Parents of Harlan the Hero say more funding, awareness needed for pediatric cancers
Jonathan and Jacki Sullins admit they see some things differently now than they did just a few years ago – things like gold ribbons.
A military wife, Jacki said she saw gold ribbons and bows on homes, lamp posts or businesses and mistook them for yellow ribbons showing support for the armed forces.
That was before they learned that September was Childhood Cancer Awareness Month. Before they started a foundation to help families of children battling recurring or terminal brain cancer. Before their toddler son, Harlan, was diagnosed with a rare form of brain cancer that would eventually take his life just weeks before his fourth birthday.
“We were ignorant of it,” Jacki Sullins said of childhood cancer, which had not affected anyone in their family before February 2013. Even before that, they say, they saw cancer as something that occurs later in life, in older people.
Before Harlan’s diagnosis, Jacki said, “everything was hunky dory.” With two healthy and employed parents and a seemingly healthy little boy, childhood cancer was a distant unknown to them. Yet their hearts went out to the little shaved-head boys and girls they saw on the commercials for St. Jude Children’s Research Hospital or read about in news stories.
“You feel for them,” Jacki said, “but then you just kind of sweep it under the rug – ‘It’s not here, I don’t have to worry about it.’
“Then, all of a sudden, it’s there.”
Cancer, as it often does, crept into the Sullins family unwelcome, in February 2013, when doctors determined a plum-size mass in Harlan’s brain was ependymoma – a rare brain tumor.
Get out of your bubble. Because it can come knocking on your door at anytime.”
-Jacki Sullins, mother of “Harlan the Hero”
The Sullinses said they were blindsided by the diagnosis. Except for vomiting, which they said had been attributed to acid reflux that Harlan suffered from as a baby, and occasional loss of balance, he showed no symptoms of cancer.
“He had not missed any milestones,” Jacki said, “so we didn’t think anything was wrong.”
After the diagnosis, they said, Harlan’s symptoms suddenly made sense. As they cared for their son through two brain surgeries, six spinal taps, four cycles of high-dose chemotherapy and 66 radiation treatments, they learned just how prevalent childhood cancer is.
More than 15,000 children up to age 19 are diagnosed with cancer each year in the United States, or about 43 children each day, according to CureSearch for Children’s Cancer Research. One out of eight children diagnosed will not survive.
About 200 children are diagnosed each year with Harlan’s specific type of brain cancer, according to St. Jude Children’s Research Hospital.
“Once you become a parent of a child that has cancer, you realize how common it is,” Jonathan said. “A lot of people think it’s so uncommon, but there are a lot of people in this area that have children with cancer.”
Family history doesn’t matter, according to the American Cancer Society, because most childhood cancers are not hereditary.
15,780The number of children up to age 19 diagnosed with cancer each year in the United States
Doctors removed Harlan’s mass, but Jacki and Jonathan said he later relapsed. It was then they learned how complicated financial assistance can be, specifically for families of a child that relapses.
“When Harlan first got diagnosed, there were grants out there. We were able to get those grants,” Jonathan said. “And then when he got rediagnosed and we applied for more grants, they pretty much said, ‘We helped you already.’”
More, they said, some organizations that grant wishes to children with life-threatening or terminal illnesses don’t grant second wishes if the child goes into remission and then relapses.
After Harlan’s death, Jacki and Jonathan created a foundation that offers assistance to families of children battling brain cancer who are either terminal or have relapsed. Harlan’s Heroes has helped children and their families from as far west as Indiana and as far south as Florida with a variety of requests. It may be a trip to Carowinds, transportation to the zoo or simply help with paying bills, since some parents are unable to work because they’re taking care of their sick child.
The organization helps hundreds of children each year in Charlotte-area hospitals, primarily Hemby Children’s Hospital, with things like reverse trick-or-treating for children who are too sick to leave their rooms at Halloween, “blessing bags” filled with food items and gift cards for families at Thanksgiving and random breakfasts or craft days throughout the year.
The organization sponsors a number of local fundraisers, including the Baxter Trails CureSearch Hike in Fort Mill and a golf tournament, both of which are this month.
Harlan’s Heroes is a way for Jacki and Jonathan to carry on their son’s battle, helping boys and girls facing similar disease and assisting their families through the same issues they encountered while caring for Harlan.
“Childhood cancer is the most underfunded cancer research there is,” Jonathan said, adding that pediatric cancers, collectively, receive less than 4 percent of all government funding for cancer research. “Then you have to divide that less than 4 percent to all pediatric cancers.”
With so little funding and focus on the issue, Jacki said it takes grassroots efforts, usually by parents and families touched by the disease, to bring awareness and funding to childhood cancer.
If we get the awareness out there, hopefully more funding comes with it.
-Jonathan Sullins, father of “Harlan the Hero”
Sitting down with The Herald to share their story – which they say is, unfortunately, not an uncommon one – was one way of doing this. At the beginning of Childhood Cancer Awareness Month, which runs throughout September, they want people to know how prevalent childhood cancer is, the funding deficit it faces compared to other cancers and the lack of publicity and awareness campaigns there are for it.
“If we get the awareness out there, hopefully more funding comes with it,” Jonathan said.
Progress is being made. More areas are “going gold” for Childhood Cancer Awareness Month, including Fort Mill and Tega Cay. A note posted on the Harlan’s Heroes Facebook page said Charlotte’s Duke Energy Center was expected to light up in gold Saturday night. Now, the Sullinses are trying to get more Rock Hill businesses and landmarks to go gold and open other people’s eyes the way theirs have been opened.
Most importantly, they say, they want people to get involved – whether it’s making a donation to a childhood cancer organization, taking part in an initiative or simply talking about it with others so they know.
“Get out of your bubble,” Jacki said. “Because it can come knocking on your door at anytime.”
Not far from the front door of the Sullinses’ Catawba home, hanging in their living room is a painting of something else they see differently today than they did before Harlan was diagnosed: a dandelion, which was Harlan’s favorite flower. It’s also illustrated on the business cards for Harlan’s Heroes.
“That was his favorite flower, even though it was a weed,” Jonathan said with a laugh. “He loved always blowing the puff.”
Jacki said Harlan didn’t like dandelions in their earlier, yellow stage. She chuckled remembering how they tried to explain to him that they weren’t really flowers.
“For years, we tried to get them out of the yard,” she said.
“And now we just welcome them,” Jonathan said.