You might be forgiven for thinking that for a child or teen diagnosed with cancer, school would be the last thing on their mind.
But intensive treatment, like chemotherapy, takes many kids with cancer out of the classroom for a lengthy period, causing concerns for kids and parents that they’ll fall behind. “They do worry about school,” says Laurie Leigh, director of the St. Jude School Program by Chili’s at St Jude’s Children’s Research Hospital in Memphis, Tennessee. Even with a good prognosis, as an increasing proportion of kids survive cancer, many still face formidable challenges beyond fighting the cancer itself, including being out of school for a long time. That can leave them worrying about things like whether they might fail or have to repeat a grade, Leigh says.
Of course, that only adds to the initial, overwhelming nature of a child’s diagnosis with cancer for the family. “When she was first diagnosed … I felt like my heart fell out of my body — it was just devastating to hear the word cancer, because it’s such a scary word,” says Sywanda Smith, whose daughter Da’Maya Smith was diagnosed with cancer in September 2016 at the age of 9.
[See: 10 Concerns Parents Have About Their Kids’ Health.]
Da’Maya was attending the fourth grade at a school in Baton Rouge, Louisiana, when she began treatment for rhabdomyosarcoma — a type of cancerous tumor — at St. Jude Children’s in Memphis. “I didn’t really think about school,” says her mother, Sywanda. “Everything just really happened so fast.” Fortunately, she says St. Jude was on top of it, and worked closely with her and Da’Maya, and the school she was attending, to help Da’Maya continue her education even as she underwent chemo.
She received an hour of instruction for three days each week at the hospital. Though significantly scaled back due to her intensive treatment, the instruction she received at St. Jude was enough to keep Da’Maya on track to stay at her current grade level — no small feat considering Da’Maya’s treatment spanned the entire rest of her fourth grade year and continued into this fall.
St. Jude has teachers on staff and a nationally accredited school with a couple classrooms on site to provide instruction to pediatric patients in kindergarten through high school. “Our kids are going to school here, while they’re here during treatment,” Leigh explains. “School is really as much individual instruction as we can do. We see our kids three hours a week.” That instruction happens where kids are able to get it, whether in an onsite classroom or at the bedside. “If that child is an inpatient and cannot come to the classroom, that teacher will go to see that child in the inpatient area,” Leigh says.
St. Jude collaborates with the child’s community school. That involves reaching out to the school and the child’s teacher, Leigh says, to get the child’s books and assignments and an understanding of what the child would be doing in the classroom to determine what’s most important to focus on while that child is in the hospital. “Our goal is to get them to the next grade,” Leigh says. “We want to make sure that our kids progress — that they progress as normally as possible,” she adds, to keep cancer and its treatment from interrupting that.
Of course, not every child diagnosed with cancer needs to be pulled from school for months at a time. “For some children who are diagnosed with cancer, the type of tumor or disease may simply require resection — they have the tumor taken out, they don’t need chemo, they don’t need radiation,” says Lisa Jacobson, a pediatric neuropsychologist and director of the oncology follow-up clinic in the neuropsychology department at Kennedy Krieger Institute, a children’s hospital in Baltimore. “They don’t potentially need an extended hospitalization. They go right back to school as soon as they’re physically healed.”
But many kids diagnosed with cancer do miss a lot of time in the classroom. “For example, the majority of children that have leukemia — acute lymphoblastic leukemia — may be out of school for a period of time, maybe the first six months of their most intensive chemo,” Jacobson notes. “Then depending on their age, and how they’re tolerating their treatment, they may go back to school at that point. But they still have two more years or so of treatment left. So they’re potentially back in school while they’re undergoing the rest of their chemotherapy regimen.”
Though Kennedy Krieger doesn’t treat cancer, it assists children dealing with the condition, helping them participate as fully as possible in everyday life, including school. “The clinic that I’ve developed provides neurocognitive assessment for these children,” Jacobson says. That includes looking at the so-called late effects of cancer treatment, and the impact of the disease and their treatment on kids’ ability to access education as well as in other areas, like social interactions.
[See: 10 Essential Items to Pack in Your Child’s Hospital Bag.]
Chemotherapy medication used to treat leukemia — the most common childhood cancer — as well as radiation can put kids at risk of cognitive and learning problems. Even surgery — like if a child has a brain tumor removed — can have an effect, as can fatigue resulting from chemo or radiation that makes it difficult to concentrate and keep up in the classroom.
Experts say kids frequently need more time to complete tests or assignments, may only be able to handle smaller workloads when they first return to the classroom and require other accommodations; this can lead to the need for an an education support plan, like what’s called a 504 plan outlining services a student needs, as they transition back into full-time school.
It can be difficult for families and students to access such accommodations, however, without help. And schools can struggle to meet kids where they are. Nor is there a simple one-size-fits-all approach, since children’s experiences with cancer and treatment protocols differ. Kids touched by cancer don’t, for example, typically fit neatly into disability classifications under the Individuals with Disabilities Education Improvement Act that entitle them to special education if they need it. “Thankfully childhood cancer is quite rare, and so schools and their staffs typically don’t encounter many students with cancer on a regular basis,” Jacobson says. “So they may feel unprepared as well, and they don’t know what the student needs. They don’t really understand how to address what those needs might be.”
Jacobson is a co-principal investigator of a federally funded project called “Surviving Cancer, Thriving in Life” that’s assessing those challenges, drawing on the perspective of families of cancer survivors, school nurses, special educators, oncologists and many others who may be personally or professionally involved in the journey of a child with cancer back to the classroom.
“I had one family tell me that going back to school was even harder than fighting cancer,” Jacobson says.
Despite the challenges families and schools face, experts say there are resources available to help.
“A parent going into a children’s hospital should definitely ask about school services,” Leigh says. It may be the hospital has teachers on staff, like St. Jude does, or that it has teachers from the local school system come to the hospital to provide instruction. Leigh recommends also checking out national resources, such as the Association for the Education of Children with Medical Needs and Association of Pediatric Hematology Oncology Educational Specialists, to learn more about educational options for those undergoing treatment for childhood cancer.
Leigh suggests parents make sure they have a liaison to serve as a bridge between the hospital or clinic where a child gets treatment for cancer and the child’s school. This could be a social worker, a teacher on staff at a hospital or child life specialist (a health professional who works with kids to help them cope with challenges — including educational ones — related to illness, injury and treatment). Just as you should in regards to a child’s diagnosis and treatment, experts advise asking ample questions to clear up what the transition back to school will entail. And don’t ignore concerns about a child’s functioning or cognitive abilities.
“If parents have any concerns, they should consider a neuropsychological assessment, especially if a child was exposed to central nervous system-directed therapy, such as intrathecal chemotherapy or cranial/cranial-spinal radiation,” Jacobson says. “This can be done by a neuropsychologist or clinical psychologist, and can often be accessed by asking the oncology team to refer the child.”
Experts encourage parents to open communication with school officials and a child’s teachers, as well, and provide information about the child’s specific needs. Put any request to the school to evaluate the child in writing. The Individuals with Disabilities Education Improvement Act requires that school teams must respond to written requests, Jacobson says.
Of course, experts stress, working all this out takes perseverance. But it’s important to let everyone know what challenges the child faces, and collaborate to give him or her the best chance to have a smooth transition back to the classroom.
[See: Which Practitioner Do I See, and When?]
Da’Maya, who is now 10, wrapped up chemo in October and has returned to the classroom. She’s now in the fifth grade and has a goal of “making A’s on my report card,” she says. By all accounts, she’s on track to do more of just that — having received a couple A’s on her first report card since coming back.
Da’Maya has completed her treatment for cancer and will return to St. Jude for follow-up visits. “There’s no evidence of the disease right now,” Sywanda says. “She is doing really well,” she adds — inside and outside the classroom.
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Back to School After a Cancer Diagnosis originally appeared on usnews.com
