Raines Simonsen, Hayes and Micah’s first child, was born on December 4, 2021. Living near family in Edenton, North Carolina, together the trio experienced all the typical joys and challenges of baby’s first year. With Raines’ birthday and holidays fast approaching the Simonsen’s looked forward to upcoming seasonal celebrations. Yet, during their festive preparations, these attentive parents noticed a mysterious white spot in Raines’ right eye. hours of internet research, the couple feared their discovery might be leukocoria, a rare condition that often signals a more serious health threat.
Following their instincts and online instructions for how to detect leukocoria, the Simonson’s used their mobile phones to take several photos of Raines; each image captured in dim lighting using the camera flash. Afterward, in picture after picture, the white spot was unmistakable.
Over Thanksgiving, they shared their concerns with Hayes’ parents who quickly helped to arrange an appointment with a family friend who is also a practicing optometrist. Just minutes into a routine exam of Raines’ eyes, the doctor turned to his assistant and said, “Call Duke.” From there, next steps were swift. Less than a week later, the Simonsens made their first three-hour trip to Duke Eye Center.
No Time Wasted
Only days before Raines’ first birthday, on December 1, 2022, the family met with ocular oncologist, Miguel Materin, MD. During this initial visit, Materin examined Raines’ eyes and discerned obvious abnormalities, diagnosing bilateral retinoblastoma; he immediately ordered MRI to rule out brain involvement. Fortunately, a cancelation resulted in the opportunity to perform a same-day MRI on Raines.
Retinoblastoma is a cancerous tumor that grows in the retina and is typically detected in the first 24 months of life. Once diagnosed, retinoblastoma is a highly treatable disease; in fact, it is estimated that more than 90% of diagnosed children in the U.S. can be cured.
With Raines’ condition confirmed, quick communication between Duke Eye Center and Duke Children’s resulted in the immediate formation of a robust care team to support Raines and his parents. The morning after Raines’ diagnosis, Materin, along with Julianne Rogers, Duke pediatric neuro-oncology nurse navigator and Sarah Davis, clinical social worker with Duke pediatric neuro- oncology, huddled with Hayes and Micah to get acquainted with their family dynamics and understand their unique needs to customize a care plan.
Rogers and Davis are key members of the Duke Children’s support team that walks alongside families whose children are undergoing intensive treatment. They play an instrumental role in the coordination of medical care and therapy schedules, while at the same time accessing and choreographing a wide range of essential external support services for families who suddenly find themselves managing unexpected logistics and expenses such as transportation, housing, and childcare.
“We were unprepared and in shock, coming to grips with Raines’ diagnosis,” shared Hayes Simonsen, Raines’ mother. “But the Duke Children’s care team embraced us.
With treatments scheduled to begin the following week, the Simonsens returned home to celebrate Raines’ first birthday and prepare for the journey ahead.
“Our emotions were all over the place, trying to enjoy his birthday, while fearing the unknown battle ahead of us,” said Micah, Raines’ father. “All we could think about was getting his treatment started.”
As is the case for every retinoblastoma patient, Raines’ treatment plan was tailored for his unique situation. Because he was diagnosed with bilateral retinoblastoma (tumors in both eyes), Raines initially received six rounds of intra-venous (systemic) chemotherapy. This traditional approach to cancer treatment began in December 2022.
Coordinated with the support of his nurse navigator and clinical social worker, every four weeks, Raines and his parents would make the three-hour trip to Durham and the Duke Children’s Valvano Day Hospital for two days of therapy. Each visit involved an eye exam under anesthesia, blood work and an audiogram before and after chemotherapy (due to a risk of hearing loss caused by chemotherapy). This battery of tests provided Raines’ care team with a thorough evaluation of his current condition and confirmed his readiness for treatment. In between these visits, while back at home, Raines would go weekly to a nearby lab to monitor his red and white blood cell counts and platelet levels.
Following his first six months of systemic chemotherapy, Raines’ clinical team assembled to evaluate his progress and identify next steps. Materin, in collaboration with neuro-oncologist, Daniel Landi, MD, and neurosurgeon, Erik Hauck, MD, recommended Raines undergo additional treatment in his right eye because the tumor positioned within it did not appear to be under control and had not sufficiently regressed. The proposed treatment, intra-arterial chemotherapy, would deliver cancer-fighting medicine directly into the ophthalmic artery, the eye’s main blood vessel.
“Intra-arterial chemotherapy is an innovative and effective treatment for young patients, like Raines, who are battling retinoblastoma,” remarked Hauck. “By partnering with Drs. Materin and Landi — each of us bringing our unique specialties to bear — we are maximizing the help we can give our patients. It’s an incredible privilege and is enabling us to move medicine forward.”
Gently administered by Hauck, the intra-arterial chemotherapy (IAC) procedure was completed by inserting a small catheter into the right femoral artery. With Raines sedated under general anesthesia, the catheter was methodically guided to precisely dispense the cancer-fighting chemotherapy. In total, each IAC procedure lasted less than two hours. It is common for young patients to undergo three rounds of IAC and this was true in Raines’ case; he received treatments in May, July, and August 2023.
Step-by-step, during each intricate procedure, Raines benefitted from the dedicated attention of Duke Children’s highly skilled pediatric anesthesia team, including preoperative and post anesthesia care unit (PACU) nurses. Together, the cross-functional team of Duke caregivers who journeyed with Simonsens, helped enable their family to navigate difficult and uncharted territory.
Hope for Today, and Tomorrow
Though confronted with every parent’s greatest fear, the Simonsens acted quickly on behalf of Raines. Throughout his course of treatment, with the support of the experienced and compassionate Duke Children’s care team, close family and friends and their generous local community, Hayes and Micah have remained optimistic about Raines’ future. In fact, since his diagnosis, the family has welcomed a new baby girl, Reid, to their crew. Due to the rare nature of retinoblastoma, Reid has already been evaluated by Materin and to-date, she has tested negative for the disease.
Presently, Raines’ tumors are regressed and under control. He spends his days playing, exploring, and discovering all that the world around him has to offer. His second birthday is fast approaching. Raines, like all children treated for retinoblastoma will be monitored monthly until age four, after which he will undergo eye exams every six months throughout adolescence.
“As young parents, the Simonsens were faced with the unexpected – unwanted – news of their child having cancer in both eyes, it’s been a roller coaster of a year for them,” said Materin. “But every step of the way, they have been supportive of our cross-functional team and worked with us to provide the best care and treatment plan possible for Raines.”