Diagnosis: Retinoblastoma
It was a perfectly normal Monday. Before naptime, Lauren settled in the big rocking chair with her eight-month-old son, Theo, on her lap to read him a book before putting him down to sleep. Theo looked up at her and, and just for a moment, a ray of light met his left pupil and it flashed with a Glow. It was so quick that Lauren put it out of her mind; but the next day she noticed it again. Lauren laid Theo on the changing table and there it was. More pronounced than before, was a whiteness in the pupil of his eye.
Theo’s right pupil was so black, but his left pupil was not. It was as if she was looking into a pond of water so clear and shallow that you can see the rocky white floor below. There was an unsought Glow illuminated by the light.
Lauren had never heard of Leukocoria, an abnormal white reflection from the retina of the eye. She was also unaware of the 20 different conditions it can indicate. Even so, her instinct was telling her something was terribly wrong. She immediately went to her computer and googled things like “whiteness in child’s eye,” “white pupil,” and so on. The resemblance of what Lauren was seeing in Theo’s eye compared to the images that came up was uncanny. They were linked to articles about Retinoblastoma, a rare form of cancer that attacks the eye which accounts for about 4% of all childhood cancers. Lauren’s mind raced in shock as she sat in front of her computer. “It’s eye cancer. My Theo has eye cancer. Should I still go to the grocery store when he wakes up? What am I talking about? (Many curse words) Theo has eye cancer!!”
Her husband and family tried to calm her fears, but Lauren was not going to let it go.
She was determined to get answers. She and her husband took Theo in to see his pediatrician first thing the next morning. Theo was first seen by a physician’s assistant. After a simple red eye reflex exam, the PA hurriedly left the room and brought back the Pediatrician. In short order the pediatrician told them that she also saw something of concern in Theo’s eye. She would not be able to diagnose Theo herself as this required a more thorough exam. The doctor would be calling soon with next steps but Lauren and her husband were told to take Theo home and wait for the call.
Upon arriving back at home, no more than 20 minutes passed before the Pediatrician called and told them to immediately take Theo to a pediatric ophthalmologist at the Seton Medical Center in Kyle, Texas, which was about 35 minutes South. Once there, the doctor dilated Theo’s eye and that was all it took. The Glow was now a super-visible white mass within the pupil. They were then sent to Round Rock, TX; over an hour away and with only 4oz of milk packed, to meet with a specialist in retinoblastoma, Dr. Armitage Harper of Austin Retina Associates. Although they were unable to perform a proper eye exam, because he was hungry and very much done with being poked that day, Dr. Harper was able to diagnose Theo with Retinoblastoma in the left eye.
Over the next several weeks, Theo was seen by oncologists, ophthalmologists, anesthesiologists, and many other doctors. He had multiple exams under anesthesia, a ton of blood-work to prepare for eminent surgery; and finally the family was advised that the best course of action was to completely remove Theo’s left eye, medically known as enucleation. They would also take a mass of dermal fat and skin cells from Theo’s hip to create an implant to go where the eye was. On November 2, 2015, Dr. Harper surgically removed Theo’s left eye, 10mm of Theo’s optic nerve, and performed the skin graph implant procedure at the Dell Children’s Medical Center of Central Texas in Austin. The surgery went very well and the family was sent home later that day.
Besides a bout of nausea, Theo recovered perfectly from the surgery and was back to his rambunctious self by the next day. In less than a week the pathology report was in. Lauren and her family were overjoyed to learn that the biopsy of the optic nerve showed that no cancer cells were found and the cancer was contained to the globe of the eye. Which meant… No Chemo for Theo! Best phone call ever!
Their journey was far from over though. Theo will have regular eye exams under anesthesia until he is nine-years-old. And may require up to five more surgeries until he is fully grown to ensure proper muscular development around the left eye socket and maintain the shape of his implant. Theo worked with ocularist Craig Pataky of Austin, TX who created a custom prosthetic eye. Lauren says, “It is remarkable how close to an exact match the prosthesis is! Many people have no idea Theo’s left eye is a prosthetic until they’re informed.”
Theo is now three and a half years old. He has eye exams under anesthesia every four months to make sure there is no sign of cancer in his right eye and to monitor the growth of his implant. To date, his exams have been all clear and he is not a carrier of the RB1 gene which means he’s at no risk of passing the cancer to his children. His case of Retinoblastoma was completely sporadic.
Lauren says she is very open with Theo about what happened; why he has a prosthetic eye and has made the process of caring for it part of their routine.
Theo is a very active, happy, and healthy three-and-a-half-year-old boy. He loves dinosaurs and going to Monster Truck shows. He attends a Montessori school and has hit every developmental milestone.
In Lauren’s words, “We’re very fortunate to have detected the Glow of Theo’s eye cancer as early as we did. It wasn’t just me. I am beyond grateful to all the nurses and doctors that acted on our case so professionally. I just had this intuition that something was wrong and the doctors listened and acted before the cancer could spread. We really had the best outcome of a worst-case scenario.” It is her hope that through sharing her son’s story and her own journey, other parents out there will follow their intuition and seek answers should the Glow ever appear to them. We are so grateful to Lauren and Theo for sharing their journey with us!
UPDATE
We at KTG are so happy to give a wonderful update on Theo! We originally posted Theo’s story in 2018, when he was just three years old. He is now seven and in the first grade. Lauren says that he has been doing very well the past four years since we posted his story. Theo has a cancer screening every four months and has remained cancer-free in each of these visits! Theo will continue to be screened until he is nine years old when he will officially become “cancer free”! Theo has undergone genetic testing and has discovered that he does not carry the RB1 gene. The dermal fat graft that Theo had in his left eye has developed wonderfully. He has not needed any further surgery to keep the proper shape of his socket! Theo loves to hike and to be outside. He hopes to be a paleontologist when he is older. He studies any and all creatures past and present. We know that Theo will be a huge success in whatever he decides to pursue!
