Late Night Leg Pain Blues: A Short Annotated History

When it first crops up, leukemia can present itself in all sorts of ways. Physical tiredness or lethargy. Bruising. Cuts that don't heal. Fevers. Deep bone and joint pain.

A month or more before Fergus was diagnosed (the timeline is murky) he claimed one day that his legs no longer worked. He was 4 years old. I remember him crawling from the car to the front door that afternoon, and sliding around the hardwood floors of our house that evening before bed. Somehow (and I wince when I admit this) I chalked it up to something like melodrama, or the side-effects of a very active imagination. The next day he seemed fine.

And yet a few weeks later it happened again, this time when Lauren took him and Norah to a science museum for the afternoon, and he spent the day wheeled around in a stroller.

By then, or soon after then, there were other warning signs too--illness, appendicitis-like stomach pain, unexplained anemia. It's a long story.

The day he was diagnosed, though, he was essentially free of symptoms. No fever. No aches or pains. That afternoon, our world turned upside down by the 20-ton thud of that word--leukemia--dropping into our lives, we lobbied successfully to take Fergus home for the night, to regroup before checking our little boy into the hospital for treatment.

That night, the bone pain returned for Fergus, deep and awful. We were awake all night, with Fergus begging us again and again to make the pain go away. We could not.

Fergus is 8 years old now. He has been off-treatment for almost 11 months. Lauren noticed him limping a little this morning, and asked him about it. He said something about stubbing his toe last night when the babysitter was here, or of twisting his foot somehow. He wasn't very specific. Lauren and I looked at each other briefly, then moved on. Then late this afternoon he said something about his other leg hurting too, but he couldn't really point to the exact source of the pain. Again, he wasn't very forthcoming when we asked about it. Lauren looked at his foot, but couldn't isolate any painful spots.

Fergus left the room to go about his business (getting ready for bed or whatever), and Lauren and I stood there in the kitchen looking into each others eyes. A small smile (wry? wan?) passed between us. We are so fucking powerless before this disease. Are these just the normal pains of an 8 year old boy re-learning how to run and jump and dance? Or is this the relapse, the cancer coming back? We have no way of knowing for sure.

I mean, what can you do? You shrug, sort of. Or smile that war-zone smile. And stand in the kitchen and hug.

This is supposed to be the easy part, you know? Shit, this is the easy part. And yet, the smallest of things (like--oh god--the smell of the hospital cafeteria yesterday, as Lauren and I walked by on the way to an appointment of hers), the smallest of things can trigger these emotions, put us on high alert, remind us again that we are still on the leukemia-family side of the fence.

Look, Fergus is probably fine. As far as we know (knock wood, cross your fingers, praise the deity of your choice) he could be done with cancer, and cancer done with him. There are so many other kids who are struggling with relapse, or complications, or worse. Honestly, we've had it pretty easy. We are the lucky ones. And yet, this is still Life During Wartime, and we can't just relax into our lives.

Elsewhere, kids have died this week of cancer. Lots of kids--someone else could give you a number; not me. Other little boys or girls have just been diagnosed, and their families are reeling, their parents near passing out (as I was) at their child's bedside. And children all over the world lie in hospital beds, or visit their local clinics, and toxic agents are passed into their stomachs, their veins, their spinal fluid. It's a crude approach in a lot of ways, but it's the only thing that they know to do. It needs study, refinement, more study, breakthroughs large and small.

Obviously, there are a lot of problems in the world. But please consider throwing your ten bucks at this one.

I'm just saying.