Our daughter’s glow was noticed when she was five months old. We noticed it in person only when light hit her eye at a certain angle. We were then able to see it in pictures. We took her in to see her regular pediatrician who was not able to recreate it in his office but who referred us on for further testing. Her bilateral retinoblastoma diagnosis was later confirmed by two ophthalmologists after a series of appointments a week later.
She went through four rounds of systemic chemotherapy in our hometown in Wisconsin which effectively shrunk the largest tumor in the right eye. A few weeks later the tumor started to regrow and seeding was noted. Thankfully, her left eye has remained stable. Our ophthalmologist then referred us to a retinoblastoma specialist out of state. Here, she went through 3 rounds of intra arterial chemotherapy to her right eye.
She has had one sedated eye exam since completing this chemotherapy and her seeding remains stable and the main tumor remains calcified. We will be traveling once a month to visit with Dr. Abramson at Memorial Sloan Kettering in New York for her care for the foreseeable future.
We are grateful we caught this early and remain hopeful that we can save her vision and her life. Although she has gone through so much in her first year of life, she doesn’t let it slow her down. Hana is the most resilient little fighter and will continue to beat this disease!