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.

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.