By Sara Bondell - March 02, 2021
Amy Sapien woke up from surgery at Moffitt Cancer Center on April 13. Her hair was dyed pink and her ankle sported a new tattoo of Dory from “Finding Nemo,” the blue fish with the can-do attitude and the mantra “Just keep swimming.”
Her left breast was gone. And she was alone. At the same time, Sapien’s nearly 8-year-old son, Landen, was 10 miles away in another hospital, being treated for leukemia.
“My husband dropped me off for my surgery before the sun came up that day and then turned around and took Landen to the hospital for a platelet infusion,” said Amy. “I just thought to myself, this is hell.”
COVID-19 has forced hospitals and cancer centers like Moffitt to change the way they see patients, increase reliance on telemedicine and even limit the use of research facilities by the very people searching for new treatments and cures.
Clinicians combed through patient schedules to determine which upcoming appointments could be pushed back and which ones could be converted to virtual visits. Before COVID-19, 76 Moffitt providers were performing virtual visits. A month later, there were almost 200, and telemedicine grew more than 5,000%.
On the research side, only one researcher was allowed in each lab on campus and studies requiring in-person visits were suspended. While 15 clinical trials were halted, more than 200 remained open.
While no cancer surgery is truly elective, surgeons identified which procedures could be delayed, like the removal of nonaggressive tumors and secondary reconstructive surgeries. About 30% of nonurgent surgeries — about 60 to 65 a week — were delayed during the four-week height of the pandemic.
Moffitt also put into place a no-visitor policy, added screening checkpoints at entrances and ramped up cleaning efforts around the hospital. On-site conferences and meetings were canceled, and international travel was prohibited for team members.
For patients, the isolation has been the worst part. Amy Sapien was diagnosed at the peak of the COVID-19 pandemic, and she went to the majority of her appointments alone.
With no visitors allowed in the hospital, she recorded videos for her sons on her cellphone after her surgery. She told 3-year-old Corben to be good for Grandma and to keep using the big-boy potty. But her message to Landen had a different tone. “I am OK. Look at me. I am OK,” she told him.
But there is one fear she couldn’t shake, a fear no cancer patient should also have weighing on her mind: What if I get COVID-19?
Planning for a Pandemic
When the first COVID-19 cases were reported in China earlier this year, Moffitt leaders carefully monitored the situation. Once the virus began popping up in the United States, they knew it was time to act.
“All of a sudden we were no longer able to conclusively connect a COVID-19 patient with a travel history,” said Robert Keenan, MD, vice president of Quality and chief medical officer. “That’s when you start saying it’s jumped the pond, it’s here, and that this could get quite serious.”
"All of a sudden we were no longer able to conclusively connect a COVID-19 patient with a travel history. That’s when you start saying it’s jumped the pond, it’s here, and that this could get quite serious."- Robert Keenan, MD, vice president of Quality and chief medical officer
The cancer center activated its incident command center, a general emergency management team typically used during hurricanes. Focused on the pandemic, the group created almost two dozen subgroups involved in various operations across the hospital. A team from the Infection Control and Infectious Diseases departments took the helm and reviewed plans established by multiple health care organizations during the Ebola outbreak in 2014.
“With Ebola, the plans focused on caring for individual patients and trying to keep health care workers protected,” said Keenan. “We didn’t have the same concerns that we do now with the coronavirus, spreading through a large portion of the population.”
The team was able to adapt the Ebola model to fit the current needs and established a COVID-19 response plan within weeks. It laid out four levels of escalation, with triggers that would determine if and when the hospital needed to move to a higher level of caution.
Moffitt now had a playbook to manage not only infected patients, but also any impacts the virus would have on daily operations.
With fears spreading throughout the medical community about a shortage of personal protective equipment, Moffitt took inventory of what it had and started looking for ways to get more.
The cancer center added 39 vendors and entered into 20 new agreements with current vendors for product substitutions. By early summer, the number of N95 masks increased by more than 500% and the number of gloves increased by 325% compared to the same time period in 2019.
Moffitt nurses found ways to consolidate treatment to reduce the waste of isolation gowns, decreasing the number of gowns used by 8% compared to the same time last year.
Thankfully, Moffitt never ran out of any personal protective equipment during the first wave of the pandemic. At its lowest point, the cancer center had about one week’s worth of supplies for certain sized masks and gloves.
After securing necessary equipment and prioritizing patient care, the next challenge was COVID-19 testing. At the beginning of the pandemic, Moffitt had to send samples to a lab in Salt Lake City, which could take up to two weeks for results.
With an immediate need for an in-house test, Moffitt’s labs validated their own. The COVID-19 screening clinic can now give some patients same-day results, with the chance of receiving a false negative result less than 1 in 1,000.
“If a patient gets a positive result in our screening clinic, we are postponing surgery or treatment if we can, and if there is a negative result we know with 99.9% accuracy they don’t have COVID-19 and we are comfortable going through with surgery or treatment,” said Bryan McIver, MD, deputy physician-in-chief.
Between May and August, Moffitt tested more than 2,700 patients, running about 100 to 120 COVID-19 tests daily. The center has set a goal of being able to run up to 1,000 tests a day.
Even before the pandemic, the Sapiens lived a cautious life. In April 2019, Landen started feeling ill a few days before his seventh birthday. A doctor at a walk-in clinic asked if there was a family history of leukemia and recommended seeing a pediatrician for a blood panel. The pediatrician diagnosed Landen with tonsillitis, and the family walked out triumphantly.
Cancer, Amy told herself, what a crazy thought.
Days later, the family was at a pet store shopping for a fish when Landen collapsed. His skin was gray, lips white and he was disoriented. Landen was admitted to the hospital and diagnosed with a very rare pediatric cancer called T cell acute lymphoblastic leukemia. He began what will be a grueling 3 ½ years of treatment.
With an immunocompromised child at home, the family rarely left the house. Amy had all of the groceries delivered and they missed their extended family Christmas celebrations when a relative got sick.
“We didn’t go anywhere,” said Amy. “We probably left the house four times in the past year because even the flu could kill Landen when he didn’t have an immune system.”
In February, the family was watching a movie together in bed. Amy’s husband, Callen, moved his arm out from underneath his wife. “What is that?” he asked her. “Is that a lump?”
Both Amy’s mother and grandmother had breast cancer, but Amy had tested negative for a BRCA mutation, an inherited gene that increases risk. She had put off her mammogram in 2019 when she turned 40 because Landen was at the height of his treatments.
A biopsy showed Amy’s left breast had invasive lobular carcinoma, a type of breast cancer that begins in the milk glands and spreads. She would need a mastectomy. She asked to have both breasts removed. But because of the COVID restrictions, having her other breast removed would have to wait, since that surgery was deemed elective.
“Whatever I can do to put an end to this as quickly as possible,” said Amy. “I have a kid who is sick and I need to be in fighting shape as long as possible.”
After surgery, she began 12 weeks of chemotherapy.
Amy dyed her hair pink and shaved it into a mohawk to match Landen’s. She was determined to show her boys that she is not a victim. That she is not going down without a fight.
“I have to have chemotherapy four times, my son has had it hundreds,” said Amy. “We can’t even put us in the same arena.”
When Landen transitioned to maintenance therapy this spring, the family was looking forward to getting out more. Landen was taking oral medication at home and his immune system was building back up. He was excited to see his cousins, go out to eat and return to school in the fall.
COVID-19 ruined those plans.
“It feels like there is a kid using a magnifying glass to burn the ants and we are the ants,” said Amy. “We could almost see victory with maintenance therapy coming and then I got hit with breast cancer and then wait, there’s a pandemic with no vaccine.”
COVID-19 meant no big eighth birthday party for Landen. Instead, he had a water balloon fight with his cousins with a “no man’s land” in the middle of the field to keep everyone at a safe distance. He will now be learning virtually for third grade instead of in the classroom with his friends. The Sapiens don’t accept meals from neighbors and politely decline offers from others to clean their house. They are more isolated than ever before.
“These are times where we would be relying on others to help, but we just can’t take that risk,” said Amy.
As coronavirus cases surged in Florida and other states over the summer, and patients and families like the Sapiens stayed close to home, Moffitt continues to stock up on personal protective equipment and use data collected from the first waves to help identify the start of a new peak earlier.
“The fact that we have been through the first waves makes us more knowledgeable on how to prepare,” said Keenan. “We can do a lot of planning, but no one will know if the next wave will be similar to this one, worse or better.” Another wave hitting during flu season can also complicate things.
While it is still uncertain what the world post-COVID-19 will look like, one thing is for sure: Things will never be the same.
“There is no question that COVID-19 jolted us into a new way of thinking and there’s a lot asking, what will this new normal be?” said Keenan.
The new normal could include social distancing for the next year and a large majority of the workforce working from home full time. About half of Moffitt’s nearly 7,000 team members worked remotely at the beginning of the pandemic.
Moffitt’s more robust telemedicine program has forever changed the ways patients can access care. The cancer center can how use the technology to deliver care to patients who are too sick to travel or live far away.
The Sapien family is also embracing its new normal. Both Amy and Callen are back to work, and Callen’s mom quit her job so she can help care for Landen and Corben without fear she has been exposed to the virus.
While they didn’t get to celebrate Landen’s birthday and start of maintenance therapy the way they imagined, the Sapiens did follow through on the promise of a puppy. River the Bernedoodle, half Bernese mountain dog and half poodle, joined the family in May. Training a new puppy brings chaos, but also the positivity and normalcy the family has been craving.
As Amy and Landen continue their treatments, they will lean on each other, safe from the dangers of the outside world. And like the tattoo on Amy’s leg says, they will just keep swimming.