Brent Hilburn loved music. Anyone who knew the young man from Rockmart knew that. They also likely knew of his bravery and his tenacity as a childhood brain tumor survivor who battled cancer and its impact for most of his 29 years.

Hilburn lost his battle last September, but his legacy lives on through the Brent Hilburn Music Festival that’s scheduled Sept. 28 and 29 at The Rock campground, located on the Old Atlanta Highway south of Rockmart.

The two-day event features a full slate of musical entertainment. The Friday night lineup will feature Gospel and Christian acts while Saturday will be full day of music, ranging from country to rock to blues.

The music festival’s roots go back to 1999 when local Eddie Hulsey became seriously ill. To help with hospital expenses, local musicians and friends got together and organized the first Rockstock Music Festival. It was such a success the seed was planted for an annual event to help folks in need by raising money for local charities that help Polk County.

Frankie Hilburn and his son Brent were both mainstays with the annual music festival the past 13 years, so Frankie was deeply touched when the festival committee decided to rename the music festival in his son’s honor.

It’s also fitting that the beneficiary of the first musical festival named after Brent Hilburn will be Cancer Navigators. The nonprofit group helps local cancer patients — primarily from Polk, Floyd and Chattooga counties— on their journey from diagnosis, through treatment and beyond.

The Cancer Navigators team and their free services are a complement to the medical expertise of area cancer care providers by guiding patients and their families toward a better understanding of diagnosis and care and to connect them with needed resources on their journey.

“We know firsthand how devastating this can be on families,” said Hilburn, who is a cancer survivor himself and has watched five members of his family battle the disease as well.

“That’s why we want to help others who are on their cancer journey.”

Brent’s Journey

When Brent was born he was a “full-term 8 lbs. 12 oz. bundle of a beautiful, healthy baby boy,” according to his mother Linda Hilburn.

“He did everything ahead of schedule. He sat up, walked and talked on schedule or before. His checkups were routine until he was 11 months old.

His pediatrician noticed he was not growing and gaining weight on schedule. Brent had a tendency to throw up every morning. He was referred to Egleston Hospital to begin the first of many tests. Some were to see if he had Cystic Fibrosis and several other diseases. All were negative so he was diagnosed as a ‘failure to thrive,’ ” she said.

Brent continued to grow slower than normal “but was such a smart healthy child, the physicians thought he was going to just be a small person.”

Even though he was throwing up in the mornings and had daily headaches, he did not exhibit other symptoms doctors told them would indicate something as serious as a brain tumor.

Then Brent woke up with a kink in his neck. His head was drawn over and his head was hurting so bad, said Linda. His dad took him to the doctor and a CT was ordered, a test she said “would change our lives forever.”

Continued Linda: “On June 2, 1988, the call that closed the door on life as we knew it came later that day. We were told that Brent had a brain tumor that was very serious. We were told to carry him directly to Egleston Hospital in Atlanta and they would be waiting on us. The next few weeks were a blur for us. Brent had his first surgery on June 5 to put a shunt in his head to minimize the pressure. On June 9 he was taken to surgery at 7 a.m. for the major surgery of removing 75 percent of the tumor. This was an astrocytoma on his brain stem. The doctors removed as much as possible without compromising the brain stem.”

Then 6-year-old Brent began a long regiment of chemotherapy and radiation. His parents were told his tumor did not respond to either very well and he was not expected to live more than 18 months.

“This is when we put Brent in God’s hands and decided He would decide Brent’s days,” said Linda.

The hospital became their home away from home after Brent started chemo. He would have four months of chemo, going into the hospital the end of every month for three days of treatment. Then 7-10 days later he would spike a fever over 101 degrees and would have to be hospitalized due to his platelets dropping. He would get blood and/or platelet transfusions, which always caused cold chills. He could not leave the hospital until his fever broke, which would sometimes run over into the next chemo treatments.

“Brent and I moved to the Ronald McDonald House after he was scheduled to have eight weeks of two radiation treatments a day for five days a week at Emory Clinic.”

After that the family returned home to Rockmart to “live as normal a life as we could give him.”

Brent, known for his friendly spirit and good nature, continued school as much as possible over the next several years. Then in Brent’s junior year at Rockmart High, he began to have problems with his right leg. It began drawing up when he was seated. He found that standing during his classes was easier. So to concentrate, he remained standing up for most of his last two years of high school.

One of his great joys during that time was playing the saxophone in the Rockmart High band.

His mom says that after graduation, Brent’s right leg drew up into a flamingo stance and he had to walk with crutches. He was diagnosed with triple flexion dystonia. He slowly began to lose strength in his left leg and then needed a wheelchair to get around.

His adult journey was no easier. In 2004 Brent began to show a deterioration of his white matter mass in his brain. He started having grand mal seizures and in March 2009 he suffered a stroke. More medications were added – one with surprising but welcomed results. One of the meds was Ritalin to try increase his attention span and to give him more energy. For some reason, unknown to doctors, Brent’s leg dropped down and he was able to walk again. “This made him so happy,” says his mom.

Another thing that made him happy was working on the annual music festival in Rockmart. He loved music and concerts so being part of the big weekend of music in his hometown as an adult meant the world to him.

Linda Hilburn says Brent’s white matter mass continued to decrease and his physicians began to worry that his brain was taking on the look of an older man. “So much radiation to his brain for most of his life had taken a toll on his health,” she said.

Last summer, Frankie took Brent to help work on the benefit concert at The Rock, but his head was hurting so badly that Brent had to be taken to the hospital. He was admitted with a brain bleed.

Despite his fighting spirit and spurts of improvement, on Sept. 10, 2011, Brent finally succumbed to his longtime illness with his family around him.

Dr. Brenda Budlong of Floyd Primary Care was Brent’s doctor when he was a child and again when he was an adult. She remembers this young man fondly.

“Born with a brain tumor and not expected to live, Brent grew up to become a loving and beloved person. He struggled just to walk, with muscles and nerves twisting and tightening and holding him back. Yet he pushed through his limitations into high school, music and band and 11 years of adulthood,” she said.

“My best memory of Brent was watching him with his parents at the Rockmart High football games in his Yellow Jacket band uniform that he wore so proudly.”

A Polk County resident and cancer survivor herself who has benefited from the services of Cancer Navigators, Budlong says Brent inspired her. So much so that she has been on the organizing committee for this year’s music festival that benefits Cancer Navigators and pays homage to a man who inspired so many.

Musical tribute

So as organizing committee members sit around a long table week after week in the Vintage Farm Implements Museum that’s a centerpiece of The Rock Campground and Park, they aim to create an event that brings the best of live music to Polk County combined with two days of family fun. They do it for two very important reasons: To raise money to help area families who are dealing with cancer and its impact on their daily lives and to honor a man who fought his own battle but through it all fostered a love of music, his family and his community.

“His spirit and his love of music will continue forever,” says his mom Linda.

And the musical lineup is one that would make Brent Hilburn proud.

The Sept. 28 lineup on the Gospel and Christian music night, which begins at 5:30 p.m., will include Christian recording artist Jimi Bennett, Second Coming, Steadfast and the popular Gospel group The Talleys.

Then Sept. 29 sees Nashville country star Doug Stone headline a full day of music that starts at noon and includes Dirt Road South, Clay Broome, Blues Network, Scratch Off John, Kris Anderson and the Would Be Thieves, Black Friday, Isaac Streetman, and Bennie Gray and the Trailer Park Cowboys.

With the festival less than a month away, the organizing committee is busy finalizing sponsorships — $5,000 for gold sponsorship, $2500 for silver and $1,000 for bronze — as well as event vendors.

For information on how you can be involved, call 678-409-2981.

Tickets are $15 for adults and include both days of music. Students get in for $5 and kids under 6 are free with an adult. Those with military ID are admitted free as are seniors 65 and over. Tickets are available at J&L Discount and Pizza Depot in Rockmart, at the Music Depot in Cedartown and at Cancer Navigators in Rome. Group discounts and festival tents for churches, families and groups are available by calling 678-409-2981.

A motorcycle ride is being held in conjunction with the Music Festival. Riders get into the concert for free. The cost is $20 for riders; $30 for couples. For information on the ride, call Barry Cole at 706-346-2160 or David Pickard at 678-739-6536.

The Rock, located just off of Highway 278 at 130 Forsyth Lake Road, is a campground and outdoor venue located along the Silver Comet Trail in Rockmart. Camping is available for festivalgoers by contacting Jon at 770-684-8519.

If You Go

What: Brent Hilburn Music Festival

When: Sept. 28-29

Where: The Rock Campground and Park, 130 Forsyth Lake Road in Rockmart

Tickets: Tickets are $15 for adults and include both days of music. Students get in for $5 and kids under 6 are free with an adult.

Those with military ID are admitted free as are seniors 65 and over. Tickets are available at J&L Discount and Pizza Depot in Rockmart, at the Music Depot in Cedartown and at Cancer Navigators in Rome.

Group discounts and festival tents for churches, families and groups are available by calling 678-409-2981.