Ewing's sarcoma, Part 2 — Restrictions and implications for school
Physical/dietary/other restrictions
If the bone with the cancer is so weak that it could break, limitations
on activity made be in place from the time of initial diagnosis through
completion of therapy. After surgery, the limitations on activity depend
on the type of treatment used. Irradiated bone is more likely to break,
so child treated in this manner may have permanent restrictions on their
activities.
For those treated with surgery, the degree and length of limitation
depends on how the bone was put back together. If the bone was put back
together with other bone (either grafted from another site in the child’s
body or donor bone), it is not unusual for restrictions to be in place
for several months while the bone heals. During this time, the child should
be mobile, with crutches or a walker if necessary for tumors in the pelvis
or legs.
Other physical restrictions may be the result of the chemotherapy treatments,
rather than of the cancer itself. The possible side effects of this chemotherapy
depend on the medications used and how the child responds to them. These
medications also affect other processes, such as the production of blood
cells. Common side effects of this include fever, increased susceptibility
to infection, and increased risk of bleeding with trauma. Chemotherapy
may result in low blood counts (red blood cells, white blood cells and
platelets).
Red blood cells (hemoglobin) carry oxygen throughout the body and give
us energy. If chemotherapy causes these cells to be low, the person may
be very tired. Their physical activity may be restricted during this time.
Sometimes, they need a blood transfusion to give them more red blood cells.
White blood cells help fight infection in our bodies. If these cells
become too low, the person may be more likely to catch infections that
are hard for them to fight off. If this happens, the person may be restricted
from being in big crowds (malls, football games, grocery stores, etc.)
where they may more easily be exposed to germs. If they do get an infection,
sometimes they must go into the hospital for IV (intravenous) antibiotic
treatments to help get rid of the infection. Many infections are carried
on our hands, by germs that get there when we cough, sneeze or touch a
surface that has germs on it. We can help people who are getting chemotherapy
(and everyone else, too) by using good hand washing techniques.
Finally, platelets are the part of our blood that prevent us from bleeding
too much or developing bruises. When chemotherapy causes platelets to
decrease, the person may have more bleeding when they are cut, or develop
bruises easily.
Implications for school
Education about Ewing’s sarcoma is suggested for the classmates
and peers of the student with Ewing’s sarcoma. Other students are
likely to have questions about the child’s altered mobility status,
hair loss, possible weight loss, frequent absences from school and other
concerns. If not explained truthfully and honestly, peers may come to
conclusions about their friend’s status that are inaccurate. Teasing
and rejection are far less frequent concerns when classmates understand
what their friend is experiencing.
With consent of the student and his/her parent, classmates may receive information about the
diagnosis and treatment from the teacher at the hospital where the child
is receiving treatment, the school nurse or other knowledgeable persons.
Often, the student wants to be involved in that process,
and may provide the most valuable information about his/her personal experiences.
A student with Ewing’s sarcoma may have significant absences during
the period of time which includes surgery and chemotherapy. Recovery from
surgery, chemotherapy treatments, doctor appointments, laboratory and
infections may all result in missed school. Typically, the most active
part of treatment lasts about a year. During that period of time, a great
deal of flexibility and creativity will be required to enable the student
to stay caught up with his/his her class.
Homebound is not recommended
as the primary educational delivery mode, as it reduces the young
person’s opportunity for normality and socialization with peers.
Homebound may be used, however, during the period after surgery, or as
an adjunct to school attendance. Intermittent homebound, or providing
in home/hospital educational support when the child is unable to attend
school, combined with regular school attendance when the child is able,
may provide maximum support for the student with a chronic illness.
Modifications and accommodations will be necessary to create a physical
and learning environment that is appropriate for the student with Ewing’s
sarcoma. As previously stated, the student may, temporarily, utilize a
wheelchair at school. Seating arrangements and desk type may need to be
modified to accommodate the wheelchair. If on crutches, the secondary
student may need early release from classes to provide extra travel time
to get from class to class when the halls are not congested with other
students. Creating a Section 504 Plan or evaluating the student for classification
of Other Health Impaired and, subsequently, and IEP may be indicated.
If the status of a student with Ewing’s sarcoma changes, the need
for information for teachers and classmates is renewed. For example, if
the child has a reoccurrence of the disease or metastasis (spread) to
the lungs or another part of the body, requiring different treatment,
it is advisable to reconnect with the hospital school teacher or other
medical caregivers about what may lie ahead for the child and family.
Ongoing, effective communication between the family, school and hospital
may result in better understanding and, thus, the ability to provide optimal
support for the child.
Ewing's, Part 2 — Restrictions and implications for school/h3>
For more information, please contact:
Kathy Davis, MSEd, PhD
kdavis2@kumc.edu
(913) 588-6305