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August 5, 2021
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Some children with cancer can stay close to home with new proton therapy treatment in Utah

Noah Leeb walks with his parents Jacque and James Leeb at the Huntsman Cancer Institute in Salt Lake City on June 21, 2021. Due to an expansion of Huntsman Cancer Institute, proton therapy, not previously available in Utah, is available for the first time in the Mountain West. (Annie Barker, Deseret News)

SALT LAKE CITY — When 9-year-old Noah Leeb, an avid BYU fan and a star flag football player, started getting severe migraines last December, his mom knew something was wrong.

“He’s a healthy, active kid, isn’t sick very often, so it was out of the ordinary for him to actually have such an intense migraine,” Jacque Leeb said.

A pediatric neurologist said the frequent headaches were likely caused by hormones.

“There’s that thing inside of moms that tells you when something maybe just isn’t quite that, and I know Noah best — we know Noah best — so we continued to push for an MRI just to rule out bigger things,” Leeb said.

In February, the family learned Noah has a brain tumor.

“It is like an out-of-body type experience. I think it’s one of those moments that you think about as a parent and hope never happens, it’s like right up there with one of your worst nightmares,” Leeb said.

The family knew their life would quickly change.

“You always think you don’t have time for things until something like this happens, and then this is all you do. This is kind of what you make the time for. Since February, he’s had two brain surgeries, we’ve been back and forth numerous times from the hospital, chemotherapy started in March and just ended a few weeks ago, and now we are on to radiation,” Leeb said.

While it’s something the family hoped would never happen, she said it’s been “as beautiful as cancer can be” due to the love that the family has experienced.

Among the blessings described by Noah’s parents, Huntsman Cancer Institute for the first time began offering a different type of radiation therapy at the new Sen. Orrin G. Hatch Center for Proton Therapy, where the young athlete started treatment last week.

And Noah, his two sisters and parents are grateful they got to stay close to home for all of his treatment.

“We were all like really happy that we didn’t have to split up with our dogs, our family and our friends,” Noah said.

A first for the intermountain region

“Proton radiation is another tool that we as radiation oncologists have to treat cancer. It’s a therapy that’s not for all patients, but for the right patient — both the right age, the right tumor type, the right location — it offers an effective treatment with lower long-term side effect risks than the current treatments that we have, that we’ve had previously,” said Dr. Matthew Poppe, pediatric radiation oncologist and clinical director of the new facility.

While doctors started treating patients there a few weeks ago, the center will officially open with a ribbon-cutting ceremony on Wednesday. The $31 million, 7,450-square-foot addition was funded by Huntsman Cancer Institute, Huntsman Cancer Hospital and Huntsman Cancer Foundation.

For the last eight to 10 years, Poppe said he’s sent an increasing number of patients to other centers with proton radiation. There’s a limited number of proton facilities in the country, he noted. Before now, the closest centers were located in Seattle, San Diego and Phoenix.

“These patients that I treat, I won’t have to have them pick up and move their family 12 hours away for four to six weeks of their lives. We’ll be able to keep their care here. Not only is it more convenient for them, but it means that that multidisciplinary care with surgery and medical oncology and radiation oncology can stay together for the entire course of their treatment,” Poppe said.

Family members from around the country rushed to the Leeb family’s side when Noah was diagnosed, Jacque Leeb said, describing it as a “ripple” of support.

“I think that’s what’s gotten us through this,” she said. “I would say most of it is because Noah’s outlook is so positive, but I think it reflects and it makes us say, ‘He’s going to make it through because he wants to, he’s a fighter, and he doesn’t get laid out for too long.’ But also, everyone else around us has just kind of reached out and not stopped reaching out,” she said.

James Leeb, Noah’s dad, said the family knew to include their relatives and to invoke “our faith, and to reach out to God, who we believe in, and just say, ‘Look, OK, this is the next thing for us, and how do you want us to best handle this? And here’s what we want, and help us figure out how that lines up with what you want.'”

Leeb said the medical specialists have also been “so involved” with helping Noah.

The things that have gotten him through the trial include “probably football and some Legos, maybe,” Noah said. “If, like, my counts are down, I’ll probably do Legos. If they’re up, I’ll go outside and probably play with my friend.”

“He went from being a very basic Lego builder to we were going to have to take out a second mortgage for Legos. He’s at the expert level where they say it’s 18 and up, or they show adults on the picture putting it together,” Jacque Leeb said.

A surgically-inserted port— which Noah nicknamed “Dave” — gives readings of his blood counts after chemotherapy, his dad said.

Noah said he would advise other kids going through big challenges to “just always stay positive. And don’t think about the bad stuff, always think about the good stuff.”

“I’ve had a lot of faith, we’ve said prayers, and I’ve just done all the stuff that my mom has told me to,” Noah explained.

“I guess you don’t know until you get to this point what families do. We didn’t know you have to travel somewhere to get the rest of the treatment. But when family is here and friends are here, and that support system is here, to have to uproot, my heart goes out to those families because you hit a milestone when maybe you’re done with the first treatments … and to have to actually, like Noah said, split, I can’t imagine having to do that, so it’s been huge,” Jacque Leeb said.

“If we would have caught this even a month earlier, we would have probably been still sent away, and we feel grateful, we feel lucky that we’re able to kind of represent the first patients coming through Utah and doing this, and I think this is going to be monumental,” she said.

“I think there’s been a thousand little miracles that have happened … the way that things have aligned, the timing, the treatments,” James Leeb added. “There were so many coincidences, and it just tells us that you’re never really alone.”

How does proton therapy work?

Proton radiation therapy is most commonly given to pediatric patients, but it’s sometimes recommended for adults depending on the type and location of their tumors. Poppe said about 5% to 10% of the patients seen in his clinic would benefit from proton radiation instead of the photon radiation that is typically recommended.

During radiation treatment, “packets of energy” in the form of electrons, photons or protons are generated and accelerated to high energies, Poppe said, and then they’re targeted at dividing cells. The packets of energy interact with the DNA of rapidly dividing cells to break the DNA and cause DNA damage, resulting in the death of the tumor cell, he said.

The difference between a proton and a photon is that a photon carries no charge. In photon therapy, an uncharged particle enters the body and then exits the body, while depositing energy in the process as it travels through the body. But because a proton carries a charge and more mass, it travels to a set distance in the body — to the tumor — and then stops, Poppe said. That means all of its energy is deposited without exiting through the body, so less of the body’s normal tissue needs to see any of that radiation, the doctor said.

“Therefore, it lowers the risk of both second cancers and potentially organ dysfunction that can develop later in life,” he said.

The ability to use protons therapeutically has been around for many years, he said, but the difficulty has come in the technology to economically produce a proton and to accurately target the proton.

“So that for the last 20 years has been done at certain select centers around the country. Due to the cost involved, it required very large centers that would usually serve populations many times greater than Salt Lake. Only recently has it been designed in a smaller footprint so the economy of scale is such that we could install a facility that would be right for the population of here of Salt Lake and the surrounding area,” Poppe said.

He noted that the Huntsman Cancer Institute serves most of Montana, Idaho, Wyoming, some of western Colorado and Nevada, and the new treatment facility could expand that reach to other states. Poppe estimates the new institute will treat 200 to 250 new patients per year

The doctor urges patients who think they might be a candidate for proton therapy to discuss it with their current care team.

“It is a multidisciplinary discussion in the treatment of cancer, so we get input from surgery, medical oncology and radiation oncology on how best to treat an individual patient’s cancer,” he said.

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