‘Forced to retract completely into ourselves,’ a mother and son confront cancer in the age of Covid-19

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my Sapien had prepared for her April 13 surgery as best she could. She dyed her long blond hair a bright pink. She got a tattoo on her right calf of what she jokingly calls her spirit animal — Dory, the blue fish from “Finding Nemo,” whose answer to life’s challenges is to say, over and over, “Just keep swimming.” Still, she was overwhelmed by dread early that morning as she kissed her husband, Callen, goodbye outside the Moffitt Cancer Center in Tampa, Fla., and walked alone through the bright, empty lobby. Her hands shook as she stepped onto the elevator and pressed the button with her elbow.

Her mind was a jumble. Everyone seemed so eerily expressionless from behind their paper masks that Sapien wondered for a moment whether she’d walked onto the set of an alien abduction movie. She had been imagining for weeks what it would be like to leave the hospital without her left breast. Now her mind turned to an even more urgent fear: What if she became infected with the coronavirus during her short stay?

Sapien tried to replace her anxious thoughts with fighting ones. The 40-year-old hospital social worker made Tom Petty’s lyrics her mantra: “You can stand me up at the gates of hell,” she sang to herself as she felt her consciousness give way in the operating room. “But I won’t back down.”

When she came to three hours later, she pushed aside her worries about the treatment and procedures she still faced, nibbled on Saltines, and sipped ginger ale to stave off the nausea she felt from anesthesia. Then she reached for her phone, and recorded separate video messages for her two young boys.

Her blue eyes glazed thick from painkillers, she addressed her 3-year-old son, Corben. Smiling reassuringly, she told him to continue his toilet training with his grandmother, and that she’d be home soon. Then she spoke to 7-year-old Landen. “Hey. I’m OK. I’m out of surgery,” she said in a near-whisper. With her bandage peeking from her pink surgical robe, she told him that she’d be home the next day, and that they would soon be able to watch movies together from the bedroom recliner. “I love you, I don’t want you to worry about me, Landen,” she said. “OK? I’m doing really good. Bye, honey.”

Then she tapped send. Landen watched the video from his own hospital room across town, where he was being treated for leukemia.

Amy and Landen, two generations fighting cancer, are united by something else: They are going through the most frightening and painful moments of their lives without the family warmth and support that was standard practice at the nation’s medical centers — until Covid-19. The pandemic’s broad impact on cancer care in the U.S. is well-known: non-essential surgeries, biopsies, and scans delayed, and clinical trials disrupted. But it’s in stories like the Sapien family’s that one sees the depth of the harm it’s causing.

Amy was able to schedule the mastectomy right away only because her cancer was spreading, but she couldn’t have her second breast removed at the same time since it was deemed elective. Instead she’ll have to undergo general anesthesia, surgery, and painful rehab again. While her husband was allowed in the waiting room during her first worrisome mammogram and ultrasound in early March, Amy had to go alone for her biopsy and the MRI that confirmed the diagnosis. Then she went by herself to her surgery, and recovered in isolation.

“I didn’t see anyone I knew for 36 hours after having a part of my body amputated,” she said. Worse, though, was her inability to be with Landen as he lay tethered to a machine delivering a platelet transfusion.

While both parents, and sometimes his grandparents, had been able to reassure him through previous chemotherapy treatments, this time only his father could be present.

Theirs is an experience shared by cancer patients across the country, as Covid-19 separates them from loved ones and family at their time of greatest need.

“In the exact moment where we could have reached out for everything our support system could offer,” Amy said, “we were forced to retract completely into ourselves.”

t was last June, a few weeks before Landen’s seventh birthday, that his grandmother Sandra Sapien noticed a swollen gland on his slender neck. The family had just moved from a nearby town and had not yet met their new doctors, so Amy took Landen to a walk-in clinic to rule out strep. The test was negative, but the doctor suggested following up with a pediatrician — and asked if there was a family history of leukemia. “No,” Amy said, alarmed. “None at all.”

Days later, at an appointment with Landen’s new pediatrician, Amy mentioned what the urgent-care doctor had said and asked if he could run some blood tests. “It’s never cancer,” he told her. He diagnosed Landen with tonsillitis, and prescribed antibiotics. Landen seemed fine at his birthday party, and wolfed down pizza and the massive chocolate Minecraft cake his grandmother had made.

The morning of June 29, the family drove to a pet store to pick out a fish for Corben. As he deliberated among the bright blue and red beta fish, Landen turned gray and collapsed. Thinking that he’d had a bad reaction to the antibiotics, Callen rushed him to the hospital.

In just a few hours, the couple went from worrying about whether rain would spoil that evening’s fireworks to confronting every parent’s nightmare. After doctors ran a battery of tests, the Sapiens learned that their son was one of 350 to 525 U.S. children diagnosed with a rare form of leukemia each year. Overall, 3,500, or 4.7 out of 100,000, are diagnosed annually with childhood blood cancers.

“Leukemia?” Amy recalls asking, incredulous. “My brain wasn’t even linking up what the word was.”

As a young woman, Amy had struggled with anxiety, but finally everything had fallen into place. She and Callen, 36, a strategist at a business software company, had solid, steady careers. Together since their first meeting at a college-town coffee shop 17 years ago, they had just purchased their dream home. “I’d finally convinced myself there were no monsters under my bed,” she said.

Now the doctors were hospitalizing their son, and had begun a 3 1/2 year regimen of in- and outpatient chemotherapy treatments that during some stretches required daily infusions.

Callen’s mother and stepfather, colleagues, and friends rushed to help, providing lunches, dinners, even breakfasts, so the family could focus on Landen and managing his hospital schedule. Amy’s co-workers donated sick leave.

The couple tried to make life as normal as possible for Corben; both continued working, and resolved never to show their fear to their son. “Nobody ever got a trophy for crying on the floor for three years,” Amy said.

Early this winter, news of the pandemic began to percolate. Because Landen’s treatments impaired his immune system, he was at risk for opportunistic infections. The family had initiated a series of precautions: limiting visitors; carrying hand sanitizer; washing every item that came into their house. “We were acting as if Covid existed before Covid existed,” Callen said. “We were already being hypervigilant.”

One evening in mid-February, the whole family was gathered on the couple’s bed watching “Ninjago.” Amy was leaning against Callen’s arm, which had fallen asleep. When she wriggled away to release it, her left breast grazed his hand. In that split-second touch, he felt something unusual — and hard. “What’s that?” he asked. Amy padded her breast with her fingertips, immediately detecting a small mass.

Her mother had had breast cancer, and her grandmother had died of the disease. But they had drank and smoked, lifestyle behaviors that increased their risk. Amy had had a baseline mammogram at 33, and had tested negative for the BRCA genes that dramatically increase the risk of breast cancer. “I thought I had an insurance policy against having to go through this,” she said.

When she turned 40 in October, her doctor had recommended that she get a second mammogram. But she had told herself she would schedule it until after Landen had completed his first year of treatment.

Now she feared the worst. Landen’s diagnosis had been improbable. Could the universe betray them twice? “I’m scared,” she told Callen.

Landen, hypersensitive to any health news, looked up. “Why?”

Amy reigned herself in. “I couldn’t cry in front of him after watching him be poked and prodded hundreds of times and never complaining. It’s not fair to expect a 7-year-old to do what I can’t.”

“I couldn’t cry in front of him after watching him be poked and prodded hundreds of times and never complaining.”

he was sitting at her work desk when a nurse practitioner called her cellphone with the biopsy results: She had invasive lobular cancer. Amy tried to write down the diagnosis on the back of an envelope. “The words went into my ears, but they just weren’t registering,” she recalled. “How do you spell that?” she kept asking. She hung up and burst into tears. “It’s not fair,” she said to her office mate, who was trying to console her. “We’re good people. It was supposed to be benign.”

In those early weeks of the coronavirus, hospitals were just putting in place social distancing rules to protect patients from infection. Family members were prohibited or sharply limited from joining cancer patients as they go from diagnosis to surgery, from chemotherapy to recovery.

Suddenly, the Sapiens could no longer turn to their community for help either. Their kitchen, in disrepair after a massive leak, had only a working hot plate, but they couldn’t accept meals. Amy, who has a well of close friends, couldn’t see them on weekend lunch dates.

Cancer remains the second-leading cause of death in the U.S., and 1.8 million people are diagnosed annually. Many end up with plans of treatment that last for months, if not years, that require regular surveillance and lifesaving but immune-suppressing drugs.

In her job, Amy has worked with a series of vulnerable populations, from the homeless to veterans to the elderly. As she lurched alone from procedure to procedure at Moffitt, she of course understood that barring patients’ partners reduced the chance of infections by half. But she also knew that family members play an important role in making decisions about treatment. “It’s so hard to absorb what you’re hearing when you’re the patient,” she said. “That second pair of ears is so important in cancer treatment.”

Meanwhile, St. Joseph’s Children’s Hospital, where Landen was being treated, issued similar restrictions. “In the past, we allowed parents, grandparents, even siblings to accompany patients during treatment,” said Don Eslin, Landen’s pediatric hematology oncologist. “Now they can only have one parent.”

As recently as February, he said, it was common for families whose children were being treated for blood cancers to share stories and encouragement in cafeterias and the waiting room.

“Now that support is reduced to a wave from behind a mask down the hallway,” Eslin said.

Doctors, too, saw their routines upended in unsettling ways. Eslin must sometimes deliver bad news by phone, something he has always striven to avoid. “This is adding complexities to cancer care in a way we never imagined,” he said.

Catherine Lee, Amy’s surgeon, feels most the loss of connection with patients. Since the third week of March, she has only been able to make eye contact with her patients at one of the most terrifying moments of their lives.

“A breast cancer diagnosis is so intimate,” Lee said. “We always want our patients to feel that we are giving as much as we can to them in terms of support and compassion, and to reassure them that we’re doing as much as we can for them.”

From behind her mask, she can only offer supportive words. “They can’t see my smile. I can’t shake their hands, and I certainly can’t give them a hug,” she said.

In their brief meeting, Lee and Amy discussed Landen’s situation, and how Amy needed to be back on her feet as soon as possible.

As Lee reflected on the case during a FaceTime call, she paused for a moment: “You know something? I don’t even know what Amy Sapien looks like.”

“For the past seven weeks,” she said, “about the only thing I see of my patients is their breasts.”

my is recuperating, working from home to help veterans navigate the Covid-19 crisis. She is never far from her sons, and tells them every day how lucky she feels to be their mother. Landen is now in maintenance therapy, and his doctors have replaced his grueling chemo infusions with an oral drug. Some days, his second grade teacher drops by, and they shout to each other through a closed window.

Earlier this month, she got the news that she won’t need chemotherapy, but will be on hormone suppression treatments for at least the next decade, and will go into rapid menopause. It is highly likely that she will need a hysterectomy.

Still, she tries to focus on what she can control. She oversees Landen’s home schooling, which he does by Zoom with his teacher. She watches the boys as they make up imaginary games with their Duplos, and swim in the backyard pool when Landen is well enough. The family just got a new puppy, a brown Bernedoodle named River. The Sapiens had promised a party and a puppy as a way to mark the end of Landen’s infusions, and what they hoped would be the resumption of a more ordinary life. The puppy adds chaos — but also normalcy.

Although Amy and Callen have tried to shield the children from the news, the pandemic is nonetheless a constant backdrop. Sometimes Landen wonders aloud about whether the virus could kill him or everyone in the family. And he worries about his mother, telling her recently that he hoped she wouldn’t have to get an infusion port like his. Amy tries to reassure him.

“I tell Landen being brave isn’t not being scared,” she said. “It’s being scared and doing it anyway.”