Lesson No. 1 on the pediatric floor: The kids to feel sorry for are the ones with hair.
There’s one in the playroom today, black bangs falling over his eyes, standing on tiptoes to roll a ball down the pool table, then running to catch it on the other side. Gabby and I watch him as our girls play at our feet with hairless Barbies. Katie stretches a sparkly prom dress over the catheter in her Barbie’s chest, lacing tiny IV lines through the arm holes.
At the next table sit the new kid’s parents, squatting in Fisher Price chairs, listening to a young Asian doctor. He pulls a scan from an oversized manila envelope and points at the gray shadows – here, here, here. The father follows the doctor’s fingers. The mother stares at the floor.
The doctor takes a pen from his lab coat, clicks it open, and begins drawing on the back of the envelope. I’ve seen the graph before. At year 0, 36 children. The doctor inches the pen diagonally. At year 3, 19 children. At year 5… He scribbles a large question mark.
For Stage Four neuroblastoma, these are good results. That’s why we’ve all come to this world-renowned hospital. Our kids are going to try an experimental new treatment. Chemo – lots of it. Radiation. Surgery. Monoclonal antibodies. Possible side effects include deafness, leukemia, bone weakness, lots more. The doctor pulls a consent sheet from his pocket and hands it to the mother. She folds it without looking. Tonight, as her black-haired baby sleeps, she will read the first line – Your child has a fatal illness and bury it in the drawer next to the hospital bed.
The parents to feel sorry for are the ones whose kids have hair.
Gabby and I are old-timers here. Together our girls have 17 months on the floor. We’ve settled into the routine, the trays of food, the nurses aids with their thermometers, the phlebotomist who comes for blood each morning, the clutter of doctors making rounds, asking if we have questions, not making promises.
A new intern drops in to introduce herself. “You’re lucky,” she tells my daughter. “You’ll be out of here soon. I’m stuck here for the next three years.” It’s a kind remark, but of course untrue. Years don’t matter here, any more than money or race matter; the have and have nots are determined by who goes home at night.
The doctor is going over side effects of bone marrow procedures one day at Katie’s bedside. Just as he’s taking out the consent form, his cell phone rings. He answers and listens a minute, glancing up to see if I can hear. He whispers into the receiver, “In the closet… behind the brown corduroy ones.” When he hangs up, he’s embarrassed. I want to tell him It’s okay. I don’t blame you for belonging to that world. That world of dry cleaning and spats with spouses, where seasons change in bright colors and families fight over homework. That world where, if a child dies, it’s actually on the news. I was in that world; I liked it.
We get emissaries from that world, too. My father, a professor, comes to visit Kate. It turns out one of the medical residents used to be his student. “Professor Andrew! Do you remember me? You wrote my recommendation to medical school!”
“And you got in anyway?” my dad quips.
We laugh here, too, you know. We invent games in the playroom. At night we watch movies, napping in the plastic reclining chairs next to our kids’ beds. Sometimes we crawl right into bed with our babies, or wander, unable to sleep, into the kitchenette, where we drink stale coffee and pick at the shards of fear, shrapnel from the shock of first diagnosis.
“Now my other son is having headaches. I keep thinking it’s a tumor.”
“I think I found a lump. I know it’s crazy…”
A book is passed from mother to mother. It extols the power of positive thinking. The author, a physician, says hope can cure. Cancer, he says, is usually the result of trauma. Patients can get better… with the right frame of mind.
I wonder what traumas have caused Kate’s illness. I think about this a lot. This hope the doctor is doling out can be cruel.
I am not a perfect mother, like Gabby.
Gabby is only 23. After her daughter’s first treatment failed in Florida, Gabby quit her job, said goodbye to her husband, and moved with her daughter to this hospital 1,000 miles away. That was 13 months ago, and she hasn’t been home since.
I go home. I go to see my other kids, because they need me, but really, because I need them. I take them to dentist appointments and birthday parties. On a play date, a mom confides to me that her son won’t stop hitting in nursery school. What should she do, she wonders. I’m stunned by the question. Why ask me? I can hardly keep my kid alive.
Hope arrives in a kinder package in October, when a four-year-old in overalls and a tousle of red curls bounds into the playroom. His mother introduces herself. Rhonda tells us she is bringing her son in for his final checkup; he has completed the protocol we’re all hoping to survive and is cancer free.
“Yes,” Rhonda says, “the protocol took much longer than they said it would.” “Yes, the chemo was bad, but nowhere near as painful as the monoclonal antibodies.”
I tell her that before Kate got sick, I used to be a science writer. I wrote a lot of articles extolling the high-tech accuracy of new cancer treatments. Now in the trenches, modern cancer treatment seems only slightly more humane than amputation without anesthetic.
“Yeah,” says Rhonda, “it’s a horrendous protocol. But look at us now.” She smiles, brushing her son’s curls from his eyes.
Two months later, I’m in the day clinic when I spot those red curls at the reception desk. Standing next to the boy, his back to me, is our doctor. He’s talking to Rhonda. I take one look at her face, and I know the news isn’t good.
The doctor has a consent form in one hand. But it’s superfluous. The ones to feel sorry for are the ones with hair.