Parenting a Child Recovering from Surgery

e45a7cac-2031-46b3-bba0-30b3b932f874Today we ate breakfast with Lucille at La Peep, the same restaurant we’d taken her to nine months ago. On that morning, her surgeon had taken a CT scan and given us the disturbing news that her tumor, a central giant cell granuloma, had grown half a centimeter, despite eight weeks of intra-tumor injections of a high-dose steroid. Our next stop would be pediatric oncology, but first, we would eat pancakes. That morning, we did not realize what lay ahead for Lucille. (“It’s a benign tumor,” we’d whispered to each other more than once. “How bad can this really get?”)

But now, nine months later, we have just finished Lucille’s first post-op appointment with her surgeon, and we are sitting in another booth at La Peep. We are still parenting a child with a rare disease, but now she is recovering from a radical and successful surgery. So much of her battle against this tumor is suddenly, miraculously, behind us.

“Pancakes?” we ask. Today we are working on eating solid foods and drinking with a straw instead of a syringe.

“Yes,” Lucille says. She wants the funny face pancakes with fruit and whipped cream, which is what she ordered nine months ago.

She wants a chocolate shake to drink. We are still in the get-as-many-calories-into-our-kid-as-possible phase of Lucille’s recovery. Two days ago, we were feeding her Pediasure, with a syringe, milliliter by milliliter. Sugar and carbohydrates for breakfast? No problem, as long as she can eat them herself.

Lucille talks to us from behind a hospital mask as we wait for our coffees and her milkshake. It’s hard to understand what she is saying. Her bottom lip is still swollen and numb.  She is wearing the mask because she is embarrassed by the way her face looks. “Swollen” is the only word for it, but it doesn’t really articulate what is happening here.

The day we left the hospital, her bottom lip looked like a balloon, the long kind balloon artists twist into flowers or unicorns. The rest of her face was just as big. The swelling goes down a little every day, but not enough to make her feel normal, even by her pre-surgery, disfigured-face standards.

Then there is the drooling, which happens because she can neither close her lips nor feel them. And, until today, blood was still leaking from the incision inside her mouth and falling down onto her swollen chin. And the sutures, which are also iniside her mouth, are still clearly visible with all the open-lipped swelling.

We keep telling Lucille how beautiful she is and how swelling after a surgery is normal. But this doesn’t feel normal to Lucille. Nothing about a rare disease is “normal.” Neither, really, was the surgery itself.

But Lucille is a special girl in more ways than her disease. She’s smart too, and she came up with the idea of covering her mouth with a hospital mask, so she can feel normal when we go out in public, or when visitors come to our house. We complemented her on solving a problem for herself, and went to a drug store to buy a box of masks.8f4fd1c8-2596-4ad6-a766-224b36a0b0ea

The rest of her recovery is beginning to feel normal, too, or at least we’ve gotten into a routine. At night, we prop her up on pillows and tuck a towel under her chin to catch the blood. One of us sleeps beside her, just in case. We give her the meds. During the day, we make sure she is hydrated and nourished. We keep her masks and her syringes and her meds on a Winnie the Pooh tray. We squirt water into her mouth. We teach her to use the syringes herself. We encourage her to try a straw, to try a sip, to try taking a bite.

I rub coconut oil on across her lips to keep them from cracking. I rub it onto her chin to keep the skin from peeling. When food and chocolate milk and Pediasure and blood collect above the soft stretch of tissue and incision between her teeth and her lip, we flush her mouth with water and mint-flavored chlorhexidine. We clean gently with oral swabs. We help her brush her teeth.

Under all the swelling is a chin shaped like a normal one. And above her mask, Lucille’s eyes spend time smiling. Parenting a child recovering from a radical surgery is exhausting. And surprising. Ditto for parenting a child with a rare disease. But when is parenting not these things?

So we’ll take it. And like we have every day for the last 380 days, we will celebrate the gains, even the tiny ones. We will blend this part of life with all the rest of it.

There may still be giant cells—tumor cells—to deal with. There is the high recurrence rate—over 20 percent—to be reckoned with. There may be other surgeries to finish reshaping the bone. There will be orthodontia not—as her surgeon puts it—for the faint of heart. There is still extra tissue growing on her chin and inside her lip. But for now, she is recovering. And we will take it day by day.

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.