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.

 

High hopes for long-term hemophilia B therapy

Investigators from St Jude Children’s Research Hospital and University College London recently announced extremely encouraging preliminary results of a Phase I/II gene therapy trial in patients with hemophilia B.

Hemophilia B, is a deficiency of Factor IX (FIX), one of the proteins necessary for normal clot formation. The disease affects about 1 in 30,000 people.  Without treatment, people with hemophilia B are at risk for uncontrolled, disabling and potentially fatal episodes of both internal and external bleeding.

The FIX gene is carried recessively on the X chromosome, and as a result the disorder, just like hemophilia A (FVIII deficiency), is almost exclusively seen in males, though it is carried by females.  Patients with severe hemophilia B, must normally inject themselves intravenously with FIX twice a week.

For such patients, gene therapy offers the enticing prospect of a near normal life, but previous studies have yielded disappointing results.

This study, presented last week at the American Society of Hematology annual meeting, was designed primarily to evaluate the toxicological safety study of low and intermediate doses. Because of the low dose used, researchers anticipated that trial subjects would produce little or no detectable FIX. So it was something of a positive surprise when the first patients FIX levels rose from <1% to 2% of normal, after infusion of the experimental vector.

While this rise, may not sound all that impressive, for a person with hemophilia it means the difference between severe and moderate disease.

Even more surprisingly, the patient’s FIX production remains elevated more than nine months later. Since the infusion the patient has also not suffered any spontaneous joint bleeds or needed prophylactic treatment.

Work on the vector began more than 10 years ago. An adeno-associated virus (AAV) vector known as AAV8 was picked because the incidence of natural infection with AAV8 is low and, like although it targets liver cells it does not integrate into the patient’s DNA. Participants received no immune suppressing drugs prior to infusion of the experimental vector.  The results so far suggest the experimental vector does not trigger the T-cell mediated immune response seen in a previous hemophilia B gene therapy trial.

The highest dose of the novel gene-vector combination is scheduled to be infused into the fifth and sixth study participants by mid-January. Investigators will then decide whether to expand the trial to include four more adults with severe hemophilia B.

As always SRxA’s Word on Health will be watching closely and will bring you news of further developments as they are announced.