Diagnosis: Retinoblastoma
Kait Weber was well aware of Retinoblastoma (RB), a rare cancer that can develop in the back of the eyes of children. Her maternal aunt sadly had passed away at just 4 years of age after a long battle with RB. Her mother told Kait how the cancer had first been detected after a white glow was seen by her grandmother. No one else in the family had ever had RB. It was believed her cancer was just a rare sporadic case.
Even though there was not an identified genetic history to RB, when Kait started her own family she was concerned that this same cancer could develop in her children. After her son, Nate, was born she expressed these concerns to his pediatrician. She even asked if she should take him to an ophthalmologist to be extra sure his eyes were healthy. But her pediatrician reassured her that Nate would be given a red eye reflex exam at every visit, and if anything were to develop it would be caught. Months went by and Kait’s worries subsided as each visit Nate’s exam came back normal.
When Nate was just 7 months old, Kait was playing with him on the floor. When Nate turned his head in just the right light, she saw a white flash in his left eye. She was shocked and concerned that this could be the same glow that her grandmother had seen in her aunt’s eyes. Kait told her husband what she noticed, but he could not see the glow in Nate’s eye. They decided to take a flash photo of Nate. Kait says that her heart sank when she looked at the image. The glow was very clearly present.
Kait was now very concerned that Nate too had Retinoblastoma. She immediately contacted her pediatrician who sent her to a pediatric ophthalmologist, Dr. Neutze, in her home town of Fallston, Maryland. This doctor confirmed that Nate had a tumor developing in his left eye. It was about the size of the tip of a pinky finger. Nate would need immediate treatment. They were referred to Dr. Carol Shields at Wills Eye Hospital in Philadelphia. However, Dr. Shields was on a medical trip outside of the country. They waited one week to see her.
In the short week that they waited to be examined by Dr. Shields, his tumor had grown considerably. It was a Grade E and his retina was completely detached. He was blind in his left eye. The good news was that the cancer was contained in the eye for now. It was decided that Nate would undergo three rounds of Intra Arterial Chemotherapy (IAC) as well as cryo and laser therapy for any seeding.
Nate’s chemotherapy regimen proved to be very successful. His tumor shrunk 50% after the first round and it was gone after the second! They continued the third treatment to be sure all the cells were gone. Nate was tested, and does not carry the gene for RB. This has the geneticists baffled, as they are sure there must be a link that they are just not aware of.
Nate is now nine years old, in the fourth grade and thriving! He excels academically, testing at an 8th grade level. He loves to play soccer. He does not let his limited vision hold him back in any way.Kait knows all too well how lucky it was that she was aware of the Glow and acted as quickly as she did to find answers for Nate. She is determined to share their story and spread awareness to as many as possible in the hopes of reaching other children in need. Along with another RB mom, Beth Stoner Shephard, she helped found the Foresight Fund. This organization helps raise funding for RB research through Alex’s Lemonade Stand Foundation. She hopes that through research, geneticists will someday determine the link that is in her family making them susceptible to this potentially life threatening disease.
