If this were a comic, Joe Bully would be the villain. A villain that’s about to go D-O-W-N, according to Gavin Pierson.
Joe Bully is the rare tumor inside 7-year-old Gavin’s brain. But on Oct. 29, with the help of Dr. Joseph Petronio and his latest weapon – an MRI-guided laser – Joe Bully is going to be annihilated, vaporized, defeated.
“It’s a one-two punch,” Petronio has said of the laser, which is complemented by an experimental drug Gavin takes.
Petronio and Gavin’s family started vying for the laser last winter. The laser uses heat and MRI imaging to kill brain tumors. It has already been used successfully on a young Children’s patient with epilepsy. The saga to reach this day has been long, and not without plenty of ups and downs – like the experience of any superhero.
A villain is born
The story began a year and a half ago.
In a matter of just days, Gavin went from being a normal, healthy boy going to gymnastics and playing sports to struggling with double vision and having trouble looking directly at others. At his sister’s seventh birthday party, Gavin’s dad, Steve, asked his wife’s aunt, a pediatrician, to look at Gavin. Armed with a flashlight, she examined Gavin’s eyes. Seconds later, she suggested Steve and Nicole take their son to the emergency department at Children’s Hospitals and Clinics of Minnesota.
During the drive to Children’s, Nicole recalled that she and Steve were worried. They knew something was wrong with Gavin and feared he could go blind.
“I remember us saying, like literally looking at each other and saying, ‘Gavin loves this world so much and nature and science, and oh my gosh, what if he couldn’t see it.’”
Hours later, it would be Steve and Nicole who were blindsided.
Two physicians performed tracking tests on Gavin before order a CT scan. The family stayed in the emergency department following the tests. They were still there when a physician and surgeon returned to talk with Steve and Nicole. Steve could tell by the expressions on their faces that they didn’t have good news, he said.
“I kind of wish at that moment, it was like fast, and I was like can we just press pause because I’m not ready to hear what you have to say. Unfortunately you don’t get to press pause, and that’s the thing about illness,” Nicole said.
It appeared Gavin had a brain tumor about the size of a golf ball, the physicians said.
Steve didn’t hear past tumor. “It was still ringing in my head that they just said my son has a tumor in his brain,” he said.
The saga continues
In addition to the tumor, Gavin had developed hydrocephalous – fluid on the brain. He needed immediate surgery to place an EVD to drain the fluid. Following surgery, Gavin was admitted into the pediatric intensive care unit (PICU), where he spent the next eight days while his parents, along with a team of specialists, determined a course of action.
A biopsy indicated Gavin had a mature teratoma, a benign tumor. But his alpha-fetoprotein level was heightened, a potential red flag for cancer. Gavin needed to undergo chemotherapy for five months.
During treatments, Gavin watched as many movies as he wanted, played games, watched The Dude in Star Studio. It was like a hotel for him, Nicole said.
“From the beginning, he wasn’t scared of anything. He just felt like, ‘Alright, well, they’re going to fix me, and I’m going to fight and big deal. Move on,” Nicole said. “He just seemed like it was nothing. It was just a breeze for him.”
A few months into treatment, an MRI showed the tumor had doubled its original size. At the same time, results from Gavin’s blood test showed there was no cancer in his body.
The cancer was gone, but the Piersons and Gavin’s doctors had a growing problem on their hands, his tumor. Because it was benign, neither chemotherapy nor radiation would obliterate it. Gavin needed surgery.
On June 21, 2012, Gavin underwent his first of three craniotomies in six weeks to reduce the tumor. Complications quickly followed. He developed a blood clot, then needed a Hickman and two shunts. It was one issue after another.
In November, Gavin had his fourth craniotomy. Dr. Petronio, his neurosurgeon, was making headway. The tumor was shrinking.
But Gavin couldn’t undergo craniotomies forever. His oncologist, Dr. Kris Ann Schultz, reached out to Pfizer about an experimental drug that had only been used in adults. She asked for compassionate use, allowing Gavin, the first child, to try it. Pfizer declined.
It wasn’t all bad news that month. During the summer, Gavin had developed agnosia, in which Gavin couldn’t process words he heard. His family learned sign language – about 200 signs – which Gavin picked up quickly and still remembers.
Nicole recalls the first day Gavin heard words again. She was at home, on family leave, with Gavin and his brother, Gage, and she was talking to Gage in the front room of their home. She told him to put on his shoes because they were going to the library. Gavin ran into the room, “Mom, I heard you say library,” he said.
November and December were good months for the Pierson family. Gavin continued to recover from the fourth craniotomy. But around Christmas 2012, he started leaning to one side again. Nicole knew something was wrong. On Christmas Day, she called Dr. Petronio. Two days later, Gavin had an MRI, which showed the tumor had grown.
This is not Gavin’s fate
Gavin’s favorite hero is Batman. He doesn’t have a super power. His power is that he can do what no human can do. Gavin needed someone like Batman.
On Jan. 7, 2013, Dr. Petronio told Steve and Nicole that Gavin likely only had a few months to live. Craniotomies every few weeks and months weren’t going to cut it. They needed another weapon.
Nicole and Steve became desperate. Dr. Schultz contacted Pfizer again. Meanwhile, the Piersons reached out to local media and created a petition on Change.org, anything that might sway the drug company to grant Gavin use of the experimental drug, Palbociclib, which had only been used in clinical trials in adults.
“When the standard approach isn’t working, you have to work hard to find a better answer. There are new treatments being developed all the time and it’s our job to try to match those emerging technologies to the patients who will benefit from them,” Dr. Schultz said.
The day before Gavin’s fifth craniotomy, the company agreed to discuss Gavin’s case at their compassionate use meeting.
“As the parent, you are supposed to make things better…and you just look at how sweet he is and you just, you know, we just felt like, oh my gosh, we just can’t give up,” Nicole said. “This is not his fate, and we were willing to go anywhere at that point and do anything.”
So was Gavin’s care team.
Gavin underwent his fifth craniotomy. Unlike the previous ones, he didn’t bounce back quickly. He needed therapy. It was six weeks before he could walk again.
There had to be a better answer.
Be strong and brave
It came while Gavin recovered from the craniotomy. Pfizer agreed to compassionate use, and Dr. Petronio found a laser that could potentially help destroy the tumor. For the first time in a long time, the outlook was good.
Gavin has been taking Palbociclib since he was approved for it last winter, and it has helped stabilize the tumor. The MRI-guided laser surgery will help decrease the size of the tumor.
His parents have never given up in their fight for Gavin.
“We have to keep pushing forward because, I’m telling you, it has not been easy. I want it to be easier for other families,” Nicole said. “I don’t want another kid to have to have five craniotomies before we have a drug that works or before we have a laser.”
The surgery, guided by MRI images, allows precise targeting. It’s also minimally invasive. Unlike previous surgeries, it’s expected Gavin will only have to spend a day or two overnight in the hospital.
“He is so sweet to everyone he meets. He has never made an enemy. He is here for a higher purpose. He is going to do great things in his life,” Steve said. “I want to make sure he gets the chance to do that, and that’s why, I think, one of the big reasons we keep pushing because every kid deserves a chance.”