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READ MOREPublished on September 5, 2024 in Educational Resources
Many parents feel back-to-school jitters as the new school year begins, but these emotions can be amplified when your child is returning to school after a brain tumor diagnosis. The road back to the classroom after surgery and/or treatment can be complex. To help, we’ve gathered insights from experts and families who have been through this journey, offering guidance on how to navigate this challenging time.
When you learn your child has a brain tumor, school might feel like the furthest thing from your mind. By involving the school early on, you create a partnership that can address both immediate needs and long-term considerations, ensuring that your child’s educational experience is as supportive and uninterrupted as possible during this challenging time.
Informing the teacher allows them to be aware of your child’s situation and provide appropriate support. Often, schools have digital student portals where the parent/guardian and/or child, if older, can connect directly with their teacher. In the short term, after receiving a brain tumor diagnosis, send a quick note to your child’s teacher via the portal and briefly update them to the extent you’re comfortable. It could be as simple as “My son is currently in the hospital for an emergent medical situation, and we’re not sure when he’ll be back at school. I’ll update you when I know more.”
Communicating with the school — through their office or attendance app, email, or hotline — is equally important, as it ensures that your child’s absences are documented correctly and that the school understands the reasons behind any extended time away. This notification helps prevent unnecessary truancy concerns and frustrating attendance robocalls.
While this might look different for a college student, open communication can go a long way with professors and administrators.
“I think you have to be as communicative as you are able and willing to be,” said Alex E., who was diagnosed with pineal germinoma as a senior in college. “My major was pretty small, so I knew all my professors fairly well. I talked to them even in the brief interim before I had my surgeries. I wanted to lay out what’s happening and ask how we can make this work.”
Your child’s school nurse will be incredibly helpful for their school re-entry, which is why it can be beneficial to give permission for someone from your child’s health care team (e.g., social worker, nurse, child life specialist, or hospital teacher) to connect with the school nurse early on.
“My first priority is to reach out to the nurse, talk about the diagnosis, and give them information,” said Mary Beth Nichols, CCLS, a Child Life Specialist at Melodies Center for Childhood Cancer and Blood Disorders. “I can fax them a letter with more details and then send my school re-entry pamphlet — even though the child is not going back yet — to help provide support. In the letter, I might explain that we’re going to need a 504 for this child. I try to avoid giving any predictions and stick to what is presently happening and needed now.”
Sharing information about a student’s diagnosis with their classmates in an age-appropriate manner can encourage connection and understanding by breaking down barriers of misunderstanding and fear.
With your family’s permission, the teacher could send a letter to their classmates’ families to share more about the diagnosis and treatment along with how their classmates can be most supportive of the student. It’s up to your family’s discretion to determine how much information you’re comfortable with being shared.
For example, one family may want to avoid using the word cancer. In this instance, the teacher or health care representative can tell classmates that the student is sick and in the hospital. Another family may want to share specifics about the diagnosis. In this case, the teacher or health care representative can help educate classmates in an age-appropriate manner.
When classmates know about the student’s circumstances, the school can look for additional opportunities to build connections between your student and their classmates.
“If you can keep open communication, you can ensure that your child has a continued connection with their teachers and their classmates,” said Kari C., whose son Kai has grade 3 anaplastic ependymoma.
For the child, maintaining these connections helps reduce feelings of isolation and provides a sense of normalcy and continuity during a challenging time. It keeps them engaged with their social circle, which can be a source of emotional support and encouragement. For classmates, staying connected with the student fosters empathy and understanding, helping them to grasp what their friend is going through and offering opportunities to show care and support. This ongoing connection also eases the eventual transition back to school, as the child remains a part of the class community, making it easier to reintegrate when they return.
Mary Beth explained, “It makes their treatment bearable when they can see their classmates on the other end yelling for them or saying, ‘We miss you.’”
Opportunities for connection can look like:
“For the past six months since Kai has been out of school, we do a couple of Zoom sessions per week with his class,” Kari said. “When his class would normally be doing reading time or their morning meeting, they’ll just Zoom him in. That way, he keeps that connection so he doesn’t go for six months without seeing anyone.”
The Monkey in My Chair program was initially developed to help preschool and elementary-aged children who are away from school due to a cancer diagnosis. According to the program’s website, “Each child is provided with a monkey kit, which includes a big stuffed monkey that takes their place in school when they are unable to be there.”
Mary Beth encourages her patients to participate. “It’s a wonderful program because there’s a teacher resource booklet right in the bag, and it gives activities to do with a class — even activities to talk about feelings. It has a children’s book about a monkey who gets sick.”
These free kits also include online access to Monkey Message, a portal allowing the patient and classroom to share pictures and documents.
“When Elsa had her emergency surgery, I called the school,” said Maribel, whose daughter Elsa has pilocytic astrocytoma. “The hospital has a teacher, so she introduced herself and explained the Monkey in My Chair program. We signed up, and a stuffed monkey sits in place of Elsa at school while she is in the hospital.”
A student may be able to participate in school virtually before they can return to school in person on a part-time or full-time basis. Parents or someone from their child’s health care team can ask the school if they are able to do virtual learning.
“Some schools are awesome about virtual learning,” Mary Beth explained. “A student can say, ‘Oh, I might want to do some math because I had radiation this morning, but I’m feeling OK. I’m going to log into Google Classroom.’ Participation can vary by how they’re feeling.”
In addition to virtual learning, the child’s hospital or school may offer other educational options, such as hospital-based tutoring programs or homebound instruction offered by the student’s district. Options vary based on location and student’s circumstances, so families are encouraged to speak with their social worker or child life specialist and their school to learn what options are available to their child.
The timing of re-entry for students living with a brain tumor varies depending on their symptoms and side effects, the treatment they’re undergoing, and whether additional therapies are needed to relearn how to talk and/or walk.
“It really depends on the [tumor] type,” said Lauren Weintraub, MD, Director of the Pediatric Neuro-Oncology Program at Albany Medical College. “A lot of kids with low-grade gliomas are getting oral chemotherapy now, so once they recover from surgery, it’s pretty easy for them to go to school even though they’re getting treatment. Even the kids with low-grade gliomas who get IV chemotherapy can still go to school. I’ve had a few kids who will plan their chemo on Friday afternoon so they know they’re going to feel kind of crummy on Saturday, but then they don’t miss school. Whereas other brain tumor diagnoses, like medulloblastoma, have treatment that is so intense. Some patients will go for a few days in between the really intense parts of chemotherapy, but I usually tell them you’re going to miss most of school.”
When determining a return-to-school timeline, considering your student’s medical condition and state of mind is crucial for ensuring a successful and sustainable re-entry.
Ethan S., who was diagnosed with pineal germinoma at 12 years old and later earned a PhD in school psychology, looks back at his childhood experiences and advocates for parents to think about what return-to-school timeline makes the most sense for their child.
“Sometimes the kid’s going to be gung ho about just returning to normalcy and being back in the school environment,” Ethan explained. “In thinking about my experience adjusting to vision loss, I probably should have done a more gradual re-entry process, starting out with more half days before going back for a full day.”
Some kids benefit from taking a break from school during the most active parts of treatment, while others are motivated to return as soon as possible.
“For a lot of kids, school is a huge part of their life, and it makes a big difference if they can go back to school,” Dr. Weintraub said. “I’ve had a few patients recently who were able to go back for the end of school right before it finished, and it made a big impact for them. And then I have some patients who, academically, it’s really important [to return]. They’re very driven and just don’t want to fall behind.”
For Alex, his diagnosis came when he was just months away from college graduation at George Washington University, and he was determined to complete his classes as soon as possible.
“I really wanted to walk with my class, and I knew that I was not going to be able to complete my actual work on time,” Alex explained. “I spoke to [the university] pretty early about it, explained my situation, and they were kind enough to let me wear my cap and gown and walk with my class.”
Understanding your child’s concerns about returning to school is crucial in making their re-entry as comfortable as possible.
They may be anxious about their visible changes, such as a craniotomy scar or hair loss, and how their peers might react. Addressing these worries head-on is essential. For instance, if your child is concerned about their appearance, you can advocate for them to wear a hat or head covering, even if the school typically has a no-hat policy.
If your child is concerned about answering questions from their classmates, you can prepare them for questions they may receive and how they might want to answer them. American Cancer Society shares a few examples of quick responses a student can give when they don’t want to get into a long explanation.
By discussing these concerns with school administrators and teachers, you can work together to create an environment that supports your child and helps them focus on their learning rather than their worries.
“The biggest fear I hear from students is whether they can keep up with their schoolwork,” Mary Beth said. “They want it so bad because they don’t want to be the one holding back their classmates.”
According to Mary Beth, every student with a brain tumor will likely need a 504 or an IEP to assist the student in their re-entry. The child’s needs will determine which option is most appropriate. A 504 Plan and an IEP are both designed to support students with disabilities, but they serve different purposes and have different legal frameworks.
“It’s something that I put in my initial medical letter to the school that we’re requesting one,” Mary Beth shared. “We always try to keep [the 504 or IEP] as long as possible. Rarely do they need an IEP and a 504, as they’ll just incorporate all of those modifications into the IEP.”
The type of support or modifications needed will vary from patient to patient, depending on tumor type, location, and treatment.
“It really depends on each patient because that’s the thing with brain tumors,” Dr. Weintraub said. “When you have a patient with leukemia, it’s kind of like every patient’s the same — they go back to school with a port. They go back to school with no hair. They go back to school immunocompromised. Whereas with patients with brain tumors, some have trouble seeing, some have trouble walking, or all of a sudden, they’re not learning well or speaking well. It’s just so variable.”
Modifications may include but are not limited to:
“I think it’s really important for schools to work with the student and the family to help address any changes to functioning that occurred as a result of the tumor or treatment,” Ethan shared. “I had a 504 plan growing up. That was really helpful for me, giving me extra time to complete tests and assignments.”
The same laws also mandate equal access for students in post-secondary schools, allowing students to request reasonable accommodations.
When classmates are informed about the student’s condition and visible changes, such as scars or hair loss, it can help reduce curiosity, prevent bullying, and promote empathy. Even if a letter has already been shared with classmates and their families, their classmates may have questions about the student’s return to school. A teacher can provide more information, or a child life specialist or social worker from the hospital may be able to make a developmentally appropriate presentation to the classroom.
“I always give the choice to the child if they want to be in the classroom when I’m doing the presentation,” Mary Beth explained. “Nine times out of 10, they always want to be there. This presentation helps empower the classmates because they’re part of this team and on this journey with the child. It also shows the child watching that their classmates really care about them.”
This discussion with the class can also emphasize to students why it’s important for them to cough into their elbows instead of hands and to follow good hand-washing protocol because an increased risk of exposure to illnesses can be dangerous to an immune-suppressed student.
When the teacher can proactively provide developmentally appropriate information and prepare their classmates, it helps normalize the student’s experience, making their transition back to school smoother and less stressful while ensuring they feel included and supported by their school community.
“If we’re honest and simple upfront, we’re building trust with those classmates,” Mary Beth said.
Ethan was diagnosed in sixth grade and returned as a seventh grader in a different building for junior high school.
“It was a huge adjustment,” Ethan said. “I experienced a stroke after my recovery from surgery. As a result, that took away some of my vision, and I have really bad peripheral vision on my left side. Coming back to school, I didn’t know what the extent of my vision loss was. It was really difficult for me being in a new school. I would get lost constantly in the hallways of the school building because of my vision loss.”
As unexpected difficulties arise, notify the school and advocate for changes and any needed accommodations after your child returns to school.
After facing a brain tumor, it’s natural for students to feel pressure to return to their previous performance levels immediately. It’s important to remind them that adjusting to school life after a serious illness is a process that takes time. They may experience fatigue, difficulty concentrating, or emotional ups and downs, and that’s OK.
By encouraging your child to be patient with themselves and accept that it’s normal to need extra support or to advance at a different pace than their classmates, you can help them prioritize their health during their transition back to school.
“I think you need to remember to be kind to yourself,” Alex said. “This huge crazy thing happened, so it’s fine that everything didn’t go to plan. At one point during chemo, I got brain fog from the chemo and would struggle to read a book or understand an assignment. I had to remember that it’s OK to focus on your health at hopefully the hardest time of your life.”
While brain and other CNS tumors are the most common form of solid cancer in children in the U.S., treatment options for children with brain tumors are far too limited. For adolescents and children with a pediatric brain tumor diagnosis, it’s time for a better chance.
Childhood Cancer Awareness Month (CCAM) is a time to recognize, advocate for, and honor children who have been affected by cancer and the families that care for them. This September, the National Brain Tumor Society invites you to make a gift and help NBTS continue to accelerate pediatric brain tumor research, advocate for change, and provide connection and navigation to children and their families.