Amanda Aiello was worried about going back to Eagle Ridge Elementary School in Coral Springs after being treated for Acute Myeloid Leukemia in April of last year.
“I was scared that people would think that I was a boy, because of my hair,” said the 11-year-old fifth grader, who lost her hair during chemotherapy but is now in remission.
The STARS (Student Transition and Re-entry to School) program helped Amanda acclimate to school in February. The program, composed of social workers, child-life specialists and music and art therapists, helps pediatric oncology patients at the Salah Foundation Children's Hospital at Broward Health Medical Center transition back to school.
A child-life specialist used ping-pong balls, representing white blood cells, to help Amanda’s classmates understand what happened to her. An art therapist had the kids drew superheroes to fight Amanda’s cancer. And a Q&A fielded questions like, “Is cancer contagious?”
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“We were able to break up the stereotypes and answer questions at their level,” said Melissa Stachowiak, LCSW, a pediatric hematology and oncology social worker at Broward Health.
In addition to easing anxiety about returning to school, “it’s addressing the parents’ fears, and showing teachers how to cater to [the student's] medical, academic, social, behavioral and psychological needs,” said Barbara Acevedo, MSW, coordinator of the STARS program at Broward Health.
Research published in the U.S. National Library of Medicine shows that most people who’ve undergone cancer treatments experience some form of cognitive impairment in what used to be called “chemo brain,” or “chemo fog.”
“Cancer-related cognitive dysfunction” or CRCD, is the term that’s now used to describe problems in short-term memory, attention and processing and the ability to multitask, following chemotherapy, radiation or hormone therapy. Some studies show that it can affect up to 75 percent of people who’ve undergone cancer treatment.
“She has some of that,” said Shannon Aiello, Amanda’s mother. “I did discuss it with the doctor. She’s very bright but she would sometimes forget what she was doing. I’d ask her to do something and she’d go into the other room and forget what she was asked to do. That kind of thing happened quite a bit. It’s getting better."
Dr. Reshma Naidoo, a pediatric neuropsychologist who is the director of cognitive neuroscience at Nicklaus Children's Hospital’s Brain Institute, said one of the biggest challenges in children who undergo cancer treatment is dealing with the decline in the brain’s processing speed.
“When processing is slowed down, it decreases verbal memory and working memory,'' she said. "Word finding becomes a challenge. Overall cognition and awareness is dampened. They’re a little slower in processing information and they miss a lot of things.
“When they’re talking, there’s a delay between what they’re thinking.”
She says parents can help. “The most effective way to increase cognitive capacity and engagement in children is just keep it going like it was before (the cancer diagnosis). Also, have a lot of language. Speak, act and interact. Keep on providing the child with a rich environment. Those are the children that always do a lot better.”
A Memorial Sloan Kettering Cancer Center study found that up to 75 percent of breast cancer survivors who underwent chemotherapy suffered from a range of cognitive issues, including problems with attention, concentration, planning and working memory. The side effects lasted six months to 20 years, the study found.
Some South Florida hospitals, including Nicklaus Children’s and the Miami Cancer Institute — part of Baptist Health South Florida — offer neurorehabilitation via “brain fitness labs” to help strengthen memory, processing speed, planning, reasoning, decision making, organizing and frustration tolerance.
“As the number of cancer survivors continues to grow in this country, there’s been an increasing need to address these cognitive problems that are developing in these patients," said Dr. M. Beatriz Currier, director of the Cancer Patient Support Center at the Miami Cancer Institute. "It’s really been over the last 10 to 12 years that more research is going on with this.”
In 2011, a study found that in a group of 71 women who had been diagnosed with breast cancer, cognitive impairment was found in 23 percent of the women prior to chemotherapy, suggesting psychological factors related to a cancer diagnosis, like anxiety, stress and depression, also contribute to cognitive decline. The study was published in the journal, Supportive Care in Cancer.
Currier points to a few theories of what may cause the condition. One is that some chemotherapy may be toxic to certain parts of the brain. Another is that pro-inflammatory molecules can influence cognitive problems. The third is that genetic factors predispose certain patients to the condition.
Patients treated at the Brain Fitness Lab undergo a comprehensive neuropsychiatric assessment to rule out other conditions that can mimic cognitive decline from chemo — like depression, hypothyroidism and vitamin deficiencies. Kids and adults who are diagnosed with the condition can participate in a 12-week cognitive rehabilitation program, which focuses on increasing attention span and verbal memory.
“It’s absolutely critical for children and teenagers (with CRCD) to do this because their academic performance can really suffer,” says Currier. “If this hasn’t been diagnosed or isn’t treated, the implications are huge.”
“What we’re encouraging patients to do is to do as much cognitive skills training as possible — word puzzles, using smart phones as reminders and alerts to structure your routine, make daily lists and reminders,'' she added. "The idea is to use as much cognitive skills training as you can to ... reestablish those neurocircuits.”
Dr. Jonathan Trent, medical director of the Precision Medicine Initiative at the Sylvester Comprehensive Cancer Center, admits that doctors don’t always do enough to emphasize the toll cancer treatments take on one’s mental functions.
“Many oncologists are focused on the treatment, and don’t always focus on the other aspects such as cognitive function,'' he said.
Sylvester, part of UHealth, has a department of neurology on campus, where neurologists conduct neurocognitive assessments and develop therapies.
Trent says CRCD has multiple causes.
“Any type of chemotherapy causes other problems, such as anemia and fatigue, so these other problems can also play into it,'' he said. "You get side effects from chemotherapy that maybe don’t directly cause cognitive impairment but could indirectly. All of that can impact the way we think.”
Emotions, too, play a role.
“Being diagnosed with cancer leads to anxiety,'' he said. "Anxiety impacts the way one thinks.”
As doctors learn more about this field, they're trying to find solutions.
Says Trent: “The human brain can affect everybody in different ways. You have to understand what the impairment is. Once you understand what the impairment is, then you can help the patients compensate and help them strengthen their capacity in that specific area.”