All of what he wrote was true. I could try to convince the hospital that Janel’s case had been an outlier in terms of medical, psychosocial, and financial aspects. But would they believe me? Would they question my judgment even if I told them this? After all, I had said Janel was a college student who would walk into the hospital, have his surgery, and walk out of the hospital. Nothing could have been further from the truth, though I’d had no way of knowing that when I originally proposed bringing him to Boston.
I had actually seen these three new patients with my own eyes. They were very different from Janel, with minimal disability and a far lower level of surgical complexity. But I had never explained to the hospital administration that I hadn’t actually seen Janel before we began the process of advocating for his care. Perhaps it wouldn’t have changed anything if I had, but the conversation might have been different.
I worried that my enthusiasm to care for a patient as complex as Janel could preclude us from caring for more straightforward neurosurgical patients from Haiti at Brigham. In retrospect, I had led with a challenging, costly case. At the time, I had seen no choice, and I would likely do the same thing again. But if I had known about all of these patients from the outset, would I have strategized to bring a straightforward patient first, ensuring a success and a good feeling for all involved to pave the way for the next case? Or would I have felt Janel’s case was the most advanced and urgent? Maybe I would have just tried to bring all of them, starting with whoever got their passport and visa first.
Despite my desire to help, I felt reluctant to try to bring another patient from Haiti to Boston for brain surgery. But it was pointless looking backward now. Just because Janel was back in the ICU after his fourth neurosurgery, why should that affect my approach to these new patients in front of us who needed our care? I had to try to do my best for all of them. I responded to Ian that I agreed we should go for it, and that we should begin working on cost estimates for these patients so we could see if Brigham would be willing to provide them with free care.
* * *
After the shunt removal and ETV, Janel remained unresponsive for days the way he had after his three prior surgeries. When he finally woke up, he didn’t speak or interact at all and wasn’t eating. Over the following days, he became progressively more sleepy and difficult to rouse. A CT scan showed his ventricles were beginning to balloon again.
Ian wrote to me while I was still in Haiti:
Janel needs a shunt. He needs more CSF [cerebrospinal fluid] diversion than an ETV can provide. Sorry.
And so Janel went for neurosurgery number five.
I returned from Haiti to find Janel at his worst. He was lying in bed, motionless, unresponsive to voice, unresponsive to physical stimulation. A thick tan liquid ran from a pump into a small yellow tube entering his nose and snaking down into his stomach to try to give him some nutrition in anticipation of his upcoming chemotherapy.
A follow-up MRI showed that Janel’s tumor was even smaller than on his last scan, meaning the radiation and chemotherapy had worked. But I was becoming increasingly concerned that although Janel’s life may have been saved, the treatments had left him no better—and perhaps worse—than he had been before he came to Boston for treatment. Saving his life without necessarily improving it was a risk we had all acknowledged from the outset. But looking at Janel, I couldn’t help but think of the crude critique medical students sometimes make of neurosurgeons and neurologists: “Neurosurgeons make vegetables; neurologists water them.” If Janel wasn’t awake and couldn’t eat on his own, I couldn’t imagine putting him through more chemotherapy.
Feeling dejected, I left his room in the neuro-ICU. As I walked out, I saw one of my colleagues from neurology residency who was doing advanced training in neuro-oncology.
“Seeing your friend from Haiti . . .” she said with a forced half smile, her tone ambiguous as to whether she was asking me or simply stating a fact.
“Yeah,” I sighed. “Are you involved in his care now?”
“I’m just following him from the neuro-oncology team while he’s hospitalized,” she said.
I nodded. “Thanks,” I said.
“We should chat about him . . . I mean, he’s not really . . .” She trailed off and glanced away.
“We’re old friends. Tell me what you really think,” I said, forcing a brief smile.
She looked down at her clogs. “I mean, I just met him this admission, but . . .” She looked up at me and paused. “Well, what are we doing here?” she said, softly but sternly. “He looks terrible. You’re not really thinking of trying to give him more chemo, are you? I mean, I’m sure the oncologists would do it, but what’s the goal here if he looks this bad?”
She stared at me, expressionless. I could tell the situation upset her. And I could imagine that neuro-oncology training had been trying for her, seeing patients die or become extremely disabled from aggressive brain tumors, with the tools of modern medicine often nearly powerless to make a major or lasting difference.
Now it was my turn to look down at my shoes. “Believe me, I’m asking myself the same questions,” I said, shaking my head. “But at his best, he walks, he talks . . . he even sings and dances with the nurses . . . You’re seeing him at his worst.”
She raised her eyebrows cynically, cocking her head slightly to the side.
“I wouldn’t believe it either if I were in your position, but it’s true,” I told her. “Look, he was completely unresponsive for nearly a month after the first surgeries, and I thought we’d wrecked him. But then one day he woke up, and a few weeks later he was walking. He’s been through two seizures and two surgeries in the last week. We have to give him a chance to wake up more. He always takes a long time to come around after surgery.”
Even as I said all this, I didn’t feel optimistic. And she could easily perceive that.
“I guess we’ll see,” she said, shaking her head and walking past me into the room.
As I walked away down the hallway, I heard her begin trying to examine him. “Janel . . . Ja-nel! . . . Ja-nel!! . . . Ja-nel!!!”
* * *
Janel did wake up and eventually started eating on his own over the following week, but he had lost a lot of ground. Spending more than two weeks in bed after the seizures and surgeries, he had become too weak to stand on his own. We were unable to get free rehab for him again, and Hermide was understandably reluctant to take him home in such a disabled state. But we didn’t have any other options, and she agreed to do it.
Janel spent most of his time at Hermide’s asleep. When she brought him food, he could eat on his own, but otherwise he refused to get out of bed. After her previous experiences, she decided not to try to push him to do anything. She just let him sleep.
She did find, however, that he seemed happy to be taken to church on Sundays. One Sunday, she and the women who lived with her managed to get Janel into the car to take him to church. Moments after they had him seated in the pew, he began shaking and collapsed, hitting his chin on the floor. They called 911, and he was taken to a local hospital and then transferred to Brigham.
At Brigham, Janel immediately got a CT scan. Fortunately, it didn’t show any problem with his shunt. But his blood tests showed low levels of his anti-seizure medication. When I told Hermide, she wasn’t surprised.