You’re an 11-year-old girl with serious belly pain and no one knows why. Your parents rush you to the emergency room, where you are stripped of your control and dignity and remain in that state for the next two months of your life. Protracted weeks of your family, as well as nice (and not-so-nice medical professionals) talking about you like you’re not in the room, worrying about you, ruminating over everything that goes into or out from your body. You can’t sleep because someone is always bustling around your bedside, or you worry that someone will be doing so soon enough — often to poke your belly, where it hurts the most. Or, you open your eyes, and a stranger is hovering over you with a needle.
This was the reality for sixth-grader Ana Dooley of Eddyville. In late August, Ana’s parents, Jackie and Jim Dooley, brought their daughter to an emergency clinic with a distended stomach, fever and serious pain. She went from the clinic to an eight-hour stint in the emergency room to needing a blood transfusion on the very first night of her 29 days in Westchester Medical Center. That’s where a rare tumor was discovered on her liver and in the lining of a portal vein. According to Ana’s mom, less than 25 people have ever been diagnosed with this exceptionally rare cancer, called an inflammatory myofibrobastic tumor, which, she added, has no specific origin. “It’s just totally random,” said Jackie.
Ana has an 8-year-old sister named Emily; she was born with a cleft-lip and palate for which she endured three reconstructive surgeries and a three-month recovery. According to mom, outgoing Emily was accustomed to the hospital lifestyle and adapted whereas introspective and more reserved Ana was not.
Liver functions tests were normal, says Ana’s mom. One side of her liver has the tumor, but there’s a lot of healthy liver tissue on the other, so she didn’t have any signs of jaundice either. “She looked healthy,” said Jackie. “She started losing weight, but we didn’t think it was a big deal. It was summer. But, she was pale, and even though we were using sunscreen and it was July, she was awfully pale.” The tumor, Jackie explained, was robbing her of her blood and nutrients, rendering Ana anemic and ultimately dropping her weight down to a scant 62 pounds. The tumor had filled her abdomen from the top of her liver to her groin, and was on both sides of her abdomen — so large, it was compressing her organs.
Thanks to the right Sloan-Kettering specialists, Ana is very likely to pull through this one. Taking the directive from her respected oncologists and specialists, they decided to keep Ana’s liver and go through a specific chemotherapy and steroid regime rather than going straight to the transplant list.
Jackie, an online marketer, said Ana’s prognosis is very good. The prednisone has knocked the tumor’s size back considerably, and she is able to eat again and has been regaining her weight.
While still hospitalized, Ana’s spirits had plummeted deep. Ana’s dad, Jim Dooley, said these days, Ana’s mood is picking up, now that she’s home. “Different days are different,” he said. “It’s obvious how bad everything is with Ana. August 25, when that happened, the world fell apart instantly. It was unbelievable.”
Dooley, a professional musician, described the diagnosis and disease experiences as “a big rollercoaster.” He said community support has been carrying the family through. “Her attitude and mood has gone up and down and has been to some dark places that most adults probably don’t even get to.”
Ana uses the best of what’s trending on her iPad for keeping in touch with her peeps. Now that Ana is home, she is able to communicate with her classmates and teachers at Stone Ridge’s High Meadow School via Skype, FaceTime, e-mail and Instagram. She will miss the entire school year, but through Skype and visiting tutors, Ana will be able to stay connected and up to date.
Ana’s days at home consist of school work, drawing and Skyping into her classrooms. She likes to felt, and word search puzzles too. Figure skating and singing also rank on her list as well.