Nothing prepares a parent for a child’s cancer diagnosis. Even more unthinkable is wondering if the cancer could have been caught sooner.
When the coronavirus pandemic exploded in March, people in many states were urged to stay home — and they did. Primary care offices closed, gradually converting to telehealth if they could. In-person office visits for both children and adults fell off a cliff, dropping by as much as 60% in April by some estimates, while what-if questions about possible harms soared.
Allison O’Neill recalls a chilling calm settling over the cancer clinic where she treats children at the Dana-Farber Cancer Institute in Boston. The near-silence meant she and her colleagues were not seeing as many sick children and not catching as many cancers early.
Patients and their families have been slowly but steadily coming back for cancer care, keeping appointments streamlined for safety or following up virtually, but not as many of them as before — and some with more advanced, less treatable cases. And now, O’Neill and other pediatric oncologists fear soaring Covid case counts could lead to another big drop in patient visits.
“I’m very worried as we enter into what is described as a surge upon the surge,” she said. “We’ll be looking at our numbers again in the coming weeks to months, to really ascertain whether we see a substantial decline again.”
Kids like Bradley Cornish are what keep O’Neill awake at night. Fortunately, the boy’s mother, Sarah Cornish, never considered delaying his 12-month well-child visit or his 6-year-old sister Savannah’s checkup in early May. Even though the coronavirus pandemic had upended daily life of work, school, and day care for the New Hampshire family, she had a bedrock belief in keeping regular pediatrician appointments.
Bradley’s pediatrician felt a lump in his belly, so she ordered an ultrasound that revealed a stage 2 Wilms tumor on his kidney. The tumor and one kidney were surgically removed the following day at Boston Children’s Hospital. Now 18 months old, Bradley has finished his 10-week course of chemotherapy and will return for scans every three months.
“Who knows what would have happened if she didn’t find it when she did? It could have been a lot higher-stage with more extensive chemotherapy. A virtual appointment would not have done anything for him,” Cornish said. “That physical appointment is important, especially when they’re younger and they can’t really advocate for themselves. He can’t tell me anything.”
In a commentary published in September in Pediatric Blood & Cancer, O’Neill asked, “How many children with stealth tumors or new cancer diagnoses remain at home, failing to benefit from the sensitive exam of their primary care providers? How many cancers have gone undiagnosed and what will the health status of children presenting with new diagnoses be in the coming weeks to months?”
There are no easy answers to those questions, but doctors urge families not to postpone care of any kind — not just for finding cancer, which is thankfully rare in children, but also for keeping immunizations up to date and monitoring developmental milestones.
Bradley’s diagnosis and treatment stand in marked contrast to five cases of children’s cancers found just two months earlier, when the country’s health care system was far less prepared to cope with such crises. Critically ill when they came to hospitals in Philadelphia and Palo Alto, Calif., two of the children died within days from blood cancers that are ordinarily treatable; the other three recovered from advanced illness, Stephen Hunger, chief of oncology at Children’s Hospital of Philadelphia, and others reported in June in the journal Pediatric Blood & Cancer.
One child’s family had been reluctant to seek care for fear of contracting Covid-19. The other four children had been seen by telehealth, in community hospital emergency departments, or both. Leukemia symptoms can look like other illnesses, including viral infections such as Covid-19, Hunger and his co-authors noted. They also suggested that overwhelmed emergency departments and perhaps inadequate telehealth early in the transition from in-person to virtual care may have contributed to the late recognition of cancer in these children.
Things are better now, Hunger said.
“I think people understand better that the risk [of Covid-19] within the medical care setting is extremely low right now, with proper protective equipment and universal masking,” he said. “We haven’t recently seen similar cases of delayed [cancer] diagnoses leading to severe illness.”
Telehealth has improved since the early days of the pandemic, he said, when it was sometimes simply a phone call handled by a contract agency rather than the child’s pediatric care team. “I think what we’re calling telemedicine today is very different than what was happening in March and April.”
Hospitals are seeing fewer children overall because socially distant living — including closed schools, day cares, and camps — has changed their everyday exposures. Summertime vomiting and diarrhea illnesses weren’t bringing children to hospital emergency departments, Hunger said. Kids are getting fewer colds. They’re not falling off their bikes or getting hurt in playgrounds as much as when they weren’t as isolated.
And yet, more serious problems may be overlooked.
Sally Goza, president of the American Academy of Pediatrics and a pediatrician who practices in Fayetteville, Ga., said offices were ghost towns in the spring, with a 50% to 80% dropoff in visits. Children do need to be seen regularly for social and emotional issues as well as health issues, she said, including vaccines to prevent infectious diseases, especially flu right now. A recent survey conducted by the insurer Blue Cross Blue Shield found that 40% of parents had delayed vaccination for their children this year because of Covid-19.
It’s harder to measure what else isn’t happening, Goza said, in part because, in her view, the pandemic has shown that we need better ways to collect data about children.
“You can have some delayed diagnoses because parents may not know the warning signs as quickly as we might notice them in the office,” Goza said.
Dana-Farber oncologist O’Neill gives credit to pediatricians who do spot cancer.
“When children do have tumors palpated by the primary care physician, there’s no doubt that it’s often at a more occult stage and often at an earlier stage. And so it’s impressive that these pediatricians can feel some of these tumors on exam, given how little time they can spend with each patient,” she said. “Of the patients we have seen, there’s no doubt that when they come late, they’re presenting with extraordinary pain and in some circumstances more advanced disease, which you can only speculate might have been avoided.”
CHOP’s Hunger thinks a child’s cancer is more likely to be found when a parent notices something isn’t right with the child than in a well visit. “I think a clear message to parents is, if the child is sick and you would have brought them to medical attention a year ago, you should bring them to medical attention now.”
Cornish is glad Bradley will have no memory of having cancer, just as he was too young to dread the trips to Boston for his treatment. The shock of having to take her child to a cancer clinic overpowered any sense of whether Covid-19 precautions had changed this unknown world. Her concern initially centered not on Covid-19 precautions but on whether they would prevent her husband, Brett, from coming in with her to those frightening first appointments and later when Bradley spent a week in the hospital for his surgery. (He was allowed in.)
Now, her advice to other parents who may be delaying a doctor’s appointment?
“It’s a parent’s worst nightmare. Never in a million years would I have ever thought that something like that was wrong with him,” she said, recalling the shock of Bradley’s diagnosis. “Just try to get there.”