November 21, 2017: Keep Going

On November 21, 2017, I was engaged in an all too familiar activity—clutching my phone in my hand and willing a 919-number from North Carolina to flash on my screen. The previous day, Columbia’s radiologist had finally finalized his report and we’d overnighted a copy of the CD to Duke. That morning, UPS alerted me to the fact that the shipment had arrived. Now, the ball was in Duke’s court.

Duke hadn’t played a large role in Matt’s care since the shunt surgery. Daily conversations were replaced by long weeks of silence. When I had concerns or new symptoms to share, I called Columbia, not Duke. When the eye doctor determined that Matt needed a MRI ASAP, I didn’t even think to alert Duke. We—maybe just I—felt betrayed by them. Because they’d missed the hydrocephalus diagnosis. Because they’d listened to my worried calls and read my frantic emails, but failed to hear what I was saying. And because they’d abandoned us. Over these last weeks, they’d been absent, had accepted that I suddenly stopped calling and didn’t once wonder why.

Maybe it’s not fair to expect them to keep track of every patient when there are only so many hours for so many patients, but I had thought maybe we were different because we were poliovirus patients and poliovirus was different. Poliovirus wasn’t just a clinical trial, wasn’t just another treatment. My logic can be explained like this: we weren’t particularly special, but poliovirus was.

The question becomes, why after all these weeks did I turn again to Duke? Why send them the MRI after all these weeks of radio silence? Because despite it all, I still believed the saying: At Duke there is hope. Some huge part of me still believed that poliovirus could be our miracle, if we could just overcome all these obstacles. I had sent Duke the MRI out of some desperate belief that Duke might have a trick up their sleeve, a solution that could fix everything.

I sent Duke the MRI and waited for their call because a year earlier, on November 21, 2016, we met with the Duke doctors face-to-face. Not for treatment. Not for an exam. Just to meet. To be on their radar. To open a patient file with them. Because we wanted to be Duke patients. Because at Duke there is hope. At Duke people had been cured and if we needed a miracle, we’d find it at Duke. Two years ago today, we sat at a table with the Duke doctor and she told us Matt would see his kids graduate high school. Two years ago, I turned my back on every doctor, radiologist, person who tried to extinguish the hope that Duke had lit.

On November 21, 2017, the Duke doctor called me while I sat outside one of G’s after school activities. I stepped away and took the call. She confirmed what Columbia had said—leptomeningeal disease. She told me whole brain radiation was an option. She suggested a few chemotherapies that we could potentially try to prolong life. But she told me that none of those options would cure Matt, none would give him more than a few months at best.

Exactly one year after igniting hope, she extinguished it.

I thanked her for her time, hung up, and stared into a hopeless future trying to understand how we’d ended up in this nightmare in just one year. For a few bleak moments, I knew what it felt like to be hopeless.

I sat back down beside a friend who was also waiting for her daughter. She asked if I was okay and I shook my head. No, I’m not okay. Not at all. I don’t know if I told her what Duke had said or if she just knew by my expression. I said I told her I didn’t know what to do next.

She said you keep going. (Not lucky medically, but so lucky to be surrounded by the friends and family who surrounded us.)

But I couldn’t keep going. I couldn’t keep going without hope lighting the way. I didn’t know how. I wasn’t brave enough to face a grim reality. But I also knew my friend was right—we had to keep going.

So I decided in that moment to turn my back on Duke, like I had turned my back on so many others. So what if Duke lost hope? Columbia hadn’t. Columbia had offered a glimmer of hope. A desperate, maybe impossible glimmer, but a glimmer nonetheless.

And we could keep going with nothing but a glimmer. We’d done it before.

5 thoughts on “November 21, 2017: Keep Going

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