In January, we took our sweet 2-year-old son, Kayden, to the eye doctor for what we thought was a minor issue — a slight outward turn of his right eye (strabismus). We expected to leave with advice on eye patching or glasses. Instead, our world turned upside down. The doctor was kind and chatty at first... but suddenly, everything changed. He grew quiet, solemn. We could feel the shift. He told us we needed to go to Wills Eye Hospital in Philadelphia — but gave little more information. When we pressed for more, he quietly said, “It could be a tumor.” We left with a handful of stickers… and broken hearts.

That night, my phone lit up — alerts from the patient portal. Email. Text. Notification. The report included words that shattered us: “Retinoblastoma suspected.” I cried for hours. In the days that followed, we were flooded with calls — sometimes eight or more a day — from pediatric oncology teams, hospital schedulers, insurance companies, and tour coordinators from CHOP. It was overwhelming. We were scared and felt completely lost. Everything felt so cookie cutter, so routine. It felt like the only doctor communicating with us, advocating for us and making us feel human was our pediatrician, Dr. Meredith Hellstern.

A week and a half later, we traveled to Philadelphia and were thankfully welcomed into the Ronald McDonald House of Southern New Jersey, a home-away-from-home we didn’t know we’d need but we were so grateful for. Kayden underwent multiple tests: an MRI, an ultrasound, and several eye exams, including one under anesthesia. We were then brought into a room for the news that changed everything: Kayden did NOT have retinoblastoma. Instead, he was diagnosed with Coats’ Disease and he also has a benign tumor in the affected eye. That same day, Kayden began his treatment with the incredible Dr. Carol Shields. So far, he’s received two treatments: one cryotherapy session and one combined cryo/laser procedure. He still has a long road ahead, and we have a lot of questions, but he’s stable, and we finally have a clear diagnosis and a strong care team.

Kayden has started swim lessons and horseback riding, soccer this summer, and is very passionate about dinosaurs. It is our hope that as the treatment develops for this disease more parents will be communicated with in a way that gives them hope as opposed to never-ending fear. We pray that our son, and others like him, will connect with one another and share their journey to help others to feel more supported, more educated and ultimately more hopeful.

The journey to a Coats’ Disease diagnosis was terrifying. For more than a week, we lived in limbo, convinced our baby had cancer based on limited information but repeated statements. We were overwhelmed, confused, and navigating surprise calls from oncology departments. We wouldn’t wish that fear on anyone. We’re sharing this now for two reasons: to raise awareness about Coats’ Disease — and to remind other parents to trust their instincts, advocate fiercely, and hold on to hope. Our boy is strong, and so are we. 💛