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.