From patient to employee: Brain tumor survivor gives back

  • PHOTOS: SEBASTIAN STANKIEWICZ/BOSTON CHILDREN’S HOSPITAL

People often ask me why I work at Boston Children’s Hospital. How can I walk through the halls of the place where I had emergency surgery at 16 years old for a deadly brain tumor? I honestly don’t know how I couldn’t. I believe in giving back and celebrating the people who support you, as your family does, through the most difficult times of your life. After years of treatment at Boston Children’s, that’s what my doctors, nurses, psychologists and support staff have done for me. Now, they’re like my family.

It all started in 2001, when I was a freshman in high school and my wrist gave out during a cheerleading competition. Dr. Peter Waters, orthopedic surgeon-in-chief at Boston Children’s, diagnosed me with Kienbock’s disease, a rare condition that affects the blood supply to the wrist bone and can cause pain, swelling and stiffness. Dr. Waters recommended surgery to alleviate the pain. I was a bit overwhelmed by the diagnosis, but felt I could manage it.

Later that year, things got drastically worse. I started having black outs. I’d find myself somewhere, not knowing how I got there. I was afraid to tell anyone what was happening, but eventually my parents found out. I had an MRI at Boston Children’s and immediately after the test my parents and I were put in an exam room. Dr. Mark Proctor, neurosurgeon-in-chief, told us that I had a brain tumor the size of lemon pressing on my left temporal lobe, and without immediate surgery I would die.  It was February 9th, the day before my 16th birthday.

Eileen Roberta, who had a brain tumor, blows out candles on her birthday cake.
Eileen blows out candles on her 16th birthday (PHOTO: COURTESY OF THE ROBERTA FAMILY)

It’s hard to put what I felt into words. I just remember being shocked and watching my parents cry. My mother asked Dr. Proctor if the surgery could wait until after my birthday and he agreed.

Dr. Proctor was able to remove most of the tumor — a pleomorphic xanthroastrocytoma (PXA). Amazingly, the tumor was completely unrelated to Kienbock’s disease. A second surgery revealed the tumor was malignant. I underwent two years of chemotherapy and six weeks of extensive targeted radiation to the tumor. It wasn’t until 2006 that I was officially in remission.

My recovery was supported by a huge team at Dana Farber/Boston Children’s Cancer and Blood Disorders Center including Dr. Proctor; Dr. Nicole Ullrich, a child neurologist; Dr. Scott Pomeroy, neurologist-in-chief; Dr. Mark Kieran, hematologist/oncologist; Mary Ann Zimmerman, oncology nurse; and psychologist, Dr. Cori Liptak. My cancer and orthopedic teams always made it clear that my opinion mattered and that they cared about my comfort. They were the ones who motivated me to keep going. They never treated me like a ‘patient.’ Because of them I am a daughter, sister, wife, mother of twin boys and a friend to so many others.

Eileen Roberta, who was treated for a pleomorphic xanthroastrocytoma (PXA), holds her dog Fluffy.
Eileen after treatment, with her dog Fluffy (PHOTO: COURTESY OF THE ROBERTA FAMILY)

Their impact of my life extended beyond my treatment. Now, every day, I get to model their work ethic and compassion in my job. As a social worker in the Primary Care Center and Young Parents Program at Boston Children’s, our multidisciplinary team and I support our families in many different ways. Our families struggle with several psychosocial stressors, which may include behavioral health needs, financial difficulties, domestic violence, homelessness and housing issues, racial and ethical tensions, and community violence. I do for our families as my providers did for me — treat every person as an individual and partner with their families to identify attainable goals to improve their well-being. I’m able support them through terrible crises and make a difference in their lives because we work through their difficulties together. I’m a voice of support for many families and patients at Boston Childen’s and all of this was possible because of my care team.

My job affords me the opportunity to build relationships with families that often lasts many years, just like my relationship with my own providers. What started with my visit to Dr. Waters so long ago hasn’t ended. My reward is seeing my Boston Children’s family — maybe not every day — but many days. And I get the chance to thank them all over again for everything they’ve done for me.

About the author: Eileen Roberta, LICSW, is a social worker in Boston Children’s Primary Care Center. She supports the social and behavioral health of hundreds of families with diverse needs.

Learn more about the Dana Farber/Boston Children’s Cancer and Blood Disorders Center and Boston Children’s Orthopedic Center.