Kanteera and her husband, Erwin, were thrilled to welcome their first born to the world in January of 2023. Their little girl, Grace, was born completely healthy and without complication. The first few months of Grace’s life she hit every developmental milestone and was thriving.
However, at Grace’s six month well visit, her doctor floated a pen in Grace’s visual field, but she did not follow the pen with her eyes or reach for it. She then turned on a small flashlight, Grace still did not follow the light with her eyes. Kanteera could sense that her pediatrician was concerned. The doctor said it might be a cataract that was causing Grace’s visual issues and she gave them an immediate referral to see a pediatric ophthalmologist.
The very next day the family was met at Texas Children’s Hospital by a Pediatric Ophthalmologist where Grace was given an ultrasound of both of her eyes. The ultrasound showed very clear masses inside her left and right eye. The doctor gently told them that both of Grace’s retinas were detached and that she had very limited vision. The mass that was revealed was one of two things; either a tumor caused by Retinoblastoma (RB), cancer of the eye, or a buildup of fluid caused by another condition called Coats’ Disease. She would need an immediate exam under anesthesia (EUA) to determine the proper diagnosis and treatment plan.
Kanteera and Erwin went home and researched both of these conditions. They were heartbroken by what they learned and filled with worry about their little girl’s future. They were anxious to discover her diagnosis and begin treatment.
A week later they returned to Texas Children’s for the EUA. Here they met with Ocular Oncologist, Dr. Dan Gombos. After the examination, Dr. Gombos was quite certain that Grace did have bi-lateral Retinoblastoma, cancer in both of her eyes. Her disease was quite advanced with a Grade D tumor in her right eye and a Grade E in her left. The MRI was done a few days later and it confirmed that Grace indeed had Retinoblastoma. The only good news during that week was that the cancer had not spread to the optic nerve or gone beyond the eyes.
However, two days after the EUA, Grace’s left eye began to swell. It was a Sunday so Kanteera and Erwin took Grace to Pediatric urgent care. The doctor said it looked like Corneal Abrasion which was the scratch in the eye so they should not worry. However, the next day Grace’s left eye became so swollen that she could no longer open her eye. It was the day that they had the first appointment with their oncologist in the morning and they all agreed to a plan to begin systemic chemotherapy as soon as possible. They then met with the Pediatric Ophthalmologist to check Grace’s left eye. The doctor immediately contacted Dr. Gombos and the diagnosis was either Bacterial cellulitis from infection or Aseptic cellulitis caused by the tumor. Grace was admitted to the hospital right away. She was given an antibiotic to try to reduce the swelling but it did not help. It was determined that her tumor had grown even larger in that short period of time and was now so large that it was blocking blood flow to the eye. Enucleation was now the only option.
Knowing that Grace would need time to recover after enucleation, they decided to administer one round of systemic chemotherapy before surgery in the hopes of shrinking the tumor in her right eye. She received this round of therapy and the very next day, Grace’s left eye was enucleated.
Kanteera and Erwin were overwhelmed. So much had happened with their sweet baby in such a short period of time. They were very worried about the tumor growing in her right eye. They wondered if systemic chemotherapy was the right course of treatment? Were there other options? They decided to get a second opinion and flew to New York to meet with Dr. David Abramson at Memorial Sloan-Kettering Cancer Center.
Dr. Abramson thoroughly examined Grace and told the family that the initial round of systemic chemotherapy had effectively reduced the size of the tumor in her right eye. However, it was still large and with the full retinal detachment, Grace had already lost 95% of her vision. He suggested attacking the tumor with a different type of chemotherapy, Intra Arterial Chemotherapy (IAC). Instead of treating the entire body, as with systemic, IAC targets the tumor directly in the eye. He suggested they begin this therapy right away and to have a round every month for the next three.
IAC proved to be very effective and her tumor was greatly reduced in size. Grace had her third round of IAC in November of 2023. Since then her tumor has remained stable. Her retina has reattached and she has regained a significant amount of vision. She has been monitored very closely in case there is any growth of the existing tumor or the development of any new tumors.
Grace is now 22 months old and thriving! She receives weekly therapy and has started to attend day care twice a week. She does have some scarring and her calcified tumor remains in the eye, but it has reduced in size enough that Kanteera says Grace’s vision is now quite good. She is happy and energetic and once again hitting all of her developmental milestones!
Looking back, they are able to see the Glow (leukocoria) in Grace’s photos pre-diagnosis. However, this was not what alerted them to her condition. They hope that by sharing their journey they will encourage other parents to listen to their intuition that something may be “off” and express those concerns to their doctor. They know that her outcome could have been much different if more time had passed before her diagnosis.
Although there are still many concerns, Kanteera and Erwin feel so grateful and blessed by Grace’s outcome. Every month that goes by that Grace stays stable gives them more and more reassurance that this is all behind them. They are so very grateful for the teams of doctors that discovered and treated her disease. They look forward to a long, healthy and happy future for their sweet little warrior!
