The Only One/ The Lucky One

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.



30 Things You Should Know About Lucille


  1. She is seven.
  2. She loves to dance.
  3. At Christmas, she danced as a Gumdrop in the Nutcracker.
  4. She listens Johnny Cash, especially Ring of Fire and Folsom Prison Blues.
  5. She has a rare disease. A central giant cell granuloma has taken over her mandible.
  6. She has two little brothers, five and one.
  7. Her wavy, dirty-blond hair curls into ringlets when it gets humid.
  8. Now, she has a disfigured face, but her brown eyes still look like mine.
  9. She has my husband’s lips.
  10. Tomorrow, she is having a radical surgery.
  11. Before the tumor, she had my mother’s chin.
  12. Her favorite meal is spanakopita.
  13. She delights in chocolate–in all its forms.
  14. She believes in Heaven but isn’t sure it sounds very fun.
  15. To make this surgery a viable possibility, she spent eight months on a drug called deonsumab.
  16. In second grade, her favorite specials are P.E., science, and art.
  17. She does not like learning Spanish.
  18. She reads two and a half years ahead of her grade, but she likes to read for pleasure, not school.
  19. At the pediatric oncology clinic, the child life specialist gives her Beads of Courage. Her strand is growing long.
  20. A Poopsie Surprise Unicorn and a Chrome Book were her favorite Christmas presents.
  21. Her favorite restaurants are Chick-fil-A and Yafo.
  22. She likes staying in hotels, especially the ones that serve breakfast.
  23. She’s not bad with a hula hoop.
  24. She makes beaded jewelry, and her favorite colors are hot pink, purple, and turquoise.DCEBDF84-DAA6-4EB4-B2D8-B891201F0602
  25. She has become one of the bravest people I know.
  26. Most days, if you saw her when she wasn’t nauseous and didn’t look at her face, you’d think she was a normal kid.
  27. She wishes people would stop pointing.
  28. Her surgeon has been slicing up 3-D printed models of her jaw: He has a Plan A and a Plan B.
  29. We are all hoping for Plan A: complete removal of the tumor and reshaping of her jaw.
  30. When she wakes up tomorrow afternoon, she may have a different face.