Melissa Kearns and her husband live in New York and were beyond excited to find themselves pregnant after spending five years struggling to have a child. Jude was born in April of 2021 and was a beautiful bouncing baby boy but not long after he was born he began having mysterious rashes and high high fevers repetitively. Melissa sensed something was wrong but multiple trips to her pediatrician brought no answers. During one trip when Jude was four months of age she asked the doctor to look at his eyes as Melissa had noticed a “white spot” in his pupil during a bath. No one else in her family had seen it and the pediatrician after looking casually at her son’s eyes told her it was nothing to worry about so she returned home. Still, a nagging concern would not go away. An additional concern emerged when young Jude’s eye began deviating and another pediatrician in the practice listened patiently during a return visit but still brushed off the symptoms as infant’s eyes often wander and again no red reflex test was performed.
At the end of October the holidays were approaching and the family was preparing for their first holiday with six month old Jude. In anticipation of the holiday, Christmas pictures were taken and in flash photos suddenly Jude’s white glow was visible to more than just Melissa.
Melissa had searched enough online to know that finding the glow could be an indicator of retinoblastoma and now she shared the information she’d found online with her husband who was instantly equally concerned.
A request for a referral for a pediatric ophthalmologist led to a delayed appointment that would follow Thanksgiving week. Unwilling to wait due to her now persistent concerns that the glow she was seeing required immediate attention she used the week before Thanksgiving to reach out to multiple ophthalmologists in the region. One call was answered and the offer to send photos through the portal was suggested. Seeing the photos Dr. Janhavi Shirali from Stony Brook Ophthalmology heeded the call and asked the family to bring Jude in “immediately”. Melissa left work and made her way to Stony Brook where she was met by Dr. Shirali who examined Jude. It was clear that Dr. Shirali was concerned. While she could not formally diagnose Jude, she reassured Melissa that she was in the right place and immediately referred her to Dr. Abramson and his team at Memorial Sloan Kettering.
Melissa called her husband who drove to meet her from his work in the Hamptons and they brought Jude to Memorial Sloan Kettering for evaluation and diagnostic tests.
Dr. Abramson’s assessment of Jude’s case was swift and pointed. Telling the family that due to the size of the tumor in Jude’s eye they had exactly three options: A) remove Jude’s eye or he dies. B) Remove Jude’s eye or he dies, or C) Remove Jude’s eye or he dies. The situation was dire and there was no time to spare. The tumor was already Stage 4 and was growing like an Iceberg from the bottom up. It had begun seeding and was threatening the optic nerve and pineal gland. The family wasted no time, agreeing to schedule enucleation for the following week. Chemotherapy would be too strong to provide systemically, and it was too late for intra-arterial chemotherapy (IAC) and so the eye and endangered surrounding tissue was removed. Tests on the blood for contamination were performed and genetic testing was also done. The genetic testing showed that Jude does have the RB1 deletion but that his RB is sporadic but hereditary going forward. Scans confirmed that Jude’s left eye was unaffected and as the numbers went down the danger abated. Monitored very closely the family returned first every two weeks, then 3 and 4 week visits began. Now at age 3 Jude is seen every nine weeks as the team monitors him closely.
Melissa still struggles watching him go through repeated Exams Under Anesthesia (EUAs) but the repeated mantra of “Don’t look back” helps her steel herself for the procedures and is also a lesson in reviewing all that she’s been through.
Two years passed and Melissa and her husband were excited to be welcoming a second son. A gift from a friend highlighted the phrase “Love is spoken here, Joy is chosen here, and Grace is given here.” It perfectly described the family’s feelings of warmth, love, and divine intervention throughout all they’d endured.
Melissa’s second child, Jase, was born earlier this year and was named Jase which means “Healer” and his birth is also a bit of a miracle as Melissa’s uterus ruptured during delivery and it was an unbelievable turn of luck that both she and Jase survived the delivery. The phrase was even more meaningful after what the family has been through and with the miracle of her first finding the glow and the miracle of her second son’s delivery. She recognizes that she has been surrounded by Love, Joy, and Grace throughout it all.
Jude is a happy, thriving three year old doing so well and is a proud big brother!
Since Jude’s diagnosis the family has been very supportive of Sloan Kettering and its patients. Starting “Jude’s Jammies” after he became known for his crazy pajamas each visit, Melissa and her husband worked to donate over $1000 dollars to MSK Kids child life to purchase needs for other families, as well as over 300 pairs of pajamas to pediatric patients at Sloan Kettering. Bracelets and cards with Jude’s message was given out to the staff and patients to help spread joy. #JoyFromJude is an ongoing journey, and they continue to find ways to thank the team that rescued her and continue to watch over Jude with Love, Joy, and Grace.
