Meet Declan Alexander Rourke, an AT/RT cancer survivor.
Soon he’s visiting Disneyland, and is super pumped about a Star Wars attraction, where he will get to fight Darth Maul.
“I am not sure if Maul is going to have a single bladed light-saber, or a double, because in the Clone Wars, he has a single… Episode One… double,” he effuses, slapping his hand on the table for emphasis.
I ask him if he had to put a percentage on how much of his waking thoughts are devoted to Star Wars, what would it be?
“Seventy-Five,” he replies, without missing a beat.
Even after surviving a very rare brain tumor as an infant – which required surgery, chemotherapy and radiation, all just as he was learning to walk and talk – he’s a pretty normal ten-year-old.
And (here’s the good news) more children are surviving childhood cancer than ever before, just like Declan. But there’s a trade-off: two-thirds of those survivors have to live with increasingly serious side-effects, which come with the aggressive treatments that have helped raise those survival rates.
For educators integrating these kids into the classroom takes creativity.
These days he’s hard to distinguish from other fourth-graders in his class at Memorial Elementary School in Bedford. The most difference is Declan wears hearing aids.
“I do wear the FM system, this is a direct input into his hearing devices,” says Scott Buffet, his teacher, demonstrating the tiny lapel mic he and Declan’s other teachers wear. It beams the teachers’ voices directly
into Declan’s ears.
He says that this has led the students to say that Declan has “super-power hearing,” because he can pick up sound sometimes even when Declan’s not in the same room.
“We were in class one day,” Buffet recalls, “and Declan looks a little bewildered, and I’m like ‘Declan what’s wrong?’ He’s like, ‘Well, I’m hearing what the art-room teacher is saying, down the hallway.’ And the kids are like ‘Wow! That’s amazing!’”
But while he might otherwise seem perfectly normal, Declan’s treatment left – essentially – a hole in his brain. And that’s something that his teachers might not have learned how to teach to when studying pedagogy.
That’s where Marybeth Morris comes in.
Her job is to attend all of the meetings where special education staff plan for how to educate former brain and central nervous system cancer patients, and explain to the teachers the hidden ways the treatment has affected these children.
“Some examples of that may be slower processing speed, difficulties with memory, difficulties with attention… executive functioning. There really is a wide range of how our students present,” she says.
Morris is a school liaison working for the Dana-Farber and Boston Children's Cancer and Blood Disorders Center in what may be a one-of-a-kind program. Her services are offered to patients in a sixty mile radius of the hospital and she follows them until they graduate high school.
Often her job is about managing expectations.
“While our students will continue to make progress, the rate at which they make progress is slower than their more typically developing peers, and so the gap tends to widen between the students we work with, and their class peers,” she says.
A study of this program found that students whose liaison did more in-person visits with educators over more years had better education outcomes.
Morris says, this is in part because she can help educators better understand the nuances of the brain injury in question, but it’s also because the liaisons can push teachers.
“Sometimes I can be the one who says something that may be a little more challenging to a team,” she explains candidly, “For some parents that can be a relief to not have to be the one to be argumentative knowing that they’re going to be dealing with these school districts day-in and day-out for many years to come.”
“Allows Us to Be the Parents Again”
According to studies by the American Cancer Society, in the 1970s only 50 percent of children with cancer survived for five years after their diagnosis, but today that number has risen to 84 percent. More than a quarter of those children have some sort of brain or nervous system cancer.
All of that is to say that more and more teachers are going to have to learn how to teach students like Declan, which – without a medical professional – can be tough.
“She allows us to be the parents again in the room. Cause she came in and suddenly Tym and I were just able just to be mom and dad, and not the medical interpreter,” says Mel Pepin, Declan’s mother.
During Declan’s treatment, there were “a couple of years” during with Pepin and Tym Rourke, Declan’s dad, only saw one another for a few hours a week. After Declan’s treatment was complete, Pepin had to leave her job in order to provide everything that he needed in order to flourish and rebound from the chemotherapy.
She says having access to the liaison program lifts a weight from her shoulders.
“Every now and then we talk about maybe moving,” she says, “And then we say, ‘No.’ For two reasons: because one, we won’t leave the school and two, we won’t leave the area of which Marybeth can attend our meetings.”
Declan listens patiently to this discussion of the very adult questions of coordinating his care, before interjecting with his very normal, ten-year-old’s concerns.
“There’s a third reason we all decided against moving,” he pipes up, “and it’s our friends and neighbors that we would not have contact with… or at least not often have contact with”
As for the liaison program, it may be spreading to the treatment of other childhood neurological disorders. Children’s Hospital recently hired an education liaison for their neurofibromatosis clinic, hoping to emulate Dana Farber’s model.