Diagnosis: Bilateral Retinoblastoma
Aleah Cox says that she will be forever grateful that she posted a video of her then four month old daughter, Aariyah on Facebook. At the time, she did not think anything of the post. She frequently posted photos of Aariyah. But this one simple video post changed their lives forever.
After viewing the video, one of Aleah’s friends, Ally, noticed a very small, faint and sudden sign. Aariyah’s video showed a flash (or glow) when the light hit Aariyah’s eye just right. Fortunately, Aleah’s friend was aware that this glow could mean so much more. She forwarded an article that discussed how a child discovered they had retinoblastoma, cancer of the eye, after noticing a similar glow. Aleah said that as soon as she saw the photos in the article she knew there was something wrong, as the glow in the photo looked like many of the flash photos she had taken of Aariyah.
The very next day she took Aariyah to her pediatrician in Columbia, Missouri where they live, expressing her concerns. The pediatrician performed the red eye reflex test in a dimly lit room after Aariyah’s eyes were given a chance to adjust to the new light. Right away the pediatrician said that she could not find a normal red reflex in one of Aariyah’s eyes. They were sent to see an ocular specialist.
The specialist did a thorough exam of Aariyah. After the exam, Aleah’s fears were confirmed. Aariyah had tumors in not one, but both of her eyes. They believed she had bilateral retinoblastoma and were sent to meet with Dr. Daniel Willis and Dr. Gregg Lueder at St. Louis Children’s Hospital.
On August 5th, 2022 Aariyah had an exam under anesthesia (EUA). This exam confirmed that she did, in fact, have bilateral RB. Her right eye had a very large mass behind it. The left eye had a smaller mass. Just 12 days later a port was fitted and Aariyah began her systemic chemotherapy regimen. She would receive chemotherapy every 4 weeks. Before each round she would have an EUA to determine how effective the treatment was shrinking the tumors.
The chemotherapy proved to be very successful. After just a few months of treatment, the tumors in Aariyah’s left eye were completely dead. At Aariyah’s latest MRI and EUA they were given the best news. The tumors in her left eye are completely gone and they expect her to have 20/20 vision in that eye. The two previous tumors in her right eye have shrunk to half their size. These will continue to be closely monitored and treated with cryotherapy as needed. They don’t anticipate any further chemotherapy treatment!
Aleah says that she is extremely grateful for her friend Ally, who spoke up and informed her that the glow she noticed in Aariyah’s eyes could mean so much more. She is well aware that this one video quite possibly saved not only her daughter’s eyesight, but also her life.
Aleah is eager to share her story in the hopes of informing others about the glow, as so many are simply unaware of this very important sign. She also hopes that it will encourage others to speak up when they notice the glow in a friend’s photos, as she will be forever to grateful to her friend who did just that. And finally, she hopes that her story will inspire parents to seek care for their children as soon as they notice this silent but significant sign in their children’s photos.