In November of 2014, Max Lightner got a horrendous diagnosis. At age 6, he had a brain tumor—medulloblastoma. His education, and everything else, was a distant thought. Life was about survival—surgery, radiation, chemotherapy—whatever it took. Thankfully, cancer treatment has progressed far enough that many kids like Max can and do make it through.
Max’s mom said she was shocked to find their school system unable to properly address the specific learning challenges faced by a cancer survivor, and there were so many hurdles. “I think I cried more dealing with the school situation,” she said, “than over the cancer.” She wondered why it had to be so hard.
Three Johns Hopkins professionals are convinced it shouldn’t be that hard. They’ve recently begun a unique project they hope will help families like Max’s, and those of the nearly 16,000 children diagnosed with cancer each year. It’s aimed at identifying the most challenging education issues faced by survivors and providing concrete solutions to those problems in concert with medical teams, school administrators and teachers.
The new project was inspired by countless stories like the Lightners’. Dr. Juliana Paré-Blagoev, an assistant professor at the Johns Hopkins School of Education, first began thinking about the work because of a longstanding interest in the disconnect between research and actual practices. She wanted to find ways to address such issues by better integrating knowledge of biology and behavior. When she came across a study of adults who had cancer as kids that showed how much better they fared if they got the educational help they needed, and how poorly they performed without it, she saw a problem that would require just such integration to solve.
With further research she would learn that while post-treatment cognitive troubles are well-documented for child cancer survivors, few studies had looked at the relationship between such symptoms and quality of life, and even fewer actually involved the families of patients in identifying problems and working out solutions. It seemed clear that there was a need for much better understanding of the process of survivors reentering school and of the social and academic challenges they face. “I thought, ‘Obviously we know something about how to help kids,’ she said, ‘but obviously we don’t know something about how to communicate with families and schools.’”
She hoped to play a role in fixing that, so she began collaborating with Dr. Lisa Jacobson, a neuropsychologist and director of the Kennedy Krieger Institute’s Neuropsychology Pediatric Oncology assessment clinic, and Dr. Kathy Ruble, director of Johns Hopkins Hospital’s Survivorship Program, part of the Division of Pediatric Oncology. Together, they turned to the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit organization created through the Affordable Care Act that funds research that can improve patients’ lives. One specific goal is to support research guided by patients, and that’s exactly the intent of the team’s work.
Best and Worst of Times
The overall survival rate for pediatric cancer is now an astonishing 83 percent. But more than 75 percent of children who undergo the harshest cancer treatments will experience some level of cognitive impact and, depending on the type of cancer and treatments, 40 to 100 percent will still be experiencing issues five years after treatment.
In general, the troubles come because aggressive therapies can damage the brain’s white matter, the material that forms the connections between portions of gray matter—where brain functioning occurs, including learning and language. “You aren’t going to function as quickly, you aren’t going to learn as well,” said Dr. Jacobson.
But the cognitive impacts and their effects on a child’s learning are wildly different depending on cancer type, the location of tumors, how severe the disease is and a host of other factors. Sometimes the problems are extremely pronounced, as with Max, while sometimes the problems are subtle and more difficult to identify. Typically, core functions, such as attention and processing speed, decrease and over time can lead to lower IQ and reduced achievement. “Many kids are surviving, which is fantastic, but there’s a cost,” said Dr. Jacobson, “Treatments like radiation are effective, but they carry a burden.”
When a child has just been diagnosed with cancer, a parent may hear such facts and statistics, but they are unlikely to register, and rightly so. At that stage, all anyone can focus on is survival. This means that in many cases, once in survival mode, parents are not prepared for what they are up against and often lack the tools they need to help their kids get back up to speed in school. Their schools may not be any better prepared.
Cancer is rare enough that a school may not ever have dealt with the issues unique to cancer survivors. “Because childhood cancer is not that common, teachers could go their entire careers and never have a cancer survivor in the classroom, so I’d certainly never fault them for not having that experience,” said Dr. Ruble.
Many parents feel like the public school system in dealing with learning issues involves immersing related challenges in a soup of acronyms and numbers. There are forms for evaluations, forms to request plans be drawn up to address a child’s needs. It can be a daunting mess. “I thought, ‘Don’t you understand what we’ve been through? I can’t believe you’re giving us a hard time over silly, trivial matters,’” said Madilyn Lightner, Max’s mother.
A Disconnect
When it comes to cancer treatment, there’s generally a clear path. Doctors have a schedule for every treatment, surgery and chemotherapy dose. That’s their job. They are, of course, aware of cognitive issues that can arise as a result, but many don’t know how to advise families effectively on how to deal with them, certainly not in the way that they can advise a treatment regimen. Typically doctors only receive about an hour of training during medical school on how to address these cognitive issues.
“You rely on the doctors so much, you trust their opinion,” said Lightner, “You know you’re in good hands, but when it comes to the educational component it’s sort of an afterthought—as it should be. The focus is on the medical, but the educational still needs to be addressed.”
Going Back
At first, Max’s parents just wanted him to get back into school to spend a little time with his class. Full days and a workload were still out of the question in the earliest stages. Everyone was accommodating. His first trip back was the Valentine’s Day party in 2016. But really getting him back into daily school would be much more difficult.
There was a mound of paperwork to arrange for home teaching during the treatment, but getting Max back into school was worse—a process, said Lightner, that felt like trying to gain top-secret clearance. They needed to fill out forms, get letters from their doctors, establish plans for scrubbing down rooms to protect Max’s fragile immune system.
Max needed to return to school gradually, but that threw his eligibility for home teaching he still needed out of whack. It was a teacher friend—not their school or the medical team—that told them they had to establish 504 status. “I had no idea what that was,” said Lightner. The 504 status prohibits discrimination based on disability, and it was just one of a few steps they needed to take.
Before Max could return full time, they needed a neuropsychological examination. It can be an intensive and time-consuming process, so not all cancer survivors receive it. Max underwent extensive neuropsychological evaluation through Kennedy Krieger—standard protocol for a brain tumor. But the school system’s policy was that they had to do the evaluations themselves, even though they were repeating tests already done by experts at a premier institution.
Once the Lightners cleared the hurdles to get Max established back in school full time, there would still be struggles. Early on he was having trouble with words and had to have someone reading to him to help him keep up with the material. But then the school determined he was no longer eligible for that help because certain official standards had changed. He was having major troubles with handwriting and needed occupational therapy, but he didn’t qualify for that either. Now he’s getting bad handwriting grades and they are trying to get the school to reassess his status.
Every step of the process and every piece of the help Max needed ended up being a struggle, though not because people at the school didn’t want to help. Many of the school staff were compassionate and doing their best to be helpful and supportive as the family navigated a complicated system.
“I think that’s what makes me the saddest,” said Dr. Ruble, “when it’s expected for kids to need resources that are not in place. By the time it comes to my attention, the kid is failing, or frustrated, or giving up.”
And Max’s case was as clear-cut as they come. After surgery, he had a literal hole in his brain, and the lifesaving treatments had direct, obvious impacts. He had to relearn to walk and to talk. For many kids, the impacts can be more subtle, making them even harder at times to address because parents have to push even more for schools to see and address the needs.
One confounding factor is that learning issues tied to cancer treatments often don’t look like other impairments. Problems may not show up immediately or they may get worse over time, which is not usually the case with typical learning disabilities.
And there can be numerous other complicating factors. Early on, survivors may have stamina issues, meaning they can’t attend school every day. But some school guidelines mandate that additional services only be made available if a student is in the classroom a certain number of days. Otherwise, at least in the bureaucratic sense, the problem can be chalked up to insufficient instructional time.
Many, if not most, parents end up like Max’s family, seeking help wherever they can find it, but never knowing what they’re missing. “You’re kind of swimming—bobbing up and down looking for an island or raft to climb up on,” said Lightner.
Based on more advice from a teacher friend, the Lightners learned that there are advocates for hire who help families understand the process, make sure they are doing everything needed and review everything coming from the school. So they decided they needed to hire one. Eventually they would also hire tutors and, while these expenses were not ones the family could easily afford, for them it was doable. Lightner worries about families facing the same struggles that have no such options because they simply cannot afford them.
Seeking Solutions
The PCORI-funded, two-year engagement project called Surviving Cancer, Thriving in Life: Health-related Quality of Life after Pediatric Cancer, is already well under way. The team has assembled a diverse group of survivor families, doctors, related healthcare workers and school leaders to take part. They’ll join workshops and structured conversations, and many will work on taskforces that can dig further into specific topics and produce any needed informational products. The researchers are also developing an extensive survey to distribute nationwide, with the goal of ensuring that their overall results and actions will be broadly applicable to a wide range of survivors, not just those from the Baltimore area. And the team is also reviewing many available materials to catalogue the most helpful materials and to identify gaps they can fill.
The plan is to have a series of roundtable discussions with the group, as well as a range of discussions with individuals and smaller focus groups. Based on the outcomes of these discussions, they will outline key struggles faced by survivors in schools and develop concrete plans and resources aimed at eliminating, or at least easing, those struggles.
Ultimately the researchers hope to produce a comprehensive guide for families on where to find helpful resources and step-by-step details on what families need to be doing at various stages in treatment and beyond to ensure their child gets all the help needed at school. And in conjunction, they’ll produce recommendations for health care providers and educators so that they all can be better-equipped to support patients and families. The work will also generate new research questions guided by issues that affected families consider critical.
Participating families have already emphasized how valuable it would be to have a network of mentors—parents of survivors and others who have navigated the challenges of survivor education and are willing to guide parents and work as advocacy resources. Lightner, whose son is now 9 and doing well 16 months after his final chemotherapy, said this kind of guidance is what they most needed.
“This shouldn’t be a mystery,” said Dr. Ruble, “This should be something we anticipate and know how to deal with. It shouldn’t be that the stars have to align so well for this to work out for these kids.”
The names of Max and Madilyn Lightner are pseudonyms in order to protect their privacy.
