Katie Smercak, 13, and her mom, Lind Porcelli, dig out a photo of Katie’s first day of kindergarten. She was nearly bald in the picture, wearing a backpack nearly as big as she.
Katie had been diagnosed with leukemia in March at the age of 5, due to start school in September. After a month or two of feeling under the weather, Katie recalled, “I remember watching ‘Clifford’ and I was too tired to get dressed.”
She called to her mother for help, complaining that her bones hurt, her ribs ached. As her mother assessed all the bruising on her pale body, everything suddenly added up. The symptoms Katie been amassing lately – nose bleeds, soreness, exhaustion – pointed to leukemia. “I didn’t want to believe it, but I just knew,” Porcelli said. “The floor dropped out from under me. It was so overwhelming. She was in hospital a few days later.”
This family’s life seems to be divided between pre-leukemia and after. Katie’s father Ed Smercak, an Information Technology specialist in Manhattan, started shaving his head to make his daughter feel more comfortable with her hair loss, which he still does to this day. Porcelli, an exhibition designer, quit her job to care for her daughter and bring her to all the appointments and hospital stays at Westchester Medical Center’s oncology department she would have for the next two and half years. Big sister, Chloe Smercak, who for all accounts is a typical teen (applying to colleges, off to see her college boyfriend this evening), is perhaps closer to her younger sister because of this experience, and sensitive to a cause most other people her age don’t have to think about.
The whole family has become very involved in the . Katie’s grandmother and aunt, both of Westchester, were currently in San Francisco, serving as walking coach and running mentor respectively, for the Nike Women’s Marathon. Twice a year, the family spends a week at Maine’s Camp Sunshine, which they describe as something as magical place, a free respite for families dealing with children’s illnesses, and with, as Katie mentions, “dessert after every meal.” It once helped them to relax there, now they help others.
For Katie, there isn’t much memory from such a young age before the disease. It’s all she really knows. “I feel like my childhood started when I was diagnosed,” she said. Katie sits here now in her comfortable home, her hair very long, blonde, and wavy. She has braces on her teeth, which she reveals often as she is continually smiling. She seems a very sunny teen.
She doesn’t even really harbor resentment towards leukemia. “I don’t remember it being a bad experience,” Katie said, recounting so many bloodtests and pinpricks in the beginning, and unbelievable cravings from the steroids. “There would be a week of heavy medication that would make me angry and sooo hungry. I was eating bacon, macaroni and cheese, steak, and shrimp 24/7. Fatty salty stuff.” She still loves these foods.
Maintaining, as Porcelli said, “some degree of normalcy” during the long and intensive stage of treatment was important. They choose to send Katie to school, but for half days, with a good amount of days off altogether. The hospital was close, and they had many friends and family nearby, so Chloe was often able to play at other people’s houses.
But treatment in children can cause cognitive problems “that almost started immediately, especially when you’re starting to read,” Porcelli said, so Katie started going to a special private school, Windward in White Plains, considered the top school in the country for language-based learning disabilities. The goal was remediation and to get her ultimately back to public school.
This year is Katie’s first year back to public school since the third grade; she's in the eighth grade at Sleepy Hollow Middle School. In science class, she has had enough real life experience to correct the teacher. “We were learning about blood diseases,” she said, “and I said, ‘well, actually, it’s not really like that.” She is less sporty than musical, excelling in music and acting. She plays the piano, the trumpet, and sax, preferring “probably the trumpet.”
And Katie was recently one of three Westchester County students to be dubbed an official “Honored Heroes” for the 2011-2012 Schools & Youth Programs of the LLS. She speaks at races and other fundraisers, but can’t participate in them until she’s 15. “They [donors] can see directly who they’re helping," her mother said. "Here she is, right in front of you, someone who’s benefitted from the research. Real life motivation.”
Though Katie lists “law, marine biology, science” as future career options, leukemia will be a lifelong cause. “It’s here to say,” Porcelli said. “It stays with us.” To this day, every time Katie gets a, now normal, bruise, she has her mother confirm it’s “not a bad bruise.” There’s also been the huge financial impact; though they had insurance, the co-pays of constant treatment for years add up on the one salary the family was down to.
After several years of intensive treatment, there's the five-year window of being monitored and waiting. Once this five year remission is passed, “you are quote unquote cured,” Porcelli said. Though there have been many advances in childhood leukemia, there is still no real cure for the disease.
This is the first year Katie didn’t visit the oncologist at all; only a regular pediatrician for a regular check-up. “Part of me misses it in a strange way,” Katie said. It's a complicated loss, this ineffable feeling of being marked as special. But Katie is certainly special.
“I’m not sure that’s ever going to go away," Porcelli said of the way leukemia still pervades their family. "We've chosen to stay involved. In one way or another it’s going to be in our lives. At least now it’s in a positive way. We’ve gotten so much support, now it’s important to give back. You go through all that and you wonder why. So you volunteer and help other families and least then it had a purpose and a meaning; otherwise it was rotten.”