From left, Melissa, Iris, Frankie and Daniel.
Eleven-year-old Iris is as strategic as a bishop, as strong as a rook and as powerful as a queen. When unable to find a chess club at school, mom Melissa became a member of their local senior center so her youngest daughter could hone her skills.
“She is kind of famous amongst this group of seniors, but she played against this guy recently who was kind of coaching her and giving her guidance, saying ‘You always want to be three moves ahead,’” Melissa says. “And I was just thinking, ‘Oh, she is — you don’t know it, but she’s three moves ahead.’”
In addition to her gaming prowess, Iris is a voracious reader who enjoys her cats’ company. While she’s quiet and reserved when meeting someone new, she’s keenly observant, taking everything in.
“She’s a really, really, really smart kid,” her dad Daniel says. “She’s also very funny and very loving.”
Meeting her opponent
On April 15, 2024, Iris found herself at Mary Bridge Children’s Emergency Department following a persistent fever. She also remembers feeling exhausted and swollen leading up to her diagnosis of acute lymphoid leukemia — a cancer of the blood that begins in the bone marrow where the body makes new blood cells.
“They told me I had leukemia, and I had no idea what the heck that was,” Iris recalls. “So, I was like, ‘Oh, I just have some weird disease or something.’ And then they told me I had cancer, so I was just really surprised.”
Her response to her initial vision loss — a symptom of her disease — was equally matter-of-fact.
“I couldn’t read, which was really annoying ‘cause it’s a bunch of book series that I just had to pause,” Iris says.
Over the coming weeks, she would employ tactics of pragmatism, strength and joy, teaming up with a compassionate care team and Beads of Courage, Inc. in her fight.
Joy as a counterattack, inspired by beads
Demonstrating the length of Iris’ Beads of Courage strand.
During a 30-day inpatient stay, Iris’ expert pediatric oncology and hematology team ran more tests and formulated a plan of attack. Her physicians, nurses, nurse navigators and more took a whole-person approach, connecting with Iris and her parents on a deeper level, while creating moments of joy.
“We had this community experience with our care team and that almost matters to me as much as knowing how to fight cancer, because she’s not had a negative experience at Mary Bridge,” Melissa shares. “I think it’s kind of magical that the whole package works together so that kids don’t walk away from these hugely awful experiences with as much trauma as they might otherwise.”
For Iris, the Beads of Courage program — which has been fully funded by Mary Bridge Children’s Foundation donors since late 2012 — positively influences how she sees and tells her cancer story. Developed by a pediatric oncology nurse in 2003, the program uses colorful beads to represent each step of a child’s serious illness journey, from tests, scans and needle pokes to chemotherapy, immunizations, radiation and more.
Special beads in between celebrate acts of courage, accomplishments and milestones like the 100th bead club. The result is an ever-growing strand, which gives a child something to physically hold on to during tough treatment sessions.
Iris was first introduced to Susan Hayes, a Mary Bridge Children’s volunteer affectionately known as the “Bead Lady,” in her early days at the hospital. She had been preparing to rest when Susan knocked on her door and quietly wheeled in her cart. An exhausted Iris visibly perked up at the mention of beads.
Can you spot the snail bead?
“It’s very, very fun, ‘cause you get to see like all of the, say, blood transfusions you had,” she explains. “I have a snail bead that I like a lot and got these fish beads for traveling long distance, and since we live one hour away, we get a lot of these!”
The program has come to mean a lot to Iris’ whole family, including her older sister who received her own bead packet, and each of their parents.
“Beads of Courage was a shift from viewing the time in the hospital and the path in front of us as this thing that was forced upon us where Iris was kind of a victim of it to a realization that it’s her journey, and there’s no other journey like it,” Daniel says. “It’s her own.”
Melissa loves seeing her daughter brighten even as she talks about hard things and is grateful for the framework the beads provide.
“It makes everything she’s gone through kind of tangible and more easily shared with other people,” she says. “When Iris first came home and people were coming over, these beads really helped in that conversation, because it was being able to show the enormous string and say, ‘Each of these is for something hard that I did.’”
Continuing her match against cancer
Though Iris has many beads to go before proclaiming victory, she, Melissa and Daniel are thankful for the donors who champion kids and families like theirs.
“These kids go through so much, and these donors are providing those hits of joy that help you get through,” Daniel shares. “For me, when we were introduced to the program, it was maybe one of the lowest parts of my life. And every time there was something that would light Iris up and give a different perspective on the situation, the joy that I felt made a difference.”
