Ethan’s Story

Posted on 2017-03-29

Natalia Cornejo may know Retinoblastoma better than most anyone. She not only battled Retinoblastoma as a child, but faced the disease head on a second time after her son was given the very same diagnosis. Together they have fought and together they have won.

Natalia is not sure when her family was first made aware that she had Retinoblastoma. It is a memory very difficult for her parents to discuss with her. They were in Mexico at the time of her initial diagnosis and did not receive adequate care. Natalia was in extreme pain. Her parents were very worried they may lose her. Desperate for answers, they brought her to the United States. Immediately, the family was told that they needed to remove her eye to save her life. Natalia was just five months old.  

After her enucleation, Natalia started a regimen of chemotherapy and radiation. She received treatment every day, Monday through Friday, for six months. She fought a long and hard battle and eventually believed she beat the disease.

Natalia became a very healthy and active little girl. Despite the worries of her mother, Natalia was determined to live a normal life. She put her past behind her, grew up, found love and started a family of her own.

Natalia was thrilled to find out she was expecting but she could not help worrying that her baby may also inherit Retinoblastoma. She repeatedly asked her doctors if her worry was justified. Since she had three younger sisters who did not have any problems, nor any other family member with the disease, the doctors reassured her that her baby would be fine.

Quickly her concerns moved away from her baby and turned toward her own health. When Natalia was 32 weeks along she lay down to sleep like any other evening. During the night she suddenly began to convulse. Luckily, her husband and mother in law were home and witnessed the seizure. When Natalia came to, she had a headache but no recollection of what had happened.

Her husband however had witnessed the event and was very worried. He insisted Natalia visit the clinic she was going to for her prenatal care. The nurse at the clinic told her not to worry and that she should just rest. She believed it was an isolated occurrence. The nurse did tell her that it happened again she needed to go straight to the hospital since she was so close to her due date.

Four weeks later, again during her night sleep, Natalia had another seizure. She was rushed to the hospital by ambulance. They performed a CT scan at the hospital that discovered a mass on the left side of her brain – the same side where the original RB diagnosis was given. The RB cells had once again started to grow.

While in the hospital her blood pressure began to drop. Concern for both her health and the baby’s led her doctors to perform an emergency c-section.

Little Ethan was born, weighing just 5 lbs. 13.3 oz. He was premature, but otherwise perfectly healthy. Natalia was relieved. All her worries about the baby seemed to be put to rest.

Just two weeks after her delivery, Natalia had brain surgery to remove as much of the tumor as possible. This was followed by radiation to shrink what was left. Over time, Natalia’s seizures stopped. Finally, it seemed, she was stable and life could resume to normal.

However, when Ethan was just 5 months old, Natalia started to notice he was developing a lazy eye. Worried that this could be an early sign of Retinoblastoma, she brought it to his pediatrician’s attention. She was reassured that this was normal and not to worry. However, Natalia could not put her worries to rest. Her mother’s intuition told her there was something more going on. When Ethan developed a cold at 7 months, Natalia took him to the doctor and during the appointment asked for his eye to be examined. She demanded a referral to an ophthalmologist. She was given a referral to Texas Children’s. Natalia was relieved as she knew she would finally get some answers.

Unfortunately, this referral was not taken seriously. Two months passed with no call from Texas Children’s. During this time, Natalia noticed Ethan’s eye not only wandering, but also trembling. At Ethan’s 9 month checkup, she asked the doctor why she had not been contacted for the referral visit. Her doctor checked and realized that she had forgot to add Natalia’s history and as a result the referral was not considered emergent. Natalia asked for her to please make another request. A few weeks later she received a phone call and set up an appointment. She would have to wait two more months, but was relieved that Ethan would finally be evaluated.

In February of 2015, when Ethan was one, he was examined by an ophthalmologist. His right eye did not react to light. The ophthalmologist immediately did an ultrasound of both eyes. Natalia was told he had no vision in that eye and her worst fears were confirmed. Ethan had a mass behind both eyes. He was diagnosed with Bilateral Retinoblastoma.

Ethan went through six months of systemic chemotherapy along with freezing method and laser treatments. By the end of his fifth cycle, the tumors stopped reacting to the therapy. They stopped systemic chemotherapy once the 6th cycle was completed and started intra-arterial chemotherapy directly to the right eye and continued laser and freezing method treatments on the left.

Despite the many rounds of chemotherapy to the right eye, they were not unable to stop the advancement of his cancer. The blood stopped flowing and his eye was no longer viable. The decision was made to enucleate the day after Thanksgiving 2015.

Since enucleation, Ethan has been doing very well. He received both freezing method and laser treatments to his left eye for a time after his surgery. His tumor has been stable since May of 2016 and hasn’t needed further treatment. Ethan needed therapy for delayed milestones. With this therapy he has completely caught up to his peers. Ethan is a very strong little guy that loves the playground, to play with his soccer ball, and to listen to music. He’s now 3 years old and will keep on breaking barriers.

Natalia and Ethan have a very strong, unbreakable bond. Together they have faced and conquered very difficult challenges. And together they will continue to thrive. Natalia is determined to spread awareness of the Glow and help other families discover their diagnosis as early as possible. Take a snap of your child with flash and if you notice a white or gold glow on more then one picture, contact an eye professional for better advice.

 

*This story was written by Natalia Cornejo