In 1989, Erin D’Addio, my best friend in the entire world — my sister in arms — was diagnosed with a brain tumor. A routine vision screening at school determined she had decreased vision in her right eye. An MRI discovered she had Optic Nerve Meningioma and all they could do was wait and keep her under observation. In the meantime, we played, we went to dance class, we had crushes (and more crushes), we talked about what we wanted to be when we grew up (I changed my mind a thousand times, she always knew she was going to teach), we clogged the phone lines for hours, and had all the sleep-overs our mom’s would allow!
After totally losing vision in her right eye, she underwent a right frontal orbital craniotomy in February of 1995, in Miami, Florida. This surgery resulted in the complete removal of her right optic nerve. And in March of 1996, she had another craniotomy to remove a meningioma in the olfactory groove. This surgery also required the long trip to Miami, and left her with a loss of smell in the right nostril. As if high school wasn’t tough enough, try adding rounds of intensive steroids and brain surgery to the mix. What girl doesn’t love feeling like a giant balloon?! The swelling went down, the scars faded, and she went to prom in the dress of her dreams.
Every six months, and then eventually once a year, she continued to go for nerve wracking scans and tests. Though the process was always nauseating, her results came back clear until March of 2002. Sitting in class at the University of South Florida, the vision in her only seeing eye started to flicker. A new MRI revealed the spreading of the meningioma. It was growing into her left eye now, and could leave her with no sight and no smell. She was referred to radiation oncology at Shands Hospital in Gainesville, Florida, the closest facility with the proper equipment for treatment. She underwent radiation with IMRT twice a day for six weeks, living at the American Cancer Society’s HOPE Lodge during the week. Constantly nauseated, losing hair, away from her home, fearful that she would never graduate, she held out hope. She never gave up.
For the week I stayed with her at the HOPE Lodge, driving her to appointments and keeping her company, she continued to have the bright and bubbly personality she always had! She never let the darkness of her situation settle in for very long. We watched the entire VHS collection of Night of the Living Dead, laughed, and held on to every positive moment.
Six months after radiation was complete, her left eye completely regained vision. Not even the doctor’s expected this. It was miraculous! She went back to college and graduated with a Bachelor’s in Elementary Education, got married, owns a home, and has been the Ida S. Baker teacher of the year! For ten years, she has poured all of her love for children and learning into her work. She motivates others and works tirelessly to help families at the Children’s Cancer Center, One Voice Foundation, PUGS, and the American Brain Tumor Association access information and support that was unavailable when her journey began in 1989. She even makes angels and delivers them to the residents living in the HOPE Lodge. She has been fundraising for the imminent ABTA 5K walk as head of the logistics committee for the event, with the fourth highest-grossing team. This walk would have marked 12 years without a tumor.
Late Sunday night, her vision started to flicker once again. This week brought news of a new tumor in her left orbit, squeezing the life out of her only remaining seeing eye. Doctor’s opinions have varied from pseudo-tumor to radiation vasculitis to — the worst case scenario the return of the meningioma. If her left eye had received radiation during her previous treatment, she would not be able to receive any more treatment without going completely blind, which would be the result of surgery as well. While we waited for her old records to be pulled from 12 years of dust, the doctors advised her to get affairs in order. Prepare for a life without sight. Prepare to leave the only occupation she to which she has ever aspired.
We asked everyone we knew for hope. We held our breath. We waited.
Last night, she actually laughed, “Would you have ever thought we would have been so happy to hear I could have radiation again?!” Through the lumps in our throats, half crazed from worry and what-ifs, we all cheered as we got the news that she could receive more treatment to her left eye. She will begin an arduous six weeks of treatment, twice a day, hundreds of miles from her home, friends, and family. As scary and difficult as the outlook may seem, she was actually thrilled to learn she had options. She has hope.
Please share her story with anyone you know who is facing a terrifying diagnosis. Hope is real. Hope continues to be catalyst for miracles in Erin’s life, and it can be in theirs too.
If you would like to help us support Erin, who is also one of the contributors here at the WLBPA, we would be forever grateful. May is Brain Tumor Awareness Month. Please visit the American Brain Tumor Association to learn more about the warning signs.