Her Facebook page — “Peyton Jones Putting Down Cancer” — is a joyful place now.
“Let the fun begin!” reads the latest posting, on Halloween.
It marked the third week since Peyton’s fifth and final round of chemotherapy over a rigorous 15-week schedule, which followed surgery to remove what her mother called a “cantaloup-size” tumor in her liver.
And it marked a new beginning, cancer-free, though there will be many tests and checkups over the years. But the new challenge for Peyton, 16, is to be patient while her hair returns.
“Everything’s done now. We’re good,” Peyton declared Monday at her family’s spacious, spotless home in southwest Arlington. “We’re all set.”
Until the rare cancer arrived, Peyton maintained a full plate of activities at Martin High School, where she took Advanced Placement courses and served with the Key Club, Student Council and Psychology Club. She was active as “state duchess” of the Children of the American Revolution and as an officer of the Mayor’s Youth Commission.
And she had just been appointed the student representative to the Arlington Park and Recreation Board.
“I’m naturally a very busy person,” she said. “I like to be involved in a lot of things, and be involved in the community, things like that.”
Then came a nagging pain in her right shoulder. At first it was easy to blame the activity that requires the most of her time and energy — volleyball. She played on the Martin team and a private club team, and practiced most of the summer to get ready for the next season.
Her conditioning slipped. “When we were running, I was always one of the first ones” to finish, she said. “Then I would always be one of the last ones. I didn’t know why. I just thought that I didn’t have the passion for it that I used to. I felt I wasn’t giving it my all.”
Her mother, Lesa Jones, said the family overlooked the symptoms.
“She never really had been a kid who was sick like that — just flashes of fever that we thought were just stomach bugs. And it turns out it was probably symptoms of liver disease, and it was probably over a year’s time,” Jones said. “We feel very fortunate we caught it when we did. She was a very sick little girl.”
The pain only got worse, leading to several misdiagnoses by doctors. But when Peyton fell off a paddle board during the family vacation last summer in Florida, the tumor caused a sharp pain in her right side, giving away its location.
As of right now, there’s no evidence of cancer, so that’s great. We’ll keep monitoring her.
Oncologist Jonathan Wickiser
That helped doctors at two Florida hospitals to identify a large, solid mass on Peyton’s liver. They sent her to Children’s Medical Center of Dallas, where Dr. Dev Desai, a pediatric transplant surgeon, was able to remove the entire mass cleanly, taking about 70 percent of the liver and part of the diaphragm where the tumor had also attached itself — providing a likely explanation for the shoulder pain, doctors told the family.
The tumor was an “undifferentiated embryonal sarcoma” of the liver, and Peyton’s was one of only a handful of cases that occur in children each year, said Dr. Jonathan Wickiser, her oncologist. Lymph nodes removed from the around the liver were free of cancer cells, but the chemo regiment was ordered has a precaution, he said.
“As of right now, there’s no evidence of cancer, so that’s great,” Wickiser said. “We’ll keep monitoring her.”
Peyton started going to the hospital in late July to take intravenous chemotherapy and anti-nausea treatment on Friday, Saturday and Sunday, repeating every third week for 15 weeks. But the two weeks off between treatments rarely allowed time for recuperation and recharging, as was hoped. Fever symptoms always followed the chemo sessions and sent her back to the hospital for lab work, antibiotics and blood transfusions.
“Taking temperature every day, taking medication and back-and-forth hospital stays,” said Lesa Jones. “We had her bag packed all the time — like a pregnancy bag. Each treatment got worse as far as her body reacted. She never made a full week of school.”
Peyton tried. But she couldn’t keep up with her honors courses, and the long hallways and staircases wore her out. Eventually she decided to transfer to Northstar School, a seventh- through 12th-grade private school in Arlington with an enrollment of just 50 students, according to its website. Martin has nearly 3,500 students.
“It definitely suited our situation,” her mother said.
Hair today …
Her golden locks started falling out in August, a week or so after her first of round of chemotherapy. She knew it would happen. She even prepared for it by having her nearly waistlong hair cropped. But when the clumps started coming loose in her hands, it was unnerving.
“There was an initial shock to it, because no teen-aged girl wants to lose her hair,” she said. “It was definitely hard.”
Finally, Peyton asked her hair dresser to come over on a Sunday morning, and her friends watched and cajoled as she was sheared to the scalp, beating chemo to the punch.
She has a wig she uses sometimes, like during some family events, but mostly she goes bare-headed. A silver lining, her mom chimes in, is that Peyton now knows her head “has a really pretty shape.”
Peyton’s mom pushes her to tell the story of a trip to the movies on a rainy night with a carload of friends when another clump of hair came loose in her hand.
“I went to grab it and throw it out the car window,” Peyton said. “But the wind carried it up to the windshield, and the wipers we sweeping it back and forth.”
Peyton has a sizable and committed support group of family — including father Lance and older brother Ryan — and friends from school and St. Barnabas United Methodist Church in Arlington, and it’s probably why she almost always says “we” instead of “I” in describing her reaction to the cancer and treatments..
Dr. Wickiser noticed their cheerleading efforts. “She was very resilient and always kept her head,” he said. “She was optimistic throughout the entire procedure.”
It was really a cool thing — you’re here for like three or four days just feeling crappy, and you come home and you have a little gift waiting on you.
Peyton Jones on her “Chemo Fairies”
The support wasn’t limited to the hospital. A group of her friends made sure that after each round of chemo, Peyton would arrive home from the hospital to find a gift at her front door — from her Chemo Fairies, she called them.
“It would be just a little something with a note,” Peyton said. “It was really a cool thing — you’re here for like three or four days just feeling crappy, and you come home and you have a little gift waiting on you.”
She doesn’t know exactly who has given which gift, said twin sisters Mallory and Miller McCurdy, who said they chose a pajama outfit and fuzzy socks as their spirit-lifter. They were among five Fairy tandems, each assigned to deliver a gift following one of the five chemo weeks.
“We’re all going to have a little brunch and reveal ourselves in a couple of weeks,” Mallory said.
Boosting spirits wasn’t easy at first, Miller said, because she was scared for Peyton. “But then I just knew that with her strength, she could handle any battle thrown at her.”
Peyton had just wrapped up her chemotherapy when Mayor Jeff Williams introduced her as the city’s new park board appointee during his State of the City address Oct. 24, to a sell-out crowd of 650 people. She was still a little wobbly so she was using a wheelchair, pushed by her mother, and as usual, wearing no wig.
But later that evening, she made it to her first park board meeting.
Williams had only praise for his next-door neighbor during a recent interview, saying she’s done “an incredible” job on his youth commission, which she joined in junior high school. “So it was kind of natural” to put her on the park board, he said.
We’re really thankful, and we’re looking forward to the season. It’s a great way to end this part of our journey.
Lesa Jones, Peyton’s mother
Peyton had applied for the park board’s one student-representative seat — a one-year term — in the spring, and was notified around the time of her surgery in July that she had been awarded the post. She offered to step aside because of her illness, her mother said, but a staff member called back and said the mayor would have none of that.
“She is beautiful, and she’s warm, very articulate and really an encourager. And very conscientious, too,” Williams said. “Of course, she is very courageous in her battle against cancer. She shows a lot of fortitude, because she doesn’t let it get her down.”
Peyton’s bout with cancer has probably eliminated volleyball from her future, because of the damage to her diaphragm, she said. And it’s changed how she sees things.
“There’s such a different feel to the world that you have,” she said. “You appreciate more of the small stuff than you did before.”
Her views on a career also have changed, but not so much what she wants to do as what she wants not to do. For example, a medical profession.
“I’ve spent my time in the hospital,” she said. “It’s definitely some people’s calling. And the nurses were so sweet and I appreciate what they do. It’s just not for me.”