Know the Glow has recently had the honor of speaking with Kirsten Ramos. Kirsten shared her family’s journey to find the diagnosis for their infant son, Lucas.
Back in May of 2022, Kirsten began noticing a strange glow in Lucas’ eye. The glow would become apparent as she lay Lucas down in his bed at night. Kirsten could see a sudden flash in Lucas’ eye only in certain angles and light. Ironically, Kirsten who works in pediatrics and knew this flash was unique and unusual. She was concerned it could be signaling a visual condition, as it reminded her of a TikTok video she had seen of a child with a similar glow. Determined to find answers, Kirsten brought a photo of the glow she was seeing in Lucas’ eye into the pediatric office where she worked (Waianae Coast Comprehensive Health Center) to have a pediatrician, Dr. Constance S. Nesbitt MD review it, she recommended that she show her son’s pediatrician immediately.
The pediatrician who saw the photograph was concerned and went next door to the pediatric ophthalmologist’s office, they decided Lucas should be more carefully examined. The very next day Lucas was seen by Dr. David Young from Kapiolani Medical Center for Women & Children Hospital. While remaining very hopeful and positive, Dr. Young was determined to discover the cause of Lucas’ glow. Dr. Young explained that this symptom could be indicating any one of more than a dozen conditions. He scheduled an MRI and CT scan within a week, moving mountains with scheduling and calendaring to help have Lucas fast tracked for examination.
After the MRI and CT, Dr. Young gently shared the news that what they were seeing was consistent with Retinoblastoma.
These words were the beginning of what became a roller coaster journey for Lucas, Kirsten, her mother (who ironically is herself legally blind from another condition) & her family. Living in Hawaii, they were not able to find the care they needed on the islands. They needed to travel to California to see Dr. Jesse Berry and Dr. Rima Jubran at CHLA in Los Angeles. Dr. Young was quick to refer Lucas to his colleagues at CHLA in the hopes that their experience in working with so many children with RB would give Lucas the best chance for success.
Lucas’ MRI test was done on June 23rd. Within four whirlwind days Kirsten, her mother, and Lucas found themselves in California at CHLA meeting Dr. Berry and her team. Insurance, logistics, and work-leave hurdles made managing the process challenging but Kirsten worked through it all and was able to provide Lucas the care he urgently needed. As Dr. Berry explained, Lucas’ tumor was initially graded “Dr. Murphree Grade D” and “Dr. Shields Grade E”. Due to the advanced nature of the tumor, six rounds of systemic chemotherapy were recommended with possible laser & cryotherapy treatments to follow.
It is still not certain how much vision Lucas may have remaining after chemotherapy is complete. However, Kirsten has total confidence in Dr. Berry and Dr. Jubran. Just knowing he is under their watchful eye is a huge comfort. An added comfort is the support from other mothers that Kirsten has reached through the Facebook RB Parent groups. She is also grateful for the support given to her by Know the Glow. We at KTG were happy to connect Kirsten with another KTG mom who has recently traveled down a similar road with her child in LA with Dr. Berry. The two mothers have not only spoken via phone but hope to meet in person when Kirsten next returns to Los Angeles.
While it’s still nearly impossible for her to believe all that she’s been through, Kirsten feels so lucky to have such a wonderful support system around her, to have such incredible doctors and to have a son who is such a joy even on his toughest days.
Lucas is continuing to show marked improvement with each round of chemotherapy and Kirsten is hopeful that the final rounds of chemotherapy will go smoothly so that soon she will have this chapter of Lucas’ life behind him.
The Hawaii Children’s Cancer Foundation has also been a support to the family, Pinkyswear Foundation, H.U.G.S. (Helping, Understanding, & Group Support) helping Kirsten cover travel costs as they have been incurred. However, having two older children, she has found the ongoing financial challenges to be monumental. A GoFundMe (https://gofund.me/15ed543f) has been set up to help with the costs associated with the travel and transportation.
Kirsten knows how critical it was that she noticed and acted on Lucas’ glow. She hopes by sharing her journey that another mother or father will see Lucas’ photo and have the encouragement and confidence to bring their child in for evaluation. She is very aware of just how important recognition of this small sign can be.