Emerson’s Glow Story

Diagnosis: Retinoblastoma

Rochelle doesn’t remember exactly when she first noticed a flash in her son, Emerson’s, eye.  It happened so infrequently, only occurring in certain lights and angles.  When it did happen, it was so quick, it was easy to shrug off as something she’d imagined.  She remembers thinking the flash could be a reflection off his light-colored eyes.  However, after a few occasions, Rochelle’s motherly instinct told her something wasn’t right.   

She mentioned what she was noticing to her husband, Nick.  They looked together at several angles but nothing looked abnormal.  Rochelle was concerned that maybe this could be a sign of a visual issue so she covered Emerson’s non-glowing eye to see if she noticed a change in his demeanor.  Emerson seemed unaffected, so her worry was calmed.  Rochelle decided to discuss the flash with her pediatrician at Emerson’s upcoming two year well check visit.

Just a few weeks later, Nick saw the glow.  He was playing cars on the floor with Emerson when all of a sudden there was a flash in his eye.  It was quick but it was exactly as Rochelle had described.  Nick immediately knew there was something wrong with Emerson’s eye.  He called Rochelle into the room and pulled out a flashlight.  After several attempts, they were able to find the exact angle where the flash would show.  Again, Rochelle tested Emerson’s sight by covering his non-glowing eye.  This time it was clear that once his affected eye was covered his vision was being blocked and it was causing their son distress.  

Full of worry, Rochelle and Nick searched “cat’s eye reflection” on the internet.  They were shocked to learn that this flash (or glow) could mean so many different visual conditions.  They learned that one of these conditions is Retinoblastoma, cancer of the eye.  They tried to remain positive but were frightened and determined to find answers. 

The very next day Rochelle brought Emerson to his. She performed a red eye reflex test in a dimly lit room after his eyes had been given the chance to adjust.  Her pediatrician was able to see the same white reflex that Rochelle and Nick had noticed.  Rochelle could tell by her expression that her doctor was very concerned.  Her pediatrician told her to pack a bag and head to the University of California – Davis Medical center in Sacramento, just a 45 minute trip from their home in Marysville, CA.  Rochelle knew that if they wanted her to bring a overnight bag, things must be very serious.

At UC Davis, they were met by Dr. Mary O’Hara.  During the initial examination, Dr. O’Hara was able to see a large mass in Emerson’s left eye.  She explained the few conditions that could be causing this.  It was not until the next day, after an exam under anesthesia, that they were finally told that Emerson did in fact have Retinoblastoma.  They were heartbroken.

The cancer was only located in Emerson’s left eye.  His right eye was cancer free.  There was one large tumor located very close to the optic nerve.  Emerson’s retina was detached and they did not believe that he had any vision in his eye.  Dr. O’Hara believed that the cancer was contained in the eye but did not want to wait to treat him.  Because of the size and risk, the recommended course of treatment was enucleation, removal of the eye.  Rochelle says that the decision to enucleate was difficult at first, but when facing the potential spread of cancer they quickly agreed to the surgery.   Nine days later Emerson’s eye and cancer was enucleated.

Many tests were done and the doctors felt confident that Emerson’s cancer was completely removed.  There was no need for further chemotherapy or radiation.  Genetic testing was completed and it was determined that Emerson does carry the RB1 gene, his cancer is genetic.  However, neither Rochelle or Nick carry the gene.  They believe he is the first in his family to carry this mutation.

At first Emerson went to UC Davis every three months for an MRI and complete eye exam.  Because of the genetic link, they want to keep alert to any possible reoccurrence of cancer. Upon reaching the age of five, these tests are only required every 6 months.  Emerson is now nine years old and has remained cancer free since the day of his enucleation!

Emerson is thriving!  He is an excellent fourth grade student who is at the top of his class academically.  He loves sports, especially baseball and soccer.  Emerson is very comfortable being different than the other kids.  He often decides not to wear his prosthetic, as it is just not that important to him.  Rochelle says that through it all, Emerson has been so strong and resilient.  We can’t wait to watch this warrior continue to soar!  

Rochelle says that looking back at photos, she can see the glow as early as four months of age.  She has struggled over the years with not recognizing the glow or knowing this sign that cancer was developing.  Rochelle is determined to spread awareness to as many people as possible.  She hopes that by doing so she will help another child find their glow and diagnosis.  Rochelle and Nick are very grateful that they did act on the glow that they saw and were able to get Emerson the care he needed before it spread beyond the eye.  There are well aware that his outcome could have been much different and they hope that through sharing their story they will encourage another parent out there to bring their child’s glow to the attention of doctors to save their child in time, too!