Olivia’s Story

Posted on 2016-04-13

In March 2012, the Gregg’s lives changed forever when Nara Gregg, Olivia’s mother, received the terrifying news that her daughter, Olivia Gregg, had Retinoblastoma (cancer of the eye).  Her life since then has been a whirlwind of hospital appointments, ER visits, chemotherapy, blood and platelet transfusions, anesthesia and operating rooms. Nara’s unwavering love for her daughter has given her not only the fortitude to fight Retinoblastoma but the strength to become one of the biggest advocates in educating other families on how to detect and treat this potentially fatal disease.

When Olivia was 17 months old, Nara noticed that one of Olivia’s knees had been swollen for an extended period of time.  Finding this unusual and being concerned for her daughters’ health, Nara immediately took Olivia to the doctor to be examined. To her mother’s surprise, Olivia was diagnosed with Juvenile Arthritis. Since inflammation of the iris can be a common symptom associated with this type of arthritis, Olivia was then referred to a retinal specialist.  After Olivia’s eyes were dilated, the retinal specialist discovered that Olivia had a detached retina.  The Gregg’s were then referred to Dr. Jonathan Kim, a world renowned doctor who specializes in Ocular Oncology, Oculoplastic and Orbital Surgery at The Vision Center at Children’s Hospital Los Angeles for further testing.  Olivia was seen a week later, and that was when Nara was given the heartbreaking news that her daughter had Stage Retinoblastoma; retinoblastoma is staged from A or early disease to E or very advanced disease wherein the eye can rarely be saved. Group D eyes are the most advanced eyes that are routinely treated.  Fortunately, the MRI and bone scans revealed that her cancer had not spread beyond the original tumor.

Once the Gregg’s received the cancer diagnosis, they were given two options: 1) to have Olivia’s right eye enucleated (removed) or 2) to go through extensive treatments to save her right eye.  Nara opted to fight the cancer and save Olivia’s eye through a series of chemotherapy and cryotherapy treatments (local use of freezing treatment to kill the tumor ) at Phoenix Children’s Hospital and laser treatments, which were performed every 4 weeks, at The Vision Center of Children’s Hospital Los Angeles.   Her doctors at Phoenix and Los Angeles closely monitored her progress and reported that the tumor was responding well to the chemotherapy and was slowly shrinking.  The Gregg’s also received the wonderful news that there was no trace of regrowth in the cancer.

Although Olivia did not respond well to the cryotherapy, she did respond well to the laser treatments and her vision continues to improve. Her vision in the affected (right) eye is currently 20/50.  Nara knew that she made the right decision not to have Olivia’s eye enucleated and to fight the cancer.   Unfortunately, Olivia has experienced some of chemotherapy’s terrible side effects, including cavities, a sensitive scalp and petechia (spots on the body caused by minor hemorrhages which heal after chemotehrapy) but the decision to save her eye has never been questioned.

It’s been a year since Olivia’s last chemotherapy treatment.  Dr. Kim believes Olivia’s laser treatment performed this past September will be her last.  The tumor appears to be completely treated and she will continue to have regular visits with Dr. Kim every 8 weeks.  In addition, Olivia will need to continue her checkups until the age of 5 when the retina stops developing.   When Olivia reaches the two-year mark after her last chemotherapy treatment, the Gregg’s will also find out if Olivia is cancer-free.  In the meantime, they are awaiting the results of her genetic testing.  Since Olivia has Unilateral Retinoblastoma, there is only a 15% chance that her cancer is germline which means that the mutation which caused the cancer is in all the cells of her body instead of just in the tumor.

Although Olivia’s diagnosis of Retinoblastoma would not have been discovered had it not been for her Juvenile Arthritis, Nara wishes they had known about “The Glow” and on how it can be an early indicator of 15 different severe diseases which affect vision in childhood. In Olivia’s case, a potentially fatal disease of Retinoblastoma that threatens not only her sight but her life Nara learned that “The Glow” can be found in a typical flash photograph.  Rather than the normal red reflection from a healthy retina, there is a golden white “Glow” that can be a sign of disease. Having learned this, Nara went back through old photographs and discovered pictures of Olivia at her first birthday with a strange white glow in her right eye. Questions immediately arose… “What if Olivia had not been diagnosed with Juvenile Arthritis and referred to a retinal specialist?”… “Would things have been different if she had taken Olivia in at the age of 12 months instead of 17 months?”… “Would she have discovered that her child had Retinoblastoma?” These are questions she hopes other families will never have to ask about their child.  It has now become Nara’s mission to inform and educate the general public about the dangers of “The Glow.”   The Greggs started posting Olivia’s photo on various social media outlets to alert others on the dangers of  ”The Glow” and have also created  informational flyers that they distribute to  various doctor offices and kids classes around their city.

Nara has joined HopeKids USA, an organization that provides a unique support community for families who have a child with cancer or another life-threatening medical condition.  The group has helped the Gregg’s to think about the future and maintain their positive attitude.  On October 19, 2013, Nara participated in the HopeWalk 2013 fundraiser.  Her goal was to donate her winnings to a blind couple who both have Retinoblastoma and are the parents of three young children, including one child afflicted with this same cancer.

Olivia’s story is one of encouragement and perseverance.  Simply stated, “Once you choose hope, anything is possible.”  This is the message that Nara and her family live by and would like to share with the world.