Strangers often tell Christine and Bryan that their daughter Murphy has such big, beautiful eyes. What they don’t know is that one of her eyes is not real. “We just want to say, ‘You have no idea!’, but we just smile and say, ‘thank you!’”
When Murphy was five months old, Christine noticed that her daughter’s right pupil looked a bit iridescent. As a neurological nurse, she knew what to do to test a patient’s eyesight: she covered her daughter’s right eye to no effect. But when she covered the left eye, “Murphy lost her mind.”
Christine called her local pediatrician and was seen that afternoon. When a crowd of staff started to gather around Murphy during the exam, Christine knew something was wrong. “I’m a nurse. When there’s an odd diagnosis, everyone wants to observe the patient. I knew from experience that something wasn’t right.”
Murphy’s pediatrician scheduled an appointment for them two hours later at Boston Children’s Hospital’s Department of Ophthalmology. Ophthalmologist and surgeon Ankoor Shah, MD, PhD, examined Murphy and asked Christine and Bryan to sit down. They refused.
‘Murphy has cancer.’
Shah explained to Christine and Bryan that their happy, beautiful baby girl had retinoblastoma–a rare cancerous tumor of the eye. “We were crushed,” Christine recalls. “Cancer is never good, but she was just so young. Our world fell apart.”
Shah reassured the couple that retinoblastoma is largely curable and asked them to return in the morning for a full eye exam. They don’t remember much of that night. They read. They called their families. Shah called to check in on them. “We tried to focus on the fact that it was over 90 percent curable, but honestly we didn’t sleep a wink that night.”
The eye exam confirmed that the tumor had caused blindness in Murphy’s right eye, which was why she’d been so frustrated when her mom covered up her seeing eye. An MRI suggested that the tumor was contained within the eye. Shah explained that with no vision to preserve, there was no sense in using chemotherapy or radiation. “The best treatment option was enucleation–an operation to remove the eye and replace it with an orbital implant to encourage regular bone socket growth. Remove the eye, remove the cancer.”
“Bring her back. Please.”
Shah talked through the short term as well as the long term with Christine and Bryan. “We thought ok, if he says he can cure this, what about down the road? What will she have to deal with? He said, ‘Murphy is going to prom and she is going to look beautiful on her wedding day’. We gave him the go-ahead.”
Just a week after Murphy’s first appointment with the pediatrician, Shah performed the enucleation procedure. Murphy went willingly into surgery with her signature smile, but that didn’t take away her parents’ anxiety. “As she left for surgery, I thought, she’s the most important thing to me, bring her back. Please. I need her back.”
When surgery was over, Christine and Bryan were immediately able to reunite with Murphy and talk to Shah, who said that he felt the cancer had not spread out of the eye, but that a pathologic evaluation would confirm that in the next two weeks. He also explained that retinoblastoma can either be inherited or sporadic, and he had sent blood and tumor tissue from the enucleated eye for genetic testing. If inherited, it almost always appears in the other eye, and the genetic testing takes eight weeks.
Just hours after surgery, Murphy was home, uncomfortable from the anesthesia but with only Tylenol needed to ease her pain. When Murphy woke up at 4 a.m., Christine looked in the mirror with her daughter. Murphy saw her reflection – huge bandage and all – and smiled right back at herself.
Christine ran to wake up Bryan, “She’s smiling! She’s smiling! She’s fine!” Their beautiful, happy Murphy was back.
“Murphy has never looked back. She’s been fine ever since that night.” Six weeks after surgery, Murphy was fitted for a prosthetic eye. Jahrling Ocular Prosthetics hand painted the eye in person to match Murphy’s sclera, pupil, eye color and blood vessels. Murphy’s comfortable with her prosthesis, which fits under her eyelids. Because of the paint job and the fact that it has a bit of movement, no one ever notices that it’s not real. Christine removes it once a month for cleaning, but otherwise it stays in and does not limit Murphy. The day before Thanksgiving, Shah called to say that Murphy’s genetic testing showed that the retinoblastoma was a sporadic mutation and likely localized to the eye that had been removed.
“Cancer has changed us.”
Reflecting on the past six months, Christine says she feels so lucky and will never forget that her daughter became a cancer survivor at six months, “Cancer has changed us. We don’t sweat the small stuff anymore. But cancer has not changed Murphy. She continues to be the same little munchkin running around emptying Tupperware everywhere and trying to remove plastic socket covers. Murphy has never missed a beat and has taught us that there is always a reason to smile.”
To honor that smile, Murphy’s aunt Britt is running the 2015 Boston Marathon with the Boston Children’s Miles for Miracles team. Britt says, “I am running to honor Murphy, who means everything to my family and me. She is an inspiration to us all.”