Wednesday Morning:
Starts with high dose Methatrexate repeated 4 times during the day, plus Kepra, etc. Followed by a trip to Nijmegen for a series of preparatory medical tests and meetings. This includes a meeting with the Radiologist, who attempts to explain to Kay what Total Body Radiation is and what effects it will have. Kay doesn't want to hear so puts her iPod headset on and blanks the rest of us out. Later the Radiologist wants to show her to radiotherapy treatment room and the chair she will have to sit in. Kay doesn't want to know and is absolutely adamant that she will not go in, not look, not sit in the chair. Everyone but Daddy doesn't understand this and keeps trying to pursuade her otherwise, which brings anger and tears. But Daddy understands - he wouldn't want to go in there either, it would give substance to the nightmares and fuel the fears in the coming weeks. So Daddy extracts a promise from her that when the time comes she will cooperate fully. That's OK.
Wednesday Afternoon:
Starts with 60 minutes horse riding, including galloping. A couple of hours break to eat and then hockey practice. That's another 75 minutes in the cold and dark running round a hockey pitch.
Thursday:
Insists on cycling to school, full day at school. Kepra morning & evening, 6MP chemo in the evening.
Friday:
Has to take anti-MTX medicine. Also Kepra and 6MP. Again, insists on cycling to school. Is extremely tired in the evening.
Saturday Morning:
Kepra. Takes part in an (away) hockey match with her team in the pouring rain. Spends the first half goalkeeping. In the second half takes her usual attacking position and scores five goals. Her team wins.
Saturday Afternoon:
Spends two hours playing tennis with a friend. Followed by Kepra and 6MP.
Sunday Morning:
Is up at 8am and downstairs on the computer working on a project for school about Leukemia and Blood.
Is pestering us to go to SnowWorld so that she can do some skiing.
Nevermind comic books, superheros exist in real life.
Sunday 28 February 2010
Monday 22 February 2010
Mixed News
Good news: two suitable donors have been identified for Kay's bone marrow transplant. The specialists are in the fortunate situation that they can choose between donors and therefore they will run further tests to identify which if the two would be the better candidate. Unfortunately this meant that they had to take quite a lot of blood from Kay today to support this testing. Poor Kay had 100ml taken via her portal, an unhappy surprise. Once a choice has been made arrangements will have to be made with the selected donor for the appropriate physical examinations and paperwork to be completed, then a date for their operation will have to be planned. Kay's transplant will then be planned to synchronize with the availability of the donor cells. It is expected that this will take another 4-5 weeks. So the transplant process is likely to start at the beginning of April.
Bad news: the transplant itself, particularly the conditioning phase leading up to the transplant, is more nightmarish than I had expected. The conditioning phase begins around 10 days before the transplant itself. The first step is to kill off all of Kay's T-cell lymphocytes - the white cells produced by the Thymus - since the presence of these cells would cause rejection of the transplanted stem cells. We understand that this is a tricky process that will require Kay to be admitted to the High Dependancy Unit while it is conducted. The en-masse death of T-cells can cause an allergic reaction of varying severity that requires constant management. This process will take a couple of days. Note that it takes the body 4-6 months to repopulate itself with T-cells and that this is the reason that Kay must be isolated for such a long period after the transplant. T-cells are responsible for the body's immune response to viruses and therefore Kay will remain particularly susceptable to viral infections for a long time.
The second step is chemotherapy that targets Kay's existing bone marrow. This will take around five days. The final step is total body radiation which takes a further two days. The transplant itself follows immediately after the radiation therapy is complete. Side effects of this include the certainty of post transplant infection and damage to the body's mucus membranes leading to sore/infected mouth, throat, etc.
Following the transplant, the recovery process is essentially a question of waiting for Kay's body to start producing bone marrow products again whilst managing the various infections that are likely to occur. Under normal circumstances this process can take 5-7 weeks post transplant. Therefore we expect that Kay will be in hospital for around 6-8 weeks. Then she will be isolated at home for a period of 4-6 months. Of course, this all depends on how well Kay responds to the whole process.
There are all sorts of rules and consequences, ranging from dietary restrictions to the removal/cleaning of the curtains and carpets at home to the separation of cats and Kays. But, yeh, all part of the price that must be paid for a healthy Kay. Hopefully we will get some decent documentation on the subject from the hospital so that we don't have to commit everything to memory.
There are also some interesting technical effects. For instance that Kay will end up with potentially a new blood group, that of the donor. During the recovery period her body will slowly change from one blood group to another. She will require transfusions during this period, which will initially be done using universal blood, but in principle her body won't reject blood from the new blood group even while 'old' cells are in her system. But enough of the techie talk.
On Wednesday we have to return to the hospital for a bunch of tests and a couple of meetings. Otherwise we expect that the next few weeks will remain fairly 'normal'. Kay's blood levels today were excellent, so hopefully the next weeks will be uneventful.
Bad news: the transplant itself, particularly the conditioning phase leading up to the transplant, is more nightmarish than I had expected. The conditioning phase begins around 10 days before the transplant itself. The first step is to kill off all of Kay's T-cell lymphocytes - the white cells produced by the Thymus - since the presence of these cells would cause rejection of the transplanted stem cells. We understand that this is a tricky process that will require Kay to be admitted to the High Dependancy Unit while it is conducted. The en-masse death of T-cells can cause an allergic reaction of varying severity that requires constant management. This process will take a couple of days. Note that it takes the body 4-6 months to repopulate itself with T-cells and that this is the reason that Kay must be isolated for such a long period after the transplant. T-cells are responsible for the body's immune response to viruses and therefore Kay will remain particularly susceptable to viral infections for a long time.
The second step is chemotherapy that targets Kay's existing bone marrow. This will take around five days. The final step is total body radiation which takes a further two days. The transplant itself follows immediately after the radiation therapy is complete. Side effects of this include the certainty of post transplant infection and damage to the body's mucus membranes leading to sore/infected mouth, throat, etc.
Following the transplant, the recovery process is essentially a question of waiting for Kay's body to start producing bone marrow products again whilst managing the various infections that are likely to occur. Under normal circumstances this process can take 5-7 weeks post transplant. Therefore we expect that Kay will be in hospital for around 6-8 weeks. Then she will be isolated at home for a period of 4-6 months. Of course, this all depends on how well Kay responds to the whole process.
There are all sorts of rules and consequences, ranging from dietary restrictions to the removal/cleaning of the curtains and carpets at home to the separation of cats and Kays. But, yeh, all part of the price that must be paid for a healthy Kay. Hopefully we will get some decent documentation on the subject from the hospital so that we don't have to commit everything to memory.
There are also some interesting technical effects. For instance that Kay will end up with potentially a new blood group, that of the donor. During the recovery period her body will slowly change from one blood group to another. She will require transfusions during this period, which will initially be done using universal blood, but in principle her body won't reject blood from the new blood group even while 'old' cells are in her system. But enough of the techie talk.
On Wednesday we have to return to the hospital for a bunch of tests and a couple of meetings. Otherwise we expect that the next few weeks will remain fairly 'normal'. Kay's blood levels today were excellent, so hopefully the next weeks will be uneventful.
Wednesday 17 February 2010
Countdown to the countdown
Kay's check this week went well. Her blood levels are still good and she looks great. Her hair has started to grow back a little but how long that will last I don't know. She is rather too full of energy, the bad weather limiting her ability to burn it off. And when Kay has too much energy, every one suffers. She gets short tempered, bossy, bored, fed up, manipulative, etc. But equally one can enjoy her energy, she's always up to something, always has something to say, is always busywith something, is always willing to help, is always looking for jobs to do, is ready with a loud laugh or a big smile, wants to sit on you knee, to snuggle in your arms, to fall asleep next to you...
The news from the specialist is that the search for a donor is progressing positively. They have a number of promising candidates that have returned samples for further typing. More will be known in the coming weeks. However they are certain enough of finding a donor - or of using Marion or I - that they are starting to plan the transplant. Next week on Monday Marion & I will sit with the BMT specialist to hear about the planning and the details. On Wednesday Kay needs to be in Nijmegen for a bunch of routine tests preliminary to the BMT. My guess is that the countdown proper will start within the next 3-4 weeks.
So the end of this period of rest is in sight. We're all off to the "Hof van Saxe" for four days to get a break. Kay is fit enough to be allowed to go swimming, so I suppose that's where the girls will be found during the coming days. That or bowling. In the coming weeks we'll need to get ourselves organized for an extended stay in the hospital. So I supposed that we'll have plenty to do.
More when we've heard about the planning on Monday...
The news from the specialist is that the search for a donor is progressing positively. They have a number of promising candidates that have returned samples for further typing. More will be known in the coming weeks. However they are certain enough of finding a donor - or of using Marion or I - that they are starting to plan the transplant. Next week on Monday Marion & I will sit with the BMT specialist to hear about the planning and the details. On Wednesday Kay needs to be in Nijmegen for a bunch of routine tests preliminary to the BMT. My guess is that the countdown proper will start within the next 3-4 weeks.
So the end of this period of rest is in sight. We're all off to the "Hof van Saxe" for four days to get a break. Kay is fit enough to be allowed to go swimming, so I suppose that's where the girls will be found during the coming days. That or bowling. In the coming weeks we'll need to get ourselves organized for an extended stay in the hospital. So I supposed that we'll have plenty to do.
More when we've heard about the planning on Monday...
Tuesday 9 February 2010
Eye of the Hurricane
Following the MRD result last week we have entered a period of relative calm before the oncoming storm of the bone marrow transplant. Kay has started maintenance chemo, designed to repress / continue reducing the amount of cancer in her system. We have been told that the BMT will happen just as soon as a donor has been found, but almost certainly in the next 4-6 weeks. So we're assuming that we have around four weeks of relative peace and quiet.
I have taken the opportunity to go down to our holiday house in France to work/cycle/rest/check the house out. Next week we will take a couple of days off all together. Hopefully we will all be just a little stronger and more rested before having to face the BMT.
There is no more news about a possible donor and we're not asking. Asking won't speed the process up but will cause us more worry if it's not going well.
I just put some video on facebook showing Kay using her WebChair software to take part in school lessons whilst she was in hospital a few weeks ago. Check out: Kay's WebChair Lesson (1)
I have taken the opportunity to go down to our holiday house in France to work/cycle/rest/check the house out. Next week we will take a couple of days off all together. Hopefully we will all be just a little stronger and more rested before having to face the BMT.
There is no more news about a possible donor and we're not asking. Asking won't speed the process up but will cause us more worry if it's not going well.
I just put some video on facebook showing Kay using her WebChair software to take part in school lessons whilst she was in hospital a few weeks ago. Check out: Kay's WebChair Lesson (1)
Monday 1 February 2010
Ray of Sunshine
Kay's MRD result is well under the target level. This means that she will be put on maintenance therapy until her bone marrow transplant. We have an appointment with the specialist on Wednesday morning to hear the details and to start the maintenance cycle.
What a relief...
What a relief...
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