Published on October 14th, 2019 | by Erin Pushman1
Be Brave: Facing My Child’s Surgery
This is the second part in a series by Erin Pushman, about her daughter Lucille and the benign facial tumor that complicates both of their lives. You can read the first part here. Reprinted with permission from her blog, The Face of Bravery.
We are sitting in the oral surgeon’s office—my seven-year-old, my husband, Chris, 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, and Dr. Brian Tallent, 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 Dr. Tallent to come in and tell us what the CT scan has to show.
Everyone who matters thinks the tumor has gotten smaller. The oncologist and his nurse practitioner, the nurses on the solid-tumor team, the child life specialist, Chris, and I—and Lucille herself–we 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 post. 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 Dr. Tallent, but optimistic too. Chris and I are so hopeful 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 Dr. Tallent walks in, he greets Lucille first, with a warm smile and a fist-bump. He is a kind man and seems 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 rarer.
“It’s been a while,” Dr. Tallent says, and it has. The last time we sat in his 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, Dr. Tallent 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 Chris and me make the toughest decisions we have faced as parents.
Now we’re back, shaking Dr. Tallent’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.
Dr. Tallent 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,” Dr. Tallent 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 Chris.
“But,” Dr. Tallent continues, “There is bone here now.” I exhale as he points to a thin, white line and tells us there is enough bone to do the surgery and lower its attendant risks. The surgery will be a radical one, and it will happen in a hospital operating room. 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 an edge of bone. You learn to feel relieved when a doctor says it’s time to book an operating room for your child.
This line of bone becomes the focus of our meeting with Dr. Tallent. He tells us he will leave this strong bone on the outside of her jaw intact. 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 break 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,” Dr. Tallent says.
“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.
For now, I absorb the big picture. This surgery means Lucille will spend less time on drug therapy. It means her jaw bone will have a better chance of recovering cosmetically. It means Lucille might soon start to look the way she would have looked if a central giant cell granuloma had not happened to her face.
I blink to resist tears at least once before we leave the office. Without looking at him, I know Chris has blinked too. These days, we are always trying not to cry.
Lucille will cry later. Or she’ll cry tomorrow. And the tears will be about something silly like not being able to find one of her rainbow jelly bracelets. She will be angry too. When she runs to us, shouting about the lost bracelet and dripping tears, we will hold her and tell her it is okay to feel scared and angry and sad. We will help her look for her bracelet.
“Surgery is scary,” we will say. “We feel mad, too.” Then we remind Lucille–and each other–that this surgery is the next step in fighting her tumor. “We trust Dr. Tallent,” we will tell her. “And we all need to trust each other.”
“Be brave,” we will say at bedtime, at dinner time, as we leave the house for the day, as we hear her crying, as we calm her anger. At night, while our children sleep, Chris and I will tell each other to be brave, too.
We will count down the days to her surgery, even as we try not to count them. The week before her surgery, we will turn her baby brother’s first birthday into a good-luck-Lucille party. The evening before her surgery, my brother and Chris’ sister will fly in, and we will eat Chick-Fil-A and listen to Kidz Bop.
And every day between the meeting in Dr. Tallent’s office and the morning of her surgery, we will have the “be brave,” conversation, sometimes in a few sentences, sometimes in a tearful talk, sometimes whispered with a hug. “Be brave,” we will say, until the rhythm of those words runs through our house like a heartbeat.