in the stomach with a baseball bat. The blood drained from his brain so dramatically that he’d had to grasp the arms of the chair he’d been sitting in to keep from falling to the floor. All his worst anxieties came true. His fear of a curse on his loved ones, particularly children, was alive and well. John Junior had been diagnosed with neuroblastoma, a disease responsible for fifteen percent of cancer deaths in children. Even worse, the cancer had widely metastasized, the malignancy spreading throughout JJ’s body and into his bones and central nervous system. John Junior had what was termed
The next months had been pure hell for the new parents as the diagnosis grew more dire and a treatment plan was determined. Luckily for John Junior, Laurie had remained remarkably clear-headed during that time, particularly those first few crucial days, while Jack struggled to keep from falling into the same emotional and mental abyss he had years earlier. Knowing that John Junior and Laurie really needed him had saved the day.
With great effort Jack fought off the overwhelming guilt and anger and was able to be a reasonably positive force.
It had not been easy, but the Stapletons were fortunate to be referred to the neuroblastoma program at the Memorial Sloan-Kettering Cancer Center, where they quickly came to rely on the professionalism, experience, and empathy of the talented staff. Over a several-month period, JJ underwent multiple courses of individualized chemotherapy, each requiring hospital admission, for troublesome side effects. When the chemotherapy had achieved what they thought was the desired result, JJ was started on a relatively new and promising treatment involving the intravenous injection of a mouse-generated monoclonal antibody to the neuroblastoma cells. The antibody, called 3F8, sought out the cancer cells and helped the patient’s immune system destroy them. At least that was the theory.
The original treatment protocol had been to continue two-week cycles of daily infusions over a number of months, or perhaps a year, if possible. Unfortunately, after only a few cycles, the treatment had to be stopped. John Junior’s immune system, despite the previous chemotherapy, had developed an allergy to the mouse protein, causing a dangerous side effect. The new plan was to wait a month or two, then recheck John Junior’s sensitivity to the mouse protein. If it dropped low enough, treatment would start again. There was no other option. John Junior’s disease was too widespread for autologous stem-cell therapy, surgery, or radiation.
“He’s so darling when he’s asleep and not crying,” a voice said in the darkness.
Jack started. Caught up in his thoughts, he’d been unaware that Laurie had come up alongside him.
“I’m sorry to have startled you,” Laurie added, looking up at her husband.
“I’m sorry to have awakened you,” Jack said sympathetically. Given the demanding circumstances involving JJ’s care, he knew she was chronically exhausted.
“I was already awake when you jolted yourself awake. I was afraid you were having another nightmare, with your rapid breathing.”
“I was. It was my old runaway-car dream, only this time I was hurtling toward a group of preschool children. It was terrible.”
“I can imagine. At least it’s not hard to interpret.”
“You think so,” Jack said with a touch of sarcasm. He wasn’t fond of being psychoanalyzed.
“Now, don’t get your dander up,” Laurie added. She reached out and grasped Jack’s upper arm. “For the hundredth time, JJ’s illness is not your fault. You have to stop beating up on yourself.”
Jack took a deep breath and let it out noisily. He shook his head. “It’s easy for you to say.”
“But it’s true!” Laurie insisted, giving Jack’s arm an empathetic squeeze. “You know what the doctors at Memorial said when we pressured them for an etiology. Hell, it’s more likely it was I, considering the chemicals we’re exposed to as forensic pathologists. When I was pregnant, I tried to avoid all solvents, but it was impossible.”
“Solvents as the cause of neuroblastoma has not been proven.”
“It’s not proven, but it’s a hell of a lot more likely than the supernatural curse you keep torturing yourself with.”
Jack reluctantly nodded. He was afraid of where the conversation was going. He didn’t like to talk about his curse as he didn’t believe in the supernatural, nor was he particularly religious, two beliefs he thought related. He preferred to keep to his immediate reality, things that he could touch and feel and generally appreciate with his own senses.
“What about my taking fertility drugs?” Laurie said. “That was another one of the doctor’s suggestions. Do you remember?”
“Of course I remember,” Jack admitted testily. He didn’t want to talk about the issue.
“The truth is that the cause of neuroblastoma is not known, period! Listen, just come back to bed.”
Jack shook his head. “I’d never fall back asleep. Besides, it’s got to be close to five. I might as well shower and shave, and head in to work early. I need something to keep my mind busy.”
“An excellent idea,” Laurie agreed. “I wish I could do the same.”
“We’ve talked about it, Laurie. You could go back to work. We’d hire nurses. Maybe it would be better for you.”
Laurie shook her head. “You know me, Jack. I couldn’t. I have to see this through, no matter what. I’d never forgive myself.” She looked down at the seemingly peaceful sleeping baby, his slightly bulging eyes thankfully lost in shadow. She caught her breath as a sudden rush of emotion overtook her, as it unpredictably did on occasion. She’d wanted a child so much. She never imagined she’d have a child who’d suffer as much as JJ, and yet he was only four months old. She too struggled with guilt, but unlike Jack, she’d found at least some solace in religion. She’d been brought up a Catholic, now lapsed. Still, she wanted to believe in God, did so in a vague way, and managed to think of herself as a Christian. She secretly prayed for JJ, but at the same time, she couldn’t understand how a supreme being would allow evil like children’s cancer, particularly neuroblastoma, to exist.
Jack detected the change in Laurie’s state of mind from the sound of her breathing.
Choking back tears himself, he put his arm over his wife’s shoulder and followed her line of sight back down to John Junior.
“The hardest thing for me at this point,” Laurie managed, wiping away tears, “is the feeling that we are treading water. Right now, while we wait for his allergy to mouse protein to abate, we’re not treating him. Orthodox medicine has, in a way, abandoned us.
It’s so frustrating! I felt so positive when we started the monoclonal antibody. It made so much more sense to me than the shotgun approach with chemotherapy, especially for a rapidly growing infant. Chemo goes after every growing cell, while the antibody goes after only the cancer cells.”
Jack wanted to respond but couldn’t. All he could do was agree with what Laurie had said by nodding his head. Besides, he knew that if he tried to talk at that point, he’d get choked up.
“The irony is that this is one of conventional medicine’s failures,” Laurie said, regaining some emotional control. “When evidence-based medicine runs into a snag, the patient suffers, as does the family, by being put out in the proverbial cold.” Jack nodded again. What Laurie was saying was unfortunately true.
“Have you ever thought of some sort of alternative or complementary medicine for JJ?” Laurie asked. “I mean, just while our hands are tied in relation to the monoclonal antibody treatment?”
Jack raised his eyebrows and gazed at Laurie in shocked surprise. “Are you serious?” Laurie shrugged. “I don’t know much about it, to be truthful. I’ve never tried it, unless you count vitamin supplements. Nor have I read much about it. As far as I know, it’s all voodoo except for a few pharmacologically active plants.”
“That’s my sense as well. It’s all based on the placebo effect, as far as I know. I’ve also never been interested to read about it, much less try it. I think it’s for those people who have more hope than common sense, or for those people who are actively looking to be scammed. On top of that, I guess it’s for those who are desperate.”
“We’re desperate,” Laurie said.
Jack searched Laurie’s face in the darkness. He couldn’t tell if she was being serious or not. Yet they were desperate. That was clear. But were they that desperate?
“I don’t expect an answer,” Laurie added. “I’m just thinking out loud. I’d like to be doing something for our baby. I hate to think of those neuroblastoma cells having a free ride.”
2
12:00 NOON, MONDAY, DECEMBER 1, 2008
CAIRO, EGYPT
