A little boy, as any parent can attest, makes a lot of noise. There is clanging, crashing, running, laughing and every other matter of noise that indicates fun is being had or a mess is being made.
The home of Jacki and Jonathan Sullins, in Catawba, is quiet. Their little boy, Harlan, 3, their beloved mess and noisemaker, died on Oct. 25 after a heroic struggle with a rare form of brain cancer.
Now, three weeks later, Jacki Sullins cries as she tells the story of the last few days of Harlan’s life, her hair still short from when she shaved it a few months ago as a fundraiser for pediatric cancer research.
“It was an eerie thing,” she said. “He knew it was going to happen.”
Back in September, Harlan’s oncologist told the family that it was only a matter of time. After two surgeries, four cycles of chemotherapy, 66 proton beam radiation treatments and plenty of other drastic measures, Harlan’s fight was going to end. The grade 2 ependymoma that was first discovered in February 2013 wasn’t going to let him win.
But Harlan died on his own terms, his mother said. When they found out he was terminal, his parents promised him there would be no more tubes, no more booboos, no more owies. And there weren’t. In the last few days of his life, Harlan wouldn’t sleep and wouldn’t sit still, even though he couldn’t walk on his own because of all the treatments.
Even in his last hours, he wouldn’t stop talking, Jacki Sullins said.
“We kept saying to him that it was OK, that he could rest now,” she said.
They miss him more than anything, but they find comfort in their faith and in knowing that after nearly two years of fighting, Harlan is finally cured.
“That is a peace like no other,” Sullins said. “We know he is finally the child he was not allowed to be for two years.”
Sullins is also sure that Harlan is not alone. Three years ago, when Harlan was just 10 months old, Jacki Sullins’ sister, Chrissy, died at the age of 35 from Huntington’s disease. They always had a special bond, and Sullins is sure that Chrissy was waiting for Harlan and is now taking care of him.
During Harlan’s battle with cancer, his supporters created a Facebook page so people could follow his journey. By the time he died, he had more than 5,400 “likes” on his page. In the three weeks since a page for his foundation was started, more than 1,700 have “liked” this new page to show their support.
Across the country, Sullins said, people know Harlan’s story and they want to share it.
Even Gov. Nikki Haley has heard of Harlan. A few days ago, the Sullins’ got a piece of mail from the governor’s office. Haley had signed a proclamation declaring September 2014 as Childhood Cancer Awareness Month and wanted the Sullins family to have it.
The support they’ve received from people from nearby and far away, through donations, nice thoughts on Facebook and acts of kindness, takes their breath away, Jacki Sullins said.
“There is still good in this world,” she said.
The last two years have been consumed by cancer for the family. For two years, Sullins said, they have thought of nothing but the fight. She become Harlan’s full-time caretaker, while Jonathan continued his job in the National Guard in Charlotte.
Now that Harlan is gone, she said the fight will continue.
“I can’t hold Harlan any more and I can’t touch him,” Sullins said.
“But if I can hold things I know are going to help, I know it’s for him.”
In a few short months, the Sullins family, and their close friends, hope to have Harlan’s Heroes, a nonprofit foundation, ready to raise awareness of childhood cancers, help individual families and fight for a cure.
Large organizations such as the American Cancer Society and the Leukemia and Lymphoma Society devote very small percentages of their research funding to pediatric cancer, according to People Against Childhood Cancer, a group that raises awareness of childhood cancers.
But, cancer is the number one cause of death by disease in children who survive infancy. In 2014, more than 10,000 children under the age of 14 will be diagnosed with cancer, according to the National Cancer Institute.
With those numbers, and knowing the reality of fighting, and losing, a battle with pediatric cancer, Sullins said there’s no way she could turn her back on the issue.
The main focus of Harlan’s Heroes will be to help relapsed pediatric brain tumor patients. The Sullins family experienced firsthand that lots of help is available when children are initially diagnosed, but there’s often a shortage of resources when a child relapses, like Harlan did.
They hope they can support families with “help, hope and care” and spread as much awareness as possible about pediatric cancers, all in Harlan’s name.
“Harlan deserves more than his name in granite,” Sullins said. “He did not pass in vain.”