After Childhood Cancer
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Educational Challenges After Childhood Cancer Treatment
Anne Mauck, CPNP Alma Morgan, M.Ed
2007 AECMN ConferenceNovember 2007
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Objectives
•Present a brief overview of childhood cancer
•Discuss physical, cognitive, social/emotional, spiritual, and academic challenges
•Identify educational plans to meet the needs of the child
•List common accommodations needed
•Explore critical transition periods
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Background
1.3 million cases of cancer per year in United States
13,000 children under 21
7,500 children under 15
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The Good News
80% cure ratefor all comers
1 in 460 adults between 25 and 40 is childhood cancer survivor (CCS)
Estimated by 2010, 1 in 250 adults will be a CCS
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The Bad News
20% will not survive2 of every 3 survivors have at least 1 late effect1 of 3 have 2 or more late effects1 of 3 have a serious late effect
Incidence of late effects increases with ageMay take decade or more to be visible
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The Cost of Cure
Physical Effects Neurocognitive DeficitsPsycho-Social ChallengesSpiritual ChallengesSchool/Vocation/Employment Reproductive IssuesSecond Malignancy RiskEffects on Endocrine SystemInsurance Implications
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Long-Term Effects After Cancer Treatment
Adverse effects that do not resolve after completion of therapy
Any new problem that becomes evident following cancer therapy
Noted during maturation (puberty), growth, and normal aging
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Influencing Factors
Location and extent of disease
Type of treatment
Supportive Care
Age and developmental status of patient at time of diagnosis
OtherGenetics
Limited learning experiences
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Types of Childhood Cancer
Leukemia
Brain Tumors
Lymphoma
Neuroblastoma
Wilm’s Tumor
Bone and Soft Tissue SarcomasOsteosarcoma
Ewing’s Family of Tumors
Rhabdomyosarcoma
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Treatments
Surgery
Chemotherapy
Radiation
Hematopoietic Stem Cell Transplant
Supportive CareTransfusion, antibiotics
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Effects of therapy: Leukemia
Short term: Immunocompromise, fatigue, mood swings, change in appearance, fever, low blood counts, infection, peripheral neuropathy, mouth sores, psycho-social impact
Potential long term: Cognitive issues, osteoporosis, second malignancy, endocrine issues, sexual and fertility issues, cardiac damage, cataracts, and psycho-social impact
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Effects of Therapy: Brain Tumors
Short term: Nausea, vomiting, fatigue, somnolence, physical changes, strength, motor coordination, hearing, vision, nutritional issues, peripheral neuropathy, low blood counts, fever, infection, psychosocial impact
Potential long term: Fatigue, physical changes, appearance, strength, motor coordination, hearing, visual, nutritional and growth issues, cognitive impairment, second malignancy, psychosocial impact
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Effects of Therapy: Lymphomas
Short term: Nausea, vomiting, low blood counts, fatigue, fever, infection, mouth sores, peripheral neuropathy
Potential long term effects:Hodgkin’s: Second malignancy (breast, thyroid, AML), fatigue, endocrine, reproductive, osteoporosis, cataracts, lung and cardiac toxicity, mortality, psychosocial impact
Non-Hodgkin’s: Cognitive, nutritional, endocrine issues, osteoporosis, cataracts, cardiac toxicity, psychosocial impact
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Effects of Therapy: Neuroblastoma
Short term: Fever, low blood counts, infection, nausea, vomiting, fatigue, diarrhea, pain
Potential long term:Hearing loss, ovarian, testicular failure, recurrence, second malignancy, cardiac toxicity
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Effects of Therapy: Wilm’s Tumor
Short term: Nausea, vomiting, fatigue, fever, infection, peripheral neuropathy
Potential long term: Single kidney precautions, fatigue
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Bone and Soft Tissue Sarcomas
Short term: Low blood counts, fever, infection, pain, mouth sores, fatigue, body image changes
Long term: Body image changes, gross or fine motor changes, lung and heart toxicities, fertility issues, cognitive issues, hearing loss, psychosocial impact
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Physical Challenges
Fatigue/muscle weakness/low staminaNausea and vomiting Mood SwingsAltered physical appearance (Scarring, hair loss, weight loss/gain, amputation/limb salvage)Gross and fine motor deficitsPeripheral NeuropathyCataracts/Blurred visionHearing LossEndocrine/pulmonary/cardiac issuesSexuality and fertility issues
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Cognitive Challenges
Short-term memory deficitsDifficulty with word retrievalSlower thinking, processing speedPoor organizational skillsDifficulty with multi-taskingAttention problems including poor concentration and distractibilityFine motor skill deficits
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Social/ Emotional Challenges
Lack of exposure to play groups, sports, and other extra-curricular activitiesLoss of contact with friends/peersVariation in maturity levelDesire for independenceNeed for acceptance and finding social group in which to belongFeelings of being “different”
Feelings of:sadnessguiltangerworrylossgrief
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Spiritual Challenges
Why me?What did I do wrong to deserve this?Where is the all-loving God?Who is God?Why do bad things happen to good people?Am I meant to live this way?What will happen to my family?What is my quality of life?
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Academic/Vocational Challenges
Curriculum and scheduling Standards of learningDistrict and state-wide testingTransition issuesTypes of diplomasSAT and ACT testingCareer GoalsCollege or Vocational Training
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What helps when faced with these challenges?
Strong support system
School health plans
Educational plans
In-service with staff and classmates
Transition goals
Networking with local and state agencies, non-profit organizations, and businesses in the community
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Who serves as the support system for the child?
School Team
Medical Team
Family
Friends
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Our goals for children after treatment
Find NormalcyFeel good- mind, body, and spiritIncrease self-esteemBuild confidenceIncrease independenceLearn self-advocacy skillsExperience academic successDevelop to his/her maximum potentialFind meaning in a world with so many unanswered questions
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Why is the school health plan crucial?
Describes diagnosis, treatment, and side effects
Lists medications given at school
Outlines medical procedures
Suggests accommodations that are needed for the medical condition
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What educational plans are available?
Section 504 of the Rehabilitation Act of 1973
Individuals with Disabilities Education Improvement Act (IDEA 2004)
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What is Section 504?
It is a civil right’s statue that prohibits discrimination based upon disability.
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What constitutes a “disability”?
A person who has a mental or physical impairment which substantially limits one or more major life activity.
Has a record of such an impairment, or
Is regarded as having such an “impairment”
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What is defined as an “impairment”?
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.
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What are considered “Major Life Activities?”
Self-care
Manual tasks
Walking
Seeing
Hearing
Speaking
Sitting
Thinking
Learning
Breathing
Concentrating
Interacting
Working
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What is IDEA?
Individuals with Disabilities
Education Act
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IDEA was formerly known as Public Law 94-142; however, it was reauthorized in 1997 and has recently been revised again.
IDEA, Individuals with Disabilities Education Act, is a federal law that provides funding for special education. It provides a “free and appropriate education” to all students who fall within the special education category.
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•November 17, 2004- Enacted by Congress•December 31, 2004- Passed by the President•July 1, 2004- Law went into effect
IDEA 2004
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-to insure that all children with disabilities have a free public education that emphasizes special education and related services designed to meet their unique needs and to prepare them for further education, employment, and independent living…and to ensure that the rights of children with disabilities and parents of such children are protected.
Purpose of IDEA 2004
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Who qualifies for special education services under IDEA?
•Any child 2-21 years of age, inclusive, who has a “disabling condition” which limits his or her progress in the regular classroom
•Any child who needs special education or related services to make progress or appropriate strides in education
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What constitutes a “disabling condition”?•Autism
•Deaf-Blindness
•Developmental Delay
•Emotional Disturbance
•Hearing Impairment/Deaf
•Learning Disabilities
•Mental Retardation
•Multiple Disabilities
•Orthopedic Impairment
•Other Health Impairment
•Specific Learning Disability
•Severe Disabilities
•Speech/Language Impairment
•Traumatic Brain Injury
•Visual Impairment
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Child Study Team will determine what evaluations are needed.
•Medical
•Psychological
•Educational
•Social History
•Speech/Language
•Occupational Therapy
•Physical Therapy
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Possible Accommodations to Include on the 504 Plan or the IEP
•Student will be allowed to have two sets of books, one for home and one for school
•Student will be assigned a desk suitable for his body frame/size
•Student will be given permission to carry a water bottle and drink throughout the school day
•Student will be given bathroom, guidance, or clinic passes when needed.
•Student will be exempt from all physical education activities requiring strenuous exercises, long distance running, and direct physical contact
•Student will be exempt from the presidential physical fitness testing
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More Accommodations•Student will be granted permission to wear layered clothing, both in the classroom and in gym class
•Student will excused from going outside for gym, recess, or play time during extreme temperatures
•Student will be granted permission to change gym clothes in a private stall or restroom if needed
•Student will be assigned a moderate workload with limited assignments requiring quality versus quantity
•Student will be granted extended time to complete classwork, quizzes, homework, and tests
•Student will be allowed to leave class 5 minutes early to get to his next class
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And More Accommodations•Students will be granted a shortened school day or rest period if needed
•Student will be granted a locker close to his or her classes
•Student will be assigned a parking space close to the school entrance
•Student will be granted special transportation when the bus stop is numerous blocks from the home
•Student will be assigned a peer buddy to take notes or scribe if necessary
•Student will be kept informed of class activities and school functions
•Student will be assigned an intermittent homebound teacher to assist when absent for bleeding episodes or clinic appointments
•Student will be granted extended school year during winter break, spring break, and summer if needed
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In-service for School Staff and Peers
•Answers questions•Makes one less curious•Makes one less afraid•Makes one feel more comfortable•Offers helpful hints and suggestions on how to help
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Transition
•The movement from one critical period in life to the next.
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Critical Transition Periods
•Time of Diagnosis•Elementary to middle school•Middle school to high school•High school to college/work•Career changes•Pediatric to adult services•Major life changes
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Who can help with these transition
periods?
Each and every person working with the child.
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Networking Helps!•Department of Vocational and Rehabilitation Services provides career assessments, testing, training, and job placement•Offices of Students with Disabilities at colleges and universities provide accommodations for academic success•Non-profit organizations for specific illnesses•Specialized camps such as Camp Holiday Trails and Camp Comfort Zone •Local businesses and agencies provide internships and job training