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.

4 comments:

  1. Indeed very mixed! Again a period of uncertainty, doubt, fear and hope to come. Take it step by step like a huge staircase and eventually you will reach the top.
    Just hope you've had some nice days in the last weeks all together!
    Let's face the future now! Go for a healthy Kay!
    Viviane

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  2. You are doing your best, and I know that one terrible aspect of the "nightmare" treatment is that, as a parent you are 'imposing' it on Kay, as she is a minor and not choosing this for herself.

    From what you tell me - including what is not written here - this has put another terrible burden of responsibility on you.

    There is nothing that you rationally don't know about this: that you are at each turn taking the best choice between different evils, and that you are doing so entirely in the interests of Kay. In fact you are tortured with all the knowledge. In some way you are actually 'saving' Kay from much of this, and you are taking on a huge share of the actual nightmares.

    A weaker man (and woman, Marion) could run away from this and leave it to someone else. You are not running, and you are facing up to the nightmare. We watch this and we try our best to understand it, and we are left with a sense of admiration for your strength.

    Lots of love,

    Your little brother.

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  3. We are very proud to have such wonderful caring children Love Mum and Dad.

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  4. Rob, Marion, I think Jamie says so much of it here. I am filled with admiration for you. Keep going, like Vivian said, one step at a time. With you all the way.

    Lots of love, Alison

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