Casey Cares

The family later learned about Augie’s diagnosis of bilateral retinoblastoma when he was 5 months old.

Katie states, “At 2 months of age, I had some concerns that Augie tended to turn his head to look more to the left than to the right and that he wasn’t seeing us clearly. He would give us this huge smile when we held him up close to our faces, but would not react to our facial expressions from a few feet away. The pediatrician felt like he was still young and many of these observations could be his eyes still developing, but they would check vision at 6 months of age.”

She continues, “When he was 5 months old, he woke up with slight nystagmus (eyes shaking), and I took him the next day to see an ophthalmologist since he had a cancellation –which was one of many miracles! Dr. Doerr dilated Augie’s eyes, examined inside, and could tell right away what it was. He told me that there were growths in both eyes, larger in the right eye and he would need to be seen urgently either in Durham (2.5 hours away) or in Philadelphia (5+ hours away). I was by myself for the appointment with Augie that morning and the doctor gave me the exam room for the rest of the day while he hurried to make phone calls. He made sure that I did not leave the office until he had a plan for us.”

Katie recalls, “At this point, I had not even had a chance to call my husband or anyone else. I was in shock. I went home, put Augie down for a nap and called my husband, Bert. I made sure that he was in a place where he could talk because I told him the news “was not good.” He happened to be up on a ladder at the time, so it was fortunate that I warned him. We swept into action. Bert and I drove down to Duke Eye Center in Durham (the closest of the 2 specialty centers) that evening and the very next day it was confirmed that he had retinoblastoma. They also did genetic testing and confirmed that he had a spontaneous mutation of the RB1 gene, meaning that this would be harder to treat and he would be at risk for other cancers as well.”

From there, the first few days were a flurry of confusion and panic for Augie’s family. 

“At a moment’s notice we had to leave our other 3 children at home with my parents and had no knowledge of what would happen, how long we would be gone, how much it would cost, and what his prognosis would be. We signed pages of consent forms for dangerous procedures because we had no other choice or no time to investigate other options. After 3 rounds of intra-arterial chemotherapy by Dr. Hauck and Dr. Landi and laser treatment over 3 months at Duke with Dr. Materin, the options were running out and enucleation (removing the eye(s)) or radioactive plaque were the next plans on the table, particularly because the tumors in the right eye were not getting small enough to see if the optic nerve was clear. The optic nerve is the highway to the brain, and if cancer leaves the eye it is a much more devastating prognosis,” Katie says.

While it was hard for Katie to “leave the wonderful team that saved Augie’s life initially, but without a clear path forward in treatment we decided to transfer to Children’s Hospital of Philadelphia under the care of Dr. Leahey and Dr. Shields at Wills Eye Hospital, where there might be more options we hadn’t considered. They determined that the tumors were holding stable but that Augie should complete 6 rounds of chemotherapy over 6 months to make sure that any cancer that escaped the eye would be stopped in its tracks. Augie ended treatment in February 2023 in Philadelphia at 14 months of age.”