Three patients, three protocols: Making progress through cancer research

Ding-ding-ding! Caleb always answered the bell, that shrill signal to the start of a pro wrestling match. Whenever a bout aired on TV, he transformed his home into an imaginary ring and then put on a wrestling belt and began imitating his heroes by — whomp! — leaping from furniture and — bam! — practicing drop-kicks or — oomph! — grappling with pillows.

Watching it all, Caleb’s mom, Tanika, couldn’t help but be amused. But she also had to wonder: How does a 10-year-old who is in the grips of blood cancer summon such energy?

The answer had a lot to do with the advanced protocol doctors at St. Jude Children’s Research Hospital followed in treating Caleb for the acute lymphoblastic leukemia he was diagnosed with in 2017.

Called Total Therapy 17, it’s the first protocol guided largely by analyses of the patient’s DNA. Genomes of leukemic cells and normal host cells are sequenced so chemotherapy and other treatments can be individually tailored to minimize side effects while ensuring the cancer is eradicated.

With her son now 13 and finished with treatment, Tanika looks back and marvels at how few complications there were. “He just remained happy throughout the entire treatment, which was a shock to me.”

Caleb, to be sure, is a living, breathing symbol of progress, a testament to how St. Jude has steadily refined treatment protocols to boost survival rates for ALL, the most common form of childhood cancer, from 4 percent when the hospital was founded in 1962 to 94 percent today. At the same time, the advancements have improved patients' quality of life.

The protocol that benefited patients like Caleb was tested in a study — the 17th in St. Jude history — assessing new ways of treating ALL. Each study has built on the results of previous clinical trials, as well as on discoveries by St. Jude investigators and scientists at other institutions around the world. 

A process initiated with those early, groundbreaking protocols that by 1970 enabled St. Jude to issue an astonishing statement — "Leukemia can no longer be considered an incurable disease" — has progressed into the 21st century with further advancements in care for ALL.

But if Caleb is one of the faces of Total 17, the experiences of two other patients — Brian and Mason, treated with Total 15 and Total 16 protocols, respectively — also help tell the story of recent progress at St. Jude.

For Brian, just 4 at the time, nausea from chemotherapy was such a constant that he seemingly got used to it — even during Halloween, when he rode in a red wagon to go trick-or-treating among nursing stations in St. Jude.

“Brian would throw up, get back in the wagon, go to the next nurses’ station, collect his candy, then throw up, get back in the wagon and go to the next nurses’ station and get his candy,” said his mom, Nancy.

The year was 2004, and Brian was being treated for ALL under the St. Jude Total 15 protocol.  As is often the case, the leukemia diagnosis was totally unexpected for the active Florida youngster who enjoyed swimming and fishing.

Compared to previous clinical trials, Total 15 offered a number of benefits, his parents were told. There was one advance they noticed most: This was the first treatment plan that discontinued the use of cranial radiation in treating ALL.

St. Jude had pioneered the practice of using radiation in combination with chemotherapy to steadily raise survival rates for the disease. But removing radiation from the treatment plan promised to eliminate some of the side effects it can cause, such as cognitive and verbal deficits and problems with motor skills.

Based on studies of patients like Brian, St. Jude in 2009 was able to announce that with effective, personalized chemotherapy, cranial radiation can be safely omitted from the treatment of children with ALL.

Today, Brian is a lanky 20-year-old who remains cancer-free and is studying marine engineering in college. He enjoys surfing and wakeboarding while also working and training as an ocean rescue lifeguard.

“All during the treatment, he was never reluctant to come to Memphis. It was never like, screaming, crying, ‘Oh, my God, I don’t want to go there, it’s a pain place…,’” his dad, Patrick, said.

“In the course of 3 1⁄2 years of chemotherapy there were bad days, but from a 10,000-foot level he responded very well to the treatment.”

Brian still experiences minor after-effects of the chemotherapy, sometimes having trouble memorizing details while studying for subjects like English and statistics. He has no problem, however, with electrical classes that relate directly to boats.

His father is thankful Brian came out of it as well as he did.

“At least we were spared the radiation.”

If you grow up in the Ozarks, you’re not going to let cancer get in the way of outdoor fun. At least that’s how Mason’s parents felt.

They allowed their boy to fish, camp and ride on a four-wheeler even after his diagnosis of acute lymphoblastic leukemia in 2013 at the age of 4.

“We tried to not keep him in a bubble so much,” said his father, Matt. “We tried to keep a steady lifestyle for him.”

The Missouri youngster received treatment at St. Jude under a protocol known as Total 16. It introduced improvements that further reduced the occurrence of a type of relapse in which leukemia cells invade the central nervous system. The clinical trial also yielded high survival rates, even when high-risk patients and infants were included.

Mason’s parents felt reassured by the reduced relapse risk provided by the protocol. The boy experienced some difficulties, including a high fever that prompted St. Jude to have him flown by a private jet to Memphis for a 12-day stay at the hospital.

For the most part, however, “he responded great” to the protocol, with few side-effects, Matt said. “There were definitely some bad moments, but the care was unbelievable.”

Today, 11-year-old Mason is finished with treatment, and he remains in remission.

He also remains a budding outdoorsman. In addition to hunting and camping, he has a special love for fishing and swimming in the cool, clear, spring-fed waters of the nearby Eleven Point River.

“He’s a duck,” his dad said. “It’s hard to get him out of the river when he’s in it.”