Matt’s condition was relatively unchanged on October 4th. The Columbia doctor and I had spoken on the phone the night before and she’d warned me that while Matt was under her care, she would do what she deemed was best for him, regardless of what Duke said. I agreed, because I had no choice, but cautioned her to check with Duke because Matt wasn’t a usual case. Everything needed to be considered through the lens of the poliovirus.
When I arrived in the morning, I learned that Matt had been “blasted” with Dexamethasone. Up until then, I’d been hesitant to authorize the use of high doses of the steroid because Duke had warned that steroids impact the immune system. And the goal had always been to energize Matt’s immune system, not suppress it. The blast of steroid seemed to work to somewhat level the dips and jumps of his heart rate.
I called Duke more times than I would like to admit. When I got the nurse on the phone, I heard the same words I’d heard before: we don’t know why any of this is happening, but we’ll see you in October and figure it out. They didn’t understand that the doctors—at the local hospital and at Columbia—were acting as though Matt may not see October 15th. They didn’t understand that in his current state—semi-conscious at best—I wouldn’t be able to get Matt to North Carolina on October 15th. Somehow, they didn’t seem to understand the urgency.
I remember hanging up the phone feeling simply abandoned by the people I’d expected to save us.
That night, the neuro-oncologist asked to meet with me at 6:30. Matt’s mom and I waited and worried for 6:30 to roll around. I can’t tell what we did during those hours that went by at once too slowly and yet had all of a sudden disappeared. As I’ve said before, hospital time has no correlation to real world time. I’m sure I stared at the monitors, watched Matt’s chest for the tell-tale rise and fall. Old habits.
The doctor arrived after she’d finished seeing her patients for the day. She was accompanied by a young female resident. Together, they examined Matt, who remained largely unresponsive, and ushered us into a private room with a row of computers.
A few days ago, I said it would take us a week to learn what caused Matt’s fall and what was causing Matt’s heart rate dips. Apparently, I was wrong (and that’s what I get for trusting my imperfect memory rather than scrolling ahead in the text messages.) We learned the cause of Matt’s symptoms on October 4th.
The young resident accompanying the neuro-oncologist had noticed something on Matt’s most recent MRI. The ventricles in his brain were swollen, the left side more than the right. Matt had a condition known as hydrocephalus, a buildup of cerebral spinal fluid (CSF) which was causing pressure in his brain. The pressure caused the fall (more precisely, a pressure wave caused the fall) and all the other symptoms.
When I asked whether the double vision could be related to the hydrocephalus, the neuro-oncologist did a double take. She didn’t know anything about Matt’s double vision. Of course not. Matt and I had never told her about his double vision. We’d worked with Duke on that particular symptom. We’d gone to the Duke doctor’s office, begged for help with the double vision, and been told to see an ophthalmologist—which we did. But we never relayed the symptom to Columbia. Why would we? Duke had given us a path toward a solution and we trusted Duke above all.
The Columbia doctor’s expression hardened. With a diagram full of circles and squiggly lines, she explained how hydrocephalus could cause double vision. She couldn’t believe we’d been told to get glasses. Double vision, to her, instantly indicated hydrocephalus, or at least warranted asking the question.
My heart rate picks up speed as I remember this conversation, which I’ve replayed in my mind dozens and dozens of times. Rage is not the right word to describe the emotion, the particular mix of anger and disappointment and terror. And guilt. Guilt, because what if.
What if we hadn’t discounted Columbia after that August MRI? What if we’d pressed Duke for an explanation on the double vision? What if Matt’s September didn’t have to be full of headaches and hospital visits?
Asking what if leads me down a road I don’t want to travel. Asking what if hurts.
Then again, asking what if is a double edged sword. What if Hackensack had agreed to do the Avastin and we never met the doctor at Columbia who treated Matt like family and the resident who saw what so many doctors had overlooked? What if Matt hadn’t come home from Chicago when he did? What if we hadn’t randomly been assigned to one of the best neurosurgeons on the East Coast way back in 2016?
I could spend a lifetime asking what if questions. But I won’t. Because what if sounds too much like regret, and like I’ve said before, I cannot regret any decision made out of love and hope.
What is left after the last ember of hope fades away? The answer is still to be determined. I’m fairly certain the answer will not include what if.
We ended the meeting with a plan. The next day, the hospital would conduct a lumbar puncture to simultaneously release some of the pressure and measure exactly how much pressure Matt was under. The doctor also wanted to understand why the hydrocephalus had appeared. The extracted CSF would be taken off to be tested for tumor cells. I didn’t ask what if would mean if there were tumor cells in the CSF. I didn’t want to know. The doctor also wanted us—me, Matt (when he woke up), and his parents—to consider surgery to remove the tumor. I told her we would consider it, but that I knew Matt was adamant he didn’t want any more tumor removal surgeries—he didn’t want bandaids; he wanted cures.
Before we left the room, the doctor asked what Matt and I had discussed when/if (I preferred if) he wasn’t able to make his own nuanced decisions. I faltered. We hadn’t discussed it. Not once. I hadn’t let myself even think it could be a possibility. I hadn’t let Matt think it could be a possibility. Because letting it be a possibility was a betrayal, wasn’t it? Before October 4, 2017, turning our backs on the possibility that Matt might not be okay had felt strong and confident and courageous. But on October 4, 2017, when I stumbled over an answer, turning our backs on the possibility that Matt might not be okay felt weak and irrational. Wouldn’t it have been an act of courage to face all those worst possibilities?
Maybe. But I’m learning that courage, like perfection, comes in many different forms. Maybe simply doing your best in an impossible situation takes courage.
Months and months ago, I wrote about villains in this story. I wrote that the only villain was, and is, Glioblastoma, but if asked in the moment, I might be less generous. What would I say if asked today, eight months and one day into Post Hope, now that Duke’s mistake (failure? oversight?) has been revealed in the story? I don’t know. I would say my truth. I would tell our story, with all its twists and turns that lead to fateful decisions. I would acknowledge that I expected miracles out of people who never promised more than an echo of a chance.
I would tell them on October 4, 2017 I mostly lost faith in Duke—not completely, not yet—but I’d found another glimmer of hope. We had a plan now. We had a positive MRI, a treatment that had cured people, and doctors who were paying attention.