If you ask Edison “Eddie” Golden how he wound up getting chemotherapy at Roswell Park Comprehensive Cancer Center, he can tell you all the details.
“It was April 7, the start of everything,” he says, wrapped in a fuzzy Grinch blanket, examining his breakfast. “For a couple of weeks, I just really didn’t have a lot of energy and I didn’t want to do the stuff I normally would.”
He had a cough that wouldn’t go away and he wasn’t his normal active self, says Melissa Golden, his mom. “Since birth we’ve called him Sweaty Eddie because he just doesn’t stop. He loves to play outside. We usually have to call him in when it gets dark.”
That night, Michael, Eddie’s dad, took him to their pediatrician who worried about pneumonia and sent him to urgent care. From there, they were told to get to a hospital right away, where a blood test revealed it was leukemia.
“It was T-cell acute lymphoblastic leukemia,” Eddie says.
Two diagnoses in one
As they did the X-ray for pneumonia and found a mass between Eddie’s lungs, physicians saw something else they didn’t like. “We learned he has a double aortic arch, an extra part in his heart,” Melissa says. “The heart surgery will come later, after Eddie is done with his leukemia treatment,” she says.
With the Roswell Park Oishei Children's Cancer and Blood Disorders program, kids like Eddie benefit from the experts of both hospitals, inpatient care at Oishei Children’s Hospital, where he spent a month, and has been receiving outpatient care at Roswell Park for several months.
“He was very high-risk when he came to us,” says pediatric hematologist/oncologist, Kanwaldeep Mallhi, MD, Eddie’s doctor at Roswell Park. “He had a very high white blood cell count. He was quite sick. The family was overwhelmed initially, but they were very much ready to do whatever we needed to do. From the start, they were a resource family, very supportive of each other.”
Learning from other families
Eddie’s treatment consisted of four rounds of chemotherapy so far, resulting in his latest blood work showing no evidence of disease. He’ll next go into a maintenance round, which will last for two years.
While Eddie hasn’t been able to join his friends in school, his class participates in a special program called “Monkey in My Chair,” where a stuffed monkey takes a pediatric cancer patient’s place in the classroom. His friends all take turns toting the monkey, which Eddie has named Mr. Bananas, to different events at school, taking photos and send him notes through a journal. Eddie has a smaller version of the same monkey, named Mini Bananas, to keep with him at home.
“It’s such a cool thing. It’s all the things you don’t think of that families that have already gone through this journey know you need,” Melissa says. “We’re so grateful to the club that no one wants to join. We know every path is different. There are families who have had very hard journeys and they’re all still willing to share experiences and help us in the fight.”
Moments of light
Before losing his hair to chemotherapy, his nurses at Oshei told his mom that kids sometimes enjoy dying their hair bright colors to help with the change and to make it a little less scary.
“Before they finished saying that I screamed ‘Neon yellow!’,” Eddie laughs. He had a long, curly mullet at the time and the dye not only changed his hair to match his vibrant and sunny personality, it might have stained some of his pillowcases.
“The next day, we had to wait in the playroom while my room at Oishei was getting ready, and there was a black-light reactive air hockey table in there, so my hair was glowing,” he says.
Fighting cancer has brought Eddie some unexpected supporters, including his new pet, a “therapy” beta fish courtesy of Buffalo football player Khalil Shakir and Sweet Buffalo after they learned that Eddie isn’t that fond of dogs at a pet adoption event.
Eddie met another football player when he visited the patients at Oishei, Dalton Kincaid, who credited Eddie for an outstanding game, specifically while wearing the rubber “Stay Golden” bracelet Eddie gave him. “He had 101 yards receiving when he wore it,” Eddie says, beaming. “Days later, I got a package from him and he said he would wear my lucky bracelet for the rest of the season.”
A bright opportunity
Eddie also had the opportunity to interview Buffalo Sabres’ goalie Ukko-Pekka Luukkonen during the team’s annual visit to Roswell Park in October, making him very comfortable in front of cameras and earning him fans along the way.
Eddie will be bringing his star power, and his friends and family, to this year’s Tree of Hope celebration on Friday, December 12.
“He really feels like a celebrity already,” Melissa says with a grin. “He’s waiting for his contract.”
Eddie will be joined by his parents, his older and younger brothers, and extended family including his grandmother – also a Roswell Park patient – for the festivities. He’s excited to see the lights and to have the most important job of the evening.
The twinkling lights pale compared to Eddie’s outlook.
“He’s very extroverted, he likes to engage,” Dr. Mallhi says. “He’s a fun kid for sure. Even when he doesn’t feel great, he has a smile on his face. His whole family, they’re making it as fun and light as they can for him, which I think really helps the situation.”
It’s the first time one of her patients has been selected as the Tree of Hope lighter and Dr. Mallhi is eager to be there with Eddie and his family for their big moment.
“We’re very thankful that we have the support of so many people,” Melissa says. “It feels so good that so many people are rallying behind him. We feel that love for sure.”
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.
