Bittersweet Symphony

There's moments in life that just hit you. Today I was walking to the car, which was parked in the Alexis Nihon parking garage. Emily was running ahead of me through the deserted mall, weaving back and forth with her arms spread out, pretending to be a plane. In itself this is a pretty unremarkable moment in life with a young child. But it is the context surrounding this scene which will make it stick in my mind. For one thing, we're coming from the hospital. And the song being piped in from overhead is "Bittersweet Symphony" by The Verve. You know the one: "It's a bittersweet symphony, this life. Trying to make ends meet, you're a slave to the money, then you die". Yeesh! Somebody give these guys some Prozac! But it's the juxtaposition of this almost suicidal melancholy over Emily's pure and uninhibited delight which struck me.

And life for us these days is full of moments like that. Our 3 nights and 2 days home were wonderful, even with the sword of readmittance over our heads. We made the best of it, having friends and family over, and taking Benjamin outside as much as possible (after all, next time he gets outside it will probably be fall). He took full advantage of his freedom, getting into everything he could. But his crib at home was no longer familiar to him, and he seemed genuinely pleased to be back in the familiar confines of his room in 8D yesterday afternoon.


Benjamin's second course of chemo started yesterday, and will last a total of 8 days, after which we will have to wait for his body to recover again. He is still eating his solids, although he has stopped drinking his milk. This seems to be common, according to some of the other moms in the ward. And the more Roger and I talk to the other parents, the more similarities we see in our situations, even if final diagnoses or treatments differ.

You will recall from my first post the difficulties the doctors had in diagnosing Benjamin until it was patently obvious. Several other families on the ward had the same problems. It seems that leukemia is a tricky little bugger to diagnose. Recurring or lingering infections were common, as were general fatigue, discomfort and headaches. And for several families, as with us, it took weeks after the initial symptoms (months in one case) for the leukemia to actually show itself. Let me get technical for a moment. On June 6th there were no blasts (damaged stem cells, the hallmarks of leukemia) in Benjamin's bone marrow, and on July 11th his marrow was 86% blasts! His most recent biopsy this past Tuesday showed 2% blasts, so the chemo is definitely working.


This brings me to a question which several people have asked me: why could the doctors not find the leukemia earlier, like when Benjamin was first hospitalized? We asked them also, and their reply was that they would have been able to diagnose it in June, but that would have required cutting into an otherwise healthy boy's head to biopsy the lump there. They had no reason to do that and we would not have allowed it. After all, Benjamin had made a complete recovery from the first episode, and there was no indication of what was to come. Hindsight is 20/20 and all that, so we refuse to second-guess the doctors.


So here we are living the lives given to us, hovering somewhere between pure and uninhibited delight and suicidal melancholy. We make the most of the little moments, like Emily walking hand-in-hand in the corridor with the 4-year old sibling of another 8D patient, or Benjamin learning to push himself to standing using the rail of his hospital crib. And I'll keep on blogging updates along with my ramblings and musings. After all, that's what it says in the next line of the song: "I'll take you down the only road I've ever been down."