A 4-month-old girl gets a cancer diagnosis amid coronavirus pandemic. How a family coped

A few months after baby Elizabeth was born, her mother began to notice changes in her previously healthy daughter. The baby seemed listless, ate very little, cried a lot and developed a ghostly pallor.

Three times doctors told her everything was fine, normal. She knew it wasn’t. When she noticed the tiny girl’s stomach area seemed inflamed, she took her to see a doctor again.

“I don’t like to see my children suffering,” said the mother, who asked that her name not be used because she is undocumented.

This doctor, she said, did a blood analysis and referred Elizabeth to the Salah Foundation Children’s Hospital at Broward Health. Within 48 hours of her admission to the Fort Lauderdale hospital in early February, the then-4-month-old was diagnosed with acute lymphoblastic leukemia, rare in a child so young.

Getting such a cancer diagnosis is always devastating for parents, but with the COVID-19 pandemic raging, there’s now a new layer of worry for families who are not only fearful of their immune-compromised children being exposed to the virus but must contend with new hospital rules and social distancing that can increase feelings of isolation at a time that’s already scary.

“They don’t know what to expect; some of them are scared of the hospital and they wonder if they’re going to get sick from the virus or make other people sick,” said Dr. Sara Rivero-Conil, a pediatric psychologist at Nicklaus Children’s Hospital in Miami.

“COVID-19 doesn’t stop their cancer diagnosis. Everyone else might be saying, ‘I don’t want to go to the hospital,’ but they have no choice,” she said.

Leukemia and the threat of COVID-19 weren’t the only challenges facing Elizabeth’s parents. They don’t have a car, making visits difficult; the father’s landscaping job dried up after the pandemic; and then her two young brothers came down with fevers, making their mother apprehensive about visits to the baby.

When Broward County Schools switched to online classes because of the pandemic, the mother also needed to attend to her sons and supervise their lessons, making it even harder for her to spend as much time in the hospital with Elizabeth as she would have liked, she said.

New hospital rules that came with the pandemic allow only one adult visitor at a time, meaning the couple couldn’t even visit their baby daughter at the same time without a special pass.

“She was super concerned about coming back and forth, and we were too,” said Dr. Hector Rodriguez-Cortes, a pediatric hematologist and oncologist at Salah. “It was a very difficult situation from a social aspect.”

Infants need stimulation and affection to hit developmental milestones, he said. “Mom was always there until we started getting the issues with COVID-19,” said Rodriguez-Cortes. After the boys got sick, “the baby was alone in her hospital room.”

But not for long. “That’s when the nurses in the unit really stepped up and took care of that baby,” Rodriguez-Cortes said. “I remember doing my rounds and the nurses were going above and beyond.”

They held her, played with her, talked to her, and made sure her room was filled with bright colors, balloons, stuffed animals, pictures and infant toys. “They were providing the stimulation that a mother would,” the doctor said.

Now Rodriguez-Cortes, who calls Elizabeth “the princess,” says the baby is always smiling. “Providing communication with a baby is so very important,” he said.

When Elizabeth was admitted, she was extremely sick. “The leukemia cells were invading the spleen and liver, inflaming the spleen and her abdomen was distended,” said Rodriguez-Cortes.

A baby her age usually has a white blood cell count of 10,000 to 15,000 per sample. Elizabeth’s was 378,000. Her hemoglobin levels were about four times lower than normal and her platelet count was 8,000. Platelets, which stop bleeding, should have been in the 140,000 to 400,000 range, Rodriguez-Cortes said.

“I’m very proud of this mother,” he said. “She knew for weeks that something was wrong, and she was going back and forth with pediatricians before a doctor finally said, ‘I agree with you.’ ”

Because leukemia in infants is so rare — accounting for only 2 percent of cases of childhood leukemia, “some doctors might not feel comfortable going in that direction,” Rodriguez-Cortes said.

After Elizabeth finished her latest round of chemotherapy, her mother said there was a possibility she might go home, “but with the virus so present, the doctors decided they wanted her to stay there.”

“Imagine what it’s like to be separated from your baby,” said her mother, “but for me it’s better that she stays. I don’t want to complicate anything. Her defenses are very low.” Now doctors are hopeful that Elizabeth will be in remission in a few weeks.

Life also changed drastically for 15-year-old Cole Vaccarella, a patient at Nicklaus Children’s Hospital, when he got his cancer diagnosis on Jan. 27, and then again in mid-March when COVID-19 cases in South Florida began to climb and hospitals imposed new, stricter visitation rules.

Shortly before Christmas, the young soccer and hockey player complained of pain in his shoulder. His father, Vincent Vaccarella, chalked it up to bruising from sports or growing pains.

In late January, Cole visited a walk-in clinic because he had developed a rash. “Just as we were about to leave, we asked the doctor about the shoulder pain,” Vaccarella said.

After initial tests, the doctor was concerned and ordered an MRI. Cole was diagnosed with osteosarcoma in his right humerus, the long bone in his upper arm, and soon began chemotherapy at Nicklaus. He’s been spending around 20 days of each month in the hospital for treatment, said his mother, Tracy.

The first six weeks of treatment, there were no restrictions on visitation, said his father. His brother and sister kept him company during his treatments, and family friends visited and offered moral support.

But by the second week of March, it was obvious that South Florida was becoming a COVID-19 hot spot and the hospital changed its visitation rules, limiting its young cancer patients to just two adult visitors per day.

And they must be the same two visitors, meaning the parents can’t visit in the morning and the mom and abuela come by in the evening, said Rivero-Conil, the Nicklaus psychologist.

The pandemic also has meant Nicklaus has canceled its one-week summer camp program for young cancer patients this year, and stopped its bedside-buddies program that brought in teen volunteers who played video and other games with the kids.

As a mom, Rivero-Conil said she’s often tried to limit her kids’ computer screen time, but during a pandemic, social media and technology have become friends in the pediatric cancer unit.

“Less social interaction can cause stress,” said Rivero-Conil, “and it’s our job to try to reduce that. Technology has become so important.”

So there are Zoom parties, kids streaming the same movies their friends are viewing so they can watch together, patients playing video games with their friends outside the hospital and kids taking their classes online.

“I’ve seen them using Facetime when their meals arrive so they can have dinner or lunch with their grandparents who are at home,” said Rivero-Conil.

After Cole’s diagnosis, his family and friends made sure social isolation was the least of his worries. When he was being treated, family friend Karla Filosa, who works as a child life specialist at Nicklaus, made cardboard signs with messages of encouragement and held them up outside so he could see them from his hospital window.

A big welcome home sign greeted him in front of the family’s Davie home when he returned between treatments and friends staged drive-by parades.

They chalked messages of encouragement on his driveway and filled the walkway to his home with little paper boxing gloves urging him to stay strong. Friends from St. Thomas Aquinas, where he is a sophomore, made deliveries at the hospital and sent food and gifts to his home. Paraphernalia arrived from the Boston Bruins, and Cole’s St. Thomas soccer teammates inked his No. 8 on their fists during their playoff run and dedicated the playoffs to him.

“One of the things we were told to expect was that after the diagnosis there would be a swell of support but then it would taper off,” said Vincent Vaccarella. “But we’ve been very fortunate the support has just kept up. It’s amazing that with all that’s going on with the pandemic, they continue to keep him in their thoughts. It always provides a boost.”

Social media also has played a big role for Cole during his illness. “It’s amazing how many texts and messages he gets,” said his dad.

The nurses at Salah also turned to technology so Elizabeth’s family wouldn’t miss some of the key moments in the baby’s development. They’ve sent photos and videos when she’s passed developmental milestones.

“I have a photo when she learned to sit up. Now she’s learning to eat by herself,” said Elizabeth’s mother, who now visits her daughter two or three times a week. “Of course, I want to be with her all the time because now when she eats by herself or turns over, her mama isn’t there.” But thanks to social media she can share in those memories.

The family, however, continues to struggle. “It’s hard. This shouldn’t happen to anyone,” said her father, who came to the United States from a little town in the state of Mexico, just outside the Mexican federal district. “My worry is that she’s in the hospital and I can’t work. I’m worried about paying the rent.”

Because Elizabeth was born in the United States, the family was able to make an emergency application for Medicaid assistance. The family is also grateful that people have been helping them with food and clothes for their children. “We hardly go out except to the store now,” he said.

Like all parents of children with compromised immune systems, Elizabeth’s parents and the Vaccarellas were worried about the possibility of COVID-19 infection in the hospital.

But Tracy Vaccarella said it turned out to be almost the opposite of her family’s initial concern. “The amount of traffic in the hospital has decreased significantly. It’s almost like there’s reduced exposure to the outside world,” she said.

Patients who are in the late phases of treatment often laugh when Rivero-Conil asks them about social distancing and self-quarantine during the pandemic. “They tell me this is kind of our everyday. They’ve had to self-isolate, stay away from crowds already. I tell them this is the silver lining. Everyone is quarantined now.

“I tell parents of newly diagnosed children that you will probably get your strength from your child,” said Rivero-Conil. The children themselves are more focused on their cancer diagnosis and getting better than on the pandemic, she said.

That’s how Cole Vaccarella is coping, said his father.

“He’s not a stressed-out or anxious kid. I don’t think he worries about things that are beyond his control like the pandemic. He just grits it out.”

Mimi Whitefield can be reached at mimiwhitefield@gmail.com or on Twitter @heraldmimi