Surviving and Thriving on a G-Tube

Spencer Cox-carsLike many toddlers, young Spencer loves Matchbox cars. His blue eyes sparkle and a broad smile crosses his face as he scoots around the floor with them. Spencer has an impressive collection of the miniature cars … and it gets bigger every week. His aunt sends a new set to help him get through his weekly chemotherapy treatments.

Chemotherapy is the latest hurdle that Spencer and his family have faced since 2019 when the then 9-month-old was rushed to surgery to remove a large cancerous tumor that had spread from his cerebellum into the brain stem. A few months later, and just before his first birthday, a second craniotomy—and a long recovery—followed.

Surgery had come at a critical stage in his development. After weeks in the hospital, Spencer had lost the automatic instinct to suckle and hadn’t yet learned to chew and swallow food. Despite all of their efforts, he could no longer breastfeed. It was a particularly stressful time for Spencer’s mother, Erin. She had 5-year-old twins at home who needed her love and attention, and a baby in the hospital who wasn’t eating. The decision to insert the gastrostomy tube (G-tube) came as a great relief. Looking at Spencer today, it’s hard to believe that all of his nutritional needs have been met through a feeding tube in his stomach.

Spencer Cox-1That Spencer had grown and thrived during a continuing series of medical crises is due in no small part to the determination and dedication of his family and the constant communication between his dietitians and his medical team at the Vidant Medical Center in Greenville, North Carolina. 

“You have to advocate for your babies,” says Erin. “You know them best. Nothing compares to the knowledge a mother has of her baby.”

“At first, it took some time working with his nutritionist to figure out how to tweak his feeding regimens,” she recalls. Their diligence paid off, and Spencer began to gain weight and energy.

But just as their daily life had settled into a routine, an MRI revealed that the brain tumor was growing again, and Spencer now needed 2 years of chemotherapy.

And chemotherapy can take its toll. Spencer’s nutritionists are constantly monitoring his blood work and adjusting his feeding formula to make sure his nutritional needs are being met. With all of their efforts, Spencer’s weight at age 2 ½ is in the 90th percentile for boys his age.

Spencer Cox-2Enteral feeding is now part of his daily routine and allows him to have as normal a childhood as possible. “I’ve learned through trial and error how to pack everything up. I can even feed Spencer in the car,” said Erin. That allowed the family to enjoy a beach vacation together this summer.

Spencer also sits with his family at the dinner table. Teaching him how to swallow has always been part of his recovery. After months of virtual therapy sessions and what his mother describes as “a lot of blood, sweat, and tears,” Spencer can now take some foods by mouth.

“He will now accept a small amount of thickened apple juice from his honey bear cup,” exclaims his mother. “This was a huge victory!”

It will take more time—and perhaps more tears—for him to be able to chew the tortilla chips he now loves to lick.

Until then, the playful little boy who is quick to laugh and who loves cars will gain the nourishment he needs to survive and thrive through a G-tube.

Spencer Cox-3

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