There’s no place like home: Josie’s story of battling cancer during coronavirus (COVID-19)
It was September 11, 2019 – a day that will be etched in Jennifer Economy’s memory forever. Her then 9-year-old daughter Josie was diagnosed with cancer. Six months before the rest of the country began social distancing due to COVID-19, the Economy family went on lockdown.
“Even before COVID-19, this was a scary situation. We wanted to protect Josie from any and all germs,” said Jennifer. “Now, it’s a million times worse.”
Cancer during the coronavirus pandemic: How we are implementing a safe plan for Josie's care
A startling diagnosis, a safe plan for care
One day Josie was a star in dance team and the next she couldn’t walk. Doctors determined it was the result of a tumor at the base of her spine that grew to be the size of a baseball. Ewing sarcoma is the official diagnosis, a rare type of childhood cancer that develops in the bones or soft tissue around the bones.
Josie began treatment immediately, predominantly consisting of inpatient chemotherapy in rounds of two or five days at a time. In between, she gets labs drawn to test her blood counts and determine when she’s ready for the next round. In addition to chemo’s intended purpose of attacking the cancer, it can damage healthy cells including those in the bone marrow that make blood cells. The body needs time to rest, recover and build new healthy cells before it receives more chemo.
Since mid-April, Josie has been able to get these labs drawn at home – one of the safety measures CHoR put in place to protect patients from coronavirus.
“Doing home labs gives me the important information I need for treatment planning while at the same time not exposing the kids to too many people by coming into clinic,” said Dr. Frances Austin, one of Josie’s oncologists. “Many of our kids are immunocompromised and exposure to COVID-19 could be very dangerous for them.”
The blood labs look into the complete blood count, including white blood cells, red blood cells and blood platelets. Blood chemistry tests, also part of the labs, provide information about kidney and liver functioning. If the labs indicate that the bone marrow, kidneys and liver aren’t working well enough, the next round of chemo is pushed back.
Care in the comfort and safety of home
Crystal Aiken is the primary mobile lab RN for pediatric hematology and oncology, visiting 5-6 patients a day. The stop at Josie’s house is always a highlight.
“Josie is like walking sunshine, sunny side up even on her worst days,” said Crystal.
Jennifer echoes this sentiment. “When it’s my husband’s turn to stay at the hospital with Josie and I’m home, I’m reminded just how special she is. My son, Max, and I often say it feels like the life is out of the house when Josie isn’t here.”
Jennifer and Josie are quite fond of Crystal as well. “She always brings light when she comes in the house. Crystal is an expert,” said Jennifer.
Josie has a portacath, an implanted device that allows direct access to a central vein, which is common for people who need regular injections, chemotherapy or other medical treatments. With the help of numbing cream, this thankfully means she doesn’t feel the needle sticks each time, a small blessing in this difficult journey. It also helps Josie’s emotional health that she can be in her own comfortable surroundings with her Legos, stuffed animals and Harry Potter books, rather than a waiting room, until Crystal arrives.
“When kids have cancer or blood disorders, their immune systems are fragile – but I’m always amazed how resilient and strong they are in spirit, even in the midst of this pandemic. I am absolutely positive that home visits are the right thing for these patients and their families right now,” said Crystal.
“The fact that we don’t have to expose her is a huge relief. It could mean life or death for her,” added Jennifer, who will go to any length to keep her child safe.
A life with passion and purpose
Josie’s life is one lived with gusto. While she’s not dancing or swimming right now, she continues to sing.
“There’s nothing cuter than a Lizzo sing-a-along with the nurses in the hospital while Josie is getting her port accessed,” laughed Jennifer.
She’s also passionate about arts, crafts and caring for others. Only someone as beautifully kind as Josie would team up with her brother to bring comfort and joy to other kids in the hospital by distributing quilts through the Quilts for Kids program, while in the midst of her own greatest battle.
The Economy family celebrated Josie’s 10th birthday on April 29, in quarantine at home. They couldn’t go ice skating and out to Plaza Azteca with friends the way Josie had done the year before, but they did the next best thing and brought takeout to her. The birthday girl even got her own bowl of queso! Knowing there’s a long road ahead, they’re dreaming of an even bigger party to come.
Today’s trials bring tomorrow’s celebrations
“We tell everyone at the hospital that when this is all over – coronavirus, chemo, everything – we’re going to have a party to end all parties. We’re going to invite everyone – from the people who have been bringing her food, cleaning her room and parking our car, to doctors, nurses, friends and family. We are going to surround Josie with all the people who have been part of her journey, just to thank them.”
They’ll have to find a gigantic venue because Josie has spent her decade-long life making a lot of friends. As far back as kindergarten, if she was absent for a day her classmates would be lined up to welcome her back. Last year, she was voted class president. Even though her peers knew she would miss most of the school year, they still wanted to nominate her again this year. They hung a picture of Josie in the classroom and high-fived it every day, and the entire fourth grade did a virtual craft with her via Hopecam over the holidays.
Without a doubt, Josie’s celebration will be one for the books – but for now, friends will continue loving her from afar and Crystal, Dr. Austin and her entire CHoR family will keep fighting right alongside her, whether at home or in the hospital.