By Emily Johnston, MD, MS & Julie Wolfson, MD, MSHS 

A pediatric oncologist colleague of ours from Cornell Medical Center in New York posted a question to Facebook on March 23, 2020: How would the new COVID-19 pandemic impact the pediatric cancer population? We were asking ourselves the same question here at Children’s of Alabama. As social distancing and virtual meetings became the norm, we put our heads together – nearly 1,000 miles apart – to figure out how best to provide ongoing care for our oncology patients.

The result is the Pediatric COVID-19 Cancer Case (POCC) Report, a national registry of pediatric cancer patients diagnosed with COVID-19. It’s designed to better help our fellow clinicians provide vital care during an evolving pandemic.

The first edition of the report was dated April 29, 2020, just a few weeks after the idea was presented, a timeframe unheard of for getting studies approved by an Institutional Review Board (IRB). We reported 12 documented cases of COVID-19 among pediatric cancer patients across the country, representing six institutions. The initial goal was a biweekly update, sharing real-time information with our colleagues about what COVID-19 looked like in our patient population so that as the pandemic waves moved across the country, they would have a better sense of how to treat their patients.

More than a year later, 1,000+ patients are in the registry from 95+ participating sites, representing more than half of the pediatric oncology sites in the country. While those numbers bring mixed emotions – it’s unfortunate that so many kids with cancer in this country were affected by COVID-19 – we are motivated knowing that we are contributing to the clinical care of these kids, serving as a clearinghouse of information for other institutions.

The POCC uncovered some important early findings in children with cancer. Specifically, children with cancer and COVID-19 are getting sick: 65 percent of these children are symptomatic; 30 percent are admitted to the hospital, a rate five times higher than the general pediatric population; 10 percent are admitted to the ICU; four percent are intubated, and two percent die due to COVID-19. Approximately half had their cancer therapy changed due to COVID-19. Looking through a disparity lens, we see that kids with cancer who have public insurance, are from a Hispanic background and have other comorbidities like sleep apnea or diabetes are also more likely to face a COVID-19 infection – mirroring the risk factors for COVID-19 in the adult population.

When a child with cancer tests positive for COVID-19, we have to consider delaying the time-tested protocols for their cancer treatment. We know from the registry that almost half of the documented patients have had their cancer therapy changed due to a COVID-19 illness. Early in the pandemic, we were all learning how best to safely approach the scheduled treatments. Is it safe to continue chemotherapy during a COVID-19 infection? Are they too sick from COVID-19 for sedation for their imaging, procedures and surgery? Working with our anesthesia and radiology teams, we had to decide how important the treatment was or determine the impact of delaying until the child’s quarantine period was over.

Delayed treatment could lead to higher risk of relapse, diminished support over time from family and friends, additional FMLA approvals from parents’ employers and prolonged isolation to keep the child and family members from being exposed to the virus during the course of cancer treatment, at a time when families are already under stress from their child’s illness.

As we face new variants that are more likely to affect children, we encourage all who are eligible to get one of the available COVID-19 vaccines. Immunocompromised children like our cancer patients may mount some kind of response from the vaccine but may not have full protection. For the most vulnerable patients, it’s important that close family members get vaccinated as well to protect those who aren’t old enough to get vaccinated themselves. It’s a conversation we’re having with every one of our patient families, similar to our approach with the annual flu vaccine.

The POCC is a labor of love for both of us as well as for our pediatric oncology colleagues across the country. This registry serves as a snapshot in time so that we have the data and can look back and understand the impact that the pandemic had on young cancer patients. And while we don’t expect to face another pandemic of this magnitude in our careers, we are better prepared to understand how best to support and care for our patients.

September is National Childhood Cancer Awareness Month and Sickle Cell Disease Awareness Month. More than 90 percent of Alabama’s children with these illnesses receive treatment at the Alabama Center for Childhood Cancer and Blood Disorders at Children’s of Alabama, where more than 300 pediatric healthcare professionals provide exceptional patient care, education and research.

Emily Johnston, M.D., MS is an Assistant Professor in the University of Alabama at Birmingham Division of Pediatric Hematology and Oncology; Alabama Center for Childhood Cancer and Blood Disorders at Children’s of Alabama

Julie Wolfson, M.D., MSHS is an Assistant Professor at the University of Alabama at Birmingham Division of Pediatric Hematology and Oncology; Member, Institute for Cancer Outcomes and Survivorship; Alabama Center for Childhood Cancer and Blood Disorders at Children’s of Alabama