CT Scans, X-rays, and MRIs : My Child in a Series of Medical Images

I’ve always turned away from disturbing images, in movies, in newspaper photos, online.  Even during the season of Halloween, when haunted houses and yard displays tend more and more toward the violent or macabre, our family sticks with a home-made ghost fashioned from old gauzy curtains and cheese cloth. With the tumor lodged in Lucille’s jaw, though, our family has entered a new era of frightening scenes.

1 & 2: CT, January 2018

Lucille was a few weeks shy of her seventh birthday when she began the process of diagnosing the central giant cell granuloma in her jaw. The first scan, taken in an oral surgeon’s office, showed a bony tumor in her mandible, interrupting what had been the pretty curve of her chin. Her second CT, one day later in a different oral surgeon’s office, confirmed the first. I didn’t like looking at the images from those scans. Bulbous and bulging, the tumor looked like the not-right thing it was. That was back before we understood how much a benign tumor could change a child’s life. When I looked at the images, I looked away quickly and thought, not cancer, not cancer.

3: CT, April 2018

It wasn’t cancer. The tumor was a central giant cell granuloma. Benign and rare, these tumors are often managed with treatment plans that don’t disrupt a child’s entire life. After a two-month course of routine treatment, during which Lucille’s surgeon sedated her and then injected a high-dose steroid directly into the tumor, Lucille had another CT scan. Those images showed a tumor that had grown half a centimeter. In oncology terms, the treatment had failed.

While the surgeon started explaining the bad news, I stared at the screen, trying to come up with words to describe this tumor that had taken over my child’s jaw. The tumor looked not-real. The tumor looked like a mistake. The tumor looked like something that could not fit inside Lucille’s face.

But the surgeon was talking, and I suddenly heard the words “oncology,” and “chemotherapy.” That’s when I wanted to close my eyes.

But this was my child’s jaw bone and my child’s tumor lighting up the screen. The world of pediatric oncology is like that. You have to look.

4: CT, June 2018

By now Lucille was two months into life as a pediatric oncology patient, and her oncologist was the one ordering scans. This CT scan would not happen in one of the friendly little stand-up machines we’d encountered in the offices of oral surgeons. This CT was the kind involving a hospital visit, an IV, and contrast dye. Lucille had to slide into this CT lying down.

She was afraid. This first hospital CT was one of those medical circumstances when you tell your child, “I wish they could do this to me instead of you.” A statement that helps no one. In the CT room, Chris and I stood, cloaked in full lead vests, watching Lucille slide headfirst into the tunnel, wearing only a hospital gown and blanket.

“We’re right here,” we kept telling her. “You’ll be okay.” That’s another thing about pediatric oncology: “okay,” becomes such a relative term.

But the purpose of that CT was to make sure her drug therapy, Denosumab, was working. And it was.

5, 6, & 7: CT, October 2018- January 2019

After eight months of drug therapy, Lucille was back in the surgeon’s office, where a new CT showed a thin line of bone reclaiming the tumor. Lucille, her jaw, and her tumor were ready for surgery. Or would be after a three-month drug holiday.

After her “holiday,” Lucille’s pre-op CT showed a stable tumor. In the operating room: nothing but success. The radical surgery broke medical ground and reshaped Lucille’s face. The post-op CT was the most beautiful bit of radiology I’d ever seen. Lucille’s jaw looked right again.

8: CT, April 2019

Sometimes tumors come back. Lucille’s central giant cell granuloma recurred three months after her radical surgery. Because Lucille was in the room when her surgeon showed us the scan, none of us said the f-word. But on the way home, I told Lucille she could shout any swear word she wanted to, as long as she stopped before we got out of the car. Another pediatric oncology observation: It’s hard to know when you are making good parenting decisions.

Lucille’s surgeon resected the tumor in another surgery, three days later. But neither He nor the oncology team thought the surgery would be enough. As soon as her jaw had safely recovered from this surgery, Lucille needed to go back on drug therapy.

8-18, 19-?: X-ray, May 2019

As any parent of a critically ill child knows, at some point, you lose count. My point came when Lucille lost enough weight to become malnourished and started limping. During a frightening office visit, her oncologist ordered labs and an x-ray study of her left hand, both of her feet, and both of her knees. After the phlebotomist drew labs on Lucille, who had become too sick to care much about the needle, we took the elevator four floors down to outpatient pediatric radiology. Ten images. I stood on the other side of a door and watched the x-ray sign blink off and on.

What’s ten more x-rays, I thought. Maybe they’ll figure something out.

Lucille’s oncologist called before we made it home. Her labs were back, and she needed to go to the hospital. Lucille had a dangerous condition called hypercalcemia, a side effect of her drug therapy. By the time she made it into the hospital room, Lucille was in acute kidney failure and could barely walk. The doctors on call ordered IV fluids for Lucille’s kidneys a full skeletal x-ray study, for reasons no one wanted to elaborate.

By now my husband, Chris, was with us, and only one parent could go into the radiology room. So Chris donned the leaden vest, and I sat on the other side of the wall, while a technician x-rayed each bone in Lucille’s body.

They were looking for evidence of other tumors. They were looking for evidence that her growth plates were freezing up. On the other side of the wall, I sat with these two possibilities and thought, let it be neither. Let it be nothing.

The results: Lucille’s bones looked fine. So did her growth plates.

Something else was happening. But the happening could not be named. Which is one more observation about pediatric oncology: There will come a time when something is wrong, but no one knows what it is.

?-?: X-ray, June 2019

There will also come a time when you can’t remember the order in which things happened to your sick child. According to my iPhone, Lucille went back for another set of x-rays one month after she was discharged. I would have confused these x-rays with those she had before going into the hospital, were it not for the iPhone’s impeccable memory.

That day, I insisted on walking through the door. I sat behind a screen, trying to fold my body enough to protect it, and asked for as much lead as they could drape over Lucille, which wasn’t enough. Even as she recovered from the hypercalcemia and malnutrition, she Lucille was walking less and less, and we spent most evenings carrying her around the house. But those x-rays looked like the others. Nothing, nothing, nothing.

 ?: CT, August 2019

Four months into a second regime of Denosumab drug therapy to treat the tumor recurrence and nineteen months into her tumor battle: a check up with her surgeon. The image of her mandible confirmed the drug therapy was working, again. But Chris had to carry Lucille into the surgeon’s office because sometimes she could not walk at all.

Two weeks later, her oncologist handed me a study noting briefly that some patients on long-term denosumab developed a neurological condition called mild peripheral neuropathy.

Two weeks after that, Lucille went to a neurologist for the first time. There, we learned of a new concern: the possibility of lesions on Lucille’s spine.

?: MRI, Two Days Away

Today Lucille is twenty-two months and two surgeries into her fight with this tumor. I don’t know how many images of her body radiologists have studied. Nor do I know why she cannot walk. I can say she spends some of each day in a wheelchair, and her physical therapist has become worried about permanent damage to her feet. I can also say she has spent a total of fourteen months on Denosumab and is due for her next round in two weeks.

Lucille has acquired medical specialists like she acquires Beads of Courage. Sometimes I imagine them clinking together on a string—the oncologists, the radiologists, the nephrologist, the oral surgeon, the orthopedic surgeon, the neurologist, the physical therapist… clink, clink, clink. But no answers resonate with that sound. 

Today is Wednesday. On Friday, Lucille will have an MRI of her spine. The radiologist and the neurologist will be looking for lesions or anything else that might explain whatever is happening to Lucille’s legs and feet. On Friday, Chris and I will ask to enter the MRI room with Lucille. When she slides into the chamber, we will wait without speaking. We will wish the MRI, the trouble walking, the drug therapy, and the tumor were happening to our bodies, instead of hers. We will long to reach into the chamber and place our hands on hers. Instead, we will hope for answers without knowing which to hope for.

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.

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 tumor, 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.