Diagnosis: Retinoblastoma
In 2006, Marco celebrated his 2nd birthday surrounded by family and friends. Cameras began to flash as he sat in his highchair with a big piece of chocolate cake in front of him. Two of the family members celebrating with us that day were his uncle and aunt, who both happen to be optometrists. When Marco’s uncle looked at his digital photos, he immediately noticed a glow in Marco’s right eye. This glow appeared in not one, but several of the photos. Aware and concerned about what this could mean, he told Marco’s mother, Sue, to bring Marco in to his office the next day. Under examination, his uncle’s fears were confirmed. He saw a mass in Marco’s eye. He advised Sue to take Marco to Yale University Hospital to see a retinal specialist immediately.
The hospital specialist informed Sue he was 99 percent sure Marco had Retinoblastoma and sent the family to Memorial Sloan Kettering Cancer Center to meet with Dr. Abramson. Dr. Abramson confirmed the RB diagnosis. Marco had no vision in his right eye, and his retina was completely detached. Dr. Abramson discussed the treatment options with Sue and suggested a new option of intra-arterial chemotherapy. At that time, only one other child had been treated with IAC. The option was enucleating the eye. The family decided to try IAC before enucleation.
Marco went through six IAC treatments initially, along with radiation. At first things looked stable. Marco appeared all clear for about a year and a half. He then developed glaucoma that caused severe pain. Doctors tried to ease his discomfort with eye drops. Along with this condition, Sue noticed that Marco’s eye had begun to shrink. This was a result of having no vision in the right eye. After further consideration, doctors decided to remove his eye in June 2009. Marco was just shy of his 5th birthday.
Still adjusting to all that had happened to Marco, Sue was disappointed and shocked to learn that the pathology reports indicated that Marco still had active cells in his eye. They went back to Dr. Abramson at Sloan Kettering. They were told that there was 95 percent chance that all the cells were removed with the eye. However, there was still a 5 percent chance there were still some cells in his body. Based on the advice of Marco’s doctors, Sue decided to watch Marco carefully for six months before starting chemotherapy, as it would be very hard on him.
In January 2010, just two weeks shy of this six-month timeframe, Marco started to have pain in his leg. The pain was on and off, but Sue brought it up to Dr. Abramson and insisted on an X-ray. The X-ray did not reveal anything of concern. Sue’s intuition told her this pain was an indicator of something more and insisted on a MRI. The MRI showed a “massive tumor in bone marrow” of his tibia, or shinbone. Further testing showed that Retinoblastoma cells that were dormant in his system for one and a half years had spread from his eye to his leg. Marco’s family returned to Sloan Kettering.
Marco now had Metastatic RB. He was treated aggressively with chemotherapy for five months and received a stem cell transplant. Marco was inpatient for one and a half months at Sloan. His system was brought down to where he had zero immunities. Once discharged, Marco followed up with 21 radiation treatments to his tibia.
Since then, Marco has had many MRIs and biopsies that have all come back clear! He is now 12-years-old and in 7th grade. He has a yearly MRI of his leg, and yearly oncology for follow up. Marco is a fighter and a warrior. He has been through so much but has conquered all his obstacles. He is now thriving and doing great! Sue is so grateful that her brother and sister-in-law were aware of “the glow” so many years ago. She still has the photo that saved her son’s life. She is determined to share her story with as many as possible in hopes of saving another child with an undiscovered “glow.”
