Rare Cancer Doesn't Faze Josie and Her Expert Oncology Team
Rare Cancer Doesn't Faze Josie and Her Expert Oncology Team
During her time in the hospital, Josie's preschool gave her "chemo gifts" including crafts, treats and even handmade board games so she could play to pass the time.
Shannon and Eric Eshman will never forget Christmas Day 2019.
Their daughter, Josie, was 4 years old. Instead of enjoying time at home and opening presents that morning, they were traveling to nearby Cincinnati Children’s.
Josie’s skin and eyes were jaundiced. Her parents knew she was sick, but they didn’t know the cause or the extent of her condition.
Answers were revealed a few weeks later, after tests and procedures confirmed a tumor in Josie's bile duct, the tube through which bile passes in and out of the liver.
The diagnosis was rhabdomyosarcoma, a rare cancer that can develop anywhere in the body but is particularly challenging when located even more rarely in the bile duct.
From Rhabdomyosarcoma Diagnosis to Detailed Treatment Plan
Josie’s parents’ minds raced as they grappled with big questions for the Cincinnati Children’s oncology team and even bigger worries for their daughter.
“Number one: was she going to live?” said Shannon. “She was so young, and it was so traumatizing.”
But after speaking with Brian Turpin, DO, and other doctors and nurses from the oncology division, Shannon and Eric learned about the team’s vast experience. They felt reassured by Cincinnati Children’s history of successfully treating similar patients.
“This is a rhabdomyosarcoma subtype that is incredibly rare. But I think they were reassured—understanding how rare it was—that we recently treated two similar patients with hepatobiliary rhabdomyosarcoma, just prior to Josie,” said Turpin.
“For Josie, she was in that category of ‘most are cured, but not all.’”
Relieved to hear of the team’s experience with rhabdomyosarcoma and a plan to move forward, Eric and Shannon then received answers to their other pressing questions, including how long radiation treatment would last and what effects it might have on Josie’s body.
“When they presented the treatment plan, it was shocking. But it made us feel so much better as parents to know we were at the best place we could be,” said Shannon. “Dr. Turpin is just absolutely amazing. He took the time to sit down and talk with us.”
In sharing the detailed outline of Josie’s proposed treatment plan, Turpin and colleagues didn’t mind repeating information a second or third time, as needed.
“When you keep hearing things multiple times I think it helps,” said Shannon. “For us, we were able to really feel comfortable and confident in the plan moving forward.”
That’s the goal: for the family to have complete understanding and acceptance of the treatment plan.
“You take as much time as the family needs. And together as a whole group—care manager and social worker, nurses, nurse practitioners and [doctors] and Child Life—help the family understand each component of the therapy so together everyone understand the goals, from big picture to the day-to-day,” said Turpin. “It’s our job to develop that trust.”
Josie Benefits from Proton Therapy, Maintains Personality Throughout
With surgery a difficult option given the location of the tumor, Josie’s treatment plan focused on 67 weeks of chemotherapy and radiation, split into 14 initial cycles followed by 6 months of maintenance chemotherapy.
Despite everything she endured, Josie retained her sassy and spunky personality. She enjoyed wearing her pretty dresses, visiting the blue dinosaurs at the Burnet Campus, and making friends wherever she went across the hospital. She also didn’t want to miss preschool.
“She was always in dresses and bows and jewelry. And most days, she would be sedated in the morning for radiation, wake up and then go right to preschool,” said Shannon. “Nothing really seemed to faze her. And it still holds true to this day.”
Traditional chemotherapy and radiation did make Josie sick, and she was hospitalized from time to time for fevers and other issues, but overall she did well with the therapy. Shannon and Eric appreciated the proton therapy, specifically, as a way to decrease Josie’s overall exposure to radiation. This made it possible to avoid major surgery.
According to Turpin, both conventional radiation and proton radiation therapy offer “incredible accuracy for tumor control” for patients, but “the difference is when you have conventional radiation, you hit the target, and it keeps going.”
The goal is to limit the amount of radiation that goes beyond the target, in this case Josie’s liver, to avoid exposing healthy tissue.
“Proton [radiation] will stop where you want it to stop,” explained Turpin. “So, in sensitive tissues like the liver, that's incredibly important—the only way to feasibly treat the tumor and keep the liver healthy.”
“It’s pretty incredible to witness,” said Shannon.
Josie Reaches Important Remission Milestone
Josie’s family documented her journey, in part, through a series of images that show the tumor slowly shrinking in size during the course of her therapy.
“As she's gotten older, we've shown her pictures of her scans. We say, ‘Here's this yucky ball that's in your belly, and the medicine is helping to make it go away,’” said Shannon.
Today, Josie is 8 years old, and all that remains of her tumor is dead residue. She’s been in remission for over two and a half years. It’s an important milestone, since research shows that if a child with rhabdomyosarcoma is living two years after diagnosis with no evidence of tumor, the chance of the cancer returning is small.
“She tolerated therapy very well,” said Turpin. “My expectation is that her remission will ultimately mean cure and that she’ll not experience long-term complications throughout life thanks to proton radiotherapy.”
Josie, who will continue to be seen in the Cancer Survivorship Center, doesn’t like talking about her cancer battle. She’s too busy enjoying herself, including fun times with her dance, soccer and basketball teams. No longer dress-obsessed like she was in the past, Josie still maintains her fashion sense.
“She's always wanting to make sure her outfits are cute and that her hair's done,” said Shannon. “She’s a girly-girl, for sure.”
Josie with her family in September 2022. Back row (L to R): Tyler (brother), Shannon (mom), Eric (dad). Front row: (l-r) Siblings Brodie, Addy and Josie.
Josie has always loved visiting the animals when she comes to Burnet Campus.