Return to flip book view
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 1Levi, 4MedulloblastomaFor EducatorsCHILDHOOD CANCERTOOLKITEDUCATION
2 Childhood Cancer Education Toolkit© 2024 ASK Childhood Cancer Foundation (ASKCCF). All rights reserved. Developed by: Alma Morgan, Associate Director of EducationThis publication was supported by the Grant or Cooperative Agreement, Number NU58DP006324, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the ocial views of the Centers for Disease Control and Prevention or the Department of Health and Human Services. 2024 revisions funded by the Virginia Department of Health.POST-TREATMENT CHALLENGES05 Most Common Physical Challenges09 Most Common Cognitive Challenges12 Most Common Social & Emotional Challenges15 Most Common Job-Readiness Challenges04 What’s in Your Education Toolkit17 School Health Plan18 Education Plan24 Classroom In-ServiceTable ofCONTENTSTOOLS FOR FAMILIES AND SCHOOLS
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 305 Most Common Physical Challenges09 Most Common Cognitive Challenges12 Most Common Social & Emotional Challenges15 Most Common Job-Readiness Challenges04 What’s in Your Education ToolkitApproximately 350 children in Virginia are diagnosed with childhood cancer every year.Treatment for childhood cancer can create challenges that show up in the school setting. These “late eects” from treatment impact how a student thinks, remembers, moves, plays, communicates, and socializes.Parents will be most concerned with making sure their child’s needs are met and that they’ll feel safe at school. Sta and faculty will wonder how best to meet this student’s needs in their classroom. If you have questions about this guide or your next steps, reach out to ASK Childhood Cancer Foundation to speak with an Education Support Navigator.Descriptions of late eects and possible accommodationsStep-by-step instructions for creating a school-based support plan for the studentLinks to additional resources to help ease the transitionThis toolkit will help you equip your team and answer questions that parents, faculty, and staff may have when a student transitions into the educational setting. Inside, you’ll find:From preschool to college and beyond, 2 out of 3 students will have at least one late effect after cancer treatment.WHAT’S INSIDE
4 Childhood Cancer Education ToolkitAfter treatment, the student may experience small or big changes in how their body moves and what they need to do to care for themselves. Some are easy to see, and some are not. Physical challenges can aect the school day and their studies.Most CommonPHYSICALCHALLENGESFatigueUnsteady gaitMuscle weakness & low staminaHearing & vision lossNeuropathyGross & fine motor skills deficitsMood swingsNausea & vomitingAltered physical appearancePainAT A GLANCE:Harry, 11B-Cell Acute Lymphoblastic Leukemia
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 5CHALLENGESThis chart shares some examples of challenges and the kinds of accommodations that may help.DefinitionsChallenge What it meansPossible accommodationsFatigue Fatigue is a side eect of chemotherapy and radiation that can last for an indefinite period of time following treatment.• Attend school for a “partial day” (morning or afternoon classes)• Rest period during the school dayMuscle weakness and low staminaStudents may not have the strength or energy they typically have. It can come and go depending on the amount of activity they can handle during the school day. • Participate in physical activities as tolerated• Alternative activities for PE class and recess • Extra time to walk to their next classNeuropathy (pain or numbness in hands or feet)Neuropathy is weakness, pain, or numbness in the hands or feet that impact walking, climbing stairs, completing fine motor skills tasks, or writing for a long time. Pain and discomfort can interfere with attention, concentration, and stamina.• Modified or shortened assignments• Assistive technology when writing long assignments• Elevator passMood swings Taking steroids as part of treatment can aect sleep, appetite, and the ability to regulate emotions. Children may be extremely tearful, irritable, and sad. They may have “temper tantrums” or emotional outbursts.• Additional snacks at school when taking steroids• Rest period during the school day
6 Childhood Cancer Education ToolkitChallenge What it meansPossible accommodationsAltered physical appearance (changes in how they look)Children and teens are often sensitive to visible changes such as: • Thinning hair/hair loss• Weight loss or gain• Scarring from surgery and other medical procedures• Permission to wear a hat or scarf• Desk suitable for body size• Private shower stall to change clothes for PE classUnsteady gait (trouble walking or balancing)Recovering from brain tumors can make it hard to walk and stay balanced on their feet.• Wheelchair, walker, or cane• Personal aide or assistance from an adult while moving around• Permission to leave class early to avoid crowded hallwaysHearing and vision loss Hearing and vision loss can occur during or after treatment.• Evaluation by school division coordinators for visual and hearing challenges• Seat or desk close to the instructor“The side effects of the chemo cause me to fall asleep in class because of fatigue. I am not able to go up the stairs because of the muscle aches and the pressure it brings to my head. These are just a few problems I have as a high school student.” - Brain Cancer Survivor
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 7Challenge What it meansPossible accommodationsGross and fine motor skills deficits“Gross motor skills” involve the large muscles of the body. Children with gross motor skill challenges can have diculty with running, hopping, skipping, riding a bicycle, carrying a heavy backpack, and everyday skills needed for dressing. “Fine motor skills” involve the small muscles in the hands. Children with fine motor skill challenges may have diculty with everyday actions like buttoning their clothes, tying their shoes, opening food items, and even feeding themselves. Academic skills are aected by fine motor skill deficits due to diculty with handwriting, coloring, cutting, and construction (lego bricks, puzzles, etc.).• Extra support to complete physical and academic tasks• Evaluations by an occupational therapist or physical therapist assigned to the school• Assistive technology evaluationNausea and vomiting An upset stomach is a common side eect of medications and treatment, especially chemotherapy.• Late arrival to school to accommodate morning sickness• Visit the school nurse• Easy access to snacks and water during the school dayPain Pain can make it hard for students to focus, participate in activities, and keep up with their studies.Chronic pain is associated with many types of childhood cancer. • Regular visits to the nurse for medication• Use of a heating pad• Special seat or desk chair• Rest period
8 Childhood Cancer Education Toolkit“Cognitive” means the thinking activities of the brain. Cognitive skills are reading, learning, remembering, logical reasoning, and paying attention. Gaps in these areas can be hard to spot in children. Here are some common examples.Most CommonCOGNITIVECHALLENGESSlower processing speedShort-term memory lossUnable to focus or concentrate for long periodsPoor organizationHard to multi-taskVisual-spatial challengesDifficulty with word retrievalAT A GLANCE:Shyann, 10Rhabdomyosarcoma Stage 4
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 9CHALLENGESThis chart shares some examples of challenges and the kinds of accommodations that may help.DefinitionsChallenge What it meansPossible accommodationsSlow processing speed Students may need a few extra minutes to answer questions, share their thoughts, or complete their work. Students may feel anxious or nervous about how long it takes them to answer. They can be afraid of being called on in class and not having enough time to respond.• More time to respond in class• Questions provided in advance or in writing• Extended time to complete classwork, quizzes, and tests• Shortened assignmentsUnable to focus or concentrate for long periodsStudents may experience attention and concentration issues because of their medications. Pain and discomfort can cause distraction.• Extra breaks• Gentle reminders to help them focusPoor organization “Executive functioning” is the ability to plan, organize, and complete tasks. Treatment can cause changes in a student’s executive functioning abilities, and make it hard for them to stay organized. • Extra help from parents, teachers, and case managers to:• Write assignments in their agenda book• Prepare for tests and projects• Prepare for upcoming tests and projects• Monitor make up of missed assignments and due datesShort-term memory loss After treatment, it can be hard for students to remember things that they read, heard, or saw recently. For example, students may know their spelling words or math the night before but fail the quiz the next day.• More time to complete assignments and take tests• Word bank
10 Childhood Cancer Education ToolkitChallenge What it meansPossible accommodationsDicult to multi-task It may be hard for students to process in-depth information or keep up with multi-step instructions.• Spoken and written instructions with one or two steps at a time• Teachers and parents to check that the student understands the tasks• Index cards to outline each stepVisual-spatial challenges Visual-spatial trouble aects reading, math, and physical activities.“Visual-spatial processing” is the ability to tell where objects are in space. It’s how we know where to move our hands to catch a ball and how we read a math equation in the right order. It’s also how we can tell the dierence between a W and an M.• Visuals, manipulatives (objects they can hold, move, and feel), and hands-on activities to help strengthen these skills Diculty with word retrieval Students may know what they want to say but have diculty finding the words and speaking. It can get harder to find the right word when students are tired or under stress. It may seem like students don’t know the answer, even though they do.• Extra time to put their thought together and share them out loud• Math formula bank or word bank“In school, my cancer had a big impact on me. It took me much longer to understand concepts. I had to have things repeated a couple of times where other students understood right away.” - Leukemia Survivor
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 11Social and emotional challenges can come and go for children facing cancer diagnosis and treatment. Here is a list of the most common.Most CommonAT A GLANCE:SOCIAL & EMOTIONALCHALLENGESMissing out on playgroups, sports, and other activities Loss of contact with friends and peers Variation in maturity levels Desire for independence Need for acceptance Finding a social group in which to belong Search for normalcy Feelings of being different Turmoil of emotions including sadness, fear, guilt, anger, worry, anxiety, loss and grief Aubrey, 8T-Cell Lymphoblastic Leukemia
12 Childhood Cancer Education ToolkitHere are some ways your school can help with social challenges:Create a safe space in the school building. Children and teens returning to school need a place to go when feeling anxious, sad, afraid, or angry. Identify a go-to support person. This special teacher, coach, school nurse, or counselor can be the one person the child turns to when facing challenges during the school day. Start a club or support group at the school. Invite the school counselor or other school professionals to lead a group for students with special health care needs or social-emotional issues. These groups can allow students to express their feelings and concerns and let them know they are not alone. Help returning students feel wanted and accepted. Showcasing artwork, performing in the school play, making morning announcements, being an oce aide, or serving as an assistant on a sports team can make a child returning to school feel extra special and help them shine.
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 13Students Also Have Spiritual ChallengesThe diagnosis of childhood cancer provokes many tough questions.Why me? Why do bad things happen to good people?What did I do wrong to deserve this? While they may not be asked out loud in a school setting, it’s important for parents and teachers to think about what else may be making it dicult for the student to give their best.Often, the best thing an adult can do for a child experiencing these challenges is to listen and let them know they are not alone.“It is like a dangerous roller coaster ride with upside-down loops, gravity-defying drops, and steep upward hills. And much like a roller coaster ride, once finished, you look back on it as the scariest, most challenging, yet somewhat vitalizing time, and come away a stronger and wiser person.” - Robyn Dillon, Licensed Clinical Social Worker for Pediatric Hematology/Oncology
14 Childhood Cancer Education ToolkitMost CommonJOB-READINESSCHALLENGESSCHOOL &Physical, cognitive, social, and emotional challenges impact the student’s school and job success. In fact, many challenges are not identified until a child returns to school and everyday activities. It’s critical to work closely with the student and their family to help ensure that the student stays on track with their education, career, and job-readiness goals as they move forward in school.AT A GLANCE:Curriculum and scheduling District and state testingType of diplomaSAT & ACT testingCareer goalsTransition goalsCollege or job-readiness planningTecumseh, 12T-Cell Acute Lymphoblastic Leukemia (ALL)It can feel dicult to return to school, but studies have shown that the longer the student stays out of school, the more likely they are to experience separation and social anxiety. That’s why it’s important to encourage your child to go back as soon as your doctor gives them permission to do so.
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 15CHALLENGESFor elementary school students:1. Will the student receive intermittent homebound or partial school when they return?2. Do you feel the student needs remediation in any contact area?3. Does the student have an educational plan to address current needs?4. What is the best way to stay in communication with the student’s family once their child returns to school? Are you receiving medical updates from the student’s family or physician that may impact school performance? Are you meeting with the family every 3-4 weeks to discuss their child’s progress?For middle school or high school students:1. Which courses would best fit the student’s needs, interests, and goals?• Does the student have a study hall due to possible fatigue? • Should the student be taking AP classes? If so, how many?• Are there course requirements that can be met in the summer to reduce their workload?2. What options does the student have for district and state-level testing? • How many verified credits does the student need to graduate? How many SOL tests does the student have to take?• What is the schedule for SAT or ACT testing? When should the student take them?3. How can you help the student work toward their career goals?• What are the student’s strengths and weaknesses?• Should the student be on track for a standard or advanced diploma? What is required for each?• Is the student college-bound? What are vocational/trade options?Here are questions and topics that counselors should talk about with the student’s parents prior to the student returning to school.TO ASKQUESTIONS
16 Childhood Cancer Education ToolkitAll students with a medical diagnosis should have a School Health Plan.Sabina, 17Hodgkin LymphomaDiagnosis and medical condition All medications to be given at school A School Health Plan should include:Instructions for medical procedures that will be performed at schoolFeeding and nutritional needs at school Physical accommodations needed in the school setting Information regarding emergency contacts and procedures SCHOOLHEALTHPLANSCHOOL HEALTH PLAN
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 17EDUCATIONALPLANHEALTHMost children and teens going to school after a cancer diagnosis need an Educational Plan to accommodate the late effects and challenges associated with treatment—Remember that 2 out of 3 students will have at least one late effect after cancer treatment.Individuals with Disabilities Education Act (IDEA)There are two plans the student’s family can consider:Section 504 of the Rehabilitation Act of 1973 (504 Plan)Katia, 16Osteosarcoma
18 Childhood Cancer Education ToolkitWhat is Section 504? Section 504 is a civil rights law that prohibits discrimination based on disability or impairment. It is focused on accommodations that can help the student.How is “disability” defined for a 504 plan? When a person has a mental or physical impairment that substantially limits one or more major life activities.Major life activities that may be impaired include but are not limited to: Self-care Thinking Learning Manual Tasks Hearing Speaking Walking Breathing Concentrating Interacting Seeing Sitting Section 504 of the Rehabilitation Act of 1973 How is an “impairment” defined for a 504 plan? • Any disability, long-term illness, or disorder that substantially reduces or lessens a student’s ability to access learning in the educational setting because of a learning problem, behavioral issue, or health-related condition. • When a person has a record of such an “impairment” or is regarded as having such an impairment the clinic or hospital dictation can serve as the record of the impairment. • Parents need to obtain the dictation from the clinic or hospital before attending the school meetings.
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 19Individuals with Disabilities Education Act (IDEA)What is the Individuals with Disabilities Education Act (IDEA)? IDEA is a federal law that ensures that all children with a disability get a free appropriate public education that is tailored to meet their individual needs.Each child who is found eligible for special education services under IDEA has an Individualized Education Program (IEP) that is written specifically for his or her unique learning needs. It provides direct instruction in and out of the classroom.There are numerous conditions that determine eligibility under IDEA. Children diagnosed with childhood cancer who need special education services often qualify for eligibility under “Other Health Impairment.” Student Evaluations for an IEPChildren must be evaluated to determine if they qualify for services under IDEA. • The process for evaluation can take a long time. The school district has 65 days to complete the evaluations. Evaluations can include: Medical Psychological Educational Social History Speech Language Physical Therapy Evaluation Occupational Therapy Evaluation Assistive Technology Evaluation Classroom ObservationThe Virginia Department of Education (VDOE) provides Evaluation and Eligibility information here: https://www.doe.virginia.gov/programs-services/special-education/evaluation-and-eligibility.
20 Childhood Cancer Education ToolkitIt is hard to think about the student having a “disability” now or in the future.However, childhood cancer is a health impairment.Even if the student is in advanced classes, getting good grades, or seems fully “recovered,” some things can still be dicult. An educational plan can help the student with a physical, cognitive, or social-emotional health impairment.“Accommodations” are changes that remove barriers and give the student equal access to learning. The list on the following page will give you an idea about what might meet the student’s unique needs. This tool will help you and your school partners discuss options during your School-Based Team Meeting.The following checklist can be used on the 504 Plan or IEP when a student exhibits physical, cognitive, social, and emotional challenges.HELPFULACCOMMODATIONSCaelan, 4B-Cell Acute Lymphoblastic Leukemia (ALL)
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 21HELPFUL Permission to carry a water bottle throughout the school day Mid-morning and afternoon snack breaks Bathroom privileges when needed Rest period when needed Use of a 2-way agenda book in which parents and teachers can communicate on a daily/weekly basis Clarification of both oral and written directions Hard copy of notes, presentation slides, and study guides Scribe to take notes Chunking assignments and tests into small parts Extended wait time for responses due to slower processing Extended time to complete assignments and tests Repeat or rephrase key information of study unit to allow for additional processing Preferential seating, free of distractions Use of visual aids and manipulatives when learning new tasks Use of assistive technology to address reading and writing diculties Divider or study carrel to block visual distractions when completing tests, quizzes, and individual class assignments Frequent breaks during lengthy class periods and assignments to mitigate fatigue and improve mental stamina Modified workload with emphasis on quality versus quantity Study guides or bank of possible questions at the beginning of each study unit Small group or individual setting for testing, quiet and free of distractions Teacher prompts and reminders to submit classwork and homework Use of a voice-to-text reader to improve oral reading comprehension Use of noise-canceling headphones to reduce demands on sustained attention Use of multi-modality learning in which auditory, visual, and tactile, hands-on activities are incorporated Use of formula bank and word bank to assist with word retrieval and memory issues Exempt from strenuous exercises, contact sports, and long-distance running in PE class Exempt from the Presidential Physical Fitness Testing in the Fall and Spring Participation in physical education activities as tolerated Permission to wear sunscreen and hat when going to recess or PE Permission to wear a hat or scarf due to hair loss or feelings of discomfort Allowed to leave class 3-5 minutes early to avoid the crowded hallways Peer buddy when transitioning from class to class Elevator pass when school has multiple floors Locker assignments close to classes Parking space close to the school entrance Partial day school with intermittent homebound services when unable to attend for a full day It would help the student to have:
22 Childhood Cancer Education ToolkitClassmates need to know why their friend is frequently absent, is allowed to wear a hat, cannot play contact sports, or needs a rest period. An in-service is a lesson or activity to help the student and their classmates feel more comfortable. It will:• Answer curious questions• Make children less afraid and more comfortable• Share ideas on how to be helpful and a good friendThe ASK Education Support Navigator, hospital social worker, or child life therapist at the student’s treatment center may be the one to lead the in-service. A teacher, school counselor, or school nurse at your school is also a good option.Here is what could be included in an elementary-age in-service:• A short description of the diagnosis and treatment is always a good way to begin, followed by pictures, diagrams, and big words like “chemotherapy” on the board. • The leader may use puppets to show where the port-a-cath is placed and how the medication is given. • Next, side eects such as hair loss, fatigue, and low stamina can be discussed.• Classmates and leaders can discuss how to be a good friend.Resources such as puppets, video presentations, and medical devices are helpful when doing an in-service.In-service content should be age-appropriate for middle and high school students.CREATE A WELCOMING ENVIRONMENT WITH ACLASSROOMIN-SERVICE
Childhood Cancer Education Toolkit ASK Childhood Cancer Foundation 23“The Education Toolkit gave me a lot of information I needed. I didn’t know there were so many things to be aware of. I know it helped her teachers know what to look for and how to better help my daughter.”- ASK ParentNikola, 5B-Cell Acute Lymphoblastic Leukemia (ALL)Jer’Niya, 13Acute Promyelocytic Leukemia
24 Childhood Cancer Education ToolkitVisit askccf.org to download the digital version of this toolkit and explore our other educational resources.