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Rare cancer treatment leaves Provo teen hopeful

PROVO — Over roughly 15 years, Provo resident John Wright has become an expert in treatment options for tumors.

When his youngest child, Natalie, was 2, the engineer and his wife noticed she was drooling a lot and had trouble swallowing. An MRI revealed that she had a walnut-sized tumor above her brain stem. Five days later, doctors removed most of the tumor but some pieces were inoperable and remained in the stem.

Over the next decade and a half, Natalie underwent two more operations. Her second surgery left her without the ability to swallow and without sight and hearing on her left side. She was also required to use a tracheostomy tube for four years.

Wright said cancer patients usually have three options for treatment: surgery, chemotherapy or radiation. Most children do not receive radiation because it may affect parts of their bodies that are still developing.

But early on, Wright became aware of proton therapy as a fourth option, a type of radiation that targets a specific spot instead of treating the wide area that X-ray radiation would. With only two facilities in the nation using it at the time, this was not an option for their family.

"As a dad, you kind of look for what are your choices," he said. "Each time you just hope that you’re trying to do the best you can.”

In 2014, the Wrights learned that Natalie's tumor had again grown. The growth of proton therapy clinics allowed Natalie to be treated at the Rady Children's Hospital at Scripps Proton Therapy Center in San Diego, which opened earlier this year. Natalie, 17, finished her final treatment last week.

“It was kind of the first time I actually understood, you know, the process of getting the tumor out," she said. "I was a little scared at first because, you know, I was kind of used to the neurosurgery process."

Natalie said she felt good overall through the six-week treatment. The tumor is still there, but Natalie, her parents and her doctor are hopeful they have stopped its growth. It will take up to five years for the family to find out whether proton therapy stopped the tumor's growth.

Natalie has a low-grade astrocytoma, or pressure tumor, just above her brain stem. Its growth can affect nerves that regulate her ability to swallow or move the left side of her body. Proton therapy pinpointed the tumor specifically, minimizing the risk that other tissue in her brain would be damaged.

Her physician, Andrew Chang, compared the difference between X-ray and proton therapy radiation to the difference between shooting a shotgun and a target rifle at a circle on the paper. Both will reach the area within the circle, but one is more focused in its impact.

"When we give radiation to a patient, the patient's body doesn't care if that radiation's coming from … standard X-ray radiation or if it's coming from proton radiation. The body will react the same," he said. "The only difference would be that with the proton radiation I'm able to pinpoint that radiation better and not give as much or any radiation to those areas where I don't need to give that radiation to."

Although the proton therapy is beneficial for some, especially those with tumors near their brain stem or spinal cord, doctors say it is too soon to tell whether it is as effective or more effective than X-ray radiation in most other cases.

"The problem with proton therapy is in some ways it's still experimental," said Matthew Poppe, a radiation oncologist at Huntsman Cancer Institute.

Proton radiation clinics cost hundreds of millions of dollars to build, which may be why there are only 14 operating in the United States, and 10 on the way, despite the technology being available since the 1950s. While an area like San Diego may have the patient population to offset the cost, Utah currently doesn't. For example, Poppe estimates that Huntsman Cancer Institute sees five to six radiation oncology pediatric patients out of about 100 per year who are good candidates for the treatment.

Cost was not something that factored into the Wright's decision to pursue the therapy.

“It sounds like something you’d do before you go buy a car or something like that but, you know, when you’re talking about your child, I’m not sure that it’s a big part of the decision process,” said Wright, who still does not know how much of the bill the family will have to foot.

The Wrights are not shy about trying new therapy approaches. For Natalie's first surgery, doctors used a new hologram technology to digitally walk through her brain before operating. Doctors performing her second surgery used image guiding technology in its early days. And about a year and a half ago, doctors took a nerve out of her leg and put it in her face. Once the nerve catches on, Natalie should be able to smile symmetrically, something that has not been possible since her second surgery.

Natalie, who loves superheroes and drawing, is looking forward to her senior year at Timpview High School and hopes to eventually become a child life specialist to help other children who receive medical treatment.

"We view Natalie as a superhero in her own right, and her positive impact will be felt by children and caregivers here for many years to come,” Chang said in a statement.

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