Nolan Desmond’s Glow Story

Posted on 2019-08-09

Nolan was born in February 2016, a very smiley, active, and happy baby. However, when he was just a few months old, Nolan’s parents, Matt and Brittany, began to notice that his eyes would occasionally roll backwards. He would also cry out as if he was in discomfort when this happened. Concerned, Matt and Brittany took him to see his doctor who performed several tests. However, nothing unusual was discovered and they left the appointment without an explanation for the symptoms they were noticing. It was not until Nolan’s 6-month routine check-up that the pediatrician noticed something was off with Nolan’s eye. The doctor detected a white reflection in his pupil, a possible indicator of cancer. The pediatrician referred them to eye specialist, Dr. Berman, at Maine Eye Center, who suspected the presence of tumors in his eyes. However, a second opinion was needed. They were then referred to Massachusetts Eye and Ear Infirmary to see Dr. Mukai. At this appointment, Dr. Mukai confirmed the presence of tumors and diagnosed Nolan with Bilateral Retinoblastoma.

Immediately following Nolan’s diagnosis, they began treatment with Dr. Mukai. Nolan underwent six rounds of systemic chemotherapy. Their stay in Boston was extended five more weeks as Nolan underwent 25 cycles of proton beam radiation to ensure the cancer would be gone. Following this intense round of treatment, Nolan was responding very well, and things were looking positive. His port was removed in April and the family was finally seeing the results they had been hoping for.

Unfortunately, at Nolan’s July check-up they received the news that the cancer was back and that it was very aggressive. Nolan and his parents immediately returned to Boston’s Children Hospital where he began intra-arterial chemo. This direct form of chemotherapy was proving to be successful, but ultimately caused Nolan to lose his vision after a couple months of treatment in September 2017. Disheartened, but unwilling to give up, Matt and Brittany agreed to one more round of chemotherapy to ensure the cancer was no longer in their son’s body. For months Nolan was stable, but during a check-up in July 2018, they received the news that the cancer was back in Nolan’s left eye. The doctors informed Nolan’s parents that the smartest decision would be to remove his left eye. On August 1, 2018 Nolan’s eye was removed. They were disheartened, but after this enucleation they were informed that there were no more cancer cells in Nolan’s body!

Nolan is a strong and brave little boy. He fought for two years and beat cancer! He is now 11 months cancer free and living a life full of adventures! Nolan loves going to the beach and playing in the waves with his mom and visiting all of Maine’s waterfalls with his dad. The feeling of the crashing waves and running waterfall bring him so much joy! While they continue to adjust to the life of Nolan not seeing, they haven’t let it stop Nolan from living and learning as any other three-year-old boy. He recently started learning braille and how to play the piano. In his dad’s words, “He is a genius!”.

Matt says that they never noticed the Glow until it was pointed out to them by the doctor. Looking back at photos months prior to Nolan’s diagnosis, they are now able to recognize the presence of the Glow, or leukocoria, in several pictures. They are grateful for the doctors that aided them in getting Nolan the help he needed. While they went through years of fighting and frequent hospital stays, Matt says that they wouldn’t be the people they are today if it wasn’t for their experience. Matt and Brittany want to continue to spread awareness of the Glow so that other families will recognize this potential sign as early as possible.

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