Last Thursday, Katherine’s Bowen’s eighth-grade honors algebra class at Camden-Rockport Middle School went on as usual.
Teacher Donna Peterson started writing to augment her explanation of the day’s topic. Then she stopped.
“Katherine, I apologize,” Peterson said. “I was behind you writing on the board.”
“It’s OK,” Katherine said, though she wasn’t there in person.
She was sitting on an easy chair in her living room, communicating with her class through a laptop on her end and a robot at the school.
“Everyone calls it Katherine, but I call it Bob,” Katherine said of the robot that makes it possible for her to be at home and in class simultaneously. “It’d be a little weird for me to say, ‘Please take Katherine to the next class.’”
Bob wasn’t always Katherine’s proxy at school. Bob wasn’t there the time when Katherine decided to give theater a try — and landed the lead role of Inspector Clouseau for Camden-Rockport Middle School’s production of “The Pink Panther.”
Less than a week before opening night, though, she had to unexpectedly back out of the production. Soon after, a new character — Bob — made its entrance.
On Monday, March 16, 2015, Katherine, now 13, went to her pediatrician. She had been feeling a little bit tired, but she and her family chalked it up to her rigorous schedule.
She was a multisport athlete, played the bass guitar and euphonium in two school bands and was practicing for the competitive Maine Music Educators Association festival. She also earned honors-level grades in honors-level courses.
After a few tests, she returned to school. It was picture day for “The Pink Panther” cast.
“I was just sort of exhausted,” Katherine said. “After the pictures, I just laid down on the stage. That’s when everyone was like, ‘something’s wrong.’”
Meanwhile, her parents, Stephen and Heather Bowen, received preliminary results from Katherine’s blood tests. They picked her up from play practice and rushed her to the Barbara Bush Children’s Hospital at Maine Medical Center in Portland.
Diagnosis: T-cell acute lymphoblastic leukemia.
“That was when we were introduced to this whole world you don’t know exists,” Steve Bowen said.
Chemotherapy, radiation, needles, endless tests and days on end in hospitals. Rushed trips to emergency rooms at 1 a.m., 3 a.m., whenever her body temperature rose above 100.5 degrees.
Nausea, fatigue, melancholy and pills, pills, pills. Pain. Her hair, gone. A flood of loving and supportive sentiments from friends and family but secretly, a wish to not have to answer the question, again, about how she was feeling.
These have been the realities of Katherine’s life for the past seven months but not the defining realities.
Katherine is tough.
“It’s sort of like I just have to do what I have to do,” Katherine said, sitting in her living room with her dad. Her shiny blue Ibanez bass guitar — given to her by an organization called Raising the Blues, which gives musical instruments to young people fighting serious illnesses — gleamed in a stand on one side of the room next to an amplifier. Her laptop and schoolwork were gathered around that easy chair and another. The family’s two Labrador retrievers snoozed on the floor in between.
“Everyone’s like, ‘Are you sad or are you angry?’” she said. “There’s not any point to making your life miserable.”
Like anyone in her situation, Katherine yearns for normalcy. She never intended to star in “The Pink Panther,” and she’s heard all the jokes about how bass players are overshadowed in bands by guitar players, raucous drummers and egotistical singers.
“Not being noticed is fine with me,” she said.
Katherine’s father, Steve Bowen, who was the Maine’s education commissioner from 2011 to 2013, said he’d never heard of the robot technology and was unaware of the generosity that so many organizations show to sick children.
“There’s a huge need out there for these supports for kids and families in crisis, and until this I knew nothing about them,” Bowen said. “People keep asking what they can do to help. I tell them to support these organizations.”
The robot, which is not really called “Bob” but VGo, was provided to the Bowen family free of charge by a charity based in Springvale, Maine, called Grahamtastic Connection. In the past 17 years, the organization has placed more than 1,200 computers with sick children and teenagers throughout the country, with a priority on Maine. The company has five VGo robots like Katherine’s and has placed them 14 times in the past three years.
The donor- and grant-funded organization rose from founder Leslie Morissette’s wish to honor her 8-year-old son, Graham, whose battle with leukemia ended tragically in 1997. The organization, which started in the days of dial-up Internet, has given scores of laptops, iPads and Internet connections to patients and hospitals.
“Families are always asking me what they can do to help,” Morissette said. “I say, ‘Right now your job is to be caring for your child.’”
Morissette said Graham’s spirit still travels with her.
“It sounds a little silly to say, but sometimes when I’m on my way to a hospital I just clear off the front seat and visualize that he’s on the road with me,” she said. “Then I pull myself together and walk in and try to do good. I try to live every day to keep his legacy and his memory alive. I hope he’s proud of his mom.”
Through Bob the robot, Katherine can maneuver around her class and talk with her peers. They can see her face on a screen and talk back, even when they’re doing group work.
“Katherine, what did you get for number six?” Molly McClellan, one of Katherine’s classmates, said. Katherine’s answer was different from Molly’s.
“Aaargh!” Molly said, returning to her seat.
What’s it like having a classmate in class through a robot?
“She still acts like Katherine,” Molly said. “She’s energetic and funny and nice. Sometimes she’s sarcastic.”
Ella Tassoni, another of Katherine’s friends, chimed in:
“She’s strong,” Tassoni said.
Kristen Nelson, the school nurse, agrees.
“Even though she is the sickest kid in our school, she just plows through her day,” Nelson said. “When Katherine shows up at school, the kids applaud.”
This week, Katherine reached a milestone in her fight against cancer. She moved to Boston Children’s Hospital, where she’ll live for at least the next six weeks. Her 16-year-old sister, Emily, will be the donor for a bone marrow transplant on Monday.
Katherine said the idea of using Bob the robot to remain connected to her school was hard to adjust to at first, but she’s grateful.
“I just wanted to be more normal, I guess, and normal people don’t go to the hospital,” she said. “At first it felt sort of awkward for me to be a robot at school, and I worried that the kids would notice me more. I’ve always tried to avoid being that different.”
So why the focus on schoolwork when there’s so much going on?
“I like school a lot more this year than I think I ever have,” she said.