Surgery for this Child’s Face

Lucille waiting for her surgeon

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. 8c693cea-3c82-42f8-82b2-6d248367c2b2

“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.

They Say She Looks Like a Boy

 

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Lucille on her first day of second grade and seven months into her battle against the tumor.

 

Lucille stood in her room, surrounded by a pile of discarded uniform options, her frustration welling into tears.

“I have to wear a skirt,” she said, kicking a pair of uniform shorts across the wood floor.

“But you love shorts,” I said, trying to hand her a comfy looking pair. This was only the second week of school, early September in North Carolina, where we are still broiling in summer heat.

“No,” she said batting my hand away.

By now, I was frustrated too. The minutes were ticking down toward eight o’clock, and she still had to eat breakfast, brush her teeth, and find her shoes. Generally, we aren’t a family known for punctuality. But we make an effort to get the kids to school on time. Anyway, I thought, good parents probably don’t let their kids get tardy marks during the second week of second grade.

“Lucille,” I countered, my voice rising in my own frustration. “We just bought you all these new shorts to wear to school.” And here they were all in the prescribed khaki and navy, piled up on the floor. Lucille attends a public school with a uniform policy, and buying enough pairs of uniform shorts to get through these last weeks of heat had been an end-of-summer-break priority.

“I need a skirt,” Lucille insisted, her enlarged chin jutting out, reminding me to be gentle.

“Why?”

“They say I look like a boy.”

So there it was. And here we were.

“Tell me about it,” I said, cupping her face in my hand, holding the bone that holds the tumor.                                                                  87778AFD-978F-40DB-A31C-30079B72ACEA

It hadn’t happened in second grade yet, but hearing people’s comments about her face was nothing new. Well-intentioned, ill-intentioned, or innocent, the comments came. A chiropractor asked if Lucille had Lion’s disease and suggested we watch the movie Mask.  Two smirking kids at the pool had pointed to Lucille’s face, called her “bigmouth,” and asked what she had swallowed. A tiny child in a public restroom simply asked “What happened to your face?” And on.  So, too, many, many people, who know and love us have said, “She’s still pretty.”

Still. Right. Here we are.

Lucille has a tumor, specifically a central giant cell reparative granuloma. It is lodged in the middle of her lower jaw bone. It is rare. It is aggressive. It is benign. It is not cancer, but it behaves like a cancer in many ways.

What does it look like? Lucille’s surgeon and her oncologist measure in centimeters and speak of facial disfigurement. I think the tumor looks like a ripe apple, wrapped in skin, right at the place where, a year ago, Lucille had a normal chin.

So here Lucille and I were, facing each other in her room on a busy fall morning. Her tumor stood between us and the rest of the day. If she didn’t get dressed now, she’d be late for school, and I’d be late for work. She turned her face to look out the window. In profile, and I could see so clearly how she looked to the rest of the world. Her pretty, disfigured face. Her elongated apple-chin. She looked like a caricature of herself.

Tardy-shmardy. Oh well.

I put my arms around my daughter and walked with her to the bed. We sat down on her purple comforter and talked about the fact that she doesn’t look like everyone else. We talked about body diversity and all the different body shapes Lucille sees at school. We talked about wheel chairs. We talked about skin color. We talked about braces and glasses. We talked about freckles and birthmarks. We talked about hair.

We all have to deal with a lack of acceptance sometimes. We all face naysayers, about the way we look, the choices we make, the clothing we wear. And the list goes on. We face the naysayers, and we cannot let their words have power over us.  I had hoped my daughter would not have to learn this lesson at seven. And I had simply not imagined she would have to learn it while battling a disfiguring disease.  But what I needed to help my daughter understand this morning was not so different from what other parents help their children understand in the face of teasing and bullying.

I held my daughter and let her cry in the safety of my arms. When the tears passed, I explained that she is beautiful and that there will always be people who don’t look like everyone else.

“Lucille, not looking like everyone else will always be okay,” I said. “Sometimes, not looking like everyone else is even a good thing.” I also told her that there are times when we all have to face someone who says something mean. I told her that living with this tumor in her jaw was going to help her learn how to ignore bullies and meanies and be a good friend to other people who look different. I told her she was strong and that I had her back.

Then I helped her pick out a pretty uniform skirt and a pretty purple necklace and a pretty headband. She went to school, late but present, and willing to face the day.

The Face Becomes Brave

 

The Face of Bravery journey began in January, 2018, when Lucille was diagnosed with a rare and disfiguring tumor that has changed her face. We did not know, then, how far the journey would take us or how brave the face would become.

We are battling the tumor together, as a family. We invite other brave faces to join us on this journey.  Leave us comments, send us an email, tell us your stories, too. E0A560A6-1ACE-47FF-9026-CA432834AC0D