My son was diagnosed with unilateral retinoblastoma on March 4th 2017 at the age of 8 months old after his daycare provider mentioned seeing a glow in his right eye. Xander (we call him Xan Man) began treatment immediately in Memphis Tennessee. He received topotecan, vincristine, and carboplatin chemotherapy as well as laser treatment. Xander’s body did not respond well to chemo, and he broke out from head to toe with oozing dry patches. He would scream and scratch relentlessly and it went on for months before anyone was able to help.
It was heart breaking, and terrifying trying to prevent infection and scarring.
He also suffered from severe neuropathy in his legs, so he wasn’t able to walk until he was almost two years old. He still receives therapy for his vision, speech and motor skills. Xander was able to keep his eye even though scarring from chemo caused vision loss in his affected eye.
However, we are thankful his tumor responded well to his treatment and we are blessed that he is doing so well right now.
He returns to St Judes in Memphis every 12 weeks for his EUA, and gets MRI’s every six months. It’s so hard to believe it’s almost been two years since this journey began. Last summer we began giving back to other RB families by sending fun packs to the kids, and their siblings. We call it “Xan Mail” and Xander enjoys going to the post office to mail packages to other kids like him!