Schooling children and teens during blood cancer treatment

If your child is unable to go to school during treatment, there are resources available to help them continue to receive an education so that they will not fall behind in their studies: 

• Virtual learning: If your child is homebound, virtual learning may provide the best way to help continue their education.
• Inpatient education: Many children’s hospitals have part- or full-time teachers available to work with students while they are hospitalized. If the hospital or treatment center does not have in-house teachers available, work with a child life specialist or social worker to arrange for a teacher from the local school district to visit your child. While your child is in the hospital, school time tends to be about an hour a day.
• Homebound education: If your child is not in the hospital but isn’t yet well enough to return to school, homebound instruction is an option. Your child’s school district can provide a teacher to come to your home on a regular schedule to teach your child. Programs and rules differ by state and school district. A child who will be out of school for three to four weeks or longer may be eligible for a homebound teacher. Homebound teachers typically coordinate with your child’s regular classroom teacher to plan similar lessons and assignments. 

Returning to school

Most children with cancer will attend school at least some of the time during and after their treatment. Because school is a place for learning and fun, children benefit from returning to school as soon as medically possible.

Yet, returning to school after blood cancer treatment can be a tough adjustment for young survivors. Your child may have reservations about returning to school, including fears about:

• The reaction of friends and other children at school
• Missed schoolwork and social activities
• Changes in their abilities
• Changes in their appearance
• New routines

Discuss any fears your child may have about school before they begin. Help them develop coping strategies for situations they might face. For example, if your child has physical changes from cancer treatment, you should warn them about being teased by other children. Help your child learn ways to cope with teasing—and whom to talk to about it—to provide a sense of control over a situation.

You'll need to ensure that your child's education is started, maintained, or changed as needed. Your child may have long- or short-term side effects that affect their education. Take these steps to ensure that your child gets the support they need at school:

• Reach out to the treatment team. Many hospitals provide support for children as they return to school. An age-appropriate class presentation, either before or after your child returns to school, can let school friends and classmates know that it's okay to discuss the illness. The presentation can be prepared, and possibly given, by a medical team member, who can identify language and concepts the class can understand. If your child has undergone physical changes, such as hair loss, weight gain, or scars, it can help to include this topic in the talk. Your child can participate in a way that makes them comfortable.
• Meet with school administrators, teachers, and counselors before your child returns to school. Make sure the staff are aware of your child's medical condition and address any special needs or concerns with them.
• Let your child meet with their teacher(s) before returning to school to reduce anxiety
• Ask school staff to promptly identify any issues that arise and provide you with relevant information
• Ask your child's doctor to write a letter outlining your child's physical limitations or medical needs, such as the need for extra snacks, water, or bathroom breaks

School personnel may not be aware of the potential for long-term and late effects of treatment; therefore, parents and medical professionals need to inform educators of the child's needs before they return to school. Parents, educators, and medical professionals can work together to develop a program tailored to the child's specific needs.

Resources to help your child be successful in school include:

• Neuropsychological testing or school psychological assessment: Children who are at risk for cognitive effects or who are having difficulty in school should have neuropsychological testing done by a licensed pediatric neuropsychologist (an expert in the way the brain works) to check for possible learning challenges. A school-based assessment may also be an option (or a requirement of the school) to help determine your child’s educational needs.
• Special accommodations: You and your child's teachers can take steps to ease your child's return to school, such as allowing them more time to complete class work or take exams.
• Legal protections: The following three federal laws help protect the rights of students with disabilities, including those with educational needs resulting from cancer treatment:
• The Individuals with Disabilities Education Act (IDEA): Under IDEA, public school children with disabilities may receive an Individualized Education Plan (IEP) that outlines a formal plan to accommodate a child's individual needs.
• The Rehabilitation Act of 1973: Section 504 Plan
• The Americans with Disabilities Act (ADA)
• Long-term planning: Plans can be developed to help a child through certain situations, such as transitioning from middle school to high school or going on from high school to secondary education and adult life.

For more information on returning to school and laws that help protect children, download or order the free Blood Cancer United booklet Learning & Living with Cancer: Advocating for Your Child's Education Needs.

See Worksheet 15: Information for School Staff.

The Trish Greene Back to School Program

The Trish Greene Back to School Program offers free information and materials to parents and educators that can help ease your child back to school after an absence. The program was developed to encourage communication among parents, young patients, healthcare professionals, and school personnel to assure children a smooth transition from active treatment to back to school.

Staying Connected®: Facilitating the learning experience during and after cancer treatment Staying Connected® is a FREE, online professional development program for teachers, school nurses, social workers, school counselors, and other school and college personnel focused on the needs of children, adolescents, and young adults who have survived or are being treated for any type of cancer. This interactive educational program offers 6.5 continuing education credits and provides information on:

• Cancers that affect children, adolescents, and young adults
• Psychosocial challenges and strategies to help meet the students’ needs
• Education laws that protect survivors’ rights
• Strategies to help cope with grief and loss
• Resources to support schools and families  

 Learn more about the Trish Greene Back to School Program.

Blood Cancer United’s free booklets and videos

• Caring for Kids and Adolescents with Blood Cancer: A Workbook for Families: This workbook is written for the parent/guardian of a minor child (up to age 18), and includes information about caring for your child, treatment options, school, nutrition, financial and legal issues, and more. This Family Workbook includes a set of set of worksheets and activities and includes a tote, journal, pen, and pill organizer.
• Stars Will Twinkle, The Sun Will Shine: This is a three-book series for young patients and their families about Olivia, a girl who has been diagnosed with leukemia. The series follows Olivia and her family as she is diagnosed with leukemia, goes to the hospital for treatment, and returns to school. Also available in Spanish: Las estrellas brillarán, el sol también.
• Learning & Living with Cancer: This booklet can help parents advocate for their child's educational needs. It examines the learning challenges your child may face both during and after cancer treatment, laws that protect the educational needs of children with cancer, and specific ways that schools can help meet a child's educational needs. (Also available in Spanish.)
• Beyond Treatment PDF: This chapter provides information about long-term and late effects of childhood cancer treatment to help parents understand these effects and provides guidance and resources for dealing with them.
• Pictures of My Journey Coloring Book: This coloring and activity book can help children ages 3 to 11 cope with the new people, situations, and concerns that are part of the childhood cancer experience.
• The Stem Cell Transplant Coloring Book: This coloring and activity book is for children coping with having a stem cell transplant and for their siblings and classmates, as well as for children with a parent undergoing a transplant.
• Why, Charlie Brown, Why? This video tells the tale of a classmate who is diagnosed with leukemia. Using Charles Schulz's lovable Peanuts characters, the video helps children understand what leukemia is, how it's treated, and how a child recovering from leukemia feels. When a classmate teases the girl because she has no hair, her friends rally around her and help the other children understand why his remarks were hurtful. Produced by Charles Schultz and United Media. 

For more information about The Trish Greene program, contact an Blood Cancer United Information Specialist.  

Before her death from cancer in 1999, Trish Greene, PhD, was the senior vice president of Patient Services at The Leukemia & Lymphoma Society. She was devoted to patient services for cancer patients and created the organization’s Back-to-School program. Her devotion to patients and their families will never be forgotten. 

Virtual learning

The use of virtual learning is an accessible and practical option to connect homebound and hospitalized children to their classrooms. Check with your child’s school to learn what virtual learning platforms and tools your child needs to attend virtually if they are not doing so already.

The use of virtual learning aids in:

• Minimizing the child’s isolation
• Keeping the child's education on par with their peers, so they don’t fall behind academically
• Regaining and maintaining an aspect of the child's "normal" life
• Providing peer-to-peer real time engagement
• Bridging a gap if the child is treated outside of the school district or if they can't have a tutor because of contact isolation
• Allowing the child to focus positively on the future of life and educational goals
• Minimizing long-term psychological and mental survivorship issues
• Allowing classmates to interact with the child and develop empathy, expanding their understanding of diversity and inclusiveness

Making the most out of virtual learning

• Build your team: Start by engaging the school's principal, counselor, special education, or student services director. Let them know you would like your child to be virtually connected during their treatment.
• Request in writing the use of virtual learning at your child’s 504/IEP meeting: Ask that the technology director of your school district be present at the meeting. Oftentimes school districts already have these technologies in the district—just not in use for a homebound/hospitalized child.
• Stress the important benefits for keeping your child connected during homebound/hospitalization and the benefits to their classmates (see above section)
• Talk with your hospital hematology/oncology education director: There may be a program already in place that provides for the use of virtual learning while your child is a patient at the hospital.