(Press-News.org) When Kayla Dehnert tells friends and family in Northern California about life as a St. Jude Children's Research Hospital patient, she pulls out a string of beads taller than she is.
"This is a learning-to-take medicine bead," Kayla explains, fingering the bumps of a bluish-lavender bead and working her way down the long strand. "This yellow bead is the change-the-bandage bead, and the tiger bead is the losing-your-hair bead."
Kayla, 8, of Novato, Calif., is one of hundreds of St. Jude patients who have participated in the hospital's Legacy Bead program since its launch in 2009. The program offers patients and their families a tangible way to illustrate their journeys using 55 glass beads as unique as the children who collect them. Patients receive vivid green cylindrical beads for blood transfusions; sapphire round beads for lumbar punctures; tear-drop beads in assorted colors for homesickness; and blue, triangle-shaped beads for clinic visits. Other beads mark triumphs such as the completion of radiation or chemotherapy or challenges ranging from cancer's return to the death of a friend.
"The beads are like a badge of honor. The string helps put into perspective what we've been through. Each bead represents an important part of her journey," said Denny Dehnert, Kayla's father. "They've made some harder days more bearable."
The Legacy Bead program is one of several methods, including journaling and memory boxes, which the St. Jude Child Life Program offers to patients and families to chronicle their journeys and help build legacies. The approach was highlighted in work published recently in the Journal of Pediatric Nursing.
"Some patients use the beads to express how they are feeling about their treatment journeys and a tangible way to share with siblings or friends what happened today or what treatment involves," explained Shawna Grissom, Child Life director and the study's corresponding author. "Other patients will have the beads as a memory of what happened during this step in their journey of life and some patients will leave the string as a memory for their families to have and pass on."
St. Jude designed its own bead program because existing options did not specifically address the challenges facing many of the hospital's young patients. "We hope other institutions will adapt our program to the specific needs of their patients with chronic illnesses or life-threatening diseases," Grissom said. "This approach could be employed for adults as well as children. Family members could use the beads to talk to children about adults who do not survive their illness."
Because patients often collect the beads throughout the hospital, Grissom said the program also gives staff another opportunity to talk to patients about their care, including why needle sticks are necessary or why a patient might need another MRI. "The program gives patients and staff a chance to celebrate accomplishments and reinforces the staff's role in every child's journey," Grissom said.
Kayla's bead collection started December 6, 2011, the day she arrived at St. Jude for treatment of the brain tumor medulloblastoma. Her string begins with beads that spell out her name and a bead with the hospital's logo. She added a piece of dry penne pasta to her strand, which stretches more than 5 feet, when she visited her classroom back home. "Her class was working on a project that included the pasta. She included a piece on her strand to represent sharing her experiences at St. Jude with her class," Denny Dehnert said.
The Legacy Bead program was so popular the hospital added a similar program for patient siblings. Brothers and sisters earn beads for contributions ranging from serving as bone marrow donors to traveling to St. Jude with their families. "Siblings play such a huge role in supporting the family and patient throughout treatment. We want to make sure they are not forgotten," Grissom said.
The bead Kayla is most anxious to get is silver and barrel-shaped, which marks the end of chemotherapy. After that, Annie Dehnert, Kayla's mother, would like to showcase the strand in a shadow box, but Kayla is holding out for a necklace.
INFORMATION:
The study's first author is Cara Sisk, Tennessee Technological University. The other authors are Elizabeth Walker, Clare Gardner and Belinda Mandrell, all of St. Jude.
The research was supported in part by a Cancer Center Support Grant (CA021765) from the National Cancer Institute at the National Institutes of Health and ALSAC.
St. Jude Children's Research Hospital
Since opening 50 years ago, St. Jude Children's Research Hospital has played a pivotal role in pushing overall U.S. pediatric cancer survival rates from 20 to 80 percent. Founded by the late entertainer Danny Thomas, St. Jude is the first and only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. St. Jude is also a leader in research and treatment of life-threatening blood disorders and infectious diseases in children. No family ever pays St. Jude for the care their child receives. To learn more, visit www.stjude.org. Follow us on Twitter @StJudeResearch.
END
DURHAM, N.C.— By studying how birds master songs used in courtship, scientists at Duke University have found that regions of the brain involved in planning and controlling complex vocal sequences may also be necessary for memorizing sounds that serve as models for vocal imitation.
In a paper appearing in the September 2012 issue of the journal Nature Neuroscience, researchers at Duke and Harvard universities observed the imitative vocal learning habits of male zebra finches to pinpoint which circuits in the birds' brains are necessary for learning their songs.
Knowing ...
NASA's Hurricane Severe Storms Sentinel (HS3) Mission is in full-swing and one of the unmanned Global Hawk aircraft investigate Tropical Storm Nadine on Sept. 14 and 15, while NASA satellites continued to obtain imagery of the storm as seen from space.
The Moderate Resolution Imaging Spectroradiometer aboard NASA's Terra satellite captured a true-color image of Hurricane Nadine in the Atlantic Ocean on Sept. 16 at 1345 UTC (9:45 a.m. EDT) while NASA's Global Hawk was flying around the storm. Nadine strengthened to a hurricane on Friday, Sept. 14 at 11 p.m. EDT, and weakened ...
Using ultra-low input power densities, researchers at the University of Illinois at Urbana-Champaign have demonstrated for the first time how low-power "optical nanotweezers" can be used to trap, manipulate, and probe nanoparticles, including fragile biological samples.
"We already know that plasmonic nanoantennas enhance local fields by up to several orders of magnitude, and thus, previously showed that we can use these structures with a regular CW laser source to make very good optical tweezers," explains, Kimani Toussaint, Jr., assistant professor of mechanical science ...
Typhoon Sanba made landfall in southern South Korea on Monday, Sept. 17 and was moving northeast bringing heavy rainfall, and gusty winds along its path. Sanba downed trees, and caused power outages, canceled flights and canceled ferries. NASA's Aqua satellite captured a visible image of Sanba on Sept. 17 after it made landfall and observed the large extent of its cloud cover from South Korea to eastern Siberia.
NASA's Aqua satellite passed over Tropical Storm Sanba on Sept. 17 at 0430 UTC (12:30 a.m. EDT/1:30 p.m. local time Seoul, South Korea) and the Moderate Resolution ...
NEW YORK (Sept. 17, 2012) -- The power of taxane-based chemotherapy drugs are misunderstood and potentially underestimated, according to researchers at Weill Cornell Medical College in the September 15 issue of the journal Cancer Research.
Most physicians and investigators believe that taxane chemotherapy (paclitaxel, docetaxel and cabazitaxel) just does one thing -- stop a cancer cell from dividing -- but the team of Weill Cornell scientists have revealed it acts much more powerfully and broadly, especially against prostate cancer.
"Taxanes are one of the best class ...
While Tropical Storm Kristy faded into a remnant low pressure area, Lane strengthened into a hurricane. NASA's Terra satellite caught a look at both storms when it passed overhead on Sept. 16 and showed a much tighter circulation within Hurricane Lane than in weakening Tropical Storm Kristy.
When NASA's Terra satellite passed over the Eastern Pacific on Sept. 16 at 18:45 UTC (2:45 p.m. EDT) the Moderate Resolution Imaging Spectroradiometer instrument aboard the satellite captured Tropical Storm Kristy (at the time a tropical storm) and Hurricane Lane, located to Kristy's ...
Each year in Quebec, nearly 6000 people undergo coronary bypass surgery. Recovery is long and quality of life is greatly affected, in particular because most patients experience cognitive deficits that affect attention and memory for weeks or even months after the surgery. However, cognitive training helps to significantly reduce these postoperative complications according to a study that will be presented by Dr. Louis Bherer, PhD (Psychology), a laboratory director and researcher at the Institut universitaire de gériatrie de Montréal (IUGM), an institution affiliated with ...
A University of Nebraska-Lincoln archeological team has uncovered a massive Roman mosaic in southern Turkey -- a meticulously crafted, 1,600-square-foot work of decorative handiwork built during the region's imperial zenith.
It's believed to be the largest mosaic of its type in the region and demonstrates the surprising reach and cultural influence of the Roman Empire in the area during the third and fourth centuries A.D., said Michael Hoff, Hixson-Lied professor of art history at UNL and the director of the excavation.
"Its size signals, in no small part, that the ...
Contrary to previous findings, new research finds no link between chronic fatigue syndrome and the viruses XMRV (xenotropic murine leukemia virus-related virus) and pMLV (polytropic murine leukemia virus). A study to be published on September 18 in mBio®, the online open-access journal of the American Society for Microbiology, reveals that research that reported patients with chronic fatigue syndrome carried these two viruses was wrong and that there is still no evidence for an infectious cause behind chronic fatigue syndrome.
"The bottom line is we found no evidence ...
The causes of chronic fatigue syndrome (CFS) have long eluded scientists. In 2009, a paper in the journal Science linked the syndrome—sometimes called myalgic encephalomyelitis (ME)—to infection with a mouse retrovirus called XMRV (xenotropic murine leukemia virus (MLV)-related virus). Given that affected patients often have symptoms consistent with a chronic infection, this viral connection seemed plausible, and the findings were celebrated as a major achievement for a complex disease that afflicts nearly 1 million in the U.S. Another study in early 2010 published in Proceedings ...
