CHARLOTTE, NC (WBTV) - "Harlan the Hero".
You might know his name - do you really know his story?
He's a great example of why September matters. Why pediatric cancer needs a cure. Why we need to care. Why the next 30 days will bring love, joy, heartbreak and -- I hope -- lots of eyes to the stories of 30 incredible LOCAL kids and their families.
We begin this morning with Harlan.
Jacki Sullins said she took days to craft an email about her son's ridiculously tough cancer path. You could tell her note was difficult to write. She started with dates.
"12/11/2010 - 10/25/2014"
Harlan John Sullins lived in Catawba, South Carolina. His mom said he was a beautiful baby, born with piercing blue eyes.
"He was brilliant at every age," Jacki wrote. "He was doing things that kept any audience awestruck."
Shortly after Harlan's 2nd birthday things began to change. He started having uncontrollable outbursts, unexplained fits of rage and unpredictable vomiting. When he lost over 3 pounds in 3 weeks, his parents took him to the hospital.
"On February 7, 2013, our world came crashing down," said Jacki. "Four words we never imagined hearing -- 'There is a mass'."
It was a plum-sized cancerous tumor that his family dubbed, "The Beast." Surgery removed it from his brain.
The following month Harlan started Proton Beam Radiation Therapy treatments in Indiana. After 8 weeks and 33 treatments, Harlan returned home to South Carolina for hardcore chemotherapy.
Doctors told his parents they were surprised at how well this 2-year-old was tolerating the tough conditions. They were hopeful.
Then an MRI showed more spots.
"We were beyond devastated," Jacki says. "We thought he'd been doing really well."
Harlan started high-dose steroids and underwent his second craniotomy. Like always, Jacki says, he bounced back. But in the beginning of 2014 Harlan returned to Indiana for more radiation and the grueling treatments became too much. Little Harlan started having balance issues, which led to even more high-dose steroids. The steroids led to slower cognitive skills. Doctors diagnosed him with something new – severe somnolence syndrome.
Jacki says Harlan started sleeping 23 out of 24 hours every day and developed a wickedly cruel case of PTSD. The treatments for PTSD caused excessive weight gain.
"But you could tell he was trying," Jacki said. "My boy never gave up."
When a new MRI showed lesions were on a rampage throughout Harlan's brain, his family was given a timeline – 3-to-6-months. They lived it to the fullest, taking him to the zoo and a pumpkin patch and letting him ride a tractor. He played with his toy trains and watched his favorite movies.
On October 25th, 2014, Harlan was finally set free.
"No parent should ever hear how long their child has left on Earth," Jacki said. "He had no understanding. But we knew everything."
Jacki and her family redirected their grief at losing Harlan into a 501©3 charity they founded called "Harlan's Heroes" (www.harlansheroes.org).
"Harlan's Heroes" helps children affected by cancer, with an emphasis on recurring brain cancer and kids who relapse. They "adopt" individual kids, giving customized aid… anything from an all-expense paid weekend get-away, or helping with bills so parents can become caretakers.
It's 100% volunteer-based, so 100% of what's donated goes back to the kids.
Its 1st-ever golf tournament September 14th in Tega Cay. More info >> www.harlansheroes.com/events
"Harlan's passing will never become easy," Jacki said. "We will never forget him, nor do we ever want to."
Also… tonight… look at the Charlotte skyline. It'll be gold.
That's because of Jacki.
She says she wrote the Wells Fargo Duke Energy Center and asked them to kick September off the right way.
Thank you, Jacki. For sharing your son and shaping your sorrow into a channel to help others.
Do what you can this month. Make Pediatric Cancer Awareness about ACTION. Sign up for one of the many fundraisers (I'll post many in coming days). Donate time, money or love. Hug your own healthy kids tightly.
If nothing else, share Harlan's story. Spread the word. Help make a difference in whatever big or small way you can.