Living on the Emergency Line: My child and Drug-induced Hypercalcemia

In the ambulance bay, the paramedics unload Lucille and make their way into a crowded corridor, weaving the stretcher through groups of other paramedics, patients, and police officers. I stay as close to my child as I can, but we get separated, as I knew we would be, when we reach the security guard.  The paramedics want to keep going without me, but the guard assures them my COVID screening will only take a minute.

I say nothing. Lucille is in danger. I want her to get up to the floor where they will treat her, but I also want to stay with her. I look at my daughter on the stretcher. The IV fluids have brought her heart rate down. She is hooked to a heart monitor, and one of the paramedics is a nurse who has been monitoring her since we left the free-standing ER to come here. We are standing in the entrance to the emergency room of the biggest trauma center in Charlotte. Lucille is as safe as she is going to get.

I turn to the security guard and mumble “ok,” expecting him to point me toward the screening station. Instead he leads me back out into the ambulance bay, maneuvering me through the mask-wearing crowd—there is no social distancing in the ambulance bay late on a Friday night.  For some reason, the security guard stays with me. Maybe he is just kind, or maybe I look as lost as I feel, but I’m relieved to have someone stand beside me for a few minutes, showing me what to do.

Somehow the corridor is even more crowded than before. I cannot see Lucille or her stretcher, only a mass of dark uniforms and masked faces. Behind my own mask, I take a breath.

“She’s right there,” the security guard says. “Just walk on through.”  I tell him “thank you,” and bump into people as I make my way toward my daughter. Her eyes are half-open, but she does not see me.

“I’m here,” I say as the paramedics start moving again. Lucille does not answer. I follow Lucille’s stretcher through corridors and into elevators.  We reach the floor on the children’s hospital from one direction, as my husband, Chris, is entering from another. Two nurses and the resident on call are waiting for us.  Lucille rouses as the nurses and paramedics begin the complicated process of transferring her from stretcher to bed, from one set of monitors and IV poles to another.

Lucille has hypercalcemia again. Hypercalcemia is a life-threatening condition when it is moderate or severe. Tonight, Lucille has a severe case. The calcium level in her blood serum is 17, high enough to cause a heart attack. In the nearly three years since Lucille started battling a rare and aggressive tumor, this is the closest we have come to losing her.

This is Lucille’s third episode with hypercalcemia. Her second was two weeks ago. That day, Lucille’s hypercalcemia had been moderate,  a blood serum level of 13, dangerous enough to bring us to the hospital—but not by ambulance. She’d stayed in the hospital two days and gotten an intravenous infusion of Zometa, which brought her calcium back to 9, to a normal level.

Lucille’s nephrologist, Dr. McKay, a kind, careful man whose research credits include publishing a landmark paper about hypercalcemia in children, had been conservative with that first dose of Zometa. Chris and I had appreciated his caution because Zometa is a drug with frightening side-effects, including osteonecrosis—death—of a child’s jaw.

Lucille’s side-effects had been difficult but manageable.  Her jaw stayed healthy, but she spent one week with a high fever feeling so sick she could not leave her room. Three days after the side effects ended, she started getting sick again. Two days after that, a Friday, Lucille was too weak to walk down the steps.

All that morning, Lucille lay on the sofa while I exchanged questions with Dr. McKay, his nurse relaying messages between us. The nurse:  It was not likely a child could have hypercalcemia again so soon after an infusion of Zometa, and Lucille’s calcium was normal in her last set of labs. Me: But her condition was declining as I watched her. Nurse:  Dr. McKay ordered labs—she should come to the clinic to have them drawn—because we couldn’t know what is happening without seeing the calcium level.  Me: I understood. But Lucille was too sick to come to the clinic, which was located inside the main hospital complex—we would never make it past the COVID screeners. Nurse: If she was that sick, she should be evaluated for COVID.

By 1 p.m., Lucille’s eyes were sinking in her face, and she was difficult to rouse. Chris and I drove Lucille to the closest emergency room, where her calcium level was discovered to be life-threatening and where we were loaded the ambulance to come to the children’s hospital.

So now we are here, and Lucille is a child in acute kidney failure.

It is near midnight. Lucille is drowsing in the hospital bed, and the nurse is drawing another set of labs. The resident (who looked impossibly young and well-rested) is standing at the foot of the bed, explaining the plan. Tonight, Dr. McKay wants Lucille to have an infusion of a different drug, Calcitonin, to begin lowering her calcium immediately, and more IV fluids to flush out her kidneys.

I know, without being told, that Lucille has survived the most perilous part of this episode of hypercalcemia. I also know she will not be out of danger until the amount of calcium in her blood drops–a lot. I know that in the morning, Dr. McKay will come to Lucille’s hospital room, and he will order another infusion of Zometa. I know all of this without asking questions, but I ask my questions anyway—what else is there to do? The resident answers them with the measured kindness of someone who has never been as sick as the child in the hospital bed.

The heart monitor shows a normal rate, a steady rising and falling on the screen. Chris kisses me and kisses Lucille then leaves to spend the night with our two young sons at home. I wash my face, store my contacts in two specimen cups, then slide into the hospital bed with Lucille. I watch her heartbeat peek and dip on the screen and run my hands over her chest.

Lucille is fully asleep now and still wearing the graphic tee shirt she had on when we brought her to the emergency room. It reads “Work of art… in progress,” and has blotches of color splashed all over the front. Beneath it, I can feel the electrodes stuck to Lucille’s skin.

Hypercalcemia is rare in children. Sometimes, as is the case with my child, the hypercalcemia is caused by a side effect from another drug therapy.  Sometimes, the doctors do not know how long a child will be at risk, or how many times they will have to treat her before hypercalcemia stops happening. In Lucille’s case, when the hypercalcemia is a side-effect of drug therapy with Denosumab, the problem is too new and the research too limited for anyone to make a well-educated guess.  

Tomorrow, Dr. McKay will come, and Chris and I will agree to another infusion of Zometa. Lucille will be unsteady on her feet, and we will help her to the bathroom, unhooking the heart monitor leads and bumping the IV pole over the threshold each time. Lucille will spend four more days in the hospital before her calcium is low enough to go home. Eight days later, Lucille will be hospitalized with hypercalcemia again, and she will have another IV infusion of Zometa, and we will help her to the to the bathroom, and I will sleep beside her in the hospital bed.

Sometimes, it feels like our family is living on the emergency line. We take Lucille to have her blood drawn once a week.  We call Dr. McKay’s office immediately if she starts to feel nauseous or lethargic. But Lucille has spent the last three years often feeling sick or lethargic, and each infusion of Zometa can make her feel the same way. It’s hard to tell the difference between side-effect sickness and hypercalcemia sickness. The night we sailed through the city in an ambulance, with Lucille’s calcium level so high it was threatening her life, we made the right guess. But if we had figured her symptoms out a day earlier, or even called Dr. McKay, we could have kept our child a little more safe.

We know other families are living on the emergency line. For a few others, the line is hypercalcemia. For others still, the line is a seizure disorder, or a cancer, or an autoimmune disease, or a critically ill parent, or… But living on the emergency line is like the crowded ambulance bay on a Friday night—you are alone even when a crowd of people is standing before the wide emergency room doors.

The part of my child’s hypercalcemia that is hardest for me to come to terms with is this: She could have had a heart attack on the sofa while we were deciding what to do. It’s easy to say her doctor should have known, but a case like Lucille’s does not exist in medical literature. And when we did call—a day and a half after our child started getting sick again—the first thing Dr. McKay did was order labs to check her calcium level. As the parents of a kid struggling with both drug therapy side effects and hypercalcemia, we have to remind ourselves what we have known all along: We are the experts in our own child.  

So we live on the emergency line. We know we can’t treat our child like we are afraid she will collapse at the first inkling of wind. We can’t refuse to let her be alone in a room for five minutes because we’ve developed a sudden fear of childhood heart attacks. But if we think (or wonder if) something is wrong, we need to act. Immediately. On the hypercalcemia emergency line, there is no room to wait and see.

My child has hypercalcemia again. In the three years she has battled this tumor, this is the closest we have come to loosing her.

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.