West Virginia mom’s intuition leads to lifesaving diagnosis for her son

Negan Castleberry poses with his mom for portraits taken by Flashes of Hope while wearing the boxing gloves gifted by his classmates at Belmont Elementary School.

As a licensed practical nurse and mom of 2, Jennifer Castleberry has long relied on her instincts. But nothing tested them quite like the mysterious, lingering symptoms that plagued her energetic 8-year-old son, Negan. For months, Negan battled recurring respiratory issues. Then came the night wakings, leg pain and headaches. Jennifer’s concern grew despite rounds of antibiotics and steroids to treat his asthma.

“I took him to see his pediatrician and Akron Children’s Quick Care in Belpre. He would get better for a little while, but then he would get sick again,” said Jennifer. Then, on Jan. 23, Jennifer came home from work to a new and alarming development – large, circular rashes on Negan’s hands, along with a fever.

Before his cancer diagnosis, Negan was a typical 8-year-old who enjoyed video games, basketball and swimming.

A shocking diagnosis

“Something told me I needed to take him to the emergency room (ER) in Belpre,” she recalled. “I felt silly taking him to the ER for a rash. But he’d been sick on and off for months, and I was hoping to get answers.”

What began as a trip to the ER for a rash turned into something far more serious. Though the initial diagnosis pointed to hand, foot and mouth disease, Jennifer pushed for bloodwork. The results showed abnormalities suggestive of cancer.

“I was shocked. The news caught me off guard,” she said. At 1 a.m., she called her husband and told him to meet them at Akron Children’s. There, further tests confirmed Negan had acute myeloid leukemia (AML), a cancer of the blood and bone marrow.

Negan is now in remission but will need to undergo monthly bloodwork to monitor for recurrence.

No time to waste

Within 4 days of his admission, Negan began chemotherapy. According to Dr. Hannah Elkus, Negan’s oncologist, “AML is the second most common type of childhood leukemia. Once we confirm the diagnosis, it’s important to get treatment started as soon as possible to stop the leukemia cells from continuing to divide and cause harm.”

Over the following month, Negan endured 4 extended hospital stays. Each lasted between 22 to 34 days, and not without side effects. Dr. Elkus explained that patients must stay inpatient during chemotherapy due to risk of serious infection and need for frequent blood and platelet transfusions.

Negan’s sister, Ashton, celebrated her 16th birthday at the hospital with her brother.

“The chemotherapy that we give to patients with AML suppresses their immune system for 3 to 4 weeks,” said Dr. Elkus. “Patients must be closely monitored during that time, so that they can receive antibiotics right away if they develop fever or other signs of infection.”

Negan’s AML cells contain a genetic change that placed him into a low-risk AML category. Because of this, he is expected to do well long-term.

Connections matter

Despite the challenges, Negan managed to stay connected to his second-grade class at Belmont Elementary through daily FaceTime calls. A classmate even held a lemonade stand to raise money for his family, and the entire class signed a pair of boxing gloves to cheer him on.

“School has been great about working with us,” Jennifer said.

On June 30, Negan had a clap out and bell ringing ceremony to signify his end of treatment.

Negan is now in remission, though he must undergo monthly bloodwork to monitor for recurrence. Through it all, Akron Children’s – 2 ½ hours from their home – and the nearby Ronald McDonald House became second homes for the Castleberrys.

“We’ve met so many awesome people through this journey,” Jennifer said. “From the volunteers who sat at his bedside and did art projects to the entire oncology team, they are wonderful. They have gone above and beyond caring for Negan.”

The support extended to Jennifer herself. One small but meaningful moment was a professional haircut – her first in years – from a volunteer beautician.

Negan enjoyed a hospital visit from Pro Football Hall of Famer Jack Youngblood.

#NegansNation

Back home, #NegansNation, a growing community of supporters, stepped up in big ways.

“My husband’s co-workers donated their vacation days; family and friends set up and attended a benefit for Negan; and Grandma stepped up to care for Negan’s older sister, our home and pets,” Jennifer shared. “When Negan first got diagnosed, I had no idea how we would be able to make this work being so far from home. Thanks to our community and church, we were able to.”

Now, with Negan on the path to recovery, Jennifer is ready to return to a dream she put on hold.

“I was enrolled in nursing classes at West Virginia University at Parkersburg and had applied to work at Marietta Memorial Health System,” she said. “That all got put on hold. But after everything we’ve been through, I want to give back – just like so many people gave to us.”