Thursday, July 30, 2015

No bumps!

Hope hates potholes, speed bumps, and anything that jostles the car while we're driving. "No bumps!" she yells from the backseat. Unfortunately for her, we live in a city where potholes are both a major problem and not even breaking the top ten list of problems being addressed. So she yells, "No bumps!" and I call back, "Sorry, kid!"

This week we hit a couple of bumps in Hope's treatment; nothing major, but still bumps. But this time she is the one taking it in stride, while the rest of us feel like crying out, "No bumps!"

After the last chemo hold, Hope's numbers bounced up as expected and we restarted at the same dosages after a week. Ten days later, we returned to clinic today to see where she stood -- and she's neutropenic again. So it's another week-long hold to give her marrow time to recover. And this time when we restart it will be at 50% of her dosages, with incremental increases every two weeks until her ANC stays in the sweet spot of 500-1500. In the meantime, we are cancelling plans and hunkering down for the week.

The other bump is less physically significant, but maybe more emotionally consequential. Hope's hair is falling out again. It's probably because her chemo dosage was just a little too high and her counts plummeted. We knew this could happen during maintenance, but fair warning hasn't made it any easier. My heart sank when I was unbuckling her on Monday afternoon and saw her car seat covered in fine hairs. It's such a marker of illness, of difference, of fear and wrongness. A reminder that she is still in this battle, that the poisons I deliver each night are still doing their damage, and that even though we plan for the future and live a mostly normal life, the next ten months are far from what should be normal.

There's no picture for now. It's in that awkward, rapidly thinning, old-man pattern baldness phase. Depending upon how the next few days of shedding goes, we may have to shave the rest.

It will grow back. It's no big deal. It feels silly to care about it when so much is going so well for her. We know of so many kids who are dealing with real, lasting damage from the intense treatment. But we're going to feel a little sad about it, curse the bumps, and then pull out the sun hats and move on.

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