Coping with the challenges of cancer…one bead at a time

Childhood cancer is almost always devastating for the patient, their family and friends. But now, in an innovative program patients at St. Jude Children’s Research Hospital, are using beads to help them put everything in perspective.  The beads help to commemorate the cancer journey and come to represent treatment milestones, such as losing their hair to completing chemotherapy.

The Legacy Bead program was launched in 2009. In the first year alone the hospital purchased more than 90,000 beads.  If placed end-to-end, this string of baubles would have extended longer than six football fields. And the program has been growing ever since.

When eight year old 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, is just one of the hundreds of St. Jude patients who have participated in the program. Patients and their families discover a tangible way to illustrate their journeys using 55 glass beads as unique as they are.  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.

Each bead represents an important part of her journey,” said Denny Dehnert, Kayla’s father. “They’ve made some harder days more bearable.”

According to Shawna Grissom, author of a newly published paper that outlines the benefits of the program, some patients use the beads to express how they are feeling about their treatment. Other patients have the beads as a memory of what happened during this step in their journey of life and still others will leave the string as a memory for their families to have and pass on.

Because patients collect the beads throughout the hospital, Grissom said the program also gives staff the opportunity to talk to patients about their care, including, for example, why needle sticks are necessary.

Kayla’s bead collection started December 6, 2011, the day she arrived at St. Jude for treatment of her brain tumor. Her string begins with beads that spell out her name and a bead with the hospital’s logo. While she has added many more since, the bead Kayla is most anxious to get is silver and barrel-shaped, which marks the end of chemotherapy.

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.

Paola, another patient, who lost both her eyes to a rare eye cancer can identify her favorite Legacy Beads by shape, size and texture.  “This triangle bead is for a needle stick,” she says with a smile. “It’s sharp and pointed like a needle.”

As her hands wander down the necklace with practiced ease, she pauses at a round, yellow bead.  “I got this one for changing the dressing on my leg,” says Paola, who is now receiving treatment for the bone cancer osteosarcoma. With maturity that belies her years, Paola explains the significance of the beads she finds most interesting. “I strung them myself,” she proudly declares.

The St. Jude families find novel ways to display their Legacy Beads. While many end up as jewelry, others are hung from the ceiling or adorn strollers, purses or backpacks.  Teens say the beads give weight and heft to their stories, providing a tactile method for demonstrating the breadth of their experiences. They help bridge that gap as they talk with people who don’t understand what they’ve been through.

When the times get really tough, stringing beads is a good way to get our minds off the bad things that are happening,” says the mother of Tyler, a 7 year old cancer patient.

In the past year, she has collected 307 beads, signifying operations, chemotherapy treatments and hair loss, bad days and good days, needle sticks, inpatient admissions, platelet transfusions and many other events. She plans to hang the long strings of beads in her son’s bedroom as a symbol of his treatment and a celebration of his bravery.

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.

 

One in the eye for brain disease

Surgeons in California announced this week that they have developed a safe and effective way to remove brain tumors and repair skull fractures and other brain injuries through a small incision in the eye. This technique, known as TONES (transorbital neuroendoscopic surgery) has multiple advantages for the patient, including:

  • reduced pain
  • decreased recovery time after surgery
  • better preservation of the nerves responsible for smell and vision
  • no shaving of the head
  • no ear-to-ear scar

This groundbreaking, minimally invasive surgery is performed through a small incision behind or through the eyelid. A tiny hole is then made through the paper-thin bone of the eye socket to reach the brain. This pathway permits repairs to be made without removing the top of the skull in order to access the brain. With TONES, the area of bone removed is only two to three centimeters.

Surgeons from UC San Diego Medical Center and the University of Washington Medical Center, have used the TONES procedure to repair cerebral spinal fluid leaks, optic nerve decompression, repair of cranial base fractures and removal of tumors. Given further research, the surgeons believe that TONES may serve as a means to treat pituitary tumors, meningiomas, and vascular malformations.

They also believe that TONES offers advantages over transnasal surgery. Although surgery through the nose offers similar access to some areas of the brain TONES offers increased maneuverability and visibility for the surgical team.

SRxA’s Word on Health is excited to share this cutting-edge technology with our readers and as always, looks forward to receiving your feedback.

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Brains on Bikes

When Word on Health heard that brain cancer survivor Anne Feeleys three month cycling trip across the U.S. would culminate in our home town of  Washington DC, we just had to be there.  Which is why, last Saturday your very own blogger, cheerfully  braved  100+ degree temperatures and city traffic to accompany Anne and her cycling partner Gundy on the final leg of this inspiring journey.

We were joined, by several brain cancer survivors, including local fundraiser, athlete and friend  extraordinaire BethAnn Telford, as well as others like us, who were simply touched by Anne’s story and wanted to help her spread the message.

After being diagnosed with glioblastoma multiforme, a malignant brain tumor, in 2006, doctors told Feeley that her chances of survival were slim.  But she was determined not to take the diagnosis lying down.  So far she has defied the odds and the mean post-diagnosis life expectancy of 15 months. Not only is she still alive, she is in remission and redefining what it means to live with brain cancer.

I began my exercise routine while the staples were still in my head. Some days I cried all through the yoga class, but I did it,” says Feeley.

After just a few months, she began competing in running, cycling and mountain climbing events.   “When I first attempted running, I could only manage seven steps. We slowly worked at it and less than a year later I finished a half marathon. My finishing time wasn’t great, but I finished and I felt wonderful.”

To those who say she’s one of the lucky ones, Anne responds, “It shouldn’t be about luck; it should be about science.” We need better treatments, there have only been three treatments developed in 35 years. … I want to change that.

And change that she has.  To raise awareness and research funding for the disease she had worked so hard to overcome, and Feeley founded Brains on Bikes.  Now, having completed 4,170-miles and raised over $1.5 million, she says  “This is just the beginning.”

100% of the money raised will go to help brain cancer patient and to fund research. To donate, or find out more, please visit http://brainsonbikes.org/