Recipients

a_little_bead_goes_a_long_way

Michelle Bisaillon has received gifts from strangers many times. They’ve willfully shared their blood, plasma, and platelets, but she won’t have the chance to thank them for helping bring her back from the brink.

“I’ll never get to know who they are,” she says. “But I’m always curious about who’s donated and given me the gift of life.”

The Paris, Ontario native was diagnosed with acute myeloid leukemia in 2002 at the age of 14. The subsequent years were filled with chemotherapy, paralysis, repeated infections, induced comas, sepsis, reconstructive surgery, physiotherapy, and finally, an amputation.

Cancer took her on a long, difficult journey, but it’s one she’s proud to wear around her neck.

More than 400 of her steps along the way are captured in the colourful bravery beads that make up multiple necklaces. There are beads for chemo, for finger pokes, for lumbar punctures, and for hair loss. Among them are 140 red beads, each representing a blood product Michelle received.

“When the child-life specialist would come in once a week (at McMaster Children’s Hospital), I’d be ready. I’d have a list for her. When I was in the ICU, my mom kept track,” Michelle says. “It was a sense of accomplishment to get the beads and to be able to see them hanging off the IV pole.”

Along the way, she remembers brushing off people when they told her how strong she was.

“But now when I sit and look at the beads, I realize I’ve done a lot of things. It’s kind of amazing to see how many procedures and things I’ve been through. Looking at them kind of sums up my story.”

Denise Saulnier wanted to find a way to connect recipients like Michelle and the donors who help them pull through.

A community development coordinator at the permanent clinic in Ancaster, Ontario, she says those who donate on a regular basis often have a personal reason for coming in. She wanted to help make the connection for those who don’t. She knew about the children’s hospital’s bravery bead program and it started her wheels turning.

Back in January she reached out to the hospital’s child-life specialist, who deals directly with sick children and their siblings.

“I wanted to be able to get the red beads so that new donors could put a special message on it when they donated. When the child received it, they’d know someone cared enough to donate their time to give,” Denise says.

She pulled things together in just under three weeks and tied it in with Canadian Blood Services’ new donor challenge in February that urged people afraid of needles to “Be Brave” and give.

A successful media conference with plenty of coverage kicked things off and by month’s end, more than 150 new donors in Ancaster had written on the little red beads. Messages to “be brave” and “stay strong” were weaved around hearts and flowers.

“The donors really embraced it,” Denise says. “It made that connection for them. They knew where that bead was going. Everyone had a good feeling from it.”

Even the donor clinic got in on the action and hung a necklace of beads, stringing a red bead for a whole blood donation, a white one for a new donor and a yellow one for a platelet donation.

“You could really see how many people had come through our door that month,” Denise says. “This whole thing worked really well. I was proud to do it.”

So much so she’s hoping to do it again in September to mark childhood cancer awareness month.

Trish Gibson would love to see that happen. Her little boy Liam has accumulated more than 1,200 bravery beads since being diagnosed in stage four of a rare form of cancer called Alveolar rhabdomyosarcoma when he was just 18 months old.

Now three, Liam has undergone rounds of surgery and a year of aggressive chemotherapy. He’s battled many infections and paralysis along the way. These days his chemo is taken orally each night before bed — a routine that will last a year.

“It’s unreal how many beads he’s accumulated,” the Hamilton mom says. “He’s going to have a mountain of them, but he deserves every single one of them.”

She’s actually had to rein it in, as he could get one every three hours for using his catheter and another every night for chemo. She’s limited the bead to one for every four-week chemo cycle now. But with another year of treatment to go, they’ll continue to collect beads to represent his journey. Once he’s done, Trish says she wants to use them to spell out words and have them framed. She hasn’t decided yet what those words should be.

For now, Liam plays with the beads and has them incorporated into his therapy to re-develop his motor skills and to identify different colours and items. He has beads with ducks to mark Easters spent in the hospital and pumpkins for Halloweens he didn’t get to trick or treat.

Among them are 21 red ones, representing the blood products he’s had over the last two years. Although Liam is too young to understand what they represent, these beads are special. This family knows all too well how much blood matters, as Liam’s father Ross was diagnosed with acute myeloid leukemia when he was 11 and says without the gift of life, he’d be gone.

Trish says putting messages from donors on beads makes a lovely idea that much better.

“The parents definitely appreciate the sentiment of it. And a lot of children, particularly the adolescents we’ve gotten to know, they feel left out and deserted. They think that they’ve been forgotten. Their friends slowly disappear and their lives revolve around the hospital,” she says.

“This is one way to show these kids that they’re not forgotten, that someone is thinking about them. When they’re getting blood, they’re not feeling well, they don’t have energy. To get that little bead with a message on it would brighten their day. I almost wish the bead was a little bigger, to be able to write a full message, not a few words. I really like the idea of why they’re doing it.”

Now 22, Michelle keeps her bravery beads with her wigs and cards, in a treasure box of all things. It holds everything from her time in and out of the hospital.

“I want to look back on it one day if I have kids and show them what I’ve been through,” she says. “These are memories I want to keep close to my heart. Even though it was the worst thing, it was also the best thing. I’ve met a lot of people along the way who are wonderful and the journey has made me who I am today. It’s important to keep those tokens.”

Although she had finished her treatment when the messages started, she does public speaking for Canadian Blood Services and jumped at the chance to be involved in the bravery bead campaign.

“It was a great way to give back. I would have liked to have gotten a bead from someone who donated blood,” she says. “When they’re signed, you get to make a connection with that donor, even though you don’t get to meet them. That’s pretty amazing.”

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