Conor’s Story

Posted on 2017-12-08

Time and again we hear how “motherly intuition” led families to diagnosis. Once again, this is the case in baby Conor’s story. Conor was just seven months old, October 2016, the first time his mother Julie realized something may be wrong. Conor looked at her and for just an instant she saw a Glow in his left eye. It happened so quickly that Julie quieted the voice inside her by telling herself she must have just been mistaken. Over the next few months Conor started to tilt his head to one side. Again, Julie dismissed this sign as a little quirk he was developing while learning his balance and taking his first steps. She told herself, all children have different odd behaviors when figuring out how to walk. She was further comforted when he checked out fine at his well visit, December 2016.

 

However, just weeks later, Julie noticed Conor’s eye was wondering a bit when he was sleepy or upset. He had also stopped making eye contact with his left eye while nursing. This sign ignited a spark inside her that could not be put out.  She knew there must be a reason for this behavior. She tried to have Conor seen by the only pediatric ophthalmologist in her town, but it would be six months until he could be examined. Determined to discover what was happening with her son, Julie made an appointment with her optometrist for the next day. It was just moments after his eyes were dilated at this appointment that Julie and Eric were told there was a mass in Conor’s left eye. With limited facilities in her small town, Julie and Eric decided to take Conor to MD Anderson in Houston, where they had family to support them. Once at MD Anderson, they performed an exam under anesthesia to determine what the mass was that was seen in the optometrist office. It was after this exam that they were informed that little Conor not only had two masses in his left eye, but he also had five tumors in his right eye. He was diagnosed with bilateral retinoblastoma. Both eyes were grade D. His retinas were fully detached. They were given the option of systemic or intra-arterial chemotherapy. After weighing their options, they decided to try systemic chemotherapy and started treatment that following Monday evening. 

 

After the first round of chemotherapy was given, Julie started to further research the options available. Both parents, witnessing how systemic chemo was devastating Conor, felt that more could be done. They decided to travel to Sloan Kettering in New York to meet with Dr. Abramson for a second opinion. Dr. Abramson advised they treat Conor with intra-arterial chemotherapy the very next day. Conor has now had three rounds of IAC. He was treated co-currently with laser and IAC. He developed a small new tumor in his left eye, Sept 2017, that was treated with laser. Since April, the existing tumors have not changed how they present in the eyes; Conor has had no new growth. Julie, Eric and Conor travel to New York every month for an exam under anesthesia to make sure there is nothing new to address. Julie says that for now they are taking it month to month. Conor is now 21 months old and has met all of his developmental milestones. Looking back now, Julie can see the Glow in Conor’s photos up to four months prior to his diagnosis. She never knew what the Glow was until after he was diagnosed. She wishes she had known what this significant indicator meant. Julie is very glad that she listened to her inner voice and got Conor the treatment he needed. She wants to share her story to encourage parents to pay attention to the small signs, including the Glow, that may be an indicator of something much more.