We are sitting in the oral surgeon’s office—my seven-year-old, my husband, and I, in a room that looks like any room in a dentist’s office, down to the chair. Lucille is sitting in the chair, nervous, her neck tensed, making her enlarged chin jut out even more than usual. In my own nervousness, I keep treading on the foot pedal, elevating Lucille by increments while I rub her back.
But we are not in a dentist’s office. This office has its own operating room, a CT scan, and the doctor, who, on good authority, is the only person equipped to surgically handle what has become of Lucille’s face. Right now, we are waiting for this surgeon to come in and tell us what the CT scan has to show.
We all think the tumor has gotten smaller. The oncologist and his nurse practitioner, the nurses on the solid tumor team, the child life specialist, my husband and me, and Lucille herself all think her jaw looks and feels different. Think, not hope, though there is plenty of that too.
For eight months now, Lucille has been on a drug therapy still in its experimental stages for children with this tumor. The drug is called denosumab, and it comes with its own set of risks. The risks alone are a topic for another blog post. But she’s been on the drug for eight months. Staying on the denosumab much longer may not be safe, and it’s time to see if the drug therapy is working, at least enough to make a surgery less risky.
So we are nervous waiting for the surgeon but optimistic too. We are so hopeful, in fact, that we snap a picture of Lucille. She smiles in the chair, while we tell her it’s time to move on to the next step.
When the surgeon walks in, he greets Lucille first, with a warm smile and a gentle fist-bump. He is a kind man and seems genuinely invested in Lucille, who is a special case. She has a rare tumor (a central giant cell granuloma), and the giant cells in her jaw are aggressive in a way that makes the tumor even more rare.
“It’s been a while,” the surgeon says, and it has. The last time we sat in this office, he told us Lucille’s tumor had grown half a centimeter, despite the standard course of treatment she’d undergone for three months. In those early days of Lucille’s tumor battle, this surgeon had sedated her and injected a high-dose steroid directly into the tumor. He did this seven times and gave up the day he was scheduled to inject the last dose. Then he found Lucille an oncologist, researched the drug therapy options, and helped my husband and me make the toughest decisions we have faced as parents.
Now we’re back, shaking this surgeon’s hand and waiting for him to turn on the computer screen. A couple of clicks and there is Lucille’s CT scan, her jaw interrupted, the tumor big and round as ever.
The surgeon is silent for a few seconds. He clicks from image to image. His silence is a counterpoint to the hope we’d felt a few minutes earlier. I squeeze Lucille’s hand and stare at the screen, waiting.
“The tumor hasn’t gotten any smaller,” the surgeon says. I move my hands to Lucille’s shoulders, accidentally bump the pedal with my foot. The chair lifts my daughter half an inch higher. Without meaning to, I hold my breath. I can’t look at my husband.
“But,” the surgeon continues, “There is bone here now.” I exhale as the surgeon points to a thin, white line and explains that there is enough bone now to do the surgery with a much lower risk of fracturing her jaw. As he talks, my hands move instinctively to Lucille’s chin. I hold her there, tumor and all, until she shakes her head.
Lucille doesn’t want to have surgery.
Lucille doesn’t want to have a tumor either, or a rare disease. Nor does she want to be a child with a disfigured face.
But the giant cells have taken over her mandible—her lower jaw bone. This surgery will be the next move in what feels like an ever-changing treatment plan. When your child has a tumor, you learn to be flexible. You learn to take bad news alongside other possibilities: The standard treatment failed for Lucille’s tumor, but there was a new drug therapy option. The new drug therapy hasn’t made the tumor smaller, but it has produced a line of bone on the outside of her jaw. You learn to feel relieved when a physician says your child is ready to have surgery.
This line of bone becomes the focus of our meeting with the surgeon. He tells us he will live this strong bone on the outside of her jaw in tact. That thin, white line we see on the screen should keep her jaw from fracturing during the surgery. He will make incisions inside her lower-lip, where the tumor is large and the tissue soft. He will “scoop out” as much of the tumor as he can. He will not do anything to compromise that thin white line. He will wire a plate inside her mouth to protect that line of bone, so Lucille doesn’t accidentally breaking her own jaw as she recovers. “We wouldn’t want her to feel good enough to eat an apple, then fracture her jaw when she bites it.”
“No,” I say, imagining a closed airway, a frantic 911 call, the apple on the floor. I wrap my arms around Lucille, tread on the pedal again. The conversation continues. Lucille stays silent. My husband and I agree to the surgery plan and ask our questions. I know I will have more later—I always do.
I blink back tears at least once before we leave the office. Without looking at his face, I know my husband has blinked too. These days, we are always trying not to cry. Lucille isn’t crying though.
Lucille will cry later. Or she’ll cry tomorrow. And the tears will be about something silly like not being able to find a jelly bracelet. She will be angry too. When she runs to us, shouting about the lost bracelet and dripping tears down her cheeks, we will hold her and tell her it is okay to feel scared and angry and sad. We will help her look for the bracelet. Then we will say that surgery is scary, and we are mad about it too. We will also remind Lucille and each other that this surgery is the next step in fighting her tumor. We will tell her that we trust her surgeon and we all need to trust each other. We will remind Lucille—and each other— that we all have to be brave and that the surgery is a good thing.
This surgery means Lucille will spend less time on drug therapy. It means her jaw bone will have a better chance of recovering cosmetically. Being able to have this surgery now means the drug therapy has worked—at least enough to get us here. It means Lucille will have a better chance of looking how she would have looked if a central giant cell granuloma had not happened to her face.