Noah Leeb walks with his parents Jacque and James Leeb at the Huntsman Cancer Institute in Salt Lake City on June 21, 2021. An expansion of Huntsman Cancer Institute makes proton therapy, previously unavailable in Utah, available in the mountain west for the first time. (Annie Barker, Deseret News)
SALT LAKE CITY – When 9-year-old Noah Leeb, an avid BYU fan and star soccer player, developed severe migraines last December, his mother knew something was wrong.
“He’s a healthy, active kid, doesn’t get sick often, so it was extraordinary for him to have such an intense migraine,” said Jacque Leeb.
A pediatric neurologist said the frequent headaches were likely caused by hormones.
“There’s that thing in moms that tells you when something might not be quite right, and I know Noah best — we know Noah best — so we kept pushing for an MRI to rule out bigger things,” Leeb said.
In February, the family learned that Noah has a brain tumor.
“It’s like an out-of-body experience. I think it’s one of those moments that as a parent you think about and hope it never happens, it’s like having one of your worst nightmares up there,” Leeb said.
The family knew their lives would soon 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 time for. Since February, he’s had two brain surgeries, we’ve been back several times and back from the hospital, chemotherapy started in March and ended just a few weeks ago, and now we’re on radiation,” Leeb said.
While it’s something the family hoped would never happen, she said it’s “as beautiful as cancer can be” because of the love the family has experienced.
Among the blessings described by Noah’s parents, the Huntsman Cancer Institute first began offering a different type of radiation therapy in the new Sen. Orrin G. Hatch Center for Proton Therapy, where the young athlete began treatment last week.
And Noah, his two sisters and parents are grateful that they were allowed to stay close to home for all of his treatments.
“We were all very happy not to 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 radiotherapist-oncologists have to use 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 – the offers an effective treatment with lower risks of long-term side effects than the current treatments we have, that we’ve had before,” said Dr. Matthew Poppe, pediatric radiation oncologist and clinical director of the new facility.
While doctors there began treating patients a few weeks ago, the center will officially open on Wednesday with a ribbon cutting ceremony. The $31 million, 7,450 square foot addition was funded by Huntsman Cancer Institute, Huntsman Cancer Hospital and Huntsman Cancer Foundation.
Over the past eight to 10 years, Poppe said he has sent an increasing number of patients with proton radiation to other centers. There are a limited number of proton facilities in the country, he noted. Previously, the closest centers were located in Seattle, San Diego and Phoenix.
“For these patients I treat, I don’t have to have their family pick up four to six weeks of their lives and move to a 12-hour drive. 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 throughout the course of their treatment,” said Poppe.
Relatives from across the country rushed to the side of the Leeb family when Noah was diagnosed, Jacque Leeb said, describing it as a “ripple” of support.
“I think that got us through this,” she said. “I’d 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 because he wants to, he’s a fighter and he doesn’t get left behind for way too long. ‘ But everyone else around us just reached out and didn’t stop reaching out,” she said.
James Leeb, Noah’s father, said the family managed to get their relatives involved and appeal to “our faith, and to reach out to God, in whom we believe, and just say, ‘Look, okay , this is next for us, and how do you want us to best approach this? And this is what we want, and help us figure out how that aligns with what you want.”
Leeb said the medical specialists have also been “so involved” in helping Noah.
The things that helped him through the process include “probably football and some Legos, maybe,” Noah said. “If my counts are down, I’ll probably do Legos. If they’re up, I’ll go out and probably play with my boyfriend.”
“He went from being a very basic Lego builder to us having to take out a second mortgage on Lego. He’s at the expert level where they say it’s 18 and older, or they show adults in the picture putting it together ,” said Jacque Leeb.
A surgically inserted port — which Noah nicknamed “Dave” — gives measurements of his blood count after chemotherapy, his father said.
Noah said he would advise other kids going through big challenges to “just always stay positive. And don’t think about the bad things, always think about the good things.”
“I’ve had a lot of faith, we’ve prayed, and I’ve just done all the things my mother told me to do,” Noah explained.
“I think it’s only at this point that you know what families are doing. We didn’t realize you had to go 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 you might be done with the first treatments… and to actually have to split as Noah said I can’t imagine having to do that so it has been huge,” said Jacque Leeb.
“Had we noticed this even a month earlier, we probably would have still been turned away, and we’re grateful, we feel lucky to be able to represent the first patients to come through Utah and do this, and I think that this is going to be monumental,” she said.
“I think a thousand little miracles have happened … the way things are 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 usually given to pediatric patients, but is 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 rather than the photon radiation typically recommended.
During radiation treatment, “energy packets” in the form of electrons, photons or protons are generated and accelerated to high energies, Poppe said, and then they target dividing cells. The energy packets 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 and then leaves the body, releasing energy in the process as it travels through the body. But because a proton carries a charge and more mass, it travels a certain distance in the body — to the tumor — and then stops, Poppe said. That means all of its energy is deposited without passing through the body, so less of the normal body tissue needs to see that radiation, the doctor said.
“Therefore, it lowers the risk of both second cancers and possible 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 arisen in the technology of economically producing a proton and accurately targeting the proton.
“So that’s been done over the past 20 years in certain select centers across the country. Because of the cost involved, it required very large centers that would usually serve populations many times larger than Salt Lake. Only recently has it been designed in a smaller footprint so the economies of scale are such that we can install a facility that can accommodate the population of here in Salt Lake and the surrounding area,” Poppe said.
He noted that the Huntsman Cancer Institute serves most of Montana, Idaho, Wyoming, part of western Colorado and Nevada, and that the new treatment facility could expand that reach to other states. Poppe estimates that the new institute will treat 200 to 250 new patients per year
The doctor urges patients who believe they are a candidate for proton therapy to discuss this with their current healthcare team.
“It’s a multidisciplinary discussion about cancer treatment, so we’re getting input from surgery, medical oncology and radiotherapy on how best to treat an individual patient’s cancer,” he said.