Kezia Fitzgerald told us her story last year, when she was finishing treatment Hodgkin lymphoma and her daughter Saoirse was battling neuroblastoma. Sadly, Saoirse lost her fight last winter. Losing her inspired Kezia and husband Mike to do something to help all cancer patients. (A version of this story originally ran on Vector, Boston Children’s Hospital’s science and innovation blog.)
Over the last year and a half I’ve written 70-plus stories about innovations by doctors, nurses and other staff at Boston Children’s Hospital. I haven’t yet written a story about a patient innovation. But that doesn’t mean that patients and their families aren’t out there innovating.
Case in point: Kezia Fitzgerald saw pretty quickly that there was a problem she might be able to fix. Her daughter Saoirse (pronounced Seer-sha), who had been diagnosed with neuroblastoma, had just had a PICC line put into her arm at Dana-Farber/Children’s Hospital Cancer Center to infuse drugs and fluids. Within a day, Saoirse was tugging at the line, trying to pull off the tape that was keeping it in place. “It was irritating her skin pretty badly,” Kezia says. “She was really uncomfortable.”
Kezia, herself at the time fighting Hodgkin lymphoma (read the family’s story) wanted to make her daughter as comfortable as she could. “I pulled out my sewing machine and some cotton fabric,” Kezia recalls, “and made this little sleeve with a pocket that I thought could hold the line in place without having to tape it to her skin.”
That, in a nutshell, is the origin story of the CareAline, which Kezia and her husband Mike are developing into a product that they hope will make life a little easier for patients young and old with cancer and other chronic illnesses. …
Raising a child with autism is challenging, to be sure, but some situations can be more challenging than others. Take trips to the doctor, for instance – especially if the child has to get shots or have blood drawn. “Anything with a needle can be a real stumbling block for families,” says Ellen Hanson, a researcher in Children’s divisions of developmental medicine and genetics. “It’s completely out of the routine, and children may have had a bad experience in the past or general anxiety about going to the doctor that make it really difficult.
“At the same time,” she continued, “these things are part of good medical care.” Blood draws are also essential for the genetic studies that researchers like Hanson are conducting into the root causes of autism spectrum disorders (ASDs). “Some of the families that we’ve reached out to for our studies have been reluctant because of concerns about how their child will react to the blood draw.”
So how can we make this easier on everyone: doctors, researchers, families, and, most importantly, the children? Recognizing that there was little guidance in the literature about making blood draws easier for children with ASDs, Hanson and her colleagues sat down to create what they call a blood draw intervention program – essentially, a method and kit for helping parents and doctors prepare children for blood draws so that the actual event is as painless as possible. …