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.

The Only One/ The Lucky One

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The 3-D printed model of Lucille’s tumor, a central giant cell granuloma

Yesterday, Lucille became the first person with a central giant cell granuloma to have surgery after an eight-month course of a drug called denosumab. Ground-breaking things were happening in the operating room yesterday. Things that will open up new worlds of treatment for other children suffering from this rare, aggressive, and disfiguring disease.

When your daughter is the only one—the one on which the medical ground is being broken–it’s hard to keep a wide perspective. For you, the opening ground is the ground your family stands on, and it’s been shaky now for one year and nine days.

Your alarm goes off at 4:00 a.m., waking the baby before it wakes you. While you nurse the baby back to sleep, you think of your daughter, of her face, and you pray, or you meditate, or you say, “please.” Or that’s what you try to do.  Instead you keep wondering how her surgeon will even know what her face was supposed to look like. And then you wonder if the news will be good enough for him to follow his plan A, or if this will be a Plan B surgery.  Then you wonder if he is still feeling as optimistic as he was at your daughter’s last pre-op visit.  Then you realize you have spent more time in the last three days thinking about this surgeon, than you have your own husband. Then you wonder—again–how he will even know what her face was supposed to look like.

Of course, the surgeon has told you how he will know. He has looked at data sets of hundreds of jaws of girls your daughter’s age. But data sets don’t mean much to you. Words do. So you try to frame some that will get your daughter from here to the recovery room. Then you ease away from the baby and get dressed in the dark.

You forget to brush your daughter’s hair and your daughter’s teeth. You pull her coat on over her pink snowflake pajamas and sit beside her in the back seat while your husband drives to the hospital. You get lost trying to find patient registration. Your daughter seems calm—remarkably calm. Back in the car, she was even excited.  You all are, in a way.  This surgery is going to get her closer. This surgery is a definite step after all the maybes, no’s, try this’s, and if’s.

Here is today’s if. If the still-experimental drug therapy ossified the tumor into bone, or at least most of the tumor into bone, the surgeon will slice most of it off and re-shape her face.  If not, he will take out as much of the tumor as he can. She won’t look any different, but she will still be moving forward.

Walking up to the surgery floor, you feel the weight of the year your daughter has spent fighting this tumor. But it’s not the kind of weigh that holds you down. It’s the kind you push through, like swimming through water, to move.  The surgeon has been waiting too, through one treatment then another, to get enough bone to do this surgery.

In pre-op, you step into a tiny bathroom to help your daughter change into a gown the color of Caribbean water. It falls to her toes, and with its gaping sleeves and strings, it reminds you of the angel costume she wore for the Christmas pageant.

When you come out, the surgeon is standing in the tiny room, and your daughter starts crying. She cries while you smooth the numbing cream over the veins on the back of her hand. She cries as your husband reminds her why this surgery is a good thing. She cries while the anesthesia nurse starts the IV and slips in the drug to make her relax.

By now, you are lying in the bed with her. You stay there, your arms wrapped around her while your youth minister comes in to say a prayer, while the nurse anesthetist explains what will happen next, while they slip more medication into her IV. You decide you should get out of the bed before they say you have to. So when they open the curtain and the wide glass door, you kiss your daughter. You tell her you will see her as soon as she wakes up.  Then you walk, one hand on the bed rail, one hand on your daughter’s chest, until it is time for you to go one way and her to go another.

Then you wait. You wait with your husband, and your cousin who has taken off work for the day, and your brother who has flown in from Michigan, and your husband’s sister who has flown in from Colorado, and your mother-in-law and her husband, and the youth minister. You wait, and you watch a screen that lists the status of patients in surgery.

The surgeon has promised to send word when he knows which way the surgery is going. You have reminded him of this promise three times. You wait for word. When word comes, the news is confusing. “Plan 2,” the receptionist says.  You watch your husband’s face crumble.

“No,” you say. “Plan 2 was not an option. There was only Plan A or Plan B. Call the OR back, and tell us if he is doing Plan A or Plan B.”

You wait again. The word comes back again: Plan A.

You are sitting opposite your husband in a row of chairs. You look at each other, but you do not hug. Neither of you can risk the other’s touch now. But soon all of the people who have come to sit with you are laughing. And you and your husband are laughing too.

The surgery goes on for almost three more hours. The other names on the screen change status. Your daughter says at “surgery in progress.” You drink tea gone cold, and go use your breast pump, and talk to the people surrounding you. Then, miraculously, the surgeon is standing in the waiting room, smiling.

In a small conference room, he tells you the surgery went better than he hoped. He was able to remove enough to give her a normal jaw. He saved the nerves in her chin, put tissue back where it was supposed to go, reconnected the ligaments, put the crease back into her chin. He tells you how much bony tumor he removed from her mandible. The carved-out pieces measured 5 centimeter, 6 centimeters, 7 centimeters. He pulls out his phone to show you a picture from the OR, after he closed the incision.

Your daughter’s face looks like it did before the tumor.b46fdb65-1dfa-4c2f-aa6a-884cf8736c85

Later, in the recovery room, you climb into bed with her again. Rolled gauze is sticking out of her mouth like two tusks. Blood is dried on her face and on the pressure dressing wrapped around her head. You lay your face against hers, you stare at her chin.  You know there may still be tumor cells to deal with. You know the surgeon is sending every piece he cut from her mandible out to pathology.  You know the results are two weeks away.

But for now, you lay beside her, feeling the warmth of her face on yours, your heart filling with gratitude. You remember your daughter is the only one to have this treatment plan. You remember the other kids you’ve seen in the pediatric oncology clinic. You know your daughter is a lucky one.