I wrote to Nathalie, feeling my attempt at an apology fall flat:
That is devastating news to hear. I am so sorry and so sad that we could not make this happen. I and another colleague kept pushing the administration at the hospital that was considering it, but unfortunately I/we/they could not move it along. We will gently let them know the consequences of their delays and hopefully be better equipped to act quickly next time. I am so sorry that we could not come through for the patient . . . I assure you it wasn’t from lack of trying, but it feels empty for all of us to say that. The machine is a very slow-moving one here—it took us three months to get another patient here. I feel bad that he died with him and his family having a sense of hope that we could have done more. We surely hoped so too, and I am sorry we failed him and them.
She replied:
Don’t worry. We all know that you did everything you could and I really thank you for that. And administration had also to do its work. I think there is nothing that could have prevented this sad ending.
As you said, I have the same feeling of guilt because of the hope we gave to the family. I didn’t dare talk with the mom, I felt so bad . . .
C’est la vie . . .
I hope next time it will work out.
We’ll do better, I believe in us ; )
Thank you one thousand times for your support. See you soon.
11
For the first few days after Janel was readmitted to the hospital, he mostly slept. During the rare moments when he was awake, he didn’t speak and barely moved. He just stared straight ahead, blinking rarely. Daily brain radiation and chemotherapy are exhausting for patients, but Janel’s state was far beyond what would be expected for treatment side effects. Still, the fact that he could consistently receive his medical care every day without incident meant that we were achieving our goal: to give him the best chance at the longest possible recurrence-free survival.
While I was still in Haiti trying to find a solution for Francky, Michelle had sent me a text message with a cell phone video attached. In the frozen first frame, Janel is standing in a hallway at Brigham between his nurse and physical therapist, each holding one of his arms. He’s wearing a white long-sleeved shirt and light blue scrub pants. As the video plays, Janel walks slowly but steadily, the nurse and physical therapist just barely supporting him for balance.
“Janel, salye Doktè Martineau!” Michelle says from near the phone. (“Janel, say hi to Dr. Martineau!”) “Bonjou, Doktè Martineau,” she half sings, half says to him. (“Hi, Dr. Martineau.”)
Slowly, Janel raises his hand and waves. “Kouman ou ye?” he hoarsely ekes out. (“How are you?”)
“Anfom,” Michelle replies and laughs. (“Fine.”)
“Tout bagay byen pou ou?” Janel asks. (“Everything going well with you?”)
“Wi!” Michelle replies enthusiastically. (“Yes!”)
Janel’s face brightens into a broad, full-toothed Cheshire-cat smile. Then he laughs and looks down sheepishly to his left. The video stops with him frozen like that, smiling and looking away bashfully.
I was amazed at how well Janel was doing and watched the video again and again on my phone. I showed it to Martineau.
“Wow,” he said, shaking his head in disbelief. “I can’t believe how much better he looks!”
“Me neither,” I said. I really couldn’t believe that he could look so great in the hospital after doing so poorly in the weeks leading up to his admission.
I was eager to see Janel’s progress when I returned to Boston, hoping it would help me feel better after Francky’s devastating death. But it turned out that Michelle’s video had captured a rare good moment.
Janel had fluctuated between extremes over the first weeks of his rehospitalization. There were days when his nurses said he sang and danced with them, winking and making kissy faces. But on most days he simply lay in bed gazing vacantly for the entire day, wide-eyed and unresponsive. Even when he responded with minimal nods of his head, he was not able to clearly indicate whether he knew he was in the hospital or even in the US.
This was how he looked when I went to see him after I got home—exactly the same as before I’d left. I looked through his chart to see what had happened while I was away.
Janel had undergone a follow-up MRI scan that showed no reason for why he was so impaired. The tumor remnant was minuscule, his brain had returned to its normal shape and showed no complications from the surgery, and his ventricles were still normal in size, showing that his shunt was working.
His inpatient oncology team had wondered if he was having non-convulsive seizures—seizures that result in an altered mental state without causing the bodily shaking of typical seizures. But several days of EEG recordings of Janel’s brain waves didn’t show any signs of seizure activity. The oncologists consulted the psychiatry team.
The psychiatry team thought Janel might be suffering from catatonia, a state categorized by mutism (not speaking), immobility, lack of interaction with the environment, and waxy flexibility (sustaining whatever posture—usually of the limbs—that someone else places the patient in). Catatonia can be seen in psychiatric conditions like schizophrenia, depression, and bipolar disorder, but it can also be caused by neurologic or medical diseases and medications. The psychiatrists tried treating Janel with lorazepam (Ativan). Why a sedative medication should work to resolve a sedated state is unclear, yet it does—improvement with lorazepam actually helps confirm the diagnosis of catatonia. But lorazepam had no effect on Janel. The psychiatry team suggested a neurology evaluation.
Since I was away in Haiti, another neurologist was consulted to evaluate Janel. The neurologist labeled Janel’s state as akinetic mutism (literally “non-moving not speaking”)—a condition that shares features with catatonia but doesn’t include the symptom of waxy flexibility, doesn’t respond to lorazepam, and is usually associated with an underlying neurologic disease. The neurologist tried treating Janel with a dopamine-based treatment normally used in patients with Parkinson’s disease to see if that would perk him up. This didn’t work either.
In cases like Janel’s, the artificial boundaries between neurology (the science of the brain) and psychiatry (the science of the mind) are exposed. Was Janel’s behavior due to a depressed level of brain function, or was he simply depressed? Was he depressed by his condition, or was he depressed because of his condition? Were his fluctuations a neurologic phenomenon related to his brain’s recovery from the tumor and his three surgeries, or a psychological manifestation of being alone, far from home, and confused due to his neurologic impairment? The oncology team and Hermide had taken the approach of treating Janel as if he were behaving like a child. How would a child respond to spending months away from his home and family?
Maybe Janel was simply more susceptible to the fatiguing effects of chemotherapy and brain radiation because his level of neurologic function was diminished from the many years he had lived with the tumor and because he had undergone such extensive brain surgeries. But this wouldn’t explain the sporadic good days when he could walk and talk, not to mention sing and dance.
From the beginning, I had known that Janel’s surgery could result in one of three outcomes: it could make him better, it could prevent progression of his tumor but without improving his level of function, or, in the worst case, it could make him even worse. On some days, he was definitely much better than before surgery, on some days he was the same, and on some days he seemed worse. But better and worse than what? I realized we never did have a clear understanding of his baseline before he developed the tumor. We had been told that he was normal until about a year before we met him, but the tumor could not have grown so large that fast. And it certainly wasn’t normal that he was only in fourth grade at age twenty-three, though that could just as well have been an effect of his poverty rather than his intellectual development.