Change of Plan

The CT Scan was read yesterday and compared with Henry's prior scans, notably the one from December. The one spot noticeable then has doubled in size, clearing up any doubt about the efficacy of Henry's current chemotherapy.

Switching chemotherapy is not a clear cut decision as I think I'd subconsciously hoped. The tumor's rate of growth suggests that it's in a pretty aggressive stage. Despite a significant chance the medicines will not have the intended effect, we will proceed with a chemotherapy called Etoposide, a drug previously administered in Henry's initial stages of inpatient chemotherapy. In this incarnation it will be given given orally instead of intravenously and will be given over a significantly longer duration - three weeks out of a four week cycle. We will begin in a few days.

A tumor growing the way Henry's seems to be, is a bit like a boulder rolling down a hill. There's a certain point at which it cannot be slowed regardless of the means. If we've passed this point, we may be measuring his time in weeks instead of months. This has been the reality that has been extremely difficult for us to comprehend, even though we have known it to be coming for months and have known of the possibility for almost a year and half. I'm not sure a parent's mind can digest the texture of daily life without one of their children.

This news came on the same day that another of our little friends with the same cancer as Henry's passed away. Sophia's struggle with medulloblastoma was a particularly harsh one. A struggle that puts in perspective how we can feel fortunate for the twists of fortune that ease Henry's journey. To the Langford's we wish the peace that comes with knowing they did everything they could for her and the joy at having spent what time they had with Sophia.

Despite Henry's erratic sleeping schedule and intermittent agitation and moodiness, he has hours of perkiness in between his TV watching and couch time. Seeing him sit up, talk and interact with us, shows us the personality and spark that we so wish for. It's pure happiness to see.

Thank you all for your notes and gestures of support. For now, we're taking things moment by moment and want for very little in the way of creature comforts. Our family has been as supportive as we could hope for as have our network of friends and for that we're immensely grateful.