Ashley and her husband, Charles, were thrilled to learn that they were finally pregnant with their first child. After close to six years of trying, their prayers were finally answered. On November 17th, 2020 baby Averyanna was born. She was perfect in every way and the new family was excited to embrace their new life together over the holidays.
Just five weeks later they gathered their extended family to celebrate Christmas. Ashley, an amateur photographer, took many indoor photos using a flash to capture this happy occasion. The photos were all fantastic, but one photo would change the course of their lives forever.
This photo was a close up image of Averyanna. This photo captured a clear Glow in her left pupil. Ashley was concerned. She remembered reading that this could be a sign of cancer. She immediately began to search the internet for answers. She learned that the Glow (leukocoria) could be the sign of more than 20 different conditions, that it could be signaling something as serious as cancer, but also often occurs when the child’s eyes are slightly misaligned. Since Averyanna was only 5 weeks old her eyes often wandered. Ashley was reassured by multiple family members that this was most likely the cause and there was never a concern at Averyanna’s pediatrician appointments. But Ashley could not shake the feeling that there was something more going on with her daughter’s health after seeing this distinct glow in several photos to follow.
Just over two months later, Averyanna had her 4 month well visit, in which she was seen by a different pediatrician in the office. Almost as soon as she entered the room, Ashley says this new doctor asked how long Averyanna had been exhibiting a lazy eye. Ashley explained that she had been noticing this since birth and also mentioned to the doctor that she had captured a glow in her photo. The doctor immediately turned off the lights and did the red eye reflex exam on Averyanna. Ashley knew by her demeanor something was wrong. The doctor told them they needed to be examined by a pediatric ophthalmologist immediately and made an appointment for the next week.
Ashley and Charles took Averyanna to East Tennessee Children’s Hospital in Knoxville to meet with Dr. Allyson Schmitt, a pediatric ophthalmologist. Being the height of Covid, only one parent was able to be in the examination room. Just minutes into the exam, Dr. Schmitt stopped and asked Ashley to call her husband into the building. Her heart sank. She knew her worst fears were confirmed. Just moments later the young parents were told “this is going to be really hard for you to hear. Your child has retinoblastoma. Not just in one eye, but both, and I’m so thankful we caught it today”. Ashely said that with these words she went numb.
Dr. Schmitt referred them to St. Jude and they were told there was no time to wait. The family got in the car and drove the eight hours across the entire state of Tennessee. Once they arrived at St. Jude, they were warmly welcomed by Dr. Rachel Brennan and her oncology team. They also met with Pediatric Ophthalmology specialist, Dr. Matt Wilson and his team. Ashley and Charles felt grateful to have Averyanna in the care of such wonderful medical professionals.
Within a day she had her first exam under anesthesia and a MRI, along with many other diagnostic tests. They were told very quickly that she did in fact have RB, she had a large mass in her left eye blocking her central vision. Her right eye had two smaller tumors in her peripheral vision. They were told the best course of treatment would be systemic chemotherapy.
A central line was placed and just one week later Averyanna began her chemotherapy regimen. Over the next nine months she had 11 different chemotherapy rounds comprised of three different kinds of medication. She also had laser and cryotherapy during this time. Ashley says that despite how difficult this was on Averyanna physically, she was incredibly strong and resilient and remained a cheerful, happy baby. In January of 2021, she had her final round of treatment. The two smaller tumors in her right were calcified through treatment and this eye was stable, the large mass in Averyanna’s left eye however had been troublesome throughout her treatment but they were both prepared for the prognosis this eye had from the beginning of treatment.
Three weeks later the family returned to St. Jude for their first post-chemotherapy follow up exam. They were told that the large mass had begun to grow again and that they should consider enucleation of the left eye. Over the next three weeks Ashley and Charles said many prayers and deliberated over the decision to enucleate. They were unsure of how to proceed. However, at the next exam just three weeks later, the decision was made for them. The tumor had grown even more and was now wrapping around the optic nerve. The eye had no chance of regaining vision and the tumor was now putting Averyanna’s brain and life in danger. Enucleation was the only option. Just days later, Averyanna had surgery to remove her left eye.
Ashley says that the surgery did not seem to bother Averyanna in the slightest. If anything, it opened upon a whole new energy! She remained the happy, cheerful baby they knew but she had an added joy that was clear to everyone around.
Averyanna is now 3 years old. Since this surgery her right eye has remained stable and has close to 20/20 vision. She has adjusted very well to her prosthetic and it looks amazing. She has an EUA and MRI every 3 months to make sure there is no re-growth and will continue to do so until she is five years old. She is thriving in every way and especially loves cartoons, music and dancing!
Ashley and Charles are determined to spread awareness of the Glow to as many as possible. They realize just how important it is to discover Retinoblastoma in its early stages. They also realize that the Glow may be the only way parents of very young children can become aware there is a tumor developing in their child’s eye. They hope that by sharing their story another family will become aware of this very small but significant sign.
