When Peter Halper heard his 3-year-old great-niece had cancer, he didn’t think it would take the girl’s life.
“She’s not going to pass away,” Halper remembered thinking about Emery Smith. “I was so far removed from it.”
The first time he saw the girl was at her funeral in 2017.
“At the funeral, looking at Emery’s parents, Zack and Jenna Smith, standing in front, I couldn’t figure out how they were going to do what they had to do,” Halper said.
It was at that moment he decided to work to make a difference.
Halper decided to run across the country in memory of Emery and to honor other children who were still fighting the disease, including Goshen native Caleb Gunawan. The current leg of Halper’s journey is dedicated specifically to the boy.
Halper and the Gunawan family met Wednesday in Noblesville, which turned out to be a meaningful experience for both parties.
Halper said he runs the equivalent of a marathon each day, between 27 to 30 miles, on his more than 3,076-mile journey. He started out in Dana Park, California, and will finish in Delaware on Nov. 13.
First it was the heat then the wildfires that hindered his journey, which went through the epicenter of the Grizzly Creek wildfire near Glenview Springs, Colorado. Halper had to re-route and then double back to finish that leg. The COVID-19 pandemic also created some re-routing and additional mileage, he said.
“It was so hot it was melting the bottoms of my shoes,” Halper said of the hot weather out west. “My shoes have only been lasting two to three days.”
All of his shoes are donated by friends and family members.
“Everyone’s been so gracious to help,” he said.
But Halper said that getting to meet the children or parents and siblings of those he’s running in memory of is the highlight of the trip.
“(Caleb) was all smiles. He wants to be a baker and he’s a very good baker,” Halper said, adding that Caleb baked chocolate banana bread for Halper and his crew. “It was great to see him happy and giving something and feeling well enough to do so and doing something he enjoyed.”
Caleb’s father, Martin, who spoke from Riley Hospital for Children where Caleb was undergoing immunotherapy, said Halper’s trek is a blessing.
“We’re very honored to know he’s taken on this substantial task to run over 3,000 miles (for Caleb),” Martin Gunawan said. “To know we’re not alone in this and we’re very grateful that he’s bringing awareness to the world that pediatric cancers are as real as other adult cancers.”
Gunawan said the research for pediatric cancer is “not where it should be, in my opinion.”
He said only 4% of the federal government funding for cancer research is allotted for pediatric cancer and a lot of the treatment the children receive is based on adult research and the medication is just downsized for the child’s weight.
Caleb was diagnosed with neuroblastoma four years ago when he was 4 years old. He battled through that and then relapsed in December 2018 and again in December 2019. After the last relapse, his father said he had the longest round of chemotherapy he’s ever had, which lasted almost a year.
“We just praise God he’s stable now and the doctor is comfortable ending the chemotherapy and doing immunotherapy now,” Martin Gunawan said.
Similar to what Halper expressed, Martin Gunawan said he and his wife, Chika, who have two other children, 10-year-old Matthew and 3-year-old Maura, heard of pediatric cancer, but never expected it.
“We weren’t as aware as we should be — until it struck Caleb,” he said. “It was very hard to understand. But our motto is Joshua 1:9, ‘Do not be afraid, be strong and courageous.’ It’s the only thing we cling on to; knowing that small voice in your heart is God. Our family could not have done this without God.”
Martin Gunawan said that because Caleb couldn’t get outside much to play even before the pandemic, his passion for baking started after watching the Food Network, especially the programs featuring children’s competitions.
“Bless my wife’s heart for her patience teaching Caleb,” he said, adding that now the boy does everything himself with his mother supervising. “And guess who gets to clean up? Dad!”
Martin Gunawan said there were several times that Caleb brought 60 loaves of banana bread to the farmer’s market during events for children and sold out.
As for meeting Halper, Martin Gunawan said Caleb was a little shy and star struck.
“Caleb loves Peter for what he’s doing,” Martin Gunawan said. “He may not fully understand it but he knows he’s doing it for him and other neuroblastoma warriors.”
Martin Gunawan mentioned a program the family started three years ago called Caleb’s ARK (Acts of Random Kindness). Participants hand out cards with some information about Caleb on it informing the recipient they’ve been given a random act of kindness. Those acts may be paying for the person next in line at a coffee shop or fast food restaurant, for example. Caleb’s ARK is held on Feb. 28 — the day Caleb was first diagnosed.
“It’s to increase awareness and spread some kindness — something I think we all agree we need more of,” Martin Gunawan said. “Instead of it being a bad memory we wanted to turn it in a day of kindness.”
FOR THE CHILDREN
Halper said his run started out in 19 segments for 19 children and it grew to 21 to 23 segments dedicated in memory of a child or in honor of a child still fighting the battle. The group reads cards that represent four to five other children each day, and they hold up photos parents sent Halper of the children.
“At the end of the run, we’ll have represented hundreds of children and it’s great that some are in honor of, not in memory of,” Halper said.
He said he’s also video chatted with numerous parents and children.
“I know neuroblastoma is classed as a rare disease but it just doesn’t feel like it,” he said. “When I’ve met so many children and families affected by it, it just doesn’t feel rare to me.”
With five weeks to go, exhaustion is starting to set in but Halper is thinking of what he can do next to achieve change.
“I just didn’t think anything bad would happen to her (Emery) and I didn’t expect my reaction at her funeral,” he said. “It felt like a big ball of tar I was choking on, it was that visceral.”
Halper said he will do something else and will remain involved and try to involve more people in the awareness of children fighting cancer.
“I’m in awe of how Caleb and other warriors and their parents face these things,” he said.
Martin Gunawan, however, was thankful for Halper.
“I represent other neuroblastoma parents in saying thank you to Peter,” he said.