The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Saturday, July 23, 2011

The Demon Rollercoaster

This is the most recent update from last week that went onto Facebook, for all those who haven't seen it yet. It follows on from the final bone marrow aspiration that Adam had on the 18th and 19th, and the results from that test. Will try to keep posting here so that you don't miss an update if you are looking for one.

Hmm...well. Not exactly sure how to write all this, and definitely not sure that I want to, but here goes.

We saw the consultant today and I'm afraid it wasn't very good news. It seems that her initial assessment that Adam was in remission was not confirmed by the more precise test she did last night. That test is called "immunophenotyping", and it showed that Adam actually has 8-10% of leukaemia cells still in his blood which means he is NOT in remission after all. This is obviously not what we wanted to hear, and not very good news.

However, the next step is still unclear. It really depends on time, how Adam responds to the last few days of the "induction" phase of the protocol, whether he can start on the "consolidation" phase, and if and how fast the remaining cancer cells continue to die off. The doctor wants to carry on as if he were in remission now, to assess his condition over the next week or so, and to begin talking about the next possible step. That step is to consider Adam having a bone marrow transplant, quite honestly the three scary words that have been hiding in the shadows since this whole thing started. The doctor will begin talking to her colleagues in Glasgow soon to discuss the viability of this procedure for Adam, and we will take it a day at a time--not easy to do but it seems this is a waiting game if nothing else. The most critical thing is that Adam will have to be in remission to have a transplant; not only that but he will have to be clinically well too.

Today Adam was lethargic, pale and listless, not like himself at all. It was difficult to hear this news and see him be so still, but this evening he perked up and seemed much better, and once again we feel like anything can happen. My husband's dear uncle and aunt have had to deal with cancer and chemotherapy more than anyone else I know, and she called it the "demon roller coaster". She is right: every minute seems to have lots of ups and downs, and lately every time I make plans another crisis pops up and they fall through. So this evening I decided to "reverse psychology" the whole thing and make plans for the worst, hoping that instead we might have some sanity, peace and most importantly stable home time this weekend. You are welcome to try this at home too! :)

I'll give more updates as I hear them, but if you don't hear anything for a few days we are resting and watching even more Mr Tumble. Thanks again for your support and prayers (and for those who are near, your food too!!) sx

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