By Randy Dotinga
Like most little girls, 4-year-old Kaylee knows her way around princesses, bows and stuffed animals. And, unlike most little girls, she’s an expert in leukemia.
With the help of a plush bone toy filled with stuffed cells, Kaylee has learned about platelets, white and red blood cells, and how the treatment she’s undergoing aims to boost her immune system. She now understands that the “yucky cells”—the yellow toys that represent leukemia—are the target of her therapy.
Fortunately, her prognosis is excellent. Maybe her experience will inspire her to become an oncologist or a cancer researcher someday. Or perhaps she’ll be inspired by the nurses at Rady Children’s Hospital-San Diego who treat her, a team that includes her own mother.
Kaylee’s mom, Kelly Mikulsky, is a nurse at the inpatient oncology unit. She and her family now find themselves on the receiving end of her team’s warm and friendly care, an unusual blending of work and home life that has provided comfort in these challenging times.
“It’s great to have that trusting relationship with the nurses and the doctors,” Mikulsky says. “They’ve been amazing from day one.”
A Commitment with Deep Roots
Growing up in San Marcos, Mikulsky lost her childhood best friend, Jessica, to cancer.
“When I was 12, she was diagnosed with a rare type of solid tumor,” she recalls. “For 26 months, she had chemotherapy and radiation. But her tumor ended up coming back, and she passed away when we were in seventh grade.” The loss was devastating, but it laid the foundation for her future calling.
As the daughter of a sportswriter and an advertising executive, Mikulsky initially resisted the call of medicine. “I didn’t want anything to do with any of that,” she says. But the experience of helping her friend through treatment wasn’t easily shaken. “I’d spent the night with her at the hospital when she was getting her chemo, and I’d go to her radiation treatments. It made me want to help other families in that situation.”
She started her career in nursing, without settling specifically on oncology. Then she landed an opportunity to join an internship program at a pediatric oncology inpatient unit. She worried it might be too much to handle, but she thrived. “I took the position, and I loved it,” she says. “I started working in pediatric oncology at the Children’s Hospital of Central California, then I came to Rady Children’s in 2008.”
Kaylee’s Battle Against Leukemia Begins
Since joining the Hospital nine years ago, Mikulsky has had two children with her husband, Jared, a California Highway Patrol officer. Kaylee is 4 and Drew, who’s comforted his little sister throughout her cancer ordeal, is 7. Kaylee was just over 2 years old in early 2016. Following months of on-and-off colds, she began to have high fevers, and when one spiked to more than 107 degrees, physicians at Rady Children’s discovered leukemia cells in her blood. “Everybody was really upset,” Mikulsky recalls. “The doctors came down and talked to me about what was going to happen. But I knew exactly how the next month would play out, because I worked there. Within 24 hours, they’d aspirated bone marrow, performed a lumbar puncture, put in a central line and administered chemo into her spinal fluid. It was a lot to take in, but I understood everything that was happening.”
Turning the Tide Against Pediatric Cancer
The 19 attending physicians at the Peckham Center for Cancer and Blood Disorders treat more than 250 new pediatric patients every year with a variety of childhood cancers. Leukemias, lymphomas, soft tissue sarcomas; brain, bone, kidney, adrenal and liver tumors; they’ve seen it all.
Thanks to medical advances, the majority of childhood cancer patients treated here have an excellent prognosis. “We now cure 80 percent of all pediatric cancer patients,” says Deborah Schiff, M.D., hematologist/oncologist at the Peckham Center and clinical professor of pediatrics at UC San Diego School of Medicine.
The center, which takes up the entire second floor of the Acute Care Pavilion, is a national leader in pediatric oncology care and clinical research, offering 38 private rooms and advanced air filtration to protect patients with sensitive immune systems. An adjoining play area, Carley’s Magical Garden, is specially constructed to reduce the threat of illness from germs and mold. The goal is to make patients, and their families, as comfortable as possible. “We have an Integrative Medicine Program and a Palliative Care Program,” Dr. Schiff says, “so we treat our patients’ symptoms as aggressively as we treat their cancer.”
Helping a 4-Year-Old Cope
To help patients understand their treatment as it happens, Rady Children’s dispatches its child life specialists, who educate with tools like dolls, children’s books and real medical supplies. The 15 team members sometimes find themselves nicknamed “the toy ladies,” but their role is serious. “We help patients cope and express their hospital experience through play,” says child life specialist Andrea Sherman. “We also work closely with siblings, since families are—appropriately—overwhelmed and consumed with the daily needs of their sick child.”
The Hematology/Oncology inpatient clinic is just one of many Hospital units where the Child Life team is active, and it hopes to expand its services even further with the help of charitable donors.
In addition to helping kids express their feelings, child life specialists educate them about their conditions and treatments. “We firmly believe that it makes a difference when kids understand what is going on,” Sherman says. “Kids cope much better when they know what to expect and have had time beforehand to ask questions.”
When patients like Kaylee undergo bone marrow testing for leukemia, for example, they meet the plush bone toy. “We introduce the white blood cells, red blood cells and platelets, and explain that the doctors are going to do a test,” Sherman says. “They will be asleep when the doctor takes a tiny sample of the bone marrow to see if their cells are all doing their job or if any of them are sick.”
If they’re diagnosed with leukemia, the children learn about the cells that are making them sick and the treatments that aim to vanquish them.
For Leukemia Patients, a New Era of Promise
Before the 1970s, leukemia was always fatal. “Pediatric cancer treatment today is risk-adapted, meaning that we treat higher-risk cancer more aggressively than low-risk disease,” says Dr. Schiff. “This improves overall outcomes and decreases unnecessary side effects.” Today, patients like Kaylee have more than a 90 percent chance of being cured. “Pediatric cancer treatment today also includes targeted therapy, which specifically targets cancer cells while sparing healthy cells,” says Dr. Schiff. Rady Children’s is currently developing a program to treat relapsed and refractory acute lymphoblastic leukemia patients with an exciting new immunotherapy.
Kaylee continues to undergo leukemia treatment and won’t be finished for another year. In the meantime, her mother has recently returned to work, newly humbled by the generosity and compassion of her coworkers. “Everyone has pulled together,” she says, “and that’s made this much easier.”
This story originally appeared in Healthy Kids magazine: http://www.sandiegomagazine.com/digitaleditions/healthy-.kids-summer-2017