Diagnosis: Retinoblastoma
Jayden’s mother, Kristen, says that he was a healthy and active toddler. However, from very early on she noticed a consistent glow in his right eye in the flash photos she took of him. She found the Glow strange but did not know that it could be an indicator of eye disease and did not give it much attention. Kristen began to notice that Jayden’s right eye would also wander at times. These two conditions concerned her, and she discussed her concerns with Jayden’s pediatrician on a few occasions. She was always told that everything was fine.
At Jayden’s 15-month appointment she brought up what she was noticing for the third time. Again, she was told all was perfectly normal. Just days later, Jayden suddenly stopped eating, talking, and playing. Kristen knew that something was terribly wrong and that she needed to act on her instincts.
She did not go back to her pediatrician but brought Jayden to urgent care. Here she was told that Jayden had pink eye. But three days later Jayden’s eye was completely swollen shut and triple the normal size. Kristen was determined to get answers and took Jayden straight to the Emergency Room at Duke Children’s Hospital.
Finally, the doctors here in the ER took Kristen and Jayden seriously. They, too, realized there was more going on than just pink eye. They did some initial scans and admitted Jayden to the hospital. The next morning, Jayden went under anesthesia for an exploratory exam by an ophthalmologist Dr. Edward Buckley. During this exam the doctors discovered a tumor behind his right eye. Jayden was diagnosed with Retinoblastoma, a rare eye cancer.
Kristen was shocked to learn that the doctors believed the cancer had been developing since he was 7 months old. The tumor was overtaking his entire eye and he had lost all vision in that eye. She was told that the “Glow” in his right eye was called leukocoria, an abnormal white reflection from the retina of the eye. It was a sign that there was something behind the eye. In their case it was a sign of his tumor.
Kristen was told Jayden’s cancer was starting to spread to the optic nerve, which would eventually spread to the brain if not treated. They needed to make decisions and act quickly. A spinal tap was done, a port was placed the next day, and Jayden started the first rounds of high dose systemic chemotherapy.
The following months were very difficult for the family. Chemotherapy was not easy for Jayden; he was often sick and in discomfort. Kristen says it was heartbreaking to watch him go through the side effects of chemotherapy, but that Jayden was a brave fighter. Two months after his RB diagnosis, Jayden’s eye was stable enough for surgery and he had his eye enucleated, removed. After his eye was enucleated, the family moved to Wisconsin where Jayden finished treatment at American Family Children’s Hospital.
Kristen says that once the cancer was out of his body, Jayden returned to the healthy and active toddler he once was. He smiled, talked and laughed again. Once Jayden was fitted with his first prosthetic eye, Kristen says he not only acted like his former self but looked like it too. She was so surprised at how wonderful a match his prosthetic eye was. She says it was the best day ever! She had her little boy back.
Jayden underwent a total of 6 rounds of chemotherapy and has had clear scans ever since. Kristen says they had regular exams under anesthesia to make sure there was no sign of the cancer returning until Jayden was 6 years old.
Jayden is now a lively 7-year-old who has moved past his days in the hospital fighting cancer. He recently celebrated being 5 years cancer-free! Kristen is so grateful to all the doctors, nurses and child-life specialists who helped him in his journey. She says that the assistance that they offered during the difficult months of treatment are what got the family through.
Kristen is determined to share her story as she wants every family to know about the Glow and the conditions it can indicate. She hopes that by doing so another family will act quickly when they notice the Glow in their child’s photos. She also wants to encourage parents to listen to their intuition. Even if they are reassured by medical professionals that all is well, she hopes parents will continue to seek answers for the symptoms they notice. She is forever grateful that she listened to hers.
