Learning & Living With Cancer Advocating for your child's educational needs

Learning & Living
With Cancer
Advocating for your child’s educational needs
Made possible by the
Lance Armstrong Foundation

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Acknowledgments
The Leukemia & Lymphoma Society gratefully acknowledges
the important work of the following organizations and individuals
that helped make this booklet possible.
Daniel Armstrong, PhD
Laurie D. Leigh, MA
Director, Mailman Center for
Director of School Programs
Child Development
St. Jude Children’s Research Hospital
Associate Chair,
Memphis, Tennessee
Department of Pediatrics
Alma Morgan, MEd
University of Miami Miller School
Educational Consultant
of Medicine
Pediatric Hematology/Oncology
Holtz Children’s Hospital at the
Virginia Commonwealth University
University of Miami/Jackson Memorial
Medical Center
Medical Center
Richmond, Virginia
Miami, Florida
Larry L. Mullins, PhD
Ruth Hoffman
Department of Pediatrics/
Executive Director
Pediatric Hematology/Oncology
National Office
The Children’s Hospital
Candlelighters Childhood
University of Oklahoma Health
Cancer Foundation
Sciences Center
Kensington, Maryland
Oklahoma City, Oklahoma
Nancy Keene
Ruth Rechis Oelker, MS
Parent of a childhood cancer survivor
Graduate Survivorship Fellow
Author and Editor
Lance Armstrong Foundation
Childhood Cancer Guides
Austin, Texas
Bellingham, Washington
Gregory H. Reaman, MD
Peggy Kulm, RN, MA
Professor of Pediatrics
Children’s Oncology Group
The George Washington University
Port Ludlow, Washington
School of Medicine and Health
Marie Lauria, MSW, LCSW
Sciences
Chair, National Patient Services
Children’s National Medical Center
Committee
Washington, DC
The Leukemia & Lymphoma Society
Chairman, Children’s Oncology Group
Chapel Hill, North Carolina

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Building hope for the future
or children with cancer and
As the parent of a child returning
their parents, returning to
to school during or after cancer
school builds hope for the future.
treatment, you will need to be the
Attending school is a big part of
mobilizing force behind your
feeling normal and productive.
child’s education plan. You are the
Yet, going back to school also
person who will need to see that a
brings new challenges to families
plan is started and maintained,
whose main focus has been
or changed as needed. Your
getting through treatment.
child’s medical team and school
You may wonder:
personnel will support you in
• What challenges will my
shaping and carrying out the plan.
child face?
• What help is needed for my child
How this booklet can
to be successful?
help you
• What laws protect my child?
• Where do I turn for help?
This booklet is written to guide you
in this endeavor. It is a starting
point to give you:
• Insights about the challenges
your child may face and what
can be done
• Information about the
laws that protect your child’s
educational needs
• Specific ways that schools
can help meet your child’s
educational needs
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Returning to school — Planning for the future
ost children with cancer
Short-term effects
will attend school at least
of cancer treatment
some of the time during and after
treatment. Because school is a
Short-term effects are the side
place for learning and fun,
effects that happen during and
children benefit from returning
shortly after cancer treatment.
to school as soon as medically
possible. Your child may experience
Possible short-term effects
side effects of treatment both in the
of treatment
short and long term that can affect
• Hair loss
his or her education. By being
• Mouth or throat sores that
aware of possible effects, you can
can be painful
work with the school to help
• Nausea and vomiting
your child.
• Diarrhea or constipation
• Anemia
• Fatigue
• Social and emotional
concerns, such as anxiety,
depression, or fear
On pages 8 through 12, you
will find suggested ways
school personnel can help
your child manage these
effects of cancer treatment
should they occur.
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Ideas for classroom presentations
The outward signs of illness can
Be sure to keep in mind the ages
be especially hard for children
of the children in the classroom.
with cancer because of their need
Classroom presentations that are
to fit in with peers. Classroom
age appropriate are most effective.
presentations can help peers
Some ideas to keep in mind are
understand what to expect when
listed below.
the child with cancer returns.
Children 5 to 8 years old
Questions other children may
• May think that cancer happens
ask include:
because the child did something
• Is cancer contagious? How did
“bad”
my classmate get cancer?
• May think that they can “catch”
• Will the cancer go away?
cancer
Will it ever come back?
• Does my classmate still have
Children 9 to 12 years old:
to do homework?
• May be able to empathize with
the child with cancer
• What can we do to help?
• May want to know about the
Providing straightforward,
probability of getting cancer
reassuring answers to children’s
questions can help turn anxious
Teens 13 to 17 years old:
classmates into supportive friends.
• May want to know about the
scientific basis for the disease
• May understand the need to
treat their classmate with cancer
the same as others
Young people who are educated
about cancer may grow up to
be compassionate adults who
will reach out to others in times
of need.
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Types of late effects
any parents are surprised
Other late effects can be
to learn that the effects of
physical, including:
cancer treatment may continue
• Seizures
after treatment ends. These effects
• Problems with eyesight
of cancer treatment — called
or hearing
late effects — can impact
schooling for years. Sometimes
• The need for a wheelchair
late effects are noticeable right
or prosthesis (an artificial
away. Others may take years
arm or leg)
to show up. Some cognitive
There are also psychological
late effects (those affecting
late effects, such as posttraumatic
thinking and memory) include
stress. The term posttraumatic
problems with:
stress describes a person’s
• Organization (homework
response to trauma.
assignments may often be
misplaced; school materials
can be jumbled)
• Reading or reading
comprehension
• Processing speed
(children may work more
slowly than their peers)
• Visual memory for things
that are new (such as
decoding letters and
numbers or reading music)
• Understanding math
concepts or remembering
math facts
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Risk factors for late effects
Not all childhood cancer survivors
Should my child be
will develop late effects. Factors
evaluated for late effects?
that increase the risk for learning
problems in school include:
Any child who is at risk for late
• Cancer diagnosis at a very
effects or is having difficulty in school
young age
should have neuropsychological
• Cancer treatment involving the
testing done by a licensed pediatric
central nervous system (the
psychologist or neuropsychologist.
spinal cord and brain)
Ask your medical team for a referral.
The tests may be available free of
• Certain types of cancer, such as:
charge from major medical centers
– Brain or spinal cord tumors
or universities. You may want to
– Tumors in the eye, eye socket,
tell your child that these tests
head, or facial area
are painless.
– Acute lymphoblastic
leukemia (ALL)
When testing is complete, be
– Non-Hodgkin lymphoma (NHL)
sure to schedule time for the
– Hodgkin lymphoma
neuropsychologist to explain the
• Brain surgery
results and any recommendations
for adjustments at school that the
• Radiation to the total body
child may require. If needed, ask
or to the head
the neuropsychologist to help
• Female gender — Girls may
explain the recommendations to
be more at risk for cognitive
the school staff. Keep in mind
late effects
that even if the first evaluation is
normal, at some point in the future
your child may experience certain
late effects, such as slow processing
speed and problems with visual
memory. Periodic evaluations
may be needed at academically
challenging times, such as entry
into elementary, middle, or high
school or during precollege
planning. Ask your medical team
to suggest a follow-up care
program that includes periodic
evaluations.
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Laws that help protect
children with educational needs
hildren affected by cancer
Which law can help my
treatment may have a physical
child most?
or learning disability. The following
3 federal laws help protect the
All childhood cancer survivors
rights of students with educational
qualify for intervention or
needs resulting from cancer
accommodation under one of
treatment.
these laws. The table on the next
The Americans With
page compares IDEA and Section
Disabilities Act (ADA)
504. With IDEA, most students are
Protects against discrimination
eligible under the “other health
in employment, transportation,
impairment” category. If the child
communication, government,
does not meet IDEA eligibility,
and public accommodations.
Section 504 accommodations could
It may be especially useful to
be considered. Under Section 504,
students seeking employment
the child qualifies if he or she has
or going to public colleges
a record of impairment that
or universities.
substantially limits one or more
major life activities, such as
The Individuals With
learning, walking, or climbing
Disabilities Education Act (IDEA)
stairs. Most children who have
Protects students (aged 3-21 years).
or had cancer will meet this
Ensures public schools, colleges,
criteria. To find out which
and universities provide a free
approach is best for your child,
and appropriate education, just
work closely with your child’s
as for other children.
medical team and school staff.
The Rehabilitation Act of 1973 –
Section 504
Requires all educational institutions
receiving federal funding to
provide accommodations for
students with physical or mental
impairment, or a record of
impairment, that limits at least
one major life activity.
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Comparing the IDEA and Section 504*
Special Education
Section 504
(IDEA)
Type of law
An education law
A civil rights law
Who is in charge
Special education
Section 504
director
coordinator
General purpose
Each child with
Protects the rights
of the law
a disability is
of individuals with
guaranteed a free
disabilities in
and appropriate
programs and
education
activities that
receive federal
Includes preschool,
assistance from the
elementary, and
Department of
secondary
Education
Name of tool(s) used
Individualized Accommodations
to implement the law
Education Plan (IEP)
(504 Plan)
Types of disabilities
13 disabilities,
All eligible disabilities,
including other
including cancer
health impairment,
which may qualify
Disability must
cancer survivors
substantially limit
one or more major
life activities
Safeguards
Parent participation,
Notice to parent
consent, and
is required
notification is needed
Evaluation of
An evaluation needed
An evaluation needed
eligibility
*Adapted with permission from Our Child Has Cancer: What Do We Do About School?
by Carla Woyak, MSEd. To order, call 602-300-0831.
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Types of accommodations
he next few pages list examples of accommodations that children
with cancer may need. The accommodations are divided into 2 types:
• Physical – those that help students cope with physical effects of
treatment, such as fatigue and hair loss
• Cognitive – those that help students cope with effects of treatment on
thinking and memory
To help you advocate for your child when working with school staff
members, the table also includes a rationale for each accommodation.
For every accommodation, the child’s individual needs, as well as his or
her age, are key considerations. To learn more, be sure to consult the
organizations listed on the back cover of this booklet.
Physical accommodation
Rationale
The student will be given
The student may miss school often
2 sets of books — one for
because of hospital stays and feeling
home and one for school.
poorly. By having an extra set of
books at home, the student can
better keep up with assignments.
Lighter backpacks are easier for
fatigued children to carry.
The student will be allowed
Students on chemotherapy or other
to carry a water or juice bottle
medicines may need to drink extra
throughout the school day.
fluids to prevent dehydration and
dry mouth.
The student will be given
A laminated pass to use when
bathroom, guidance, and
needed allows the student to leave
clinic passes.
the classroom without drawing
attention from the other students.
Developed with Alma Morgan, MEd, Educational Consultant, Pediatric Hematology/Oncology, Virginia
Commonwealth University Medical Center.
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