Even as the lump on Lucas Jones’s lower abdomen did not respond to antibiotics and grew at an alarming rate, his parents didn’t imagine cancer.
“It was a shock,” said Robert Jones, eight-year-old Lucas’s father and son of Knoxville music store owner Bill Jones.
He was on the couch at home, Lucas on his dad’s lap as he was still recovering from his biopsy. Jones, trying to keep it together for his boy, turned away while the tears formed in his eyes. Lucas wrapped him in a hug.
“Papi, it’s going to be ok,” he said.
That was right after Easter. This Monday, Lucas finished six weeks of treatment at Provision Center for Proton Therapy.
The past few months have been a whirlwind as the Jones family has dealt with Lucas’s extremely rare condition, alveolar rhabdomyosarcoma, a cancer developing from skeletal cells gone rogue. Just 350 cases of rhabdomyosarcoma are diagnosed each year, with an even smaller subset with Lucas’s type. By the time they pinpointed the problem, the cancer had reached his bones.
The family’s community rallied. One of Lucas’s classmates at Rocky Hill Elementary shaved his head in solidarity and his mother coordinated a kick-a-thon and Star Wars-themed fundraiser, complete with a Mace Windu impersonator who traveled from Chattanooga for the occasion. The story was covered by all the local television stations.
“A lot of people reached out and helped us,” Robert Jones said. “I don’t know where we would be without that.”
As they grappled with their new reality, both Robert and his wife, Karina had peripherally heard of proton therapy, not even realizing the cancer treatment center was on their regular route to work and school.
“We never looked up this hill,” Robert Jones said, referring to the ridge of Dowell Springs medical campus where the proton center is located.
Robert Jones had met a piano tuning customer with throat cancer who wanted proton therapy instead of conventional radiation but was denied coverage by his insurance company. Karina had also heard about proton therapy. Because of protons’ ability to target tumors only, unlike conventional radiation, the treatment could help spare Lucas’s sensitive digestive and reproductive organs from unwanted radiation exposure.
“We were studying all of it,” Karina Jones said. “We sent all his medical information to Provision.”
The family also looked at St. Jude’s Research Hospital in Memphis. But after talking with parents of children who had been treated at Provision, the Jones’s decided they wanted to be close to home and family, including their older sons, ages 12 and 17.
They’re happy with their decision.
While there’s a long journey ahead, right now “the primary tumor seems to be gone. It’s not detected on the scan,” Robert Jones said. Additionally, the cancer in the bone marrow appears to be responding to treatment.
“For me, it’s been amazing,” said Karina Jones as Lucas played video games in Provision’s children’s lounge. “Provision informs us about everything. It’s more like a hotel or spa. It’s not like coming to a doctor’s office.”
Then there’s been the personal touches, like one of Lucas’s radiation therapists, Erin, sewed together two of Provision’s too-small pediatric gowns to make one large enough for modesty. They made sure to play classic rock during his treatment sessions. Another therapist brought a box of blueberry donut holes, his favorite, on the next-to-last day of treatment.
“It’s so much more than just providing medical treatment,” Robert Jones, said. “We feel love and concern for our child.”