Published on October 28th, 2019 | by Erin Pushman1
The Only One/The Lucky One
This is the third part in a series by Erin Pushman, about her daughter Lucille and the benign facial tumor that complicates both of their lives. You can read the first part here and the second part here. Reprinted with permission from her blog, The Face of Bravery.
On January eighteenth, 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 happened in the operating room that day. Things that would 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 bring 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. That was when a doctor first mentioned the word, “biopsy,” and the first tremors of this tumor rippled through your family’s life.
The morning of the surgery. 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, of her name—Lucille—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, Dr. Tallent, will even know what Lucille’s face was supposed to look like. And then you wonder if, once he opens Lucille’s face, the news will be good enough for him to follow his plan A, or if this will be a Plan B surgery. You wonder if he is still feeling as optimistic as he was at the last pre-op visit. Then you realize you have spent more time in the last three days thinking about this man, than you have your own husband.
Then you wonder—again—how this man will even know what Lucille’s face was supposed to look like.
Of course, Dr. Tallent has told you how he will know. He has looked at data sets of hundreds of jaws of girls Lucille’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 Lucille’s hair and Lucille’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. Lucille 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, Dr. Tallent will slice most of the tumor off and re-shape Lucille’s face. If not, he will take out as much of the tumor as he can. Lucille 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 Lucille has spent living against this tumor. But it’s not the kind of weight that holds you down. It’s the kind you push through, like swimming through water, to move. Dr. Tallent has been waiting too, through one treatment then another, waiting for the drugs to give him enough bone in Lucille’s mandible to do this surgery. In pre-op, you can’t stop touching that mandible. You cup Lucille’s lower jaw and kiss her chin and visualize the thin bony line beneath the tumor. Until, at the nurse’s request, you step into a tiny bathroom to help Lucille change into a gown the color of Caribbean water. The gown falls to her toes, and with its gaping sleeves and strings, it reminds you of the angel costume she wore for the Christmas pageant a few weeks ago.
When you emerge from the bathroom with Lucille, Dr. Tallent is standing in the tiny pre-op room. Lucille 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 nurse starts the IV and slips the first drug into her vein.
By now, you are lying in the bed with Lucille. 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 beyond it, you kiss her. You tell her you will see her as soon as she wakes up. You walk, one hand on the bed rail, one hand on Lucille’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.
Dr. Tallent 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. The receptionist turns away.
“Wait,” you say. The receptionist turns around. Your husband watches your mouth. “Plan 2 was not an option,” you tell the receptionist. She starts to speak, but you interrupt her. “There was only Plan A or Plan B. Call the OR back, and tell us if he is doing Plan A or Plan B. Please.” The receptionist agrees.
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. Lucille’s name stays at “surgery in progress.” You drink tea gone cold, and go use your breast pump, and talk to the people surrounding you. Then, miraculously, Dr. Tallent is standing in the waiting room, smiling.
In a small conference room, he tells you the surgery went better than he hoped. The tumor looked and felt like bone. He was able to remove enough to give Lucille a normal-looking jaw. He saved the nerves in her chin, put tissue back where it was supposed to go, reconnected the ligaments, tucked skin were it would natural, even put the crease back into the place between lower lip and chin.
When Dr. Tallent tells you how much bony tumor he removed from Lucille’s mandible, the numbers seem impossible. The carved-out pieces measured five centimeters, six centimeters, seven centimeters. While you try to translate those numbers into a new idea of Lucille’s face, Dr. Tallent pulls out his phone. What he shows you is a picture from the operating room, after he closed the incision.
Lucille’s face is not disfigured anymore.
Later, in the recovery room, you climb into bed with her again. Rolled gauze sticks out of Lucille’s 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 Dr. Tallent is sending every piece he cut from Lucille’s mandible out to pathology. You know the results are two weeks away.
But for now, you lay beside your daughter, feeling the warmth of her face on yours. You put your hands on the blanket covering your Lucille’s chest. Your fingers feel the electrodes still monitoring her heartbeat. You remember the months of drug therapy and the web of tests, results, consultations, and decisions that brought Lucille to surgery this morning. You move your hands around until you can feel her heartbeat for yourself. You know Lucille is the only one to have this exact treatment plan—eight months of denosumab, three months of drug holiday, one radical surgery. Under your palm, Lucille’s heartbeat answers your own. You remember how the tumor turned her face into one you did not recognize. You think of the photo on Dr. Tallent’s phone. You move your face away from hers enough to peek at her bandaged jaw. Then you close your eyes and rest against her. Beat-beat; beat-beat. You have just understood Lucille is a lucky one.