When the Doctor has Bad News (Again)

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I was holding my daughter’s hand—again—reaching down to her as she sat in the exam chair in the surgeon’s office—again. Chris, my husband, was there too, as he always is.  And—again—the surgeon was not coming right back. Chris and I looked at each other.  What we did not need to say out loud was that we already knew the surgeon would have bad news. 

Each time the surgeon does not come right back, the news is bad. It had been so for a year and a half, and now, we told each other with our eyes, we knew what to expect. So we took turns holding Lucille’s hand, and we waited.

We know we aren’t the only family to sit in an exam room waiting for more bad news—though that isn’t what I was thinking while were sitting there. The truth is that even while were waiting, countless other families were sitting in their own limbo, waiting for doctors who shouldn’t have been taking so long.

I can’t say exactly what it’s like for everyone, but here is what it’s like for us.

Something Feels Wrong

Lucille was three months past her radical surgery, six months out of drug therapy, and two months into getting back to normal. Everything should have been fine.  But it wasn’t.  She started feeling pain in her jaw.  The pain was intense enough to need Motrin and ice packs, and it was in her mandible—her lower jaw bone—right where the tumor had grown.

We let it go for a few days, telling our daughter and ourselves that everything should be fine.  When we called her surgeon, he advised us to watch her for a few more days.  She had been sick; maybe her jaw was sore from throwing up, or from crushed nerves healing enough to feel again, or from adult teeth coming in.  After all, the pathology that came back after the surgery was perfect—no tumor cells anywhere. But after a few more days, he asked to see her—just to be on the safe side.

So Lucille had a CT scan as soon as we walked into the office. It was April again, and now we were waiting for the surgeon to look at a CT scan, just like we had one year ago, when the surgeon had come in and apologized for keeping us waiting before telling us the tumor had grown, and Lucille would need to start treatment with an oncologist.

Now, as the surgeon finally came back into the room, he said, “Sorry to keep you waiting.  I wanted to take my time looking at the CT.”

So he had bad news for us again.

I wanted to drop the f-bomb but didn’t, not with Lucille sitting in the chair.  In a minute, Lucille’s scan illuminated the screen.  We could see something there, in her jaw, in the middle of the newly-grown bone.

The surgeon went over the options: It could be nothing, just bone growing more densely than the bone around it. It could be bone infection. It could be tumor.  She needed a biopsy. And she needed it soon.

I’ve already written a post about the biopsy waiting game. Each day is an eternity. Other parents have been there.  First, you wait for the day of the biopsy, then you wait through the procedure, then you wait for the results. You Google it just to make sure you aren’t the only family who has waited this long for a biopsy. You recite the possibilities like prayers—dense bone, bone infection, tumor recurrence.

The Morning of the Biopsy

We pulled Lucille out of bed when the dawn light was still grey. She knew this routine; we all did. She brushed her teeth, and we left the house with Lucille still in her pajamas—pink plaid bottoms this time, paired with the pink 1984 Detroit Tigers tee shirt I got when I was her age.

Like her first biopsy fifteen months ago, this one was happening in the small operating room inside the surgeon’s office. Unlike the first one, we knew her surgeon well now, so he let us stay while he slipped the needle into Lucille’s hand to sedate her. Chris and I stood beside our daughter, holding her hands until her pupils dilated, and the surgeon told us what we already know. She was out, and we needed to leave the room.

I’d have stay if he would have let me. I’d always rather see what is happening to her. But parents aren’t allowed in operating rooms.

In the waiting room, we think things are taking too long. Each time the surgeon does not come right back…

“He must be doing more than the biopsy,” I said.

“I know,” Chris answered.  The surgeon had warned us that if he got inside her bone and saw what was clearly either tumor or infection, he’d widen the incision and remove all he could.

Chris and I have gotten into the habit of not touching each other in waiting rooms.  Having a critically ill child is hard on a marriage.  You forget you are the kind of people who like holding hands. You forget you are the kind of couple who can do anything with each other except hold your family together.

The wait continued, and we didn’t say much else.  After a time—who knew how long?—we looked at each other and spoke enough to agree that the news was definitely bad. And just then the surgeon’s assistant, still smocked, came to bring us to a consultation room.

When the surgeon came in, he wasn’t smiling. (After her radical surgery three months ago, his grin had been the first thing we noticed).

Now, he uttered some preemptive word, like “well.” But I beat him to the punch and said, “You had to do more than a biopsy.”

The surgeon began explaining. The bone looked great.  It killed him (this was the phrase he actually used) to put a hole in the beautiful new bone. But drill a hole he did. And he came to a hollow space.  And it was filled with what looked like mononucleated giant cells. The cells that, in Lucille’s case, make a central giant cell granuloma.

“It looks like tumor recurrence or multiple recurrences,” the surgeon said and went on to explain that it was possible the cells were infection, not tumor. Either way, the news would be bad.

Under the table, I reached for Chris’ hand. His fingers folded around mine.

The Bad News Comes

Knowing the news will be bad, either way, we wondered which we should hope for:  Bone infection or tumor. This time, the wait seemed longer than Lucille’s first two biopsies.  Though it ended up being the shortest by over a week.  Lucille was still recovering from the surgery when the news came in.

Lucille’s surgeon is a nice person, and Lucille is a special case, so the phone call lasted for nearly half an hour.  He told me she would have been more likely to lose her jaw if the cells had been a bone infection. He told me he removed the tumor during the surgery, but the surgery won’t be enough: Tumor cells were certainly still there. He assured me we caught the recurrence early. But still, Lucille would need more drug therapy.

Facing the Immediate Future

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Lucille bringing her new dog home from the pound. We hope pet ownership will help her face the tumor recurrence. 

In the days to follow we will face the complex web of consequences and decisions brought on by this re-diagnosis. We will talk about oncology options and a feeding tube. We will calculate weight loss. We will hand our daughter antibiotics and probiotics as her body fights a post-surgery infection. We will adopt a dog.  And through all of this, our brave girl and her brave face will absorb the news.

 

The tumor is back. The biopsy shows central giant cell granuloma tumor cells, a recurrence. Lucille is going back to pediatric oncology. Her beautiful, brave face will continue to fight.

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The Biopsy Waiting Game

651E8626-4585-41A7-A26F-A2BE7AF66F1AFirst, you wait. As anyone who has become an oncology patient knows, the biopsy comes first. You have the biopsy—or your child has the biopsy—and then you spend your hours thinking not so much about what the pathologist is doing, as what the results will mean for your life.

When Lucille had her first biopsy, a year ago, we knew she had a solid tumor in her face. We were waiting to find out if the tumor was cancer or what it turned out to be, a central giant cell granuloma. I don’t remember much about what I was thinking that day. Our third child was four days old—I was exhausted and still leaking from everywhere. But I do remember wearing the baby in his sling, kissing Lucille before they sedated her, and thinking everything would be okay as long as it wasn’t cancer.

That day, everyone, even the surgeon, was still referring to Lucille’s tumor as a “mass,” and we had not realized how fundamentally a benign tumor could change our lives. We had not imagined how large the tumor would grow or how disfigured our daughter’s face would become. We did not know that some people with benign tumors still became oncology patients. We thought that if a tumor was benign, most of its effect would be benign, too.

—-

One year later, we got it. This time, as we waited for pathology results, what was on the line was the oncology: the need—or not—for more drug therapy. Lucille had spent eight months on a drug called denosumab, still experimental in its use for this kind of tumor, risky, but not chemo. If she needed more drug therapy now, chemotherapy was looming as one possibility.

This time, we weren’t waiting for a biopsy, exactly. This time, the surgeon had cut most of the bony tumor from Lucille’s chin and had sent every chunk to the pathologist. This time, everyone was hoping the drug therapy had turned the giant cell tumor tissue into bone tissue, at least around the parts that had been touching the tissue the surgeon had left behind to form her new jaw.

This pathology wait began with Lucille’s recovery from a radical surgery. Helping Lucille through the beginning of her recovery buoyed us through the first week of waiting. This time, I did think about what the pathologist was doing. So did Lucille’s surgeon, who told us at her five day follow-up and her eight day follow-up that it takes a long time to slice up so much bony tumor into readable sections.

So Lucille continued a difficult recovery, and we waited. And we waited. Another thing anyone who has waited for a biopsy—or any kind of pathology report—knows is that the rest of your life keeps going. The rest of your life doesn’t care what the pathologist is doing. The kids—including the one recovering from a radical surgery—still need to be fed. The important emails from work still need your response.  The fight you are having with your health insurance company still needs to be fought.

So we waited. My husband, Chris, and I went back to work. I won one skirmish with the insurance company. Lucille progressed from a liquid diet to soft foods. We prayed, and we hoped.  We tried not to get irritable with each other. The surgeon emailed the pathologist to check in. The surgeon promised he would call me as soon as he got word. I carried my phone to class and apologized to my students when I had to look to see who was calling.

Lucille read and colored, took a lot of selfies, and wrote a story on her Chromebook. Nicolas went to preschool. Wade teethed a lot. The kids and I went for walks and played a lot of snorffle-tickle-monster. Friends and strangers sent cards and meals and gifts and flowers. We read and ate and opened and appreciated. And we waited.

And then, like most of the other times in my life when I’ve been waiting for news, the news came at the exact moment I’d forgotten to think of it. I’d just gotten back from class, where I had forgotten to bring my phone. I sat down in my office, and heard my phone vibrating from inside my desk. It was Lucille’s surgeon.

He had just that instant gotten off the phone with the pathologist. I could tell from the sound of his voice that the news was good. I did not get up to close my office door. I sat and listened. The news was better than good. There were no giant cells anywhere, not anywhere at all. Not in the border tissue, not in the tissue deeper into the tumor. Not even in the small, snowman-shaped declivity everyone thought would probably still hold some tumor cells inside.

“Do we need a second pair of eyes?” I asked, wondering if another pathologist should give a second opinion. Funny how sometimes good news can be just as unbelievable as bad.

But an entire pathology team had studied her tumor and with special interest. (She was, after all, a very special case.) No, we did not need to get another opinion. We did not need to make another difficult drug therapy choice. We did not need to do anything but stop waiting.

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.

 

30 Things You Should Know About Lucille

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  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.

Surgery for this Child’s Face

Lucille waiting for her surgeon

We are sitting in the oral surgeon’s office—my seven-year-old, my husband, and I, in a room that looks like any room in a dentist’s office, down to the chair. Lucille is sitting in the chair, nervous, her neck tensed, making her enlarged chin jut out even more than usual. In my own nervousness, I keep treading on the foot pedal, elevating Lucille by increments while I rub her back.

But we are not in a dentist’s office. This office has its own operating room, a CT scan, and the doctor, who, on good authority, is the only person equipped to surgically handle what has become of Lucille’s face. Right now, we are waiting for this surgeon to come in and tell us what the CT scan has to show.

We all think the tumor has gotten smaller. The oncologist and his nurse practitioner, the nurses on the solid tumor team, the child life specialist, my husband and me, and Lucille herself all think her jaw looks and feels different. Think, not hope, though there is plenty of that too.

For eight months now, Lucille has been on a drug therapy still in its experimental stages for children with this tumor. The drug is called denosumab, and it comes with its own set of risks. The risks alone are a topic for another blog post.  But she’s been on the drug for eight months. Staying on the denosumab much longer may not be safe, and it’s time to see if the drug therapy is working, at least enough to make a surgery less risky.

So we are nervous waiting for the surgeon but optimistic too. We are so hopeful, in fact, that we snap a picture of Lucille. She smiles in the chair, while we tell her it’s time to move on to the next step.

When the surgeon walks in, he greets Lucille first, with a warm smile and a gentle fist-bump. He is a kind man and seems genuinely invested in Lucille, who is a special case. She has a rare tumor (a central giant cell granuloma), and the giant cells in her jaw are aggressive in a way that makes the tumor even more rare.

“It’s been a while,” the surgeon says, and it has. The last time we sat in this office, he told us Lucille’s tumor had grown half a centimeter, despite the standard course of treatment she’d undergone for three months. In those early days of Lucille’s tumor battle, this surgeon had sedated her and injected a high-dose steroid directly into the tumor. He did this seven times and gave up the day he was scheduled to inject the last dose.   Then he found Lucille an oncologist, researched the drug therapy options, and helped my husband and me make the toughest decisions we have faced as parents.

Now we’re back, shaking this surgeon’s hand and waiting for him to turn on the computer screen. A couple of clicks and there is Lucille’s CT scan, her jaw interrupted, the tumor big and round as ever.

The surgeon is silent for a few seconds. He clicks from image to image. His silence is a counterpoint to the hope we’d felt a few minutes earlier. I squeeze Lucille’s hand and stare at the screen, waiting.

“The tumor hasn’t gotten any smaller,” the surgeon says. I move my hands to Lucille’s shoulders, accidentally bump the pedal with my foot. The chair lifts my daughter half an inch higher. Without meaning to, I hold my breath.  I can’t look at my husband. 8c693cea-3c82-42f8-82b2-6d248367c2b2

“But,” the surgeon continues, “There is bone here now.” I exhale as the surgeon points to a thin, white line and explains that there is enough bone now to do the surgery with a much lower risk of fracturing her jaw. As he talks, my hands move instinctively to Lucille’s chin. I hold her there, tumor and all, until she shakes her head.

Lucille doesn’t want to have surgery.

Lucille doesn’t want to have a tumor either, or a rare disease. Nor does she want to be a child with a disfigured face.

But the giant cells have taken over her mandible—her lower jaw bone. This surgery will be the next move in what feels like an ever-changing treatment plan. When your child has a , you learn to be flexible. You learn to take bad news alongside other possibilities: The standard treatment failed for Lucille’s tumor, but there was a new drug therapy option. The new drug therapy hasn’t made the tumor smaller, but it has produced a line of bone on the outside of her jaw. You learn to feel relieved when a physician says your child is ready to have surgery.

This line of bone becomes the focus of our meeting with the surgeon. He tells us he will live this strong bone on the outside of her jaw in tact. That thin, white line we see on the screen should keep her jaw from fracturing during the surgery. He will make incisions inside her lower-lip, where the tumor is large and the tissue soft.  He will “scoop out” as much of the tumor as he can. He will not do anything to compromise that thin white line.  He will wire a plate inside her mouth to protect that line of bone, so Lucille doesn’t accidentally breaking her own jaw as she recovers.  “We wouldn’t want her to feel good enough to eat an apple, then fracture her jaw when she bites it.”

“No,” I say, imagining a closed airway, a frantic 911 call, the apple on the floor. I wrap my arms around Lucille, tread on the pedal again. The conversation continues.  Lucille stays silent. My husband and I agree to the surgery plan and ask our questions. I know I will have more later—I always do.

I blink back tears at least once before we leave the office. Without looking at his face, I know my husband has blinked too.  These days, we are always trying not to cry. Lucille isn’t crying though.

Lucille will cry later. Or she’ll cry tomorrow. And the tears will be about something silly like not being able to find a jelly bracelet. She will be angry too. When she runs to us, shouting about the lost bracelet and dripping tears down her cheeks, we will hold her and tell her it is okay to feel scared and angry and sad.  We will help her look for the bracelet.  Then we will say that surgery is scary, and we are mad about it too. We will also remind Lucille and each other that this surgery is the next step in fighting her tumor.  We will tell her that we trust her surgeon and we all need to trust each other.  We will remind Lucille—and each other— that we all have to be brave and that the surgery is a good thing.

This surgery means Lucille will spend less time on drug therapy. It means her jaw bone will have a better chance of recovering cosmetically.  Being able to have this surgery now means the drug therapy has worked—at least enough to get us here. It means Lucille will have a better chance of looking how she would have looked if a central giant cell granuloma had not happened to her face.

 

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.