Educational Challenges After Childhood Cancer Treatment

Anne Mauck, CPNP Alma Morgan, M.Ed

2007 AECMN ConferenceNovember 2007

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

Background

1.3 million cases of cancer per year in United States

13,000 children under 21

7,500 children under 15

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

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

The Cost of Cure

Physical Effects Neurocognitive DeficitsPsycho-Social ChallengesSpiritual ChallengesSchool/Vocation/Employment Reproductive IssuesSecond Malignancy RiskEffects on Endocrine SystemInsurance Implications

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

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

Types of Childhood Cancer

Leukemia

Brain Tumors

Lymphoma

Neuroblastoma

Wilm’s Tumor

Bone and Soft Tissue SarcomasOsteosarcoma

Ewing’s Family of Tumors

Rhabdomyosarcoma

Treatments

Surgery

Chemotherapy

Radiation

Hematopoietic Stem Cell Transplant

Supportive CareTransfusion, antibiotics

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

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

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

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

Effects of Therapy: Wilm’s Tumor

Short term: Nausea, vomiting, fatigue, fever, infection, peripheral neuropathy

Potential long term: Single kidney precautions, fatigue

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

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

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

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

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?

Academic/Vocational Challenges

Curriculum and scheduling Standards of learningDistrict and state-wide testingTransition issuesTypes of diplomasSAT and ACT testingCareer GoalsCollege or Vocational Training

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

Who serves as the support system for the child?

School Team

Medical Team

Family

Friends

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

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

What educational plans are available?

Section 504 of the Rehabilitation Act of 1973

Individuals with Disabilities Education Improvement Act (IDEA 2004)

What is Section 504?

It is a civil right’s statue that prohibits discrimination based upon disability.

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”

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.

What are considered “Major Life Activities?”

Self-care

Manual tasks

Walking

Seeing

Hearing

Speaking

Sitting

Thinking

Learning

Breathing

Concentrating

Interacting

Working

What is IDEA?

Individuals with Disabilities

Education Act

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.

•November 17, 2004- Enacted by Congress•December 31, 2004- Passed by the President•July 1, 2004- Law went into effect

IDEA 2004

-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

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

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

Child Study Team will determine what evaluations are needed.

•Medical

•Psychological

•Educational

•Social History

•Speech/Language

•Occupational Therapy

•Physical Therapy

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

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

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

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

Transition

•The movement from one critical period in life to the next.

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

Who can help with these transition

periods?

Each and every person working with the child.

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