Not just monkey business;

Innovative programs help kids, families cope with the stress of serious illness

Story and photos by Allison Gorman

Ryleigh Ledford couldn’t attend her preschool graduation last May. Instead, there was a monkey in her chair, wearing her cap and gown.

By the middle of September, Ryleigh had attended only two hours of kindergarten at Chickamauga Elementary. But when she wasn’t in her chair, the monkey was, reminding Ryleigh’s young classmates that their friend would be back soon.

Ryleigh, 5, is a patient at T.C. Thompson Children’s Hospital at Erlanger. Last spring she was diagnosed with acute lymphoblastic leukemia, an aggressive cancer of the white blood cells that is most common in preschool-age children. While the disease has an 80 percent cure rate, and her mom, Rebekah, reports that Ryleigh is responding well to treatment, she hasn’t had the normal school and social life most 5-year-olds enjoy. Aside from her scheduled weekly treatments at Erlanger, Ryleigh also must be hospitalized as a precaution any time she has a fever, an irregular blood culture, or any other sign of compromised immunity. Right now, getting healthy is Ryleigh’s full-time job; kindergarten has had to take a back seat.

Fortunately, the monkey’s there to fill in.

“There’s a Monkey in My Chair” is one of two new programs at T.C. Thompson intended to help children and their families cope with the stress and upheaval that attend a child’s serious illness. A Kansas-based nonprofit, “Monkey” was founded to help children like Ryleigh, who must miss school due to cancer or brain tumors.

Ashley Williams, a child life specialist who facilitates the program at T.C. Thompson’s Center for Childhood Cancer and Blood Disorders, says the monkey kits are donated by the Children’s Hospital Foundation. Each kit, which comes in a duffel bag, includes a large stuffed monkey that sits at the child’s desk during absences from school, as well as a smaller version for the child to keep. Either the child or his or her classmates can use the small backpack, camera, journal, pencils and other items in the kit to chronicle the child’s—and the monkey’s—time in school and in treatment. Finally, the child’s teacher can use the coordinating picture book to help explain to other children why their classmate can’t come to school.

Rebekah Ledford says the monkey was “a really good ice-breaker,” helping divert other children’s focus from the mask Ryleigh must wear to protect her from germs.

“We took it the day before school started and talked to the teacher about it,” she says. “The next day, at first, all the kids were asking, ‘Why does Ryleigh have a mask on?’ But then we brought the monkey in and the teacher just really took over, and the kids weren’t so focused on the mask. They were like, ‘What’s up with the monkey?’”

A classmate’s mother bought clothes for the monkey, which now has three outfits in its duffel bag. “It’s been great,” Rebekah says. “Ryleigh’s only gotten to go to kindergarten for two hours, but everybody knows the monkey. It goes to the playground, it goes to lunch, it sits in her classroom, and because she was in the hospital during pre-k graduation, it sat in the stage in her chair, with her cap and gown on.”

The “Monkey” program launched nationally in 2008 and since 2009 has sent some 850 kits to patients and hospitals in 40 states. Williams says T.C. Thompson has five donated kits—though with 70 patients currently in treatment for cancer or blood disorders, the unit could use plenty more. (Kits can be donated through The Children’s Hospital Foundation.)

Williams also facilitates another interactive program, Beads of Courage, which has been popular with patients and parents alike since it began at T.C. Thompson in June. Based in Arizona, Beads of Courage provides materials for young patients to create a necklace representing their personal experience with illness—each challenge, milestone or victory symbolized by a different bead.

First thing each morning, Williams selects beads to present to every patient in the unit based on his or her course of treatment. There are hundreds of prefabricated beads representing scores of standard treatments, she says.

There are beads for bone marrow biopsies, chemotherapy, a surgical port placement or removal, a clinic or ER visit, an ambulance ride or a stay in intensive care. There are beads for specific medical tests. There are beads for surgery, antibiotics, fever, a feeding tube or catheter. There’s a curly-haired bead for hair-loss and even a glow-in-the-dark bead for radiation treatment.

Then there are the “bumpy beads.”

“If they’re having a bumpy day, they get one of these bumpy beads,” Williams says. “These are ones we use all the time.”

After four months of treatment, Ryleigh’s necklace already is too heavy for her to wear. Her mom says they need to start another string.

The point isn’t about jewelry, anyway, Williams says. It’s about history and identity. For older patients, the beads represent bragging rights. (Even at 5, Ryleigh knows how she earned every bead on her string.) And for parents, it’s a chronology of their child’s treatment—a visual journal to help keep extended families and co-workers informed. Later, it becomes a cherished, if bittersweet, keepsake.

Punctuating each strand are what Williams calls “special beads for acts of courage,” handmade glass beads donated by artists nationwide. Among them is Signal Mountain’s Susan Perry, who has made to order a number of beads for T.C Thompson patients, including an airplane bead for a child flying to New York for surgery, and a “WWE” bead for a 6-year-old pro-wrestling fan.

“When kids are all done with treatment, they’re like war veterans, so they get to pick out a handmade purple heart bead; I’ve given out a couple of those,” Williams says. “And when kids pass away, we send their families the butterfly bead.”

T.C. Thompson’s Beads of Courage program receives some money from Blood Assurance and The Children’s Hospital Foundation, she says, but it also depends on individual donations.

“We haven’t gotten a lot of funding, but I’ve gotten a lot of donations for this program because it’s impacted a lot of people,” she says. “I have a mom who lost her son just as we were starting this program, and it became sort of therapeutic for her—families in that situation sometimes don’t know what else to do. She has called and wants to make a donation to the Beads of Courage fund in his name.”

Monkey and me: Ryleigh Ledford, 5, a patient at T.C. Thompson Children’s Hospital at Erlanger, hugs a monkey like the one that shares her seat in kindergarten at Chickamauga Elementary School. With her is Ashley Williams, the child life specialist who facilitates the “There’s a Monkey in My Chair” and “Beads of Courage” programs at T.C. Thompson.

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For more information:

Read more about these innovative programs at MonkeyInMyChair.org and BeadsOfCourage.org.

Ryleigh on the air:

Hear Ryleigh Ledford chat with radio personality James Howard during the 4^th Annual Cure for Cancer Radiothon, to be broadcast live from T.C. Thompson Nov. 18–20 on Sunny 92.3 and 96.5 The Mountain.