Today 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.
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.