Tuesday 7 October 2014

Another lap on the roller coaster

The roller coaster continues, but if it means there are more ups like today, we'll take it.

Was it just last week we didn't have much to write about? It seems things are changing too fast to process now.

The bad right hand led to a diagnosis of bleeding in his brain (strokes), which led to a belief that it might be leukemia up there.

But the leukemia didn't show up elsewhere in his spinal column, which was a bit confusing. You'd think if the blood cancer had moved into that part of his body, it would be everywhere, swimming around. There was early talk that we might need to do a brain biopsy on him to find out for sure.

In for more tests today, we got some good news. While the scope they shoved up his nose showed nothing, it turns out the azacitidine (chemotherapy) he was getting has a two per cent chance of causing - you guessed it - brain bleeds.

Hooray for Dom getting every rare thing imaginable. Sort of.

The possibility it's not leukemia is thrilling. But this is the drug he's supposed to keep getting as part of the plan to incite GVHD and hopefully kill off the original AML for good. We can't just stop giving it to him. But we don't want any more strokes.

They're going to need to do more tests to make sure. It still could be leukemia. In the meantime, that means a break. Trish and Dom are back to Medicine Hat for a few days prior to his second birthday party.

One thing doctors are doing while they decide what's next is to keep his platelets higher. For most of his treatment he's been given tranfusions once the level is down to 20. That number was dropped to 10 a couple months ago. But now given that low clotting ability could make the strokes more damaging, the number is up to 50.

It's another lap on the roller coaster. Today, we're not complaining.

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