When Gavin Pierson was born at 39 weeks, he was perfectly healthy. So his parents were shocked when a doctor told them their almost six-year-old son had a tumor lodged on his brain.
The news did not sink in for Gavin’s dad Steve, of Ramsey, right away. First he went into denial, unsure how this could have happened to his son. Gavin was a very active kid who was just finishing kindergarten. He was in gymnastics, played T-ball, tried karate. He was so popular at school that even the fourth and fifth graders wanted to talk with him.
Steve and his wife Nicole quickly focused on how doctors could save their son from this golf ball size tumor.
“When you get a diagnosis, you just want to know what am I going to do to fix it,” Nicole said. “That was probably the hardest day of my life.”
The diagnosis came April 7, 2012. Although the tumor is still there, pressing on his brain stem and affecting some cognitive functions, Gavin has been cancer free since June 7, 2012.
Breakthrough medication is helping him function much better than he ever has. His parents also are holding out hope that a new fiber optic laser will kill the rest of the tumor.
“Cancer is hard for anyone no matter how old you are, but when you’re five it’s not something you should have to deal with,” Nicole said. “From the beginning, Gavin, he’s just been a trooper, a super trooper.”
Gavin, who is now seven years old, still has some difficulty reading and hearing from time to time. The Piersons learned some basic sign language, including Gavin’s eight-year-old sister Grace, so they could communicate when he has trouble understanding him.
Gavin can rattle off detailed information about dinosaurs and animals alive in the world today because he incredible auditory and visual memory. Just the other day, Nicole was teaching him about gravity and the next day he was telling his mother about how the pull of gravity works with the earth going around the sun and how the moon has less gravitational pull so you can float.
Gavin plans to be a marine biologist when he grows up, so he was thrilled to get the opportunity to travel to Florida June 13-18 with his parents, sister Grace and four-year-old brother Gage thanks to Make-A-Wish and UnitedHealthcare.
They visited the Animal Kingdom and Sea World, but the highlight of his trip was meeting Winter, the bottlenose dolphin whose inspiring story was featured in the movie “Dolphin Tale.” Winter lost her tail after becoming tangled in a rope attached to a crab trap off the coast of Clearwater, Fla., and was fitted with a prosthetic tail.
Making life better for animals like Winter is why Gavin wants to be a marine biologist.
“They help animals get better, give them medicine and then let them back into the wild,” he said.
Gavin’s battle with brain cancer
On Good Friday last year, the Pierson family was preparing for their Easter activities and daughter Grace’s seventh birthday party when they noticed that Gavin seemed more exhausted than normal. Grace said Gavin took more naps than she did after they got done playing. Nicole and Steve had blood tests done to try to find out why Gavin was more tired than his brother and sister, but nothing was found. Nobody thought of looking for cancer.
Beyond Gavin being tired, his eyes were open wider and his head was tilting back. They later found out his eyes could not point up, so he had to raise his head to look up at his parents.
Lisa Bishop, a family aunt who is a pediatrician, looked at Gavin’s eyes with a pen light and recommended they immediately take him to the St. Paul Children’s Hospital.
Two doctors, including the head of the emergency unit at the children’s hospital, examined Gavin. A CT scan showed the golf-ball size tumor on his brain, which was partially cancerous and partially benign.
Although he was declared cancer free June 7, 2012 after three rounds of chemotherapy at Minneapolis Children’s Hospital, the benign tumor remained and had doubled in size and was pressing on his brain stem, causing problems with his breathing and motor functions because it was pushing important cerebral veins out of place.
For the next seven months, Gavin underwent five craniotomies to relieve pressure on his brain and try to remove the tumor, but the procedures were not working as well as doctors wanted. Nicole and Steve were told by a surgeon that the recovery period between craniotomies normally would be six to eight months. Gavin had three procedures in less than seven weeks at one point because they were trying to save his life.
“It was like walking up the wrong side of an escalator,” Steve said on how it seemed like progress was not being made.
The surgeon said he could remove 90 percent of the tumor, but the rest was out of reach. He said Gavin may only have a few months to live unless he got medicine that would help him.
The Piersons had heard about an experimental drug called Palbociclib, developed by Phizer to treat breast cancer patients. They thought it could work for Gavin, but Phizer was hesitant to let him use it because it had only been tested on adults.
“It seems like everywhere we turned we had another brick wall we were slamming into,” Nicole said.
Gavin had his final craniotomy Jan. 14. He had recovered fine from the other surgeries, but this fifth one really took a toll. He was in the hospital for over a month and spent weeks in a wheelchair. He was so tired that he would fall asleep while eating.
“Some days when we had nothing else to go by, we just went by Gavin and he told us, ‘Mom, I’m going to get old and I’m going to be 10. I’m going to be 15 and I’m going to do all this stuff and he just knew it,” Nicole said.
Around that time is when they reached out to local media to share Gavin’s story. Almost 200,000 people have visited Gavin’s Caring Bridge page and people from as far away as the Philippines signed a petition to ask Phizer to let this six-year-old boy to use this experimental drug.
It was in the final testing stage for adults before receiving U.S. Food and Drug Administration approval when Nicole and Steve signed legal paperwork that said they would not sue Phizer if something went wrong. The medicine is a giant pill that Gavin had trouble swallowing, but Phizer said it could not be broken into smaller pieces. However, he eventually was able to ingest it.
Gavin is currently on his sixth cycle of taking the medicine, which requires a week off between 21-day cycles. According to Nicole, Palbociclib inhibits the growth of rapidly dividing cells making the tumor. It gave him a break from surgery and the time off has made him more active and independent, although the medication has caused acid reflux and fatigue.
Gavin is getting some personal training at the Jam Hops gymnastics studio he used to go to. He is able to play a little more with Grace, who was wearing a lab coat a nurse practitioner had given her so she could pretend she was Gavin’s doctor.
Nicole and Steve hope the St. Paul Children’s Hospital can purchase a Visualase laser that could heat and kill the remaining benign tumor in one or two treatments.
Gavin and Nicole recently shared some of their story at the Blaine Relay for Life. Nicole talked about how nobody, let alone a boy as young as Gavin, should have to deal with cancer, but this disease “doesn’t discriminate.”
“It doesn’t matter what plans you had for your life. It just is and we have to fight because this is our future,” Nicole said.
Eric Hagen is at [email protected]