It is a Friday in April. I’m walking back into the hospital after my lunch break, willing my daughter’s doctor to call before I return to my work as a physical therapist. Her voicemail said only that the MRI results are back, and there’s something she’d like to discuss right away. I’ve spent the last forty-five minutes imagining what this something could be. The phone buzzes in my hand and I almost drop it.
The doctor speaks quickly, one second apologizing for the delay, then describing a “suspicious lesion” on my daughter’s femur. She would like bloodwork, right away, she says. Has my daughter had a fever? Malaise? No, no, I say, leaning against the wall. Only the limp.
“It could be osteomyelitis,” she says. The word grips my chest. I have had patients with osteomyelitis, an infection in the bone. Those patients had limbs amputated, weeks of IV antibiotics.
“I hope it’s not osteomyelitis,” I say weakly.
The doctor pauses. In the pause, I hear my heartbeat thudding in my ears, a door clattering open and shut somewhere down the hall. I think of my daughter’s right foot; I need to touch it. “At this point,” the doctor says slowly, “we should probably hope for osteo. If it’s not that, we’ll need to do a biopsy.”
The doctor is giving instructions: labs as soon as possible, a call as soon as lab results are back to discuss the next steps, possibly a referral to an orthopedist who specializes in children’s bone tumors. I try to reply but my voice breaks. I imagine my daughter—ten years old, perpetually in motion, suffused with light—as a patient, bones eaten by aggressive tumors. Scenarios unspool frantically in my brain, all ending with losing my daughter limb by limb.
“How soon can you bring her in?” the doctor asks.
“Now,” I say, reeling myself back to the present, hoping my co-workers can cover my afternoon patients. “I’ll leave right now.”
My daughter’s feet are long and slender like her body. She already wears a women’s size ten, two sizes bigger than mine. When she was an infant, I would cup her tiny feet in my hands, close my fingers around them, and make them disappear. Once she discovered her feet, she loved to hold them too. She’d place a toe or two in her toothless mouth and grin. I marveled at how her toes gripped the floor as she learned to stand, how her feet held her impossibly upright, and then, too soon, propelled her forward. I’ve watched her feet walk, run, leap, kick, skip, pedal, and climb. I’ve massaged them, washed them, placed bandages over blisters and scratches. I cursed them as they outgrew new shoes. I celebrated them when she split a board in half with one kick.
If the lesion is in her femur, just above her knee, and if it requires amputation, everything below it will be lost: knee, calf, shin, ankle, foot.
In February, I noticed her limping. It was subtle at first, possibly just a trick of the eye. She’d mentioned knee pain a few weeks earlier, and I showed her a couple stretches, but it hadn’t come up again. “Try not to limp,” I told her.
“I’m not,” she said.
“Limping just creates new problems in other areas.”
“But it hurts,” she said. I encouraged her, again, to stretch.
A week later, she woke me in the middle of the night. “I can’t sleep. My knee hurts.” I offered her ibuprofen and a hug, and she went back to bed.
By March there was no mistaking her limp. She rarely straightened her right leg all the way anymore. I scheduled an appointment with her doctor, wondering how we’d waited this long.
The doctor calls that evening during dinner to tell me my daughter’s bloodwork is normal; it’s probably not osteomyelitis. I’m somehow not surprised. To my daughter, I say things like “Your blood looks great!” and “It might still be an infection, but it’s less likely, so they need to look at the bone up close to see what’s causing the pain. They’re going to do a special kind of surgery called a biopsy.” I can’t look at my husband, the ER doctor, who knows what I’m not saying: if it’s not an infection, it’s a tumor. In her femur. We have both worked in health care long enough to know that bad things can happen to anyone, but it’s never felt as real as it does now.
The only bone tumors I can think of offhand are osteosarcoma, an aggressive bone cancer, and metastases that originate from another type of cancer. I can’t say any of those words—cancer, metastases, osteosarcoma—out loud, even when I’m alone with my husband. To each other, we say the bad stuff or the scary stuff or something bad.
I’m reminded of my college roommate trying to sell her ancient Honda Civic. With 230,000 miles on it, no one would even consider it until a friend told her about the contrast effect, a phenomenon she’d learned about in psychology class. If you say a bigger number first, she said, it makes the actual number sound like less than it really is. The next time a potential buyer asked about the mileage, my roommate said, “Three hundred twenty thousand—no, wait! I’m so sorry! Two hundred thirty thousand.” The person bought the car. Next to osteosarcoma, a bone infection doesn’t sound that bad. So we hope for osteomyelitis.
We hope for things I never imagined I could hope for.
In the days that follow, I try to be brave for my daughter, and for my six-year-old son, who is worried about his sister. I say yes to extra dessert and more movie nights and an extra chapter at bedtime. I find any way to be close to her until the tangle of love and fear becomes too much and I have to retreat to my room, or my car, or the bathroom, to cry. The guilt grows as we wait. I watch her limp off the school bus with her friends and hate myself for every time I told her she’d be fine, to stretch a little more, to walk it off. The future folds and twists and collapses until all I can see is darkness ahead, no way to know where her path leads, or where it ends.
During this time, I stalk the Facebook page of a teenage boy with leukemia who lives across the country. I happened onto his page through a friend’s post, and now I can’t look away. He is disease free after two stem cell transplants but suffering brutal side effects from rounds of chemotherapy. His lungs are damaged, his liver is malfunctioning, he has no energy. The day the doctor calls me at work, the boy is admitted to the hospital. His mother posts a picture of him on a stretcher, pale and unsmiling but offering a weak thumbs-up. I stare at it for several minutes, longer than I want to admit, shut away in my bedroom, and wonder if I am this woman four years earlier, poised to enter the gauntlet of childhood cancer.
I begin to see omens everywhere, in the relentless, record-breaking rain that ceases the morning of her appointment (hope!), only to start again as we merge onto I-5 (despair). In the distance, the sky is a wall of ominous clouds and we are driving right into it.
We meet with the surgeon, a slender smiling woman in a long white coat who exudes competence. A crowd follows her into the exam room—a fellow, two residents, a med student, a nurse. The surgeon speaks directly to my daughter, who sits on the exam table, fidgeting. With a thin black pen, the surgeon draws a femur on the crinkly white paper covering the exam table. She makes an uneven circle near the base of the bone and scribbles it in—this is the lesion. Next to the femur, she makes a decision tree of all the possibilities—so many more than I realized. At the top, two boxes from which all other possibilities branch: malignant, benign. The biopsy is in two days. We leave with a set of crutches and a stack of pre-surgery instructions.
Two days later, we drive through the predawn darkness to the hospital. In the passenger seat, I check my phone for updates on the boy. He has been transferred to the ICU overnight and may need a ventilator. I reach back for my daughter’s leg, squeeze her calf, and bite my lip, hard, to stop myself from crying. In my mind, this boy’s fate has become linked to my daughter’s, though I’m not yet sure in what way. I don’t want to admit that it is a relief, albeit a strange one, to worry about someone else, someone distant, someone I know only through Facebook, someone who’s fate ultimately will not impact my life at all.
We sit in the surgical waiting area, clutching a plastic pager on a thick nylon cord, staring at a screen on the wall with numbers for every surgical patient that will update when our daughter’s status changes. Minutes earlier, we watched her disappear through a set of automatic double doors, wheeled on a stretcher by a team of nurses and techs, and the image of the boy on the stretcher flashed in my mind.
My thighs won’t stop shaking. I have a notebook in my lap, but I can’t write. I flip through the pages and find a note I scribbled in the margin: “Hope feels like leaning toward something.” The backs of these chairs are oddly angled, forcing us into a perpetual forward lean, but it doesn’t feel like hope at all. It feels like the chair is trying to dump me out, like if I let my guard down, I will fall.
I check for updates on the boy. He is intubated now; his lungs are failing. It feels like another bad omen. I think of his mother and wonder if I have the same emergency reserves of strength. I don’t want to find out.
The surgery lasts longer than we expect. We check our watches, our phones, the pager, the screen. Nothing. Finally, the pager lights up in my lap, and we rush to the receptionist, who directs us to a small empty room. We sit and terror seizes me. I can’t stop shaking. I can’t look at my husband, who is, I think, talking to me. Everything in me is unraveling.
The doctor enters in scrubs and smiles as she sits. “Everything went really well,” she says, and I begin to cry. We will have to wait for pathology, she explains, but a quick look at the cells under a microscope ruled out the worst things. Then she’s shaking our hands and saying she’ll see us next week, and I can breathe again, sort of.
We meet our daughter in recovery where she drunkenly rhapsodizes about a graham cracker the nurse gave her. Soon we are loading her into the car and driving home. The relief I’ve been waiting for creeps in, but it is strange and uncomfortable, not at all what I expected. I can’t stop seeing the stretcher, the hallway, the small room, how close we were to a completely different life.
The boy dies a week later. I read his mother’s post in my car after watching my daughter climb onto the school bus and feel something heavy settle in my chest. I wonder guiltily if in some cosmic twist, this boy’s death allows my daughter to live. She’s walking without crutches already. She starts physical therapy in a couple weeks. This is not how things work, I know. But I cannot think of his suffering, or his mother’s, as wholly separate from us anymore either. I close my eyes, picture the boy and his mother, and say thank you.