Diagnosis: Retinoblastoma
Early in December, Know the Glow Co-Founder Megan Webber had the pleasure of speaking with Brian Stanley. Brian is an adult retinoblastoma survivor changing the future for those wearing prosthetic eyes with machine tool technology. Brian has taken social media by storm with his ingenuity and enthusiasm. Megan says the call with Brian was very inspiring and left her excited about the future of prosthetic eyes with his unique vision, creativity and passion.
To begin the call, Brian told Megan about his own battle with retinoblastoma. Brian was born and raised in California and was not diagnosed until he was nearly six years old. It was actually an early elementary school vision screening that alerted Brian’s mother to the fact that Brian was having a hard time seeing with his right eye. Brian does not remember experiencing any pain but he did have some discomfort in his eye at the time and he does recall that he was having difficulty playing his favorite video games and walking into things. Within days, his mother took him to see the optometrist who was able to identify a concerning mass in young Brian’s left eye. Worried that this mass could be Retinoblastoma, the optometrist referred Brian immediately to another doctor which led to two days that in young Brian’s mind felt like one marathon day. He was seen by five different doctors the first day before being referred for a CT scan at Friendly Hills Regional Medical Center in La Habra the very next day. His memory is quite vivid regarding the CT scan and going into surgery. He recalls that by that very evening he was already being put under anesthesia for the removal of his eye.
The Doctors who had confirmed Brian’s diagnosis were Dr Murphree from CHLA and Dr. Yadavinder Dang. It was apparently far too advanced for discussing chemotherapy as an option. Due to Brian’s age and the severity of the tumor within his eye, enucleation was recommended as soon as possible to prevent any possible spreading of the cancer. The surgery was only a week after initially visiting the optometrist and fortunately, it was a complete success. Brian was no longer in pain, was cancer free, and was able to return home in a few days without the need for any further treatment.
Learning to face life without one eye though was quite an adjustment. Brian was kept home for a few months before returning to Kindergarten at Alta Loma Elementary. Here he was met with a Patch Party organized by his mother and also his teacher, Miss Maloney A photo of Brian with all of his classmates proudly wearing their patches outside the classroom showed how welcoming the students were! Even the teacher wore the patch! This is a photo that Brian has cherished for more than 20 years! However, not all of the students were completely able to embrace Brian’s return. Children are naturally curious and at times can be insensitive. However, for every bully or “comedian” there was always a matched set of friends ready to jump in to help defend Brian. While it was not a perfectly easy road during those early years, it was one full of more support than he could have imagined. Brian was impacted greatly by those around him who helped instill the confidence that he could achieve whatever he set his mind to try!
Brian became a Prototype Machinist while working in manufacturing and attending college. He started doing prototype work at an Engineering Firm while managing their internal machine shop and it was his work here using titanium that sparked his interest in creating a titanium prosthesis. Titanium is a light metal that is used often in cardiovascular and orthopedic implants. Brian had worked extensively within the medical and aerospace industry and knew that no one had created a titanium eye!
Brian used his own acrylic prosthesis as a model, so his fabrication of the eye was more of a replication process. He was determined to customize the solid titanium with special attention paid to fit and comfort as well as safety! Five years later, Brian has created over twenty eyes which have advanced from solid titanium to hollowed out titanium. His replication process for his LED prosthetic eyes enables him to wear the eye more comfortably as it is nearly identical in weight and shape to the traditional prosthetic eye.
Once this hollowed out version was perfected, Brian’s next inspiration came to him. He thought a natural next step would be to try “putting a light in it”! Brian anodizes the titanium by placing it in an electrolyte solution and running a current through the prosthetic to oxidize the metal. This allows for the color differential as well as the additional resistance to corrosion. Next the LED bulb is inserted within the hollow of the prosthesis. Testing shows that the low wattage makes it easy to wear the eye even for many hours without any discomfort or heat issues. Though he tries not to, Brian has even unintentionally slept with his prosthetic eye lit and occasionally forgets it’s switched on until he walks in front of a mirror or enters a dimly lit room where the light from his eye is visible!
Brian does consider himself an artist with his prosthetic eyes, though he has not incorporated painting into his process. He is definitely an inventor and loves every step of the creative process!. Brian’s prosthetic eyes now come in multiple colors and include creatively designed irises! He has even created a magnetic switch that facilitates ease of turning on and off the eye without the need to remove the prosthesis.
Brian says being contacted by Newsweek and other survivors has been very rewarding, but it is his desire to create something that will ultimately benefit many other children and adults who are living their best life with their uniquely beautiful view of the world that keeps him motivated.
Since his prostheses are still being tested for safety and other modifications, his eyes are not currently available for purchase. However, something tells us that it won’t be long before Brian’s Eyes find their way to the children and adults of tomorrow who are also ready and excited to show the world just how unique and beautiful they are too!
Who knows what will next inspire this unique and incredible individual!. Brian is full of brilliant ideas and KTG is excited to watch them all become a reality and to share about each of them with you!.
Follow Brian on his Instagram https://www.instagram.com/bsmachinist/ and TikTok pages @bsmachinist and don’t forget to check out his cameo in JP’s “I’m Perfect” video https://www.facebook.com/reel/1076013523065894/, a video which has already inspired several of our KTG families to follow in their footsteps with “I’m Perfect” video clips of their own!!
Thank you Brian for not only daring to be different but for being brave, bold, and brilliantly innovative! You are a true hero and inspiration!
