Drawing a bead on BRAVERY
Program at Sick Kids hospital lets children pick out a tiny plastic badge of honour for every procedure they endure. Poppy Rai has more than 900 beads. She is just three years old.
Minnie’s favourite bead is a big red heart.
It was the 11-year-old’s reward for going through a heart transplant at the Hospital for Sick Children in February.
Undergoing such a major surgery would rattle even the bravest adult. But Minnie kept her focus on getting the bead.
“The beads make us excited,” she said. “They also show you are brave, and you have done it.”
The bravery bead program at Sick Kids — a partnership between the Women’s Auxiliary volunteers and the Child Life Specialists — lets children collect a bead for every procedure, pinprick and test they undergo, marking a colourful milestone in their recovery. The program turns 15 this year. Judy Hurrell, the bead co-ordinator, says there are more than 100 beads: pink ones, red ones, sparkly ones, beads shaped like planes, trains and automobiles (for kids who have to travel to Sick Kids), star-shaped beads for tests and scans, a teddy bear bead for kids in isolation, and “wow beads” that children can choose for doing something they were afraid to do.
Hurrell’s favourite is the discharge bead: a sparkly golden-yellow bead children get before going home.
This week, Menaal (Minnie) Saeed came to the hospital for an echocardiogram.
Dressed in a black and white shirt, black pants, pink sneakers and pink socks, she looked like any other 11-year-old girl, until you see her eyepopping collection of bravery beads. Minnie has 1,150 beads so far.
Minnie spent about 11 months at Sick Kids, where she was diagnosed with dilated cardiomyopathy.
“She had end stage heart failure,” her father, Saeed Alam, said as he watched Minnie. “We were devastated.”
In the face of such news, he said, the bead program seemed trivial.
“We thought — this is nothing,” he said. “But almost immediately we realized that this is the thing that keeps her going. She would wait the entire day for the bead.” Alam said he remembers a day when Minnie had four procedures back-to-back.
“We were very scared. But we saw her face: she was very excited that she’d get four beads for it. And she was happy,” he said.
“If you see from an adult perspective, it’s nothing. But for her, it’s ev- erything.”
Penelope (Poppy) Rai has 11 strings of beads, each with about 80 or 90 beads on them.
On Feb. 16 this year, before she turned 3, Poppy was diagnosed with high-risk Stage 4 neuroblastoma — a tumour of the nervous system and the third most common pediatric cancer. The rate of survival for children with high-risk metastatic neuroblastoma is less than 40 per cent.
Poppy spent several months at Sick Kids and will begin her next round of treatment on May 15.
While there has been no shrinking of the cancer, it is under control with no further growth or spread.
This week Poppy was at Sick Kids for further tests.
After she had blood drawn, she went over to the table to pick out her beads — red, blue, sparkly purple, red and white, and white.
“She loves the beads,” Poppy’s mother, Shawna Rai, said. “She doesn’t know what each bead means, but she knows that they mean that she’s been brave. She collects them and puts them around her necklaces. She acknowledges that she earns these beads. It’s something to look forward to.”
When Poppy is older, she will understand what each bead means and that they signify her journey, Rai said.
“She’s overcome a lot . . . and those beads are tiny little miracles.”
Some of Poppy’s beads include a pink “bald” bead for when she lost her hair after chemotherapy, a smiley wow bead, and a blue, white and black Turkish evil eye bead.
Rai’s favourite beads are the ones from the ICU, including a golden one from when Poppy was well enough to be taken off life support.
“The beads will be part of her journey, her story,” Rai said, touching the strings. “They’ll be hers forever.”
“If you see from an adult perspective, it’s nothing. But for her, it’s everything.” SAEED ALAM MINNIE’S FATHER