When Bennett (Benny) was just three months old, his mother, Sarah, noticed that he would not turn his head to the left. More than this, his movements seemed a bit abnormal, she describes them as “jerky”. These two symptoms were enough for Sarah to make an appointment with a neurologist as she was worried Benny may be experiencing small seizures. The neurologist checked Benny and assured Sarah that he was perfectly fine and most likely just reacting to acid reflux, a common issue in newborns.
This explanation did not completely resonate with Sarah. She continued to watch Benny closely and had concerns that there was more going on with his development. Days before his 6 month well visit, she expressed her concerns to her mother. Her mom responded that she needed to ask the pediatrician about the “yellow fog” in his pupil. Sarah had noticed this, but assumed that his eyes were simply changing color as a newborn. Sarah also noticed that Benny’s left eye did not glow in the baby monitor, only his right. His left eye was completely black in the video every single night. Sarah had found this a little disturbing but had not thought much about it.
However, coupled with what her mother was noticing, she was now determined to find answers.
Sarah immediately searched the internet and came across the Know The Glow website. Here she read that a “glow” seen with the naked eye, or in flash photography can be a sign of one of more than 20 visual conditions in children. She also learned that the lack of a glow in a child video monitor can indicate these same conditions. Her heart sank, as she read that one of these pediatric visual diseases (Retinoblastoma) could not only threaten a child’s vision but potentially their life. She immediately took a picture of Benny with a flash, and saw the “glow”. She was filled with worry and could not wait any longer for Benny to be examined.
The very next morning she contacted her pediatrician explaining what she had noticed and asked to move up his well visit. They agreed and Benny was soon in the office where they performed a red eye reflex text in a dimly lit room after his eye had a chance to adjust. The doctor could not see a reflex in Benny’s left eye. Suspicious of Retinoblastoma, but not informing Sarah at the time, she sent them immediately to a pediatric ophthalmologist in Salt Lake City, where they live.
Once there, Benny’s eyes were dilated and an exam was performed. Sarah says that as soon as they covered Benny’s right eye he became very aggravated and it was obvious he could not see. The ophthalmologist did not give Sarah a diagnosis, explaining that Benny would need an MRI for complete clarification. But she reassured her that Primary Children’s Hospital in Salt Lake was well equipped to handle whatever Benny’s condition was determined to be. The next day Benny received an MRI.
That night Sarah received a call from the lead oncologist at Primary Children’s, Dr. Eric Hansen. He explained he was currently in Nepal doing relief work. However, he had reviewed Benny’s MRI scans and confirmed that he did, in fact, have Retinoblastoma. Sarah was in despair but says that Dr. Hansen had a very calming demeanor and took his time with her that morning despite being worlds away. She immediately trusted him and felt comfort in his care.
Dr. Hansen explained that Benny’s cancer was very advanced, his tumor was a grade E taking up his entire left globe. His retina was detached and he no longer had vision in his eye. He explained that treatment needed to begin immediately, they could not wait for Dr. Hansen to return from Nepal. He gave her three options:
- Start intra arterial chemotherapy (IAC) where chemotherapy mediation would be administered directly into Benny’s tumor. This was the preferred form of treatment but he and Dr. Feola were the only doctors in Utah who could perform it at the time. If they started IAC immediately, they would need to travel to another hospital outside of Utah.
- They could remove Benny’s eye (enucleate).
- They could begin with systemic chemotherapy and start IAC once Dr. Hansen returned from Nepal.
Sarah chose to begin with systemic chemotherapy as she felt most comfortable having Dr. Hansen cares for Benny.
Sarah was unaware, but just a few months previous to that day three local doctors had started a comprehensive Retinoblastoma program at Primary Children’s. This team of doctors was made up of Dr. Eric Hansen (ocular oncologist), Dr. Matthew Dietz (hematologist – oncologist) and Dr. Peter Feola (radiologist). She truly believes that this team of doctors and their determination to begin this program saved Benny’s life.
Benny ultimately had 1 round of systemic chemotherapy. His tumor reacted well to this initial treatment. Once Dr. Hansen returned to Utah, he performed additional EUA’s and Dr. Feola completed 3 additional rounds of IAC. These two forms of chemotherapy proved to be very effective and soon Benny’s tumor was inactive and Benny’s retina reattached without requiring further intervention.
During this time Benny also underwent genetic testing where it was discovered he was missing an entire RB1 gene. His cancer was genetic and with that came risks of further development. It was also discovered that he is missing the long arm of his 13th chromosome. This genetic mutation has caused some fine motor and gross motor delays for Benny as well as developmental delays in his verbal communication.
Benny also started patching therapy, which he continues to this day. He patches his non-cancerous eye for 30 – 40 minutes each day. Sarah believes that through patching Benny has re-gained a small portion of his vision.
Benny was monitored every month after chemotherapy ended. Five months after his final treatment it was discovered that multiple new tumors had begun to develop. This new seeding was treated with laser therapy. Since then a few more tumors have begun to develop and have also been treated with laser therapy. Benny’s main tumor remains calcified.
Benny is now two years old. He will continue to have an EUA every month until the age of 7 to make sure no new tumors begin to grow.
Looking back at photos, Sarah says that she can see the glow in his flash photos as early as 3 months. She wishes at the time she recognized what these early signs were. She is very grateful that she noticed the lack of reflex in her baby monitor and that her mother also noticed a strange fog in Benny’s eye. She knows all too well that things could have been very different if she had not demanded answers for these signs.
Sarah has shared the baby monitor video of Benny that first alerted her of his condition to as many as possible. This video has “gone viral” reaching families across the globe. She is determined to share his story, video and photos with as many as possible in the hopes of reaching other children in need of diagnosis and treatment.
All of us at Know the Glow are inspired by Sarah’s determination to use Benny’s journey to help others. We are so grateful for her devotion to helping KTG spread awareness around the world. We know that together we will reach many more families in need.
