And so Janel was discharged to Hermide’s home with a plan to begin chemotherapy and radiation the following week. For the first time since his arrival in Boston over two months prior, Janel slept in a home, not in a facility. He was surrounded by people who would care only for him, rather than a constantly changing cast of medical providers responsible for multiple patients at a time. Hermide and the women who lived with her cooked him Haitian food and treated him like a member of their own family. We hoped he would finally feel more comfortable. Maybe he’d even begin to talk with us.
For the first few days at Hermide’s, Janel mostly slept, waking up only to eat. Though he had made some progress feeding himself and walking at rehab, he needed total assistance at meals and to get out of bed. He didn’t look at his food when he ate and didn’t look at his feet when he walked. He mostly communicated with Hermide through gestures. He shook his head no and raised his hand as a stop signal—for example, for any beverage aside from Pepsi. He sometimes held his head in his hands, which Hermide interpreted as meaning he had a headache, because once during this gesture he said to her that he couldn’t bend his head “because he felt like blood was running out of it.”
When Janel finally began to speak more, he seemed very confused. He said things like “I have to feed the cow,” “I’m getting tired carrying all this wood,” and “Stop hitting me with that rock. I’m just trying to get the water.” Was he hallucinating or was his brain finally lurching into gear, flooding with disorganized thoughts and memories from the past few years? It wasn’t clear.
The days were manageable, but the nights became battles. Janel wet the bed several times between midnight and dawn. We weren’t sure if he was truly incontinent or simply went when he needed to since he had likely become accustomed to being unable to walk to the bathroom. Hermide and the women who lived with her had plenty of experience with sick kids wetting the bed, but Janel was different. He fought them. Dodging Janel’s punching and kicking as she tried to undress him, get him to the bathroom to wash him, and change his sheets, Hermide told us she needed to “call on the blood of Jesus” to make it through each night.
Maybe I had brushed off the oncology staff’s concerns prematurely. And maybe Hermide hadn’t realized just how difficult Janel’s care would be.
Hermide wrote to Anne, Michelle, and me:
You mentioned earlier that it could be possible to obtain a visa for Janel’s mother. I think this is a great idea, even a necessity. Given the severity of the treatment, the expected side effects, and where he is emotionally and physically, Janel’s mother can be an important factor in his recovery. They understand each other and can communicate better. We can do our very best, but there is nothing like the love of a mother when one is in pain. If possible, please try to get the visa.
We offered to try. But like Janel, his mother had no passport and no birth certificate, so this could take months.
Somehow, in spite of all this, Hermide and the three women who lived with her managed to get Janel to Brigham for his first days of chemotherapy and radiation. Although the mornings were not as chaotic as the nights, they were difficult too. Janel required a lot of encouragement and effort to get out of bed, into a wheelchair, and ultimately into the car. But Hermide persevered.
Once Janel was at the hospital, he cooperated fully. He didn’t speak, but he didn’t fight either. He didn’t get sick from chemotherapy, and he remained perfectly still during his radiation treatments.
On the fourth day of treatment, Hermide went to get Janel out of bed in the morning as she had the prior three days. He refused. First he remained curled up in bed, not responding to her requests to wake up. Then he pulled the covers over his head. She thought he was being playful, but he continued to refuse to get up. When she tried to gently guide him out of bed, he grabbed onto the bedposts. Finally, Hermide and her helpers managed to wrestle Janel into the wheelchair. But when they arrived at the doorway to leave the house, he splayed his legs and pressed his feet against the outer parts of the door so they couldn’t get him through.
Hermide called me. I was working in the clinic and called her back in between patients.
“Why do you think he’s doing this?” I asked. “Did the treatment make him sick?”
“I don’t know why,” she said, sounding exhausted and exasperated. “Only God knows!”
“You got him into the car the last three days,” I said. “Do you think you can get him to go if you keep encouraging him? It’s not good to interrupt the treatment.”
“Oh, I have tried!” she said, her normally calm, soothing voice becoming more animated, the wide-ranging lilt of her Creole accent becoming more prominent than usual. “If I force him, he might jump out of the car!” she said. “I can’t risk it! Can’t we just admit him back into the hospital?!”
“Well he needs daily treatment for six weeks, so that would be difficult,” I replied, unsure of how to help her. “Maybe we should just take the day off and try again tomorrow?”
“I will try again tomorrow si Bondye vle,” she said (“if God wants”)—but she didn’t sound happy about it.
As soon as we hung up, I called Anne to brainstorm. Maybe an external urinary catheter at night would help address the incontinence problem, and if Janel wasn’t waking up all night after wetting the bed, maybe he’d be more amenable to waking up in the morning. We thought we could get a catheter from the hospital.
“Let’s just try again tomorrow,” Anne said. “Maybe today was a one-off thing.”
Unfortunately, it wasn’t. The next day was exactly the same. So was the next. The oncology team was getting frustrated, understandably so. They had to set up each day to prepare for Janel’s treatment and were concerned that erratic dosing of radiation and chemotherapy would be ineffective in treating his tumor. I was beginning to realize that I had been naïvely optimistic when I had tried to reassure them that everything would work out fine in spite of their concerns.
We decided to cancel the rest of the week’s treatments and regroup.
When Anne went to visit Janel at Hermide’s, she found him awake in bed. He didn’t speak but would nod yes and no to questions, though not always logically—he nodded yes when she asked him if he was in Haiti. Anne took out her phone and showed Janel a picture of his mother that one of our colleagues in Haiti had sent her. His normal expressionless stare brightened into the broad, toothy smile we had seen only once before. He grabbed the phone, clutched it to his chest, closed his eyes, and shimmied back and forth. Then his smile slowly faded back to his silent stare.
Anne asked Hermide what had changed from the week before when things seemed to be going well. She said nothing had changed. It had been just as difficult during the first few days, but she had pushed through. She just felt that she couldn’t continue to strong-arm and reprimand Janel.
We asked for help from a young Haitian psychiatrist from HUM who was doing his master’s in Boston. The psychiatrist was able to get more verbal interaction from Janel than we were and asked him how his hospital visits were going. Janel said they were fine and didn’t mention anything about resisting them. Janel quickly tired of the psychiatrist’s questions and pulled the sheet over his head. The psychiatrist encouraged him to keep going to the hospital. He said Janel gave him a soft “Wi” (“Yes”) of agreement from underneath the sheets. The psychiatrist’s interpretation was that maybe, culturally, Janel needed a male authority figure to be more firm with him. He suggested calling Wilner to hear his perspective.