Patient Spotlight: Noah Edgar

By Theresa Edwards Makrush

Family_0.JPGAt just 20 months old, Noah Edgar of Colchester, England, is a happy, curious, busy toddler playing at the beach. Passersby may think he is in Jacksonville, Florida, with his family for vacation. They would be surprised to discover Noah is here for cancer treatment.

Last December, Noah had an eye infection. His parents Gemma and Rob took him to the doctor. After the infection was healed his doctor detected a tumor in the retina. 

Retinoblastoma is an uncommon pediatric cancer of the eye. It begins in the retina, ocular tissue that lines the back of the eye, senses light and sends images to the brain. In the United States, retinoblastoma accounts for about 3 percent of cancers in children younger than 15 years – about 4 cases per million. Retinoblastoma is sometimes caused by an inherited gene mutation; when it occurs in both eyes, it is always the result of a gene mutation. It most often occurs before the age of two, with 95 percent of retinoblastoma diagnosed before the age of five. The tumor may affect one eye (about 75 percent of cases), or both eyes (25 percent of cases). The prognosis for retinoblastoma is good if the tumor is identified early. More than 90 percent of retinoblastomas that do not spread beyond the eye will be cured.

In Noah’s case, the tumor had become so large that it had detached his retina causing him to lose sight in the affected eye. It was decided his best chance for cure was to remove his eye surgically and follow it up with proton therapy and chemotherapy.

This news was a jolt to the family. “It’s the worst thing as a parent to hear that your child has cancer,” said Noah’s dad Rob. But the Edgars said they are confident in Noah’s prognosis after having surgery by the top specialists in England and now proton therapy at UF Health Proton Therapy Institute.

Proton therapy will deliver targeted radiation to the area where the tumor was removed in order to reduce the chance for recurrence. Because proton therapy does not penetrate beyond the treatment area, there is little chance of unnecessary radiation exposure to Noah’s remaining eye or brain allowing him to retain his sight and IQ.

Rob said that people should be aware of symptoms of retinoblastoma. If one of your child’s eyes look unusual in a flash photograph, it could indicate a tumor is present in the eye that is not reflecting light. The earlier a tumor is detected, the better. He recommends taking your child to an optician on a regular basis to have their eyes checked.

While they are in Florida, the Edgars are making the most of every day. It’s an attitude the couple chose when Gemma was treated for a brain tumor just months after Noah was born. “It’s hard, but we both have a positive outlook,” she said. Rob added, “Yes. There have been dark days and sad days. But we want to live for every day. Our other son Dylan is four years old and we try to carry on as normal.”

Most days after Noah’s proton therapy session, the family plays at the beach or the pool. One weekend they went to an amusement park in Orlando and to the Silver Springs State Park in Ocala, Florida. They have plans to visit Savannah, Georgia. “We try to have fun whenever we’re not in hospital,” said Gemma.

About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.


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