AHOSKIE – Nathan Willoughby’s eyes were glued to the TV here Thursday afternoon.

In his small, but nimble, four-year-old hands was a game controller he used to navigate a lifelike video version of a Chevy Camaro that was screaming down a back road at breakneck speed.

More often than not, Nathan’s “hot rod” would crash, but the youngster never blinked; rather he would flash a smile, shrug his small shoulders and continue his journey.

Much like he’s doing right now with his life.

Two weeks ago, John (“JT”) and Lindsay Willoughby learned their son was suffering from Stage 3 Neuroblastoma, an extremely rare form of pediatric cancer. His initial symptoms were what he described to his parents as a “tummy ache.” After a trip to Carolina Pediatrics of Ahoskie on July 18 for a routine check-up that led to a round of blood work, followed by an additional battery of tests, including an abdominal ultrasound, at Vidant Roanoke-Chowan Hospital, Nathan, with mom and dad in tow, was admitted one day later (July 19) to the Children’s Hospital of the King’s Daughters (CHKD) in Norfolk, VA. There, the youngster has already experienced a surgical biopsy, a bilateral bone marrow biopsy, underwent a procedure to have a medicine port implanted, and received a five-day session of chemotherapy.

And all that is just the tip of the iceberg for Nathan and his family, one that includes “big sister” Abigail (age 6).

“He has a tumor, one with tentacles that intertwine around his liver, kidney and bile duct,” said mom, Lindsay. “That tumor is inoperable right now due to its size. His doctor is hoping that chemotherapy and radiation will help shrink the tumor to a point where they can either operate and remove it or use proton therapy.”

The latter is a treatment that delivers higher doses of radiation to a specific area capable of controlling and managing cancer while significantly reducing damage to healthy tissue and vital organs.

“Even though the cancer is at the Stage 3 level, they (CHKD) are treating it as Stage 4 unfavorable histology, high risk Neuroblastoma, meaning they’re treating it very aggressively,” said Lindsay.

She added that the early tests performed in Ahoskie revealed high enzyme levels in his liver and dehydration. The testing performed at R-CH was sent to a pediatric specialist at Vidant Medical Center in Greenville.

“When those results came back, I was told to call my husband because I would need him for support when they broke the news to us about finding a mass behind Nathan’s liver,” Lindsay remarked. “The hospital then performed a full CT scan on Nathan, from his head to his toes, and a van arrived from CHKD to pick him up; we loaded up and headed to Norfolk on the 19th.”

She added that the tumor could have been in Nathan’s tiny body at birth, but that’s an unknown. The only known fact is the rarity of this type of cancer. Only 500-to-700 cases are diagnosed per year, and of those 10 percent are malignant. Unfortunately, Nathan is in that 10 percent.

“They explained to us that the cancer is a mutation of his embryonic cells,” Lindsay noted. “Those cells didn’t develop like they were supposed to.”

The initial round of in-patient chemotherapy at CHKD is complete. Nathan will have a three-week break at home, and then return to Norfolk for another five days of in-patient chemo.

“We were told to expect to follow that schedule for at least one year,” said Lindsay. “And that’s not counting in-between trips to Norfolk for check-ups. Plus, if he comes down with a bad cold, or develops a fever, or bumps his head, we have to take him to CHKD.

“We did get some good news from the results of the bone marrow biopsy as those tests came back negative, meaning the cancer has not spread there,” she added.

Still, Nathan’s diagnosis has placed an emotional strain on the family.

“I feel like somebody has hit me with a two-by-four,” Lindsay remarked. “It’s an emotional roller-coaster for us day-to-day, and we never know what tomorrow holds until it arrives.”

Meanwhile, Lindsay still has to pay attention to Abigail, a rising first-grade student at Bearfield Primary School.

“We’re trying not to alter her life anymore than it has to be,” she stressed. “I’ll be with Nathan at least five days at a time. That mean JT will have to get her up, dressed and ready for school and then she’ll have to stay with a friend or at daycare until he gets off work.”

The staff at CHKD have also worked with Abigail concerning Nathan’s medical condition. Lindsay said they explained to Abigail, in six-year-old terms, what’s going on with her brother.

“They use props, stuffed animals, to explain things to her,” she said. “Not only has CHKD been fantastic to Nathan, but to our entire family.”

Meanwhile, Nathan, who was scheduled to enter Pre-K later this month at Bearfield, will have to put that early stage of his education on hold.

“We had already prepared him for school, with his new outfits, lunch box and book bag, but his doctor advised that it wasn’t a good idea to send him to school this year. He wants to start, and has been breezing through some Pre-K lesson books here at home. But all it not lost as the CHKD staff works with their young patients educationally while they are in the hospital,” Lindsay said.

JT and Lindsay donated a portion of the biopsied tumor to Neuroblastoma Cancer Research. One sample of the tumor has wound-up in the hands of the nation’s top Neuroblastoma researcher and other pathologists.

“If it can help Nathan or any child across America with this type of cancer then we’re all for it,” said Lindsay. “There are numerous doctors looking at Nathan’s medical case.”

Lindsay’s mother, Michelle Welch – who immediately hopped a plane for a trip south to Hertford County from her home in Connecticut upon learning of her grandson’s medical condition – said she has been amazed at the Hertford County community rallying around the family.

“The support I’ve seen here in this little area overwhelms me; you don’t see this where I live,” said Welch. “Lindsay’s and John’s friends and their church (Creech Memorial) are setting up fundraisers to support them. We’re receiving support off Facebook; through prayers; and just people sharing kind words. People are sending gift cards, snacks, crayons and coloring books, and boxes and boxes of stuffed animals that now blanket Nathan’s bed. And they’re including Abby (Abigail) in their gifts and thoughts. This support is incredible.”

Welch shared a story about a unique gift, saying that because Nathan will lose his hair from the chemo/radiation treatments, the family wanted to do something special for him and the hair he has left at this time.

“Chris Farmer of Christopher John’s Salon in Ahoskie drove to Norfolk on his own time and cut Nathan’s hair in a Mohawk style with a hint of color in it; he did that for free,” she said.

Among the scheduled fundraisers for the Willoughby family is one from 5:30-9 p.m. on Monday, Aug. 8 at Pizza Inn of Ahoskie, where tips and a portion of the sale of food items will be donated. For those unable to attend, but would like to help the family, a Go Fund Me account has been established at https://www.gofundme.com/2pa25yks

“JT has medical insurance at his job at Nucor, but we still face a lot of out-of-pocket expenses,” Lindsay explained. “We’re so appreciative of the support we have received thus far. Please continue to pray for Nathan and our family.”

One need that can be filled is an adult volunteer to take over Lindsay’s role as a Girl Scout leader for Daisy Troop # 628 of Ahoskie.

She had to step down from that position to dedicate more time to Nathan’s care. She had 16 girls in her Troop, ages 5-9, and was expecting to add 11 more, ages 10-13.