Baby's rare cancer caught early by observant mom

Amanda Gulley’s awareness and resolution resulted in her son, Grant Allen, getting early treatment for Retinoblastoma, a rare form of cancer almost exclusively found in young children.

Grant’s left eye was removed when he was about 8 months old and has been replaced by a glass eye.

In the photograph taken with a flash, one of Grant Allen’s eyes was white and the other one red, which is a warning sign of Retinoblastoma. Photo provided

Now at 13 months, watching a cellphone video captivates Grant. His focus goes from the phone screen to his mother, Amanda, and his grandmother, Cheryl Gulley. He charms everyone with his bright personality.

Like most expectant mothers, Amanda read everything she could about babies. One article was on Retinoblastoma.

Grant weighed 8 pounds, 5 ounces when he was born Dec. 31, 2017, and was healthy. Amanda became concerned at 6 months when she noticed when he looked into the light he had a glare in his left eye. She remembered this was a sign of Retinoblastoma. At 7 months, in photographs taken with a flash, one of his eyes was white and the other one red. Another warning sign.

Amanda emailed her mother a photo showing the difference in his eyes. They agreed to share the photo with the baby’s pediatrician, Dr. Debra Robertson of Poplar Bluff Pediatric Associates, who responded immediately to have him in her office at 2 p.m. that day, August 6.

When the family arrived at Dr. Robertson’s office, she already was on the phone with St. Louis Children’s Hospital making an appointment. When the St. Louis hospital staff said they would see Grant in two months, Dr. Robertson insisted he have an earlier appointment.

Mom and grandmother recall by August 15 a team at Children’s Hospital checked Grant and the next day Dr. Gregg Lueder sedated him for an MRI and eye exam. The tests confirmed it was cancer, very fast growing, with a large tumor in his left eye. The doctors did genetic testing, which came back negative.

When Amanda began noticing her son’s eye, some people called her overcautious. She refused to listen and said, “no, I know something is wrong. Just trust your instincts,” she stressed.

Cheryl agrees, “you have to be insistent. Dr. Debbie was. She traveled to St. Louis on her day off for the surgery. She was persistent with Children’s Hospital.”

Amanda recalls during one visit Dr. Robertson was making phone calls to get a second opinion before the surgery.

Grant had one bad day after surgery, but the next day he was fine, Amanda said.

Retinoblastoma is a rare tumor that mostly affects infants and small children,” Dr. Robertson said. “Because of this symptoms are rare. Signs to watch for are a whitish discoloration of the pupil, lazy eye or unequal eye movements, and eye redness and swelling.

“If you notice anything different with your child’s eyes, you should contact your pediatrician for an exam,” Dr. Robertson added. “Also, if you have any family history of Retinoblastoma, you should be sure to let your pediatrician know so he/she can be aware. We all screen regularly at each checkup for this rare condition as it is very important to catch it as early as possible and get them to a pediatric ophthalmologist for further testing if anything suspicious is seen.”

Calling life today “our new normal,” Amanda described, “the tumor was pretty large, he was so young he’ll never know the difference. It was scarey but God saw us through it.”

Cheryl explained, “He will have to have scans. We go back in April, but we are not certain how often.”

He seems not to realize one of his eyes is glass.

As Cheryl dangled her key chain in front him, she said, “he is a happy baby full of life. He will wear glasses, but they are mostly to protect his eyes.”

Family life is getting back to normal. Amanda is working at Easy Living, a group home, and enrolled in the local Hannibal-LaGrange University program.

Cheryl praised Amanda’s employers, “They were very good to her.”

Amanda had one session of her college class before the cancer diagnosis and she’s back in school this semester studying elementary education. While Amanda’s in class, Grant stays with Cheryl and grandfather Allen.

The family is learning Retinoblastoma may be rare, but is touching several area families.

Cheryl is a pharmacy technician supervisor for Poplar Bluff Regional Medical Center. One of her friend’s son, grandson and granddaughter each have the genetic Retinoblastoma.

Amanda is dedicating her Facebook page to raising awareness of Retinoblastoma. She feels the more people know about the cancer, the earlier children will be treated. Several other families have responded to her page. One family shared their 6-week-old baby has the cancer in both eyes and is being treated at St. Jude Children’s Research Hospital.

Amanda’s words of advice to parents is trust your instincts and seek help.