The Dream: Beautiful Bridge, in Spite of the Storm
The idea of cancer seemed so wrong because Katelyn Pasley so loved life.
The third-grader at Park Road Elementary School in Pittsford had recently made the Mustang 9-year-olds Soccer Team; she was also a Little Leaguer who made triple plays and, based on a win at a district swim meet, she promised to be a budding backstroke competitor.
The youngest of four, Katie was her family’s cheerleader (when she wasn’t competing herself, of course). When she tired of athletics, she’d simply segue into her artsy side, playing piano, flute or singing.
Her trademark, her parents say, was drawing rainbows – big, beautiful bridges that poke out after sunshine chases off a good hard rain
Which is why it’s not surprising that, when this she was diagnosed with leukemia and cooped up in hospital for intensive chemotherapy treatments, Katie, social butterfly that she was, naturally wanted a rainbow of her own – some big, beautiful bridge that would connect her to the outside world; some sunshine to help chase off the storm. Her school, together with a local community pediatrician, Ali Loveys, M.D., worked together to find an answer: providing Katie a laptop, both to help her keep in touch with her friends and stay current with her schoolwork. “We were grateful that she had it, but part of us felt a bit disappointed, too, that every other kid couldn’t enjoy the same,” said Katie’s dad, Brian. To everyone’s surprise, after only five weeks in the hospital, Katie passed away suddenly; she was 8-and-a-half years old.
Little did anyone know that a girl so small was about to leave a mark so big.
Little Girl’s Legacy
Katie’s spirit lived on. Friends became motivated to help other children and families who, like the Pasleys, had been plucked out of their normal routines and dropped into the hospital universe – a swirling world of disease and decisions.
The First Rainbow Classic – a fundraising basketball game between the varsity teams at Pittsford Sutherland and Pittsford Mendon High Schools – was set for December 2001. The game raised funds to support an initiative to provide laptops to other hospitalized kids, connecting them to their friends back home much in the same way that had brightened Katie’s own brief stay. But, only a short time in, the plan proved riddled with problems; computers kept breaking down, disappearing. The funds raised were put into an account for use toward a better solution. The search continued for Katelyn’s Connection.
Connectivity: Just the Start
“For years, since Katie’s dream was first born, we’ve been on the lookout for the ideal, connective system – not to mention, the additional funding that would make it available to every bedside,” said Elizabeth Lattimore, administrative director for clinical services at Golisano Children’s Hospital. “We’re proud to say, we’ve finally found that and more in a new system – GetWellNetwork. Of course, we’re naming it in honor of Katie.”
Katelyn’s Connection was installed in mid-August, thanks to community generosity – continued support from the Rainbow Classic annual tournament, a $100,000 gift from the Ford Foundation, a $50,000 gift from a friend of the Pasley family, and a handful of $2,500 sponsorships from the annual hospital Gala.
Patients, using a keyboard or corded remote, can toggle their way through a purple-colored menu to find games, movies on demand, Internet access, e-mail (meanwhile, parents can stay in touch with work, link to conduct online banking, etc., all through the Internet). “It’s their portal to the outside world,” Lattimore said. “But that’s just the start.” The so-called “edutainment” system goes beyond mere diversion, connectivity; it’s hailed for its educational aptitude, as well.
Immediately upon being admitted to their room, the screen welcomes patients, blinking a cheery “Hello, X,” and listing an assigned nurse’s name. Orientation videos have already been “served up” to the room, ready to be watched and impart basic information (the importance of hand washing; your responsibility and right to speak up about your child’s care; hospital cafeteria information; a snapshot of what Rochester has to offer, for out-of-towners). “We are on the cusp of something new,” Lattimore said. “This information is all in one spot, at arm’s length. We can track what’s getting read, watched or accessed. For the first time ever, we can gauge what instructions parents are absorbing, what they’re most seeking.”
Terri Scharfe-Pretino, senior clinical nurse specialist, is thrilled about another educational element the system offers – the chance for parents to be briefed on diseases, medicines or care instructions on their own emotional timetables. “So often these important discussions – perhaps about what a new diagnosis means, or how to clean a catheter, or what to expect of a new prescription – don’t happen when parents are best ready to learn,” Scharfe-Pretino said. “Maybe a diagnosis is too upsetting, too raw to be explored just then; maybe they’re not morning people, and we’re scheduled to teach and field questions at 8 a.m. This system changes that.” Doctors and nurses can “prescribe” informational videos that parents can watch – and be quizzed on – at their leisure.
“In no way does this replace the important educational talks we will have with a parent,” Scharfe-Pretino said. “But, this certainly allows them to acclimate themselves to the battery of new knowledge. That way, when we do arrive to talk and educate, they’ve had a chance to become somewhat familiar with the ideas. Our time can be more meaningful.” The more parents know, the better their sense of control, the more they can play their role as a key part of their child’s care team. Brian Pasley echoed the same sentiment.
“As a parent, full of questions, having access to information and being able to research on your own volition is incredibly helpful,” he said.
You Can Help
Katelyn’s Connection is a dream come true for Golisano Children’s Hospital; with the exponential growth of technology, its possibilities are endless. You can be part of sustaining this important service to our patients and their families; to make a contribution to bring connection and answers to hospitalized families who crave these services most, call the Development and Community Affairs Office at (585) 273-5948.