nijmegen have decided that it's necessary to keep her on a heart monitor and also found that her O2 sats were low, so she's now also getting oxygen.

Her situation has been described as worrying but not yet serious enough for me to travel to Nijmegen. I should mention that I have been in bed for three days with pretty much the same symptoms, periodic fever spikes, fluid on my lungs, aching, etc, etc. If Kay has the same bug as I do then I'm not surprised that it's hit hard - it's hit me hard and I'm pretty fit (110km MTB last week). I spoke to the lead specialist a few hours ago and asked directly if, bearing in mind my condition, she thought that I should be in Nijmegen, and she thought not. She says that Nijmegen need some time to build their own picture and then they'll let us know what they think.

Marion is carrying the primary care for Kay on her own and she's having a damned hard time. I've just arranged for her mother to go and give her support until I can/am allowed to be there. I think that this situation is slowly becoming as worrying as the epileptic coma days. However this is taking longer and is getting more worrying by the day, without a clear diagnosis in sight.

Where is Doctor House when you need him?

Got bug, back in hospital

I guess it started on New Year's Eve when Lauren started with a virus. We were immediately worried about cross infection and phoned Nijmegen, but they told us that there was not much to be done except to minimized contact between Lauren & Kay. So Lauren, poor thing, has spent quite a lot of time in her bed.

Yesterday I started with more or less the same thing and became certain that we had to expect that Kay would get it too. And, surprise, surprise, this morning she developed a temperature of 39C. So we called Catherina and were told to "come on down". On arrival she (just) had typical 'flu symptoms, fever and headache. However her blood levels were terrible, Hg = 4.4 (should be above 6), Platelets = 9 (should be above 15) and white cells (neutrocytes) = 0.0018. The latter figure is extremely low, normal range is 3 - 7. So Kay was immediately admitted for blood, platelets and a double course of antibiotics. And we have been here ever since. Fortunately my bag is always ready to go these days and so I'm doing the first night. But I'm not feeling so brilliant either, so I dont expect to be worth much tomorrow.

The lights have just gone out for the night and I now cant see the keyboard very well and my touch typing is not so good. So thats it for now!

Happy New Year

Kay is generally in good form. She has been well through the New Year and full of life. On New Year's eve we were invited round to friends and spent the last hour of the Old Year and the first few hours of the New Year with them, which was great. Kay got to bed around 2am, reluctantly. She had slept in the afternoon and again in the evening so possibly she was the least tired of any of us. However she insisted on sleeping with Marion and I, and how could we possibly refuse that? The result was that I didn't sleep so well, since the bed seemed rather crowded, at least on my side. Still, an enjoyable moment.

Since Kay is so "herself", so lively and busy, it's very easy to forget just how deeply 11 weeks of intense chemo has affected her body. For instance, she's quite weak - she couldn't open the top of a bottle at Old Year - she can't walk too far and riding a bicycle is completely out of the question. But she is very keen to exercise.

Some years ago my brother bought me a TACX Virtual Reality indoor cycle trainer. Yesterday I set this up using Marion's fitness bicycle and a old PC that I had lying around. Essentially the TACX software displays a VR terrain on the PC and controls the resistance felt by the bike rider through a brake attached to the rear wheel of the bike. It also takes input from the bike's steering. So effectively the cyclist can ride around a VR environment on a real bike.

Since I last used this system the software has advanced dramatically and the result is completely brilliant. And of course for Kay there's no risk of her falling off the bike and she can stop whenever she wants. I setup a short ride of 1.6km on the flat (around the "town centre") for her and set her off. But she only managed about 600m before she was too tired to continue. Nevermind, the system is there for her to use whenever she wants and it allows one's progress to be measured and goals to be set. So if she wants she can use it and see how she's improving, etc. I suspect that when she's home after the bone marrow transplant and stuck in the house for 4-6 months she will make quite some use of it. I've promised her that if she practices riding an MTB then when she's fit again I'll buy her a real one and she can go cycling with me, which is something that she's wanted to do for a while.

On Wednesday Kay's blood levels will be checked and if they are OK she will get the next chemo on Thursday, which will probably keep us in Nijmegen over the weekend. This is the last chemo of the planned induction/consolidation phases of the protocol. It is followed by another MRD measurement which will in part determine what happens in the coming weeks. To be specific, the MRD level is set at 10^-4 (ie, ten to the power of -4), which I understand means 1:10^4 cancer cells in the bone marrow or 1:10000. Kay's last MRD was 10^-2, in other words x100 higher than the MRD. In other words she missed the MRD by quite a bit but, we're told, not by a worrying amount.

If at the next MRD she's still above 10^-4 then she will get an extra chemo cycle. We have been told that this is pretty likely. The extra chemo involves agents that are normally used for the treatment of AML (Kay has ALL), but in this case will be used to try to push the ALL MRD under 10^-4. In the meantime the search for a bone marrow donor will continue. At the moment we have no further details: we do not know how long the extra chemo cycle will take or what it involves. We do not know when the bone marrow transplant could take place. This degree of uncertainty is very difficult for Marion & I as we have no idea what to expect beyond the end of this week.

One thing that I've been meaning to mention, though it's probably obvious, is that we haven't sent any Christmas cards this year. A bridge too far under the circumstances. So we hope that you all had a good Christmas and we wish you all the best for the New Year.