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Stories: Lena marks her journey with bravery beads

Lena was a happy nine-year old who went to school with her twin sister Emma and loved to play soccer, skate and swim.

Then a slight swelling below her knee led to a shocking diagnosis: Lena had osteosarcoma – the same bone cancer as Terry Fox.

Lena spent most of the next year at SickKids undergoing chemotherapy. She had a 12-hour surgery to remove two-thirds of her tibia and replace it with an ankle-to-thigh metal rod. The chemo made her so sick that she couldn’t tolerate the physiotherapy needed to relearn how to walk.

Lena returned home, but the daily therapy she needed wasn’t available in her rural community of Newtonville, Ontario.

So she rolled her wheelchair into Bloorview Kids Rehab on a mission: to walk again. For 10 weeks, Lena has worked on painful leg stretches and knee bends and exercises like walking a balance beam and treadmill – all meant to strengthen her stiff leg and improve movement and flexibility in her knee. “But it’s difficult, effortful, painful work,” says physiotherapist Trischa Lowe.

Lena distracts herself by bringing along Nibbles – a stuffed bunny – and threading bravery beads onto necklaces – each marking a painful procedure or special accomplishment. There’s a translucent yellow bead to represent her hair loss, purple sparkly beads for physiotherapy, snowmen to mark blood draws and a large blue bead to represent her surgery.

Cathy says the beauty of Bloorview for her daughter has been the on-site school (Lena missed almost a year during chemo); family/team meetings where they feel buoyed by staff across numerous disciplines; and the creative ways we get kids active again. Lena and her sister learned how to shoot hoops from wheelchairs during her stay and borrowed an adapted kicksled for a weekend at home.

Lena is walking out of Bloorview, but not without leaving a legacy. Inspired by a program she participated in at SickKids, she’s working with child-life specialist Michelle Bernardi and Bloorview Kids Rehab Foundation to create a bravery beads program for children in rehab at Bloorview.

To most people, these beads are just bits of plastic and metal strung together, but to Lena each bead tells a story. Some are happy stories, some are painful stories and some are scary stories. Lena is proud of all of her beads from SickKids and thought it would be a good idea for the kids at Bloorview to have bravery beads: something that would help ease their pain and give them something to look forward to, something they can proudly show to family and friends.

Cathy McNeill on the bravery beads program her daughter Lena initiated during her stay at Bloorview.

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