When your child has cancer, so much is beyond your control. Still, you do have the power to make important decisions. For some parents whose kids have certain types of cancer, proton beam radiation may be offered as a potentially safer alternative to traditional radiation. Read on as two families explain why they chose proton therapy, what the treatment has involved and how their young sons are doing now.
From April though early June, Crystal and Ken Dodson of central Pennsylvania stayed in Houston while their 4-year-old son underwent proton radiation therapy at the University of Texas MD Anderson Cancer Center. It was his second time around with the cancer treatment, which didn’t make it any easier.
In 2014, then 2-year-old Heath was first diagnosed with a brain tumor. Specifically, doctors found what’s called an ependymoma, or cancer of the central nervous system, which includes the brain and spinal cord. The original tumor was in his brain.
The doctors at their nearby medical center recommended traditional radiation, Crystal says. But she and her husband looked further. “We did our research,” she says. “We found out that, with traditional radiation, our son was looking at having impact and deficiencies to his eyes, his hearing, his growth, his intellect.”
Because proton beam therapy is highly targeted to the tumor with less exposure to normal, healthy tissue, it’s believed to reduce the risk of side effects from radiation treatment to the affected part of the body as well as surrounding organs. Young children in early stages of development may receive the most benefit from receiving proton rather than traditional radiation. However, research comparing the treatments is still emerging.
Dr. Torunn Yock examines brain image to plan radiation treatment. (Courtesy of Massachusetts General Cancer Center)
Proton therapy is only available at a handful of locations throughout the country. The couple had their careers – both are IT professionals – and three older children to consider. But the chance to mitigate the potential side effects of traditional radiation spurred the couple to travel to Texas with Heath for the newer treatment.
“When we [did] proton radiation for that round, our son came out at the end with no side effects,” Crystal says. “No hearing loss, no vision issues, not growth issues. He’s highly intelligent.” All that made the two-month relocation worthwhile, she says.
But proton beam radiation is a treatment, not a magic bullet. That was clear when cancer showed up again in Heath’s most recent MRI scan, done at the local hospital. The new tumor appeared in a different, previously untreated part of his brain. “That led us to a spinal MRI, which identified that he had a large tumor in his spine as well, spanning four vertebrae,” Crystal says.
“With this last scan, when they found the tumor in his brain, it was obviously very difficult for us to process,” Ken says. “And then they found the tumor in his spine, which was substantial.”
Again, the Dodsons opted for treatment at MD Anderson, this time with even heavier hearts. It was encouraging that surgeons were able to remove the spinal tumor “with almost no adverse effects,” Ken says. “And now we’re going through [proton] radiation – we feel pretty blessed. It’s scary. But at the end of the day, we’re very thankful that we have the opportunity to do this.”
Every Monday through Friday, first thing in the morning, their son went for proton treatment. It started with sedation drugs given through a port in his chest. Treatment sessions took about 45 minutes to an hour, after which he remained to recover from sedation. Meanwhile, his parents kept busy, working remotely from the lobby and waiting room.
Fortunately, Crystal says, the family has “excellent” health insurance that covers the costly proton treatment. The average cost of proton therapy is estimated at $40,000 per course of radiation.
The biggest challenge was leaving the other children at home to attend school. “We just do our best … if one of us can get back home to see them,” she says. At one point, they were able to fly Heath’s siblings in for a visit to their rented townhouse.
Crystal encourages others facing tough medical choices to get a second opinion and do some research. “Because no one was coming up to us and saying, ‘Hey, you should do proton radiation,'” she says. It was a choice they had to seek out, she adds, and educating themselves was part of the process.
Ken says at first, the prospect of uprooting themselves for six weeks and leaving their other young children behind seemed too disruptive. “But we quickly decided that you can’t do better than the best,” he says. “That was ultimately why we made the decision we made.” “The best technology,” Crystal chimes in.
“It’s a comfort to us that we can always look back no matter …” Ken says, clearing his throat. “Whether we’re standing at his high school graduation, we can look back and say, ‘He’s here because we went through the struggle and did everything we possibly could for him.'”
At the beginning of June, Heath completed his course of treatment a week sooner than anticipated and returned home with his parents unannounced as a surprise to the other children. The early discharge felt like a gift to the family. “We got a week back,” Crystal says. Heath is doing very well; he looks great and is already playing outside, she says. Now, the family is waiting to learn how well the treatment worked. They’ll know more when they receive results from a follow-up MRI scan at the end of the month.
McQuillan Family: Two Years Later
Rotating gantry allows pinpoint proton beam delivery. (Courtesy of Massachusetts General Cancer Center)
About two years ago, Meg McQuillan of Riverside, Connecticut, heard something she never expected. Her son Luke, then 8 years old, just had a precautionary CT scan after a minor fall from losing his balance. “The doctor came over to me and said, ‘I want to show you something on the screen,'” she recalls. “And, he says, ‘We actually found something.'” That something was a mass on the brain – a tumor.
The next morning, Luke had emergency surgery, which revealed that the tumor was malignant. He was diagnosed with a type of brain cancer called medulloblastoma, which can spread to the spinal cord as well.
After a week in the hospital enduring “a brutal recuperation” from the surgery, Luke’s parents took him home to give his brain time to heal. Among their reactions, one was bewilderment that cancer could affect their son. He had always been perfectly healthy and physically active, McQuillan says. The family ate well. She cooked organic food and bought bio-friendly cleaning supplies. There was no known family history of cancer.
The oncologist at the university hospital where Luke was being treated recommended a special kind of radiation, which was not available at that hospital. Of the closest medical centers equipped to treat children using proton therapy, the McQuillans opted for Massachusetts General Hospital, roughly a three-hour drive.
Luke’s protocol was six weeks, five days a week, of irradiation. At first he required full anesthesia as he received total irradiation of the brain and spinal cord. He was also treated with a course of chemotherapy.
“The treatments really beat [Luke] up,” McQuillan says. “He was exhausted and throwing up constantly, every single day. And losing weight through the whole thing.” Yet her son’s attitude was “extraordinary” throughout, she says, and the support from Dr. Torunn Yock, director of pediatric and radiation oncology at Massachusetts General, and the entire staff, was “amazing.”
During that time, they stayed at Christopher’s Haven, a home for kids and families going through cancer treatment. Luke’s sister, who stayed home to go to school during the week, came up every weekend with her father.
McQuillan is particularly grateful to a group of mothers in her community. “When we were up in Boston, every single week, one of his best friend’s moms would pull their child out of school and drive up to Boston every single Wednesday,” she says. “That was like the best medicine. He went from being drained and exhausted and wiped out and kind of lonely to being a silly kid, to being happy again.”
Luke’s recovery has been gradual. “His rebound from it has been very slow,” McQuillan says. “His energy and stamina levels, for almost two years after treatment … we’re just seeing them start to come back now.” His balance is back to normal, and he’s playing sports: basketball, tennis and baseball.
Because his treatment protocol included total brain and spinal irradiation, as well as chemotherapy, Luke will continue to be monitored for issues like growth. Because he received proton beam therapy rather than traditional radiation, McQuillan says, “What he will not experience is side effects to other parts of his body.”
Amazingly, although Luke missed most of third grade during his grueling experience, he was able to keep up with his class. “He’s doing so well academically,” McQuillan says. Now, at 11, Luke is set to graduate from elementary school, his mother says proudly.
The family just received some great news. “We just had his two-year MRI, which was 100 percent clear,” McQuillan says – a significant milestone.