The 4-inch scar at the base of Cole Boland’s skull doesn’t seem to faze him much. Neither did his diagnosis with medulloblastoma, a fast-growing cancerous brain tumor that can spread through the cerebrospinal fluid to other locations on the surface of the brain and to the spinal cord, last January.
The 17-year-old St. Francis Borgia Regional High School senior has managed to roll with each punch this new reality has brought him. That’s just part of his personality, his parents, Nick and Stephanie Boland, Washington, said.
“He’s handled this all very, very well,” said Stephanie, “not just physically, but emotionally too. He’s always been a very laid-back kid.”
With a slight smile on his face, Cole shrugged at that description.
“It’s all mind over matter,” he said. “Don’t let your physical presence bring you down . . . I guess everything happens for a reason.”
After two brain surgeries and six weeks of radiation treatments, Cole is currently midway through nine rounds of chemotherapy. His thick, wavy, light brown hair which used to be long enough that he could pull part of it up into a ponytail is now a crew cut style.
“I feel like I had Harrison Bader hair,” said Cole, referring to the St. Louis Cardinals center fielder. “I had good hair.”
Cole, who played second and third base for Borgia before his diagnosis, doesn’t sweat his new look. His hair will grow back, he said.
Cole was a junior studying for his first semester exams last January when he began complaining about a persistent headache. His parents didn’t think much of it at first. He was staying up late and studying more, so headaches were a logical result.
With no other symptom or cause for alarm, Cole’s doctor agreed that he was probably experiencing stress headaches.
“I talked to his pediatrician the day before he was diagnosed and I asked what are the odds that this is something really bad, and he said 1 percent. ‘I don’t see anything that makes me believe it could be anything more,’ ” Stephanie recalled.
“They had done neurological tests, looking at his eyes, the way he walked . . . the strength in his hands, and everything was normal,” said Stephanie. “And it still is, but for some children with brain tumors, they get a drooping face, because it affects their nerves or their hearing. So they look for changes in hearing, eyesight, like blurred vision, and symptoms similar to having a stroke.
“But Cole didn’t exhibit any of that.”
None of that reassured Stephanie. Her mother’s instinct told her there was something wrong. Cole was never the type of kid to complain about anything, especially normal headache pain. She wanted an MRI to be sure there was nothing wrong.
“He would say, ‘My neck feels like it’s broken,’ and we kept thinking it could be an injury of some sort, like a herniated disc from playing sports. Maybe this was just an old injury that was now causing problems,” said Stephanie.
“I just felt very strongly about getting an MRI. I wanted to have that result.”
But before that could be arranged, Cole woke up one Thursday morning with an even more intense headache coupled with vomiting. That was a red flag. The family went to the emergency room at Mercy Hospital St. Louis, where he had an MRI 20 minutes after arriving. By 1 p.m., doctors had discovered a 4 cm tumor at the base of Cole’s cerebellum.
He was transferred to Siteman Kids at St. Louis Children’s Hospital where Monday morning he had surgery to remove the tumor. Doctors had hope that it was the most common pediatric brain tumor, which is noncancerous, said Stephanie, but pathology found it was medulloblastoma.
After leukemia, pediatric brain tumors are the second most common cancer in children, with approximately 2,500 to 3,500 brain tumors diagnosed in the United States each year. Most pediatric medulloblastomas develop in children younger than 16, with more than 70 percent diagnosed in children under age 10.
The Bolands, who have no known family history of cancer, had genetic testing done on Cole, in search of an explanation for how this could happen to him. All of the information came back negative with no clear reason why Cole developed brain cancer.
Unfortuantely, that’s most often the case with pediatric cancers, said Dr. Karen Gauvain, a hematologist and oncologist with Siteman Kids at St. Louis Children’s Hospital.
“There’s no way to prevent childhood cancers — like how you can avoid or greatly reduce your risk of lung cancer by not smoking,” she said. “It’s just random, and occassionally, like 5 to 10 percent of the time, it may be associated with something they are born with, like a predisposition or a family history or some other reason.”
Related Signs and Symptoms
Even though Cole didn’t experience any symptoms other than a persistent headache (and vomiting in the morning the day he was diagnosed), there can be signs of pediatric cancer. These include:
An unusual lump or swelling;
Unexplained paleness and loss of energy;
Ongoing pain in one area of the body;
Unexplained fever or illness that doesn’t go away;
Frequent headaches, often with vomiting
Sudden eye or vision changes; and
Sudden unexplained weight loss.
Some signs and symptoms more specific to medulloblastoma include:
Behavioral changes such as lethargy and drowsiness;
Morning nausea and vomiting that worsen over time;
Clumsiness, stumbling gait or frequent falls;
Changes in appetite;
Difficulty with muscle control and problems with motor skills that worsen over time; and
Unusual eye movements or problems with vision.
Having one or two of those symptoms from either list isn’t really anything parents should worry about. Many of the symptoms can have other, far more benign causes.
When parents need to take notice is when symptoms like these are recurrent and perisistent, said Dr. Gauvain.
“It’s really hard for somebody with a history of migraines or has chronic headaches already, but if they have vision changes or they start having weakness in parts of the body, like an arm or leg or both, or morning vomiting is a sign that there is increased pressure in the brain,” Dr. Gauvain explained.
“Vomiting when they wake up in the morning, but then they are better throughout the day, and then it keeps happening each day, that’s usually a red flag,” she said.
And even though pediatric brain cancer is the second most common cancer in children, it is still rare, Dr. Gauvain stressed, noting the numbers are around 3 in 100,000.
Second Surgery and Treatment
After the MRI showed the 4 cm brain tumor, Cole was transferred to St. Louis Children’s Hospital because it has a pediatric neurosurgeon.
“And that was the best thing that could have happened to us,” said Stephanie. “They have a great staff and team there.”
Surgery that Monday morning lasted 10 hours with a team of three neurosurgeons. Doctors were confident they had cut out every cell of the tumor, but it wasn’t until Thursday — when Cole was finally feeling well enough to undergo an MRI — that they learned they had not.
“Removing it all is very important with brain tumors,” said Stephanie. “Your chances of being cured are way higher, because even one cell left behind can grow and since this cancer is so aggressive, you want clear margins.”
The next day, Cole had a second brain surgery to remove the remaining tumor cells, and this time the surgery was at Barnes-Jewish Hospital where there is an intraoperative MRI, that allows surgeons to use an MRI scanner while the patient is in surgery to be certain they have removed all of the tumor cells.
“I think they scanned him three times before they were sure they got it all,” said Stephanie, noting that second surgery was 12 hours long.
Waiting that long for news and updates was excruciating, the Bolands said. They did get some periodic updates, but it still felt like they were holding their breath for 12 hours.
“It was so nerve-wracking. It’s the worst day of your life basically,” said Stephanie. “We just huddled in the waiting room and prayed and prayed and prayed.”
Cole was in the hospital for 22 days before he was released Feb. 4, which happens to be his mom’s birthday. By mid-February, he was back to school, which was a welcome return to some normalcy.
“I was ready. It got boring sitting on the couch all day,” said Cole, who was quick to credit his friends with keeping him feeling positive.
“His friends were really great,” said Cole’s dad, Nick. “They came to the hospital almost every day.”
“They called his room the frat room,” said Stephanie, with a laugh. “Before surgery in his room there would be like 10 boys . . . and that’s such an important part of recovery, having that kind of support.”
Proton beam radiation treatments began in March with Cole going Monday through Friday for six weeks.
Proton beam therapy is a powerful and accurate tool in treating pediatric tumors that produces fewer adverse side effects. St. Louis Children’s Hospital, in partnership with the Siteman Cancer Center and Washington University School of Medicine, offers this treatment, which is available at only a handful of centers nationwide.
“With standard radiation, photons enter the tumor and some amount of the radiation dose goes out outside on the other side of the tumor and affects the tissues on the other side,” explained Dr. Gauvain. “Whereas with proton beam, the radiation gets absorbed in the tumor and stays there, so there is not what’s called the exit dose.
“If you talk about radiating the spine, with proton beam, you’re protecting what’s behind there, like the heart, lungs, GI tract . . . It doesn’t have that exit dose,” she said.
Once his radiation treatments were complete, Cole began chemotherapy using a port he had installed.
“The rounds are on 43-day cycles,” said Stephanie. “Day One and Day Two he’s admitted and gets chemo for a six-hour drip. On Day Eight he goes back for a quick chemo drip, and Day 15 he goes back for another quick drip. Then he’s done until the next round.”
Throughout all of his treatments, Cole has been able to stay active, experiencing only a little bit of fatigue. He finished his junior year of school, taking two summer classes (English and algebra) to catch up from the time he had missed.
He has peripheral neuropathy right now which causes the tips of his toes to be numb. He was going to physical therapy to help with that, but he has been too busy with other activities to continue, which is a good thing, said Stephanie.
“The more active he can stay, the better,” she said.
Cole didn’t play baseball last spring and he isn’t planning to try out this spring, although doctors haven’t put any physical limitations on him.
“He was cleared by his surgeon in March or April to play sports again, to go back to PE again, even to drive,” said Stephanie.
Friends of Kids With Cancer
Next Thursday, Nov. 8, Cole will be one of 20 pediatric cancer patients chosen to walk the runway at the 26th Annual Friends of Kids With Cancer Fashion Show and Boutique. Held at the Ritz-Carlton in downtown St. Louis, the event is a fundraiser for Friends of Kids With Cancer, a nonprofit organization that provides gifts and uplifting experiences to children undergoing cancer treatments.
Friends of Kids With Cancer has provided Cole with an iPad for him to use at school, tickets to St. Louis Cardinals baseball games, some that included a visit to the dugout and on the field, and tickets to St. Louis Blues hockey games.
Cole will walk in the evening fashion show and will be accompanied by one of the St. Louis Blues hockey players.
“This is a really crummy experience, but there are some really cool things that have come out of it,” said Stephanie. “The nurses and doctors we’ve met have just been awesome people, and all these organizations that come out of the woodwork to help you, if need be, have been so generous. The Friends of Kids With Cancer is one.”
The Make-A-Wish Foundation, which is currently working with the Bolands to grant Cole’s wish of a Florida beach vacation with his friends, is another.
Looking back over the last nine months, Cole said he has been able to stay positive about everything mainly by taking things one day at a time. He’s not looking to the future too much just yet.
Once his nine rounds of chemo are complete, Cole will have scans every three months for the first two years to check to see if the cancer has come back, said Stephanie. If everything stays good, that will be stretched out to scans every six months and eventually to once a year.
“And there will be a lot of things he’ll have to watch out for, as a result of the radiation and chemo, things caused by the treatment, side affects of the treatments,” said Stephanie.
The look on Cole’s face says he’ll be ready.