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“Independence Day” will soon take on a whole new meaning for the Prust family of Watertown, Wisconsin. On July 3, 2022, one day before Independence Day, 4-year-old Violet, a cancer patient at UW Health’s American Family Children’s Hospital, will receive her final dose of chemotherapy, 27 months after being diagnosed with a form of childhood leukemia known as ALL (acute lymphoblastic leukemia).
Before looking ahead, however, let’s turn the clock back for a moment to late March 2020. COVID-19 has just hit. Remote work and schooling are just beginning to take hold while “shelter in place,” “flatten the curve” and “community spread” enter our vocabulary. For Violet’s parents, Korbyn and Brandon, the anxiety of trying to cope with a rapidly spreading pandemic is nothing compared to what is going on in their own home.
On March 24, 2020, Korbyn — who was in the hospital after delivering her second child, Ben — received a call from her mother, Trish, who was taking care of Violet. Suddenly and inexplicably, Violet, then age 2, was noticeably limping.
Korbyn and Brandon returned home with their newborn the next day. Violet’s pediatrician told the Prusts to take Violet to the Emergency Department at American Family Children’s Hospital. Twelve hours and several tests later, everything appeared to be fine.
Three weeks later, however, leukemia cells appeared in Violet’s blood. The diagnosis wasn’t yet certain, but signs clearly pointed toward cancer.
“The nurse told us to come back to the hospital for one more blood test and pack a bag for a week,” Korbyn says. “I refused to believe the worst, so all we packed was a phone charger.”
Indeed, the diagnosis was leukemia, and the Prusts were devastated. Korbyn barely knew what to do, having known only two people — an aunt and her husband’s grandmother — who had been touched by cancer.
Difficult news, but an excellent prognosis
“This was a whole new world for us,” Korbyn says. “Fortunately, the doctors told us that Violet had a better than 95-percent chance of being cured. So, we had a diagnosis, an excellent prognosis and an outstanding care team. It wouldn’t be easy moving ahead, but the reassurance of being in the right place meant everything.”
Caring for a two-year-old child with cancer and a new baby, all while living with newly issued COVID-19 restrictions that prevented siblings and visitors from coming to the hospital, was very challenging.
Korbyn and Violet moved into the childhood cancer unit at the hospital. Baby Ben went back to Watertown to live with Grandma Trish, while Brandon went back to work after using up his three weeks of parental leave. Grandma Trish even drove Ben from Watertown to Madison every day so Korbyn could breastfeed him.
“We were struggling,” recalls Korbyn. “Violet felt miserable. She stopped eating and drinking, and then her limp turned into not walking at all for five months. I was also dealing with postpartum depression and COVID was isolating us from friends and family members who could have been helpful. It was a sad and scary time.”
Because Violet wouldn’t eat, she took her food, water and medications through a special tube inserted through her nose, down her throat and into her stomach.
“The tube finally fell out nearly a year later, so the nurses told us to leave it out and see if she would eat on her own,” Korbyn says. “A few chicken nuggets and fries turned out to be Violet’s secret sauce, so at least she was eating on her own. Finally, we felt like she had a win.”
Custom treatment provides hope; minimizes side effects
Over the past two years, Violet received several rounds of in-hospital chemotherapy infusions to kill cancer cells, combined with steroids that help the chemotherapy work better to destroy any remaining cancer cells. She also takes chemotherapy medication at home in pill form.
“Most patients experience unpleasant side effects from chemotherapy and steroids, and children are no exception,” says Dr. Carol Diamond, Violet’s UW Health Kids oncologist and member of the UW Carbone Cancer Center. “Fortunately, childhood cancer research over the last 30 years enables us to customize treatments so we don’t give more medication than is necessary. Violet is among those who need fewer steroids than others, which not only takes less of a toll on her now but also reduces the severity of any potential side effects for her later in life.”
Children undergoing chemotherapy typically have a port placed in their chest that allows for easy vein access without endless needle pricks. To make it easier for her nurses to access Violet’s port, her Great Grandma Bev made an entire wardrobe for Violet of “port-friendly” shirts, dresses and sweaters in various sizes and colors.
“Bev once had cancer herself, so she feels especially connected to Violet, who loves having so many clothing options,” Korbyn says. “Bev is truly an angel.”
“Independence Day” will be bittersweet
With Violet’s last round of chemotherapy just a few months away, there is no shortage of gratitude Violet’s family expresses for their daughter’s care.
“I’m looking forward to the end of treatment for many reasons,” Korbyn says, “but it will be hard not seeing everyone at American Family Children’s Hospital quite as often.”
Violet loves her care team, including Dr. Diamond; Dr. (Christina) Amend (a pediatric cancer physician who is completing her training); Kari Weier, CPNP, a UW Health Kids nurse practitioner; Emily Gulczynski, RN; Carly Baumann, a Child Life specialist; and even Kiko, the children’s hospital’s therapy dog.
“Finishing a child’s treatment is sometimes bittersweet for families,” Weier says. “That’s why kids like Violet still return for regular follow-up visits for a few years. Not only do we keep a close eye on the child’s physical health, but it also provides reassurance to families as they gradually loosen the ties with their care team.