By 11:35 a.m., on December 1, 2017, Matt was done with radiation. By 2 in the afternoon, we were back home, giving Matt a chance to rest before we went to an early dinner with his parents.
The doctor’s appointment had been as uneventful as expected. The bone biopsy results weren’t yet available so we couldn’t review them. The most recent MRI looked largely unchanged from the November 15th MRI. Though we didn’t expect any major shifts to have appeared within two weeks, Matt’s tumor had surprised us before. It wasn’t safe to assume anything anymore when it came to Matt’s tumor. And Avastin—we (the doctor, Matt, and I) weighed the potential benefits of Avastin for Matt against the potential drawbacks and decided not to restart Avastin.
Maybe Avastin would have brought Matt back to himself a bit more. Maybe he could have tapered off the Dexamethasone, which was beginning to impact his temper. But Avastin wasn’t a cure. It wasn’t even a treatment. As it had once before, starting Avastin would have meant closing (temporarily, at least) other doors—like surgery.
Matt’s temper. Early on, I noted that Matt’s temper, that anger, would be a theme I’d return to. I don’t remember when it started—not too long after he restarted Dexamethasone. I don’t remember exactly what provoked the anger. But I remember the rage, the sometimes vicious snap of it.
On December 1st, at 8:50 p.m., a friend texted to check in about Matt and I said it had not been an easy day, despite the uneventful doctor’s appointment. I wrote to her that Matt had spent the afternoon angry with me because (he believed) I was deliberately not calling the phone number for the elevator that was taking too long at the hospital. I’d tried to explain that elevators don’t have phone numbers to call when they’re running slow. He accused me of hiding the phone number from him.
In hindsight, maybe I should have just told him what he wanted to hear. In hindsight, I know I didn’t because I believed if I could just find the right words, patch together a rational thought, he’d see the cloudiness of his own thoughts. He couldn’t. And it wasn’t his fault that he couldn’t. But in hindsight, maybe also, it wasn’t my fault that I couldn’t help but try.
I suspect many posts over the next few months will focus on Matt’s anger, which was often directed at me (and his father). Every sharp word and angry look cut too deep, even though I knew it wasn’t Matt speaking or glaring. It was the tumor and the Dex. But sometimes, in the moment, it was hard to separate Matt from the tumor.
And sometimes, Matt’s temper found its way to G and H. At dinner, H acted up, Matt lashed out, and H responded by acting up even more.
The idea of a children’s therapist had come up often since Matt had been diagnosed. Each time I’d responded the same way to the well-intentioned friends who brought up therapy. I said not yet. I told these friends that we hadn’t reached that tipping point yet—the point at which G and H needed a professional to help them process all they’d been exposed to. One year ago today, we reached that tipping point. If I’m being honest, we may have reached it weeks earlier, but I’d been too afraid to admit it.
Shortly after this dinner, I recruited Matt’s sister to help me find a therapist.
Not lucky medically, but always lucky to be surrounded by the people who surround us.
G and H still work with the art therapist I contacted this time last year. I wish they never had to enter this Post Hope world, but wishes are for fairy tales. So instead, I find myself grateful that entering this Post Hope world didn’t break them. Rather, it made them stronger, more empathetic toward themselves and others. Resilient and brave. And so much more because their story is only beginning.