Wednesday, 23 June 2010

T+61: Worrying Developments, Tense Days To Come

The blood count from this morning confirms that Kay's cell counts are dropping. Tests rule out graft-versus-host problems, meaning that the source of the problem is Kay's bone marrow. For some reason her bone marrow activity is being suppressed. The most likely cause of this is the anti-viral drug that is being used to combat the CMV virus in combination with anti-bacterial drug that she gets to protect her from lung infections. Both these drugs are known to suppress bone marrow activity. Also the timing fits, the drop in bone marrow activity more or less corresponds to the moment that the anti-viral dosage was increased a few weeks ago.

As a result the medics have switched Kay onto different anti-viral and anti-bacterial medication. The disadvantage of this is that the anti-viral has to be given intravenously meaning that Kay will have to stay in hospital for, most likely, many more weeks yet. This is the good news.

The bad news is that the alternate explanation for Kay's reduced blood counts is a that her leukemia may have returned. This can be ascertained by doing a bone marrow biopsy, which the medics have planned for Monday. If Kay's blood counts stabilize before Monday then the biopsy will be cancelled. But if they continue to deteriorate, then the biospy will be done to determine the cause. There are other bone marrow related reasons for a reduced blood count, but I gather that none of them are very pleasant.

So we face some very tense and worrying days. In principle the next blood count will be on Friday, but it is unlikely that the change of medication will have an effect so quickly. We will have to wait until Monday before there is a blood count that may possibly reflect the changes of meds. But even that is not certain. It may take longer for the effects of the medication change to be come apparent. If a biopsy is done, I assume that there will be a MRD measurement done and this takes a week. So I think that we will have to live with this uncertainty for at least a week.

Needless to say Marion and I are very upset by this turn of events. Marion is very emotional and I'm barely hanging on to my self control. The idea of having to spend (another) week living on the edge of total disaster is not attractive. But, yet again, what choice do we have?

On the other hand Kay's general condition continues to improve. She is more active and more alert. She needs less oxygen and she is drinking more and eating the odd thing. This is a good thing. But still, my worry is that there may be no relation between Kay's general improvement and whatever is suppressing her bone marrow. But I have to put the brakes on such thoughts and hang on to the positive things: the timing, her generally good progress so far, her improved condition, etc. But yeh, it's difficult. I'm absolutely dreading the arrival of darkness and attempting to sleep. I think the furies will be out in force tonight.

Right now I think that we can use all the support on offer. Please leave your comments here or send them to "my-first-name" at howe-family dot org.

7 comments:

  1. After all the misfortune Kay and you all had so far, you deserve only good news from now on. Please keep thinking in a positive way, don't give up!

    Peter

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  2. Beste Kay, Marion en Rob,

    Dagelijks kijken we hoe het Kay vergaat. Wij waren blij verrast om te zien dat ze aan het hockeyen was. Daarna schrokken we dat ze steeds zieker werd en weer is opgenomen. Dan langzaam aan weer wat positieve berichten en nu dit. Heel veel sterkte de komende spannende dagen en opgeven is geen optie!

    Ferry en Joke Beks
    Ouders van Janske

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  3. Beste Kay, Marion en Rob,

    Dagelijks kijken we hoe het Kay vergaat. Blij verrast waren wij toen we zagen dat ze aan het hockeyen was. Daarna werd ze steeds zieker en werd ze weer opgenomen in het ziekenhuis. Het leek langzaam weer wat beter te gaan en nu dit. Heel veel sterkte de komende spannende dagen en opgeven is geen optie!

    Joke en Ferry Beks
    ouders van Janske

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  4. I check your blog every day, but being a "stranger" to your family, I always hesitate to comment. Just know that Kay and your whole family are always in my thoughts. I fervently hope that this turn of events turns out to be just a minor blip in Kay's recovery. What a difficult roller coaster ride you're all on.

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  5. Focus on Kay and her general improvement and try and banish those worrying thoughts, I know much easier said than done. Find that strength Rob to hold on to the positives and don't forget to call on that support of your many friends, we're all here
    Sharon

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  6. I commented to you yesterday on the 'phone about the remarkable control you show in the way you communicate. I used the metaphor of the self-control that was made famous in the 'Right Stuff' of X-1 test pilots reading their altimetres into the ground.

    For months we have followed your blog - I read it at least once a day - hoping for good news. Recently, we have been spoiled: picking up all the positive indicators both explicit and implied by your rationale, analytical and good humoured tone. I read the blog and reread it, as a blanket of comfort, reassured that things are going ok really.

    I am very proud of you Rob. You are my hero. There are other heroes involved, of course, but I am focussing on just this one right now.

    You are my "test-pilot" - the one in whose plane I would always travel, fearless, without question - the best guy to have behind the joystick. I would willingly put my life in your hands, knowing that the decisions you would take are always for the best.

    Key is phenomenally lucky in this one thing: you are her Dad.

    Keep on reading the altimetre. Keep on focusing on the "theory and practice of aeronautics", and the nose of the plane may yet be pulled out of the dive.

    Love and admiration,

    Your brother.

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  7. Ik wil jullie allemaal ook heel veel sterkte toewensen . Wat maken jullie veel mee!
    Ik denk nog steeds aan het leuke filmpje
    van Kay op de muziek van Jan Smit. Dat was erg leuk om te zien.
    Hou vol en geef niet op!

    Ilse van de Velde

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