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Running Head: SCHOOL EXPERIENCES OF AN OUTPATIENT CHILD WITH CANCER 1
The School Experiences of Crystal, an Outpatient Child With Cancer
Gabrielle Cypher
Carthage College: Social Work Department
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 2
Background Information:
Crystal is a young energetic 8 year old girl. She lives in a small Midwest town attending
2nd grade at a small private school which her Mom also teaches at. Crystal is part of a large
blended family which includes her Mom, Dad, two older half-sisters, and older half-brother.
Crystal enjoys swimming in the pool, hanging out with her neighbors, and playing with
her American Girl Dolls. Crystal is a very active and lively girl who is a great singer and dancer.
Crystal’s favorite time of the year is Christmas and summer (so she can go swimming). She
loves her family and having fun with them at their cabin up north. She likes to watch her brother
and sisters play sports and perform in show choir. Crystal is a loving and caring young girl that
loves to take care of those around her. She is extremely loving and genuinely cares about those
around her. Crystal likes to make her parents proud and often exclaims how brave she is. Crystal
has faced many obstacles in her life but her positive personality is infectious.
Crystal’s birth was very traumatic, “she had a broken collar bone and was not
breathing...in fact she was purple--and we were terrified” said Crystals Mom, Teri, 46. Crystal’s
young life continued to be rot with difficult situations. After her grandpa died, Crystal began
gaining weight and throwing up about 6 times a day. Crystal and her family found out that she
had a very rare, inoperable, slow growing, cancerous brain tumor in the hypothalamus region of
her brain; she was 18 months.
Children’s Hospital then began tests and treatments to try to understand and treat
Crystal’s tumor. The family was also treated poorly by some staff at the Children’s Hospital; the
family was told to “not reward her (Crystal) with a donut” and was told, prematurely, that
Crystal would only live to be 6 years old. After some confrontations with the Hospital staff,
which awarded Crystal’s mother with the term “pushy”, the family was referred to the Mayo
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 3
Clinic in Rochester Minnesota; 6 hours away from the family’s home. Crystal began monthly
MRI’s, tests, and treatments at the Mayo Clinic.
Crystal’s tumor grew and she was administered chemotherapy treatment once a week for
a year; she was 5 years old. The tumor had successfully shrunk to a size the doctors were
comfortable with. Crystal’s doctors then put her on new experimental treatments and medicines.
Crystal has been on experimental medications and treatment trials since the discovery of her
condition. She continues these treatments with no success to this day.
Current Research:
Over 10,400 children and adolescents in the United States under the age of 15 will be
diagnosed with cancer this year (Brown, Bolen, Brinkman, Carreira, & Cole, 2001). Of these
children more than 60% are effectively cured by surgery, chemotherapy, radiation, or a
combination of these treatments taking this illness from a once 100% fatal disease to a life-
threatening chronic health condition (Bauman, Dortar, Leventhal, Perrin, & Pless, 1997). With
the improvement of current cancer fighting technologies, many children are spending less time
inpatient or may never be an inpatient cancer patient. In addition, many children are returning to
school during and/or after their treatment (Brown et al., 2011). Aside from the physical effects of
cancer, there is a growing body of research stating that children with cancer face a greater risk of
psychosocial and mental issues. One of the areas includes social issues like bullying and peer
interaction problems. These issues manifest at school (Lahteenmaki, Huostila, Hinkka, & Salmi,
2002).
Reentry Programs:
Crystal was treated on an outpatient basis, meaning that she has not had to miss long
periods of school, therefore never having to reenter school because of her diagnosis. This means
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 4
Crystal’s likelihood of receiving services for school support is slim. At Crystal’s hospital in a
Midwest city, school services are available upon request. Information about the existence of
these services is in a binder that is only offered upon request. Usually, the social worker will
suggest these services. Crystal was never an inpatient cancer patient and received treatments as
an outpatient or in the clinic building; receiving experimental medications that did not require a
hospital stay. Because of this, she and her family spent little time in hospital rooms to find out
about school programs. After spending time with the family, it can be seen that the family is very
proactive about Crystal’s care. This means that if additional services were available or known,
the family would have fought for them. In addition, the family had requested to see a social
worker “three times” but has never been referred to one, so finding services this way was not an
option.
One service or program common in the research of the school experience of children with
cancer is Reentry programs. Reentry programs are, broadly, in three different categories all with
different focusses; “1) school personnel, including teachers, guidance counselors, and school
nurses; 2) peers; 3) comprehensive programs that include the patient/student, siblings, and
family” (Cabat & Shafer, 2002). These programs are put in place to foster understanding and
acceptance among peers and to educate teachers on the physical and emotional effects of cancer.
These programs can take the form of activities, lectures, or discussions. Reentry programs are
started by the hospital social worker and worked on by both the hospital staff and school staff of
the child (Cabat & Shafer, 2002). These programs, as can be assumed, are often mostly available
to inpatient cancer patients and not outpatient cancer patients. Since most of the research is
focused on reentry programs, it is also important to note that the experience of outpatient
children with cancer has not been researched.
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 5
An exploration into the bullying and teasing that Crystal has had to endure at school is an
excellent way to discover a way to aid outpatient children with cancer at school. In addition, her
story illuminates the need for more research into the outpatient cancer patient experience.
Outpatient children with cancer, as seen through Crystal’s story, experience some of the same
behaviors and experiences as inpatient children with cancer but are not offered the same services.
What are the school experiences of an outpatient child with cancer and what can her story show
us to help others with cancer?
Teasing and Bullying: Physical Appearance:
Strangers:
Crystal’s condition causes her to gain weight and height very rapidly. She is considered
extremely obese; none of this has to do with food intake. Crystal does not whine or want for
more food; she eats like a normal child her age. Crystal has looked “different” than kids her age
for her entire life which has caused stares, comments, and mean remarks from strangers and
friends alike. Crystal’s sister, Jasmine, recounts a time, “we were at Culver’s when Crystal was
younger and a group of older women were staring and talking about Crystal in a mean way. We
tried to ignore but they were loud.” Not only do strangers stare and make loud comments about
Crystals appearance, they sometimes come up to her parents and provide harsh criticism of there
parenting. Crystal’s mother describes that some people will tell them how horrible they are, that
they should be ashamed of themselves and that they can’t believe they let her eat like that. Due
to Crystal’s physical appearance, she is unfairly judged and bullied by strangers.
School Personnel:
While Crystal and her family face scrutiny in public from strangers they also face
bullying and teasing from school professionals. When Crystal was first diagnosed, Crystal’s
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 6
family explained to her school teachers and classmates, Crystal’s condition and its ramifications.
Despite this, Crystal has experienced teasing and bullying her entire school career.
Crystal has had many experiences of faculty treating her poorly as a result of her
condition. One event, Crystal’s mother remembers, involved the gym/art teacher. Crystal, being
much heavier, cannot run as fast or as far as her peers. She gets tired and heated and may need to
sit down or rest for a while. Crystal’s mother explains that the old gym teacher made Crystal run
two laps around the gym and, since everyone was already done by the time she almost completed
her first lap, everyone sat and watched. The students even laughed as she pushed herself to
complete her laps. Other instances occurred where Crystal told the teacher she was tired and
hurting but he made her run the laps or other lengths anyways. Her gym teacher even failed her
in gym for not meeting the “requirements.” After Crystal’s mother was aware of these instances
she heatedly confronted the teacher and a 504 plan of care was finally put into place to ensure
Crystal could not be discriminated against for her size in school, especially gym.
Crystal’s gym teacher did not treat her in a way coherent with her condition but coherent
with certain stereotypes. Crystal was pushed to her limits unsafely. Every student is required to
run laps in gym class and participate in all activities. Often times when children complain about
being tired or their bodies hurting they are trying to get out of doing an activity. In addition,
individuals have a tendency to stereotype people who are overweight as lazy. A common sign of
cancer is hair loss or a chemotherapy port. But, since every cancer diagnosis and experience is
different, the way it affects the child’s appearance may be different. In this case, Crystal’s cancer
makes her heavier and taller than her peers making this not an obvious physical sign that she has
cancer. This may have aided in the assumptions that the gym teacher used to discriminate and
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 7
bully Crystal. These assumptions by the gym teacher may have caused him to push and over
exert Crystal to an unsafe level.
In addition to making quick assumptions of Crystal, the gym teacher may have not had
enough information about childhood cancer and its physical consequences. Common concerns of
teachers of children with cancer are lack of knowledge about the physical and emotional effects
of cancer and its treatment and uncertainty about realistic expectations (Brown et al., 2011). In
addition to not being well informed about cancer teachers may not or “cannot understand or
accept the frequent absences and changes in the pupil’s physical appearance (Ross & Scarvalone,
1982). In Crystal’s experience, maybe the gym teacher was unaware that her condition and
treatments often give her upset stomachs and “belly aches” which would give reason to her
needing a rest or to sit out in gym class. In all, teachers may judge or bully a child with cancer
because of lack of knowledge about the effects of cancer or inability to accept the changes a
child with cancer must endure.
Although contact with this gym teacher was unavailable, it can be assumed from this
situation that Crystal was treated unfairly and “bullied” because of her size whether the
reasoning was lack of information or unfair and quick assumptions.
Peers:
Crystal is bullied by peers for her physical appearance, due to her cancer diagnosis,
which is congruent with research. In a study by Lahteenmaki, Huostila, Hinkka and Salmi, the
researchers found that, “in most cases, the bullying was due to appearance” (2002). One
explanation for why children would bully a child with cancer based on appearances is that “other
children are often cruel to one who appears different or weak; this is their way of making the
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 8
child less like themselves” (2002). In this way, children may unconsciously bully Crystal so they
do not become sick like her.
Teasing and Bullying: Physical Ability:
In addition to being bullied for her physical appearance, Crystal is bullied and left out due
to her physical ability. Her weight makes it difficult to do some activities. In addition, her brain
tumor has caused hurtful foot issues which also inhibit her from certain activities. Crystal is
bullied in and out of school.
Feeling Left Out:
Crystal has had many experiences of being left out or bullied because of her physical
ability. One weekend at her family’s cabin, there was a candy hunt at dark near the pavilion.
Crystal was playing with her friend Lea when Lea’s other friends came and asked “let’s go to the
candy hunt.” They all got on their bikes and rode off without Crystal. Crystal cannot ride a bike
or keep up with them because of her size and physical ability. Crystal was visibly upset and
saddened by being left out of this activity.
In another instance, Crystal and her friends were going to play at the park with her two
older sisters. Crystal’s friends ran up to the park with one of Crystal’s sisters, Tina, while Crystal
walked behind with her oldest sister, Jasmine. While at the park, the friends stayed with Tina
who was playing basketball and other sports which were hard for Crystal to play. Crystal wanted
to play catch because it was something she could easily do but none of her friends wanted to play
that with her.
Being left out may be due to Crystal’s physical ability or, plainly, mean children. In
either circumstance, Crystal becomes very upset and disappointed. In one situation with a peer,
Crystal’s friend asked her to go on a walk and Crystal said that she could not because it was
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 9
dinner time. Crystal came back into the house and was very upset and sad. Her father Ricardo
told her it was nice they asked. Based on her reaction and previous reactions, it can be assessed
that although the friends asked and Crystal had a reason for not going on the walk, she was still
afraid her friends would leave her out. Her emotions and previous reactions to similar situations
share that she feels that her friends will leave her if she does not play with them all of the time or
with what they want to do; dropping anything and anyone to play with her “friends”. She is
afraid that her peers will leave her out because of her size and physical ability.
Research shows that Crystal’s fears are legitimate. Researchers Prevatt, Heffer, and Lowe
state that peers who are uncertain about the child with cancer’s physical ability “may reject the ill
child as a friend” (2000). The researchers continue that peer interactions and fears of rejection
are the primary concern of children with cancer at school (Prevatt, Heffer, & Lowe, 2000).
Children with cancer “fear teasing and rejection by their peers” which leads to feeling left out
(Prevatt et al., 2000). It is apparent that Crystal feels isolated from her peers and fears them
teasing or leaving her out. In addition, Crystal’s peers are leaving her out of activities, like
biking, because of her physical ability which is congruent with current research.
Teri, Crystal’s mother, stated that this is something Crystal will have to deal with and that
her peers “leave her out because she can’t do the things that they can.” After analyzing this
statement and Crystal’s situation, important conclusions can be drawn. Although bullying
children with cancer sounds horrible, understanding the thought process or viewpoint of the
“bullies” is essential to help children with cancer. As Crystal’s teacher says, “I don’t think (her
peers) know what cancer truly is and...they just don’t really get it.” Understanding and “getting”
what cancer is involves understanding that there are a plethora of physical consequences that
may accompany a cancer diagnosis. One of Crystals consequences is being heavier and therefore
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 10
unable to physically participate in some normal childhood activities. So, Crystal’s peers may not
be intentionally bullying her all of the time by leaving her out. They may want to play certain
activities that are normal for them but extremely hard or impossible for her. And as a child, they
may not fully understand that they are hurting Crystal’s feelings by choosing to do an activity
that she cannot. But, as also displayed in the research, Crystal becomes upset in any case since
she is fearful of being left out by her peers which depicts the need for intervention in this area.
This is not to say that all instances of bullying are due to children not understanding
cancer and its physical consequences. Some children understand cancer but still choose to bully.
One instance, Crystal explains, happened on the playground at recess. The older children were
blocking all of the avenues of getting up to the top of the play gym except one. There were a
rock wall, stairs, and a climbing net. Crystal can use the stairs and climbing net but cannot
support herself on the rock wall. She asked them to “please move” and they said we “don’t have
to move” and then told Crystal to “go climb up the rock wall”, to which Crystal replied “I
can’t...they were being mean”. The children knew she could not climb up the rock wall because
of her size and excluded and embarrassed her because of it. This situation exemplifies the
struggle of having a physical alteration because of cancer. Although, Crystal is bullied because
of her appearance and her physical ability, she is also treated negatively for certain attitudes and
behaviors she exhibits.
Teasing and Bullying: Attitude and Behaviors
During conversations with Crystal, she stated that people are mean to her because they
say that she is mean. This appears to be unorthodox; a happy positive girl, who would do
anything for her friends, is mean. These interactions shed a light into the complex emotions and
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 11
behaviors of children with cancer and will help to display possible solutions to help these
children enjoy school.
Follow the Rules: Make Me Proud:
To fully understand Crystal’s behavior that may or may not have something to do with
bullying, an understanding of some of her emotions and behaviors is needed. Crystal is very rule
orientated. Even at a physical therapy appointment, she pointed out that the other boy in the gym
was not following the rules. He was being loud and obnoxious and that was what you were
supposed to do. Children this age see the world as “black and white” good or bad.
Although Crystal is following developmental stages by adhering closely to the rules, she,
because of her past life experiences due to cancer, views following the rules in a different way.
Crystal enjoys making others proud of her. When she does something that another person is
happy or proud of her for she lights up and is genuinely happy. Crystal displays this response and
commitment to making others proud in all aspects of her life. At a physical therapy appointment
for her feet, Crystal completed a series of stretches. When she was finished she looked to the
Physical therapist and her mother who both gave her a thumbs up and praise. Crystal was
beaming from ear to ear; she was very proud of herself. So, although Crystal adheres to the rules
she does so with much more added pressure. She is to follow the rules because they are rules but
also to make others proud of her, like her teacher. Mrs. Groniki, Crystal’s teacher, explained that
Crystal was “very rule oriented, so she wanted to…make me proud of her” when talking about
how Crystal would always follow lunchroom rules. These behaviors, shaped by her experiences
with her diagnosis, are partly to cause for some bullying she endures.
Telling
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 12
Crystal’s tendency to follow the rules with extra pressure comes to head when she is
faced with choice of whether or not to tell. One instance that exemplifies this struggle and
pressure was when Crystal was playing foursquare and a rule was to go on your knees and play.
She said “I’m wearing a dress...and I can’t do that” so the other kids made her go to the end of
the line instead of letting her play like everyone else. Crystal explained that she “have to tell but
always I don’t because I don’t want to get in trouble.” Crystal feels like she has to tell because
that is what you do when someone is mean to you, a rule, but, says Crystal, she doesn’t want to
tell because “I don’t want to get yelled at and I don’t want kids to get mad at me.” The other
children, she states, call her mean. She wants others to treat her nice but cannot do much about it
because she feels she cannot or should not tell her teachers.
Although she feels this way, Crystal chooses to keep telling on her peers when they are
mean further making them think she is “mean” and worthy of being bullied. She explained that
“if you hurt my feelings I’m going to be telling. I’m not going to keep doing it (partaking in a
situation that is hurting her feelings) cuz I’m just going to tell cuz otherwise I can’t stop it. I
can’t stop them doing that cuz I don’t control them.” These anecdotes illuminate Crystal’s
concern with the rules. She decides to tell, regardless of what her peers are going to do, because
you are supposed to tell the teacher when someone is being mean.
Sharing:
When asked what would make her peers think or say that she is mean Crystal answered,
“if I don’t let them play and I want to play by myself....but if someone else is playing with me
than I have to let everyone and (Trever, a mean boy)...goes to tell on me and I always get yelled
at for not sharing.” Crystal is allowed to play by herself at recess and enjoys playing “one on one
or the one on just a couple kids” says her teacher. However, like she said, she has to share with
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 13
everyone if she is sharing with one person, even if that means children that are mean to her. This
is counter to what her parents tell her to do when someone is being mean, “she says to walk away
and just ignore, just have fun and try to play something by yourself” says Crystal. So, Crystal is
forced to share with children that are mean to her for other reasons but is told she should ignore
them or play by herself. Then these children that Crystal ignores become mad and tell, making
Crystal look like a mean person.
My Way or the Highway:
In addition to telling on others Crystal has also been described as bossy. She is described
by her mother as loving “to get her way” and by her brother as “she really acts like you have to
do what she says”. She is even described as having a “bad attitude” but, her mother continues, “I
think it is all due to her condition and all she has had to endure.” Research does state that
children with cancer “struggle with not being the center of attention, resisted when their
preferences were not indulged”, and exhibit “bossiness” (McLoone, Wakefield, & Cohn, 2013).
The current research states that children often get their way when they have a terminal illness but
does not go into detail as to exactly why children with cancer exhibit these traits but Crystal’s
case provides theories.
Crystal’s teacher, Mrs. GronikI explains how these common behaviors are displayed in
school. She describes “the more comfortable she felt the more...she liked things her way.” She
further explained that “the other kids saw it as her trying to boss them around….tried to be in
charge and I think the other kids didn’t really like that as they got to know her.”
Mrs. Groniki, explained what she did with the class in these instances, “we worked in
small groups...and I could take the second graders and match them with a first grader and they
could work together and the 2nd grade could help the 1st grade and Crystal was one of those real
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 14
strong leaders that I could depend on to get the job done.” Mrs. Groniki, instead of seeing
Crystal’s bossy behavior as part of a “bad attitude,” chose to see it as strength and utilize it in a
leadership role. This was beneficial to Crystal, being in a situation where the learned behaviors
from having cancer were celebrated instead of scolded as bad behavior. Mrs. GronikI further
explains that during free time, “the less structured things”, she had to work on how to talk to
each other and play together. But she states passionately that “sharing with Crystal, never an
issue..[she] wanted everyone to be friends.”
In instances at school it can be see that Crystal’s controlling or bossy behavior comes
about when she is comfortable in situations. These behaviors can be off-putting to some students,
but if utilized in the right avenues, can be rewarding skills for Crystal and the rest of the students.
During these times it is important for teachers and other professionals to recognize the strengths
in children with cancer. Although the child comes off as bossy or always wanting her way, these
behaviors can be seen as strengths and utilized in a leadership or teaching role; like in Crystal’s
case. Also, giving a child with cancer an attribute to find pride in, like Crystal, can be extremely
rewarding in the area of psycho-social care.
This is not to say that Crystal is always innocent when being bossy and controlling.
Sometimes she just wants her way, either because of her past experiences growing up with
cancer or just in congruence with child development. In one instance, Crystal was with her
mother and grandmother at a new restaurant. Crystal was hungry for something else and began to
vocally complain about the food and look upset and annoyed. TerI scolded Crystal for this and
then whispered to me that “she gets bucky when she doesn’t get her way.” In addition, in many
of Crystal’s school report cards or other artifacts, working on being “the boss of only herself”,
always using “a nice tone of voice”, and to “not argue” when the teacher or a peer says
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 15
something she does not like, were prevalent. In these ways it is clear that Crystal is having
trouble with some of the same behavioral issues described in the research. Although some of
Crystal’s behavior should not be condoned, understanding her experiences that made her develop
these behaviors is needed. In addition, new ways of approaching and correcting these behaviors,
instead of just scolding, is essential to helping children with cancer in the long run.
Another lens in which to look at these controlling behaviors is as a coping mechanism.
To prevent herself from harm or unpleasant emotions, Crystal may try to control situations so
that she is able to participate or not be left out. In this way, she may control her peers to ensure
they are not mean. This was also apparent in Crystal’s response to telling on her peers, “I’m just
going to tell cuz otherwise I can’t stop it. I can’t stop them doing that cuz I don’t control them.”
These anecdotes illuminate Crystals concern with the rules and control as a coping mechanism.
She decides to tell, regardless of what her peers are going to do, because you are supposed to tell
the teacher when someone is being mean. She also realizes she cannot control them or their
behavior and then decides to tell; as somewhat of a last option to protect herself from getting
hurt.
Maturity:
In addition to controlling behaviors, telling on peers, and following the rules causing her
peer interaction issues; Crystal’s maturity level leads to issues as well. Crystal has been
described by various individuals mature. Her entire family agrees that she is mature for her age.
Her respite provider from the county agrees that Crystal is the “most mature.” In addition, her
doctors have noted that “she speaks with good vocabulary for her age.” Crystal’s teacher, Mrs.
Groniki, also stated that “having to go through more than any of us have had to go through has
made her that much more mature...the other kids and Crystal don’t relate. They can’t.” She
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 16
points out that not being able to relate to her peers is a great struggle for Crystal at school,
especially in the area of peer interaction and bullying.
Mrs. GronikI explains that Crystal’s maturity level makes it hard for her to relate to her
peers causing her to become upset or feel victimized. Mrs. GronikI goes on to say that “she
wanted everyone to be friends and everyone to be included and I don’t know if everyone was
always real receptive to that.” She explains that kids are “pretty immature at this age and she was
more mature.” Mrs. GronikI sites this as a reason that the kids were not always nice to Crystal or
would leave her out. She also stated that the kids were not “receptive to what she wanted to do or
her ideas.” In all, Crystal’s advanced maturity and life experiences made it hard for her to relate
to her peers. The ideas for fun and playing were not at the level of her peers or were not things
her peers wanted to do so they would choose something else; leaving her out or ignoring her.
Although she has trouble relating to her peers, Mrs. GronikI points out that Crystal
“related more to the older kids and adults.” This is in congruence with current research.
Researchers, McLoone, Wakefield, and Cohn, found that parents in their study stated that their
children with cancer had difficulties forming friendships with children their own age (2013). In
addition, the researchers found that children with cancer, as reported by their parents, “formed
close bonds with their teachers or older school children, in preference to children their own age”
(McLoone et al., 2013). She continues to recount that this “became a challenge for her because
some days she would say nobody wanted to play with me or I tried playing with so and so and
they walked away.”
On the Sunny Side:
Despite Crystal’s rare and uncertain condition, traumatic and constant hospital visits, and
unrelenting teasing and bullying, she is still a positive and energetic 8 year old girl. Crystal
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 17
experiences situations and behaviors common of a child cancer patient but also brings to light
new theories of the child cancer experience. Crystal, despite her bad condition and constant
teasing, is overly caring, kind hearted, funny, loving, and extremely self-confident, with an
amazingly positive outlook on her life.
Positivity:
Despite her condition, constant bullying and hardships, Crystal is a very positive and
happy young kid. She doesn’t just experiences bouts of happiness; she truly is a happy child.
Teri, in journals she kept throughout Crystal’s cancer journey, explains that “Crystal is Crystal.
No matter what is going on she is happy...she keeps going and having fun, and loves life!”
Crystal’s doctors agree that she is “a happy, lively girl…” Mrs. GronikI states that Crystal has
such a “positive outlook” and that she is “such a fun spirited kid...she makes the most of what
ever were doing.”
I’m Cute:
In addition to being a genuinely positive person, Crystal is extremely self-confident.
Crystal is often bullied for her size and is aware that she cannot physically do some activities
because of her size. For example, when Crystal was at the park she stated that “I have a big waist
and this is almost too small for me” when she was deciding whether or not to go down the slide.
Despite teasing, Crystal displays a great deal of self-confidence and high self-esteem. During
school, Crystal was assigned a Creative Writing Journal and wrote about herself. She stated, “I
like the swimming pool...I am very good at it. I am very cool,” and “One thing I do really well is
sing and dance.” In addition, in response to the question, What is one thing you like about
yourself, Crystal answered “I’m cute.” Crystal also enjoys taking pictures and videos of herself
on her iPhone. She also has a picture of herself as her screensaver and lock screen. When asked
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 18
what made her choose those photos she replied, “because I look good.” It can be seen that
despite the negativity surrounding her health and her size she is still very confident with a high
self-esteem.
How to Make a Change:
Although Crystal experiences turmoil with her health and teasing and bulling she is still a
very positive and self-confident girl. Although she is genuinely happy she still experiences times
were she sad and “just wants to give up” or does not want to go to school. Crystal has not been
offered school reentry services from her hospital or any type of social service for that matter.
TerI explains that they have not met with a social worker and have requested one three times
from the hospital. When I met with the social worker of the hospital it can be seen that she sees a
great deal of patients, inpatient and outpatient, in two different clinics. She cannot possibly see
every patient and some patients must take more of a priority. Since Crystal has a good support
system and has a positive attitude it can be assumed that she would not be in crisis to be seen by
the social worker. So, how do we help children like Crystal experience school in a positive and
rewarding manner?
Possible Solutions:
The case study brings up excellent points and even better possible solutions. One social
worker assigned to so many patients at a hospital will never be able to accurately assist every
patient. As with any agency, a social worker must prioritize crisis clients. The social worker at
the hospital where Crystal is treated is very passionate and hardworking, but simply cannot assist
every patient as much as she wishes. Since the population of children with cancer at school is
significantly less than a hospital, a school social worker or school staff would be better able to
assist children with cancer experience school positivity.
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 19
When a child is diagnosed with cancer, the family should alert the school staff who will
then put plans in motion to assist the child at school. Availability of these assistances should be
described in student handouts at the beginning of each year, in the main office, and on the school
website. In addition, hospital staff could ask the family if they would like a note sent or call
made to their school regarding the cancer diagnosis and the school would take the process from
there. This option would be brought to the attention of families by the doctor or the health unit
coordinator that is scheduling the appointments, as part of routine visits for the cancer diagnosis.
In this way, it is more contingent on the doctor or HUC, who sees the family every visit, and not
the social worker who may have too many patients to see. Also, most of the process is carried out
by the school staff, the area in which programs need to be implemented instead of the hospital
staff coming into the school.
Illness Explained:
In Crystal’s experience, she was teased because of her size which is due to her cancer.
For most reentry programs, initiated by the hospital, the child’s class is told of the illness and its
effects to foster understanding of differences. Since children with cancer can experience the
effects of cancer for years after diagnosis, continual explanation is needed to effect change in
teasing. A solution would be to start with an initial physical presentation or talk about the child’s
illness. Every year after, send a note home regarding the child’s condition. Of course, these
solutions will only be initiated if the child’s parents or guardians consent.
Utilize Strengths In Classroom:
In this case study, many solutions to common behaviors of children with cancer that may
cause teasing, emerged. Crystal, as explained by her family and teacher, is sometimes bossy and
controlling but, as Mrs. GronikI points out, she is a great leader. Mrs. GronikI actually utilized
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 20
Crystal’s leadership ability by having the older children mentor the younger ones. In this way,
Crystal was able to use her “controlling and bossy” behaviors for something constructive. It is in
this way that children with cancer should be treated or handled in the classroom. Instead of
scolding a child with cancer for behaviors, find strengths and constructively use the behaviors.
Though, Mrs. GronikI was not aware that bossy, controlling behavior was common
amongst children with cancer she unknowingly illuminated how to help children with cancer
excel in the classroom and enjoy school. Mrs. GronikI paired 1st and 2nd graders together and
allowed the 2nd graders to help or mentor the 1st graders in various subjects. This allowed
Crystal to utilize her learned behaviors in a structured and healthy way. To expand on this
solution, teachers should be given a packet of information about children with cancer. It would
include common behaviors, attitudes, feelings, and school tendencies of children with cancer.
The teacher can be aware of these issues in her classroom and employ the following tactics. Just
as mentoring can be a constructive outlet for children displaying bossy behaviors, a big buddy
program can be helpful for children with cancer that relate better to older peers. This program
will give the children with cancer a person to confide in if they feel left out by children their age.
In addition, this big buddy can teach the child play and peer interaction skills.
Learning How to Communicate:
In addition to the suggestions provided above, programs or activities that teach students
how to nicely communicate to other children, especially children who are “different” is
necessary. These programs may include role playing bullying situations or learning how to spot a
bully. In any form, an activity or program teaching young children how to communicate to each
other without being mean will help the school experience of not only children with cancer but
others as well.
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 21
All of the suggested tactics can be beneficial to not only children with cancer but all
students. This makes these programs more attractive to school officials.
What’s Next:
Most reentry programs focus on the inpatient child. These programs do not fully help
outpatient children with cancer that have never had to leave school but still face obstacles. In
addition, reentry programs do not aid or have research in effectiveness for the longevity of
success of the programs. It begs the question, are these programs helping the children intended in
the long run? In Crystal’s story, these measures were not helping. Crystal’s mother talked to the
school when she was diagnosed, at 18 months. Now that she is eight, she is still bullied and
teased for reasons relating to her illness. This shows that measures need to be taken to aid
children with lasting effects of cancer throughout their school career.
Future research in this area should focus on the school experience of cancer patients years
after initial diagnosis and children with cancer that continually battle their diagnosis for many
years. Research should also focus on the outpatient experience as the current literature is slim.
Do outpatient and inpatient cancer patients experience the same situations in school? Crystal has
experienced some of the same behaviors but has not been offered services by school or hospital
personnel that would usually be afforded to inpatient cancer patients. Would outpatient children
with cancer also benefit from reentry programs or the suggestions provided?
Children with cancer face a battle that some may never understand. They struggle with
their health as well as at school. These children, like Crystal, should be afforded the same quality
of life as their peers.
SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 22
References:
Bauman, L., Dortar, D., Leventhal, J., Perrin, E., & Pless, I. (1997). A review of psychosocial
interventions for children with chronic health conditions. Pediatrics, 100(2), 244-244.
Brown, M., Bolen, L., Brinkman, T., Carreira, K., & Cole, S. (2011). A Collaborative Strategy
With Medical Providers to Improve Training for Teachers of Children With Cancer.
Journal of Educational and Psychological Consultation, 21, 149-165.
Cabat, T., & Shafer, K. (2002). Resources for Facilitating Back to School Programs. Cancer
Practice, 10(2), 105-108. Retrieved February 1, 2015.
Lahteenmaki, P., Huostim, T. (2002). Childhood cancer patients at school. European Journal of
Cancer, 38, 1227-1240.
McLoone, J., Wakefield, C., & Cohn, R. (2013). Childhood cancer survivors' school (re)entry:
Australian parents' perceptions. European Journal of Cancer Care, 22, 484-492.
Prevatt, F., Heffer, R., & Lowe, P. (2000). A Review of School Reintegration Programs for
Children with Cancer. Journal of School Psychology, 38(5), 447-467.
Ross, J., & Scarvalone, S. (1982). Facilitating the pediatric cancer patient's return to school.
Social Work, 256-261.

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School Experiences Write Up

  • 1. Running Head: SCHOOL EXPERIENCES OF AN OUTPATIENT CHILD WITH CANCER 1 The School Experiences of Crystal, an Outpatient Child With Cancer Gabrielle Cypher Carthage College: Social Work Department
  • 2. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 2 Background Information: Crystal is a young energetic 8 year old girl. She lives in a small Midwest town attending 2nd grade at a small private school which her Mom also teaches at. Crystal is part of a large blended family which includes her Mom, Dad, two older half-sisters, and older half-brother. Crystal enjoys swimming in the pool, hanging out with her neighbors, and playing with her American Girl Dolls. Crystal is a very active and lively girl who is a great singer and dancer. Crystal’s favorite time of the year is Christmas and summer (so she can go swimming). She loves her family and having fun with them at their cabin up north. She likes to watch her brother and sisters play sports and perform in show choir. Crystal is a loving and caring young girl that loves to take care of those around her. She is extremely loving and genuinely cares about those around her. Crystal likes to make her parents proud and often exclaims how brave she is. Crystal has faced many obstacles in her life but her positive personality is infectious. Crystal’s birth was very traumatic, “she had a broken collar bone and was not breathing...in fact she was purple--and we were terrified” said Crystals Mom, Teri, 46. Crystal’s young life continued to be rot with difficult situations. After her grandpa died, Crystal began gaining weight and throwing up about 6 times a day. Crystal and her family found out that she had a very rare, inoperable, slow growing, cancerous brain tumor in the hypothalamus region of her brain; she was 18 months. Children’s Hospital then began tests and treatments to try to understand and treat Crystal’s tumor. The family was also treated poorly by some staff at the Children’s Hospital; the family was told to “not reward her (Crystal) with a donut” and was told, prematurely, that Crystal would only live to be 6 years old. After some confrontations with the Hospital staff, which awarded Crystal’s mother with the term “pushy”, the family was referred to the Mayo
  • 3. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 3 Clinic in Rochester Minnesota; 6 hours away from the family’s home. Crystal began monthly MRI’s, tests, and treatments at the Mayo Clinic. Crystal’s tumor grew and she was administered chemotherapy treatment once a week for a year; she was 5 years old. The tumor had successfully shrunk to a size the doctors were comfortable with. Crystal’s doctors then put her on new experimental treatments and medicines. Crystal has been on experimental medications and treatment trials since the discovery of her condition. She continues these treatments with no success to this day. Current Research: Over 10,400 children and adolescents in the United States under the age of 15 will be diagnosed with cancer this year (Brown, Bolen, Brinkman, Carreira, & Cole, 2001). Of these children more than 60% are effectively cured by surgery, chemotherapy, radiation, or a combination of these treatments taking this illness from a once 100% fatal disease to a life- threatening chronic health condition (Bauman, Dortar, Leventhal, Perrin, & Pless, 1997). With the improvement of current cancer fighting technologies, many children are spending less time inpatient or may never be an inpatient cancer patient. In addition, many children are returning to school during and/or after their treatment (Brown et al., 2011). Aside from the physical effects of cancer, there is a growing body of research stating that children with cancer face a greater risk of psychosocial and mental issues. One of the areas includes social issues like bullying and peer interaction problems. These issues manifest at school (Lahteenmaki, Huostila, Hinkka, & Salmi, 2002). Reentry Programs: Crystal was treated on an outpatient basis, meaning that she has not had to miss long periods of school, therefore never having to reenter school because of her diagnosis. This means
  • 4. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 4 Crystal’s likelihood of receiving services for school support is slim. At Crystal’s hospital in a Midwest city, school services are available upon request. Information about the existence of these services is in a binder that is only offered upon request. Usually, the social worker will suggest these services. Crystal was never an inpatient cancer patient and received treatments as an outpatient or in the clinic building; receiving experimental medications that did not require a hospital stay. Because of this, she and her family spent little time in hospital rooms to find out about school programs. After spending time with the family, it can be seen that the family is very proactive about Crystal’s care. This means that if additional services were available or known, the family would have fought for them. In addition, the family had requested to see a social worker “three times” but has never been referred to one, so finding services this way was not an option. One service or program common in the research of the school experience of children with cancer is Reentry programs. Reentry programs are, broadly, in three different categories all with different focusses; “1) school personnel, including teachers, guidance counselors, and school nurses; 2) peers; 3) comprehensive programs that include the patient/student, siblings, and family” (Cabat & Shafer, 2002). These programs are put in place to foster understanding and acceptance among peers and to educate teachers on the physical and emotional effects of cancer. These programs can take the form of activities, lectures, or discussions. Reentry programs are started by the hospital social worker and worked on by both the hospital staff and school staff of the child (Cabat & Shafer, 2002). These programs, as can be assumed, are often mostly available to inpatient cancer patients and not outpatient cancer patients. Since most of the research is focused on reentry programs, it is also important to note that the experience of outpatient children with cancer has not been researched.
  • 5. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 5 An exploration into the bullying and teasing that Crystal has had to endure at school is an excellent way to discover a way to aid outpatient children with cancer at school. In addition, her story illuminates the need for more research into the outpatient cancer patient experience. Outpatient children with cancer, as seen through Crystal’s story, experience some of the same behaviors and experiences as inpatient children with cancer but are not offered the same services. What are the school experiences of an outpatient child with cancer and what can her story show us to help others with cancer? Teasing and Bullying: Physical Appearance: Strangers: Crystal’s condition causes her to gain weight and height very rapidly. She is considered extremely obese; none of this has to do with food intake. Crystal does not whine or want for more food; she eats like a normal child her age. Crystal has looked “different” than kids her age for her entire life which has caused stares, comments, and mean remarks from strangers and friends alike. Crystal’s sister, Jasmine, recounts a time, “we were at Culver’s when Crystal was younger and a group of older women were staring and talking about Crystal in a mean way. We tried to ignore but they were loud.” Not only do strangers stare and make loud comments about Crystals appearance, they sometimes come up to her parents and provide harsh criticism of there parenting. Crystal’s mother describes that some people will tell them how horrible they are, that they should be ashamed of themselves and that they can’t believe they let her eat like that. Due to Crystal’s physical appearance, she is unfairly judged and bullied by strangers. School Personnel: While Crystal and her family face scrutiny in public from strangers they also face bullying and teasing from school professionals. When Crystal was first diagnosed, Crystal’s
  • 6. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 6 family explained to her school teachers and classmates, Crystal’s condition and its ramifications. Despite this, Crystal has experienced teasing and bullying her entire school career. Crystal has had many experiences of faculty treating her poorly as a result of her condition. One event, Crystal’s mother remembers, involved the gym/art teacher. Crystal, being much heavier, cannot run as fast or as far as her peers. She gets tired and heated and may need to sit down or rest for a while. Crystal’s mother explains that the old gym teacher made Crystal run two laps around the gym and, since everyone was already done by the time she almost completed her first lap, everyone sat and watched. The students even laughed as she pushed herself to complete her laps. Other instances occurred where Crystal told the teacher she was tired and hurting but he made her run the laps or other lengths anyways. Her gym teacher even failed her in gym for not meeting the “requirements.” After Crystal’s mother was aware of these instances she heatedly confronted the teacher and a 504 plan of care was finally put into place to ensure Crystal could not be discriminated against for her size in school, especially gym. Crystal’s gym teacher did not treat her in a way coherent with her condition but coherent with certain stereotypes. Crystal was pushed to her limits unsafely. Every student is required to run laps in gym class and participate in all activities. Often times when children complain about being tired or their bodies hurting they are trying to get out of doing an activity. In addition, individuals have a tendency to stereotype people who are overweight as lazy. A common sign of cancer is hair loss or a chemotherapy port. But, since every cancer diagnosis and experience is different, the way it affects the child’s appearance may be different. In this case, Crystal’s cancer makes her heavier and taller than her peers making this not an obvious physical sign that she has cancer. This may have aided in the assumptions that the gym teacher used to discriminate and
  • 7. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 7 bully Crystal. These assumptions by the gym teacher may have caused him to push and over exert Crystal to an unsafe level. In addition to making quick assumptions of Crystal, the gym teacher may have not had enough information about childhood cancer and its physical consequences. Common concerns of teachers of children with cancer are lack of knowledge about the physical and emotional effects of cancer and its treatment and uncertainty about realistic expectations (Brown et al., 2011). In addition to not being well informed about cancer teachers may not or “cannot understand or accept the frequent absences and changes in the pupil’s physical appearance (Ross & Scarvalone, 1982). In Crystal’s experience, maybe the gym teacher was unaware that her condition and treatments often give her upset stomachs and “belly aches” which would give reason to her needing a rest or to sit out in gym class. In all, teachers may judge or bully a child with cancer because of lack of knowledge about the effects of cancer or inability to accept the changes a child with cancer must endure. Although contact with this gym teacher was unavailable, it can be assumed from this situation that Crystal was treated unfairly and “bullied” because of her size whether the reasoning was lack of information or unfair and quick assumptions. Peers: Crystal is bullied by peers for her physical appearance, due to her cancer diagnosis, which is congruent with research. In a study by Lahteenmaki, Huostila, Hinkka and Salmi, the researchers found that, “in most cases, the bullying was due to appearance” (2002). One explanation for why children would bully a child with cancer based on appearances is that “other children are often cruel to one who appears different or weak; this is their way of making the
  • 8. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 8 child less like themselves” (2002). In this way, children may unconsciously bully Crystal so they do not become sick like her. Teasing and Bullying: Physical Ability: In addition to being bullied for her physical appearance, Crystal is bullied and left out due to her physical ability. Her weight makes it difficult to do some activities. In addition, her brain tumor has caused hurtful foot issues which also inhibit her from certain activities. Crystal is bullied in and out of school. Feeling Left Out: Crystal has had many experiences of being left out or bullied because of her physical ability. One weekend at her family’s cabin, there was a candy hunt at dark near the pavilion. Crystal was playing with her friend Lea when Lea’s other friends came and asked “let’s go to the candy hunt.” They all got on their bikes and rode off without Crystal. Crystal cannot ride a bike or keep up with them because of her size and physical ability. Crystal was visibly upset and saddened by being left out of this activity. In another instance, Crystal and her friends were going to play at the park with her two older sisters. Crystal’s friends ran up to the park with one of Crystal’s sisters, Tina, while Crystal walked behind with her oldest sister, Jasmine. While at the park, the friends stayed with Tina who was playing basketball and other sports which were hard for Crystal to play. Crystal wanted to play catch because it was something she could easily do but none of her friends wanted to play that with her. Being left out may be due to Crystal’s physical ability or, plainly, mean children. In either circumstance, Crystal becomes very upset and disappointed. In one situation with a peer, Crystal’s friend asked her to go on a walk and Crystal said that she could not because it was
  • 9. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 9 dinner time. Crystal came back into the house and was very upset and sad. Her father Ricardo told her it was nice they asked. Based on her reaction and previous reactions, it can be assessed that although the friends asked and Crystal had a reason for not going on the walk, she was still afraid her friends would leave her out. Her emotions and previous reactions to similar situations share that she feels that her friends will leave her if she does not play with them all of the time or with what they want to do; dropping anything and anyone to play with her “friends”. She is afraid that her peers will leave her out because of her size and physical ability. Research shows that Crystal’s fears are legitimate. Researchers Prevatt, Heffer, and Lowe state that peers who are uncertain about the child with cancer’s physical ability “may reject the ill child as a friend” (2000). The researchers continue that peer interactions and fears of rejection are the primary concern of children with cancer at school (Prevatt, Heffer, & Lowe, 2000). Children with cancer “fear teasing and rejection by their peers” which leads to feeling left out (Prevatt et al., 2000). It is apparent that Crystal feels isolated from her peers and fears them teasing or leaving her out. In addition, Crystal’s peers are leaving her out of activities, like biking, because of her physical ability which is congruent with current research. Teri, Crystal’s mother, stated that this is something Crystal will have to deal with and that her peers “leave her out because she can’t do the things that they can.” After analyzing this statement and Crystal’s situation, important conclusions can be drawn. Although bullying children with cancer sounds horrible, understanding the thought process or viewpoint of the “bullies” is essential to help children with cancer. As Crystal’s teacher says, “I don’t think (her peers) know what cancer truly is and...they just don’t really get it.” Understanding and “getting” what cancer is involves understanding that there are a plethora of physical consequences that may accompany a cancer diagnosis. One of Crystals consequences is being heavier and therefore
  • 10. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 10 unable to physically participate in some normal childhood activities. So, Crystal’s peers may not be intentionally bullying her all of the time by leaving her out. They may want to play certain activities that are normal for them but extremely hard or impossible for her. And as a child, they may not fully understand that they are hurting Crystal’s feelings by choosing to do an activity that she cannot. But, as also displayed in the research, Crystal becomes upset in any case since she is fearful of being left out by her peers which depicts the need for intervention in this area. This is not to say that all instances of bullying are due to children not understanding cancer and its physical consequences. Some children understand cancer but still choose to bully. One instance, Crystal explains, happened on the playground at recess. The older children were blocking all of the avenues of getting up to the top of the play gym except one. There were a rock wall, stairs, and a climbing net. Crystal can use the stairs and climbing net but cannot support herself on the rock wall. She asked them to “please move” and they said we “don’t have to move” and then told Crystal to “go climb up the rock wall”, to which Crystal replied “I can’t...they were being mean”. The children knew she could not climb up the rock wall because of her size and excluded and embarrassed her because of it. This situation exemplifies the struggle of having a physical alteration because of cancer. Although, Crystal is bullied because of her appearance and her physical ability, she is also treated negatively for certain attitudes and behaviors she exhibits. Teasing and Bullying: Attitude and Behaviors During conversations with Crystal, she stated that people are mean to her because they say that she is mean. This appears to be unorthodox; a happy positive girl, who would do anything for her friends, is mean. These interactions shed a light into the complex emotions and
  • 11. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 11 behaviors of children with cancer and will help to display possible solutions to help these children enjoy school. Follow the Rules: Make Me Proud: To fully understand Crystal’s behavior that may or may not have something to do with bullying, an understanding of some of her emotions and behaviors is needed. Crystal is very rule orientated. Even at a physical therapy appointment, she pointed out that the other boy in the gym was not following the rules. He was being loud and obnoxious and that was what you were supposed to do. Children this age see the world as “black and white” good or bad. Although Crystal is following developmental stages by adhering closely to the rules, she, because of her past life experiences due to cancer, views following the rules in a different way. Crystal enjoys making others proud of her. When she does something that another person is happy or proud of her for she lights up and is genuinely happy. Crystal displays this response and commitment to making others proud in all aspects of her life. At a physical therapy appointment for her feet, Crystal completed a series of stretches. When she was finished she looked to the Physical therapist and her mother who both gave her a thumbs up and praise. Crystal was beaming from ear to ear; she was very proud of herself. So, although Crystal adheres to the rules she does so with much more added pressure. She is to follow the rules because they are rules but also to make others proud of her, like her teacher. Mrs. Groniki, Crystal’s teacher, explained that Crystal was “very rule oriented, so she wanted to…make me proud of her” when talking about how Crystal would always follow lunchroom rules. These behaviors, shaped by her experiences with her diagnosis, are partly to cause for some bullying she endures. Telling
  • 12. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 12 Crystal’s tendency to follow the rules with extra pressure comes to head when she is faced with choice of whether or not to tell. One instance that exemplifies this struggle and pressure was when Crystal was playing foursquare and a rule was to go on your knees and play. She said “I’m wearing a dress...and I can’t do that” so the other kids made her go to the end of the line instead of letting her play like everyone else. Crystal explained that she “have to tell but always I don’t because I don’t want to get in trouble.” Crystal feels like she has to tell because that is what you do when someone is mean to you, a rule, but, says Crystal, she doesn’t want to tell because “I don’t want to get yelled at and I don’t want kids to get mad at me.” The other children, she states, call her mean. She wants others to treat her nice but cannot do much about it because she feels she cannot or should not tell her teachers. Although she feels this way, Crystal chooses to keep telling on her peers when they are mean further making them think she is “mean” and worthy of being bullied. She explained that “if you hurt my feelings I’m going to be telling. I’m not going to keep doing it (partaking in a situation that is hurting her feelings) cuz I’m just going to tell cuz otherwise I can’t stop it. I can’t stop them doing that cuz I don’t control them.” These anecdotes illuminate Crystal’s concern with the rules. She decides to tell, regardless of what her peers are going to do, because you are supposed to tell the teacher when someone is being mean. Sharing: When asked what would make her peers think or say that she is mean Crystal answered, “if I don’t let them play and I want to play by myself....but if someone else is playing with me than I have to let everyone and (Trever, a mean boy)...goes to tell on me and I always get yelled at for not sharing.” Crystal is allowed to play by herself at recess and enjoys playing “one on one or the one on just a couple kids” says her teacher. However, like she said, she has to share with
  • 13. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 13 everyone if she is sharing with one person, even if that means children that are mean to her. This is counter to what her parents tell her to do when someone is being mean, “she says to walk away and just ignore, just have fun and try to play something by yourself” says Crystal. So, Crystal is forced to share with children that are mean to her for other reasons but is told she should ignore them or play by herself. Then these children that Crystal ignores become mad and tell, making Crystal look like a mean person. My Way or the Highway: In addition to telling on others Crystal has also been described as bossy. She is described by her mother as loving “to get her way” and by her brother as “she really acts like you have to do what she says”. She is even described as having a “bad attitude” but, her mother continues, “I think it is all due to her condition and all she has had to endure.” Research does state that children with cancer “struggle with not being the center of attention, resisted when their preferences were not indulged”, and exhibit “bossiness” (McLoone, Wakefield, & Cohn, 2013). The current research states that children often get their way when they have a terminal illness but does not go into detail as to exactly why children with cancer exhibit these traits but Crystal’s case provides theories. Crystal’s teacher, Mrs. GronikI explains how these common behaviors are displayed in school. She describes “the more comfortable she felt the more...she liked things her way.” She further explained that “the other kids saw it as her trying to boss them around….tried to be in charge and I think the other kids didn’t really like that as they got to know her.” Mrs. Groniki, explained what she did with the class in these instances, “we worked in small groups...and I could take the second graders and match them with a first grader and they could work together and the 2nd grade could help the 1st grade and Crystal was one of those real
  • 14. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 14 strong leaders that I could depend on to get the job done.” Mrs. Groniki, instead of seeing Crystal’s bossy behavior as part of a “bad attitude,” chose to see it as strength and utilize it in a leadership role. This was beneficial to Crystal, being in a situation where the learned behaviors from having cancer were celebrated instead of scolded as bad behavior. Mrs. GronikI further explains that during free time, “the less structured things”, she had to work on how to talk to each other and play together. But she states passionately that “sharing with Crystal, never an issue..[she] wanted everyone to be friends.” In instances at school it can be see that Crystal’s controlling or bossy behavior comes about when she is comfortable in situations. These behaviors can be off-putting to some students, but if utilized in the right avenues, can be rewarding skills for Crystal and the rest of the students. During these times it is important for teachers and other professionals to recognize the strengths in children with cancer. Although the child comes off as bossy or always wanting her way, these behaviors can be seen as strengths and utilized in a leadership or teaching role; like in Crystal’s case. Also, giving a child with cancer an attribute to find pride in, like Crystal, can be extremely rewarding in the area of psycho-social care. This is not to say that Crystal is always innocent when being bossy and controlling. Sometimes she just wants her way, either because of her past experiences growing up with cancer or just in congruence with child development. In one instance, Crystal was with her mother and grandmother at a new restaurant. Crystal was hungry for something else and began to vocally complain about the food and look upset and annoyed. TerI scolded Crystal for this and then whispered to me that “she gets bucky when she doesn’t get her way.” In addition, in many of Crystal’s school report cards or other artifacts, working on being “the boss of only herself”, always using “a nice tone of voice”, and to “not argue” when the teacher or a peer says
  • 15. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 15 something she does not like, were prevalent. In these ways it is clear that Crystal is having trouble with some of the same behavioral issues described in the research. Although some of Crystal’s behavior should not be condoned, understanding her experiences that made her develop these behaviors is needed. In addition, new ways of approaching and correcting these behaviors, instead of just scolding, is essential to helping children with cancer in the long run. Another lens in which to look at these controlling behaviors is as a coping mechanism. To prevent herself from harm or unpleasant emotions, Crystal may try to control situations so that she is able to participate or not be left out. In this way, she may control her peers to ensure they are not mean. This was also apparent in Crystal’s response to telling on her peers, “I’m just going to tell cuz otherwise I can’t stop it. I can’t stop them doing that cuz I don’t control them.” These anecdotes illuminate Crystals concern with the rules and control as a coping mechanism. She decides to tell, regardless of what her peers are going to do, because you are supposed to tell the teacher when someone is being mean. She also realizes she cannot control them or their behavior and then decides to tell; as somewhat of a last option to protect herself from getting hurt. Maturity: In addition to controlling behaviors, telling on peers, and following the rules causing her peer interaction issues; Crystal’s maturity level leads to issues as well. Crystal has been described by various individuals mature. Her entire family agrees that she is mature for her age. Her respite provider from the county agrees that Crystal is the “most mature.” In addition, her doctors have noted that “she speaks with good vocabulary for her age.” Crystal’s teacher, Mrs. Groniki, also stated that “having to go through more than any of us have had to go through has made her that much more mature...the other kids and Crystal don’t relate. They can’t.” She
  • 16. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 16 points out that not being able to relate to her peers is a great struggle for Crystal at school, especially in the area of peer interaction and bullying. Mrs. GronikI explains that Crystal’s maturity level makes it hard for her to relate to her peers causing her to become upset or feel victimized. Mrs. GronikI goes on to say that “she wanted everyone to be friends and everyone to be included and I don’t know if everyone was always real receptive to that.” She explains that kids are “pretty immature at this age and she was more mature.” Mrs. GronikI sites this as a reason that the kids were not always nice to Crystal or would leave her out. She also stated that the kids were not “receptive to what she wanted to do or her ideas.” In all, Crystal’s advanced maturity and life experiences made it hard for her to relate to her peers. The ideas for fun and playing were not at the level of her peers or were not things her peers wanted to do so they would choose something else; leaving her out or ignoring her. Although she has trouble relating to her peers, Mrs. GronikI points out that Crystal “related more to the older kids and adults.” This is in congruence with current research. Researchers, McLoone, Wakefield, and Cohn, found that parents in their study stated that their children with cancer had difficulties forming friendships with children their own age (2013). In addition, the researchers found that children with cancer, as reported by their parents, “formed close bonds with their teachers or older school children, in preference to children their own age” (McLoone et al., 2013). She continues to recount that this “became a challenge for her because some days she would say nobody wanted to play with me or I tried playing with so and so and they walked away.” On the Sunny Side: Despite Crystal’s rare and uncertain condition, traumatic and constant hospital visits, and unrelenting teasing and bullying, she is still a positive and energetic 8 year old girl. Crystal
  • 17. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 17 experiences situations and behaviors common of a child cancer patient but also brings to light new theories of the child cancer experience. Crystal, despite her bad condition and constant teasing, is overly caring, kind hearted, funny, loving, and extremely self-confident, with an amazingly positive outlook on her life. Positivity: Despite her condition, constant bullying and hardships, Crystal is a very positive and happy young kid. She doesn’t just experiences bouts of happiness; she truly is a happy child. Teri, in journals she kept throughout Crystal’s cancer journey, explains that “Crystal is Crystal. No matter what is going on she is happy...she keeps going and having fun, and loves life!” Crystal’s doctors agree that she is “a happy, lively girl…” Mrs. GronikI states that Crystal has such a “positive outlook” and that she is “such a fun spirited kid...she makes the most of what ever were doing.” I’m Cute: In addition to being a genuinely positive person, Crystal is extremely self-confident. Crystal is often bullied for her size and is aware that she cannot physically do some activities because of her size. For example, when Crystal was at the park she stated that “I have a big waist and this is almost too small for me” when she was deciding whether or not to go down the slide. Despite teasing, Crystal displays a great deal of self-confidence and high self-esteem. During school, Crystal was assigned a Creative Writing Journal and wrote about herself. She stated, “I like the swimming pool...I am very good at it. I am very cool,” and “One thing I do really well is sing and dance.” In addition, in response to the question, What is one thing you like about yourself, Crystal answered “I’m cute.” Crystal also enjoys taking pictures and videos of herself on her iPhone. She also has a picture of herself as her screensaver and lock screen. When asked
  • 18. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 18 what made her choose those photos she replied, “because I look good.” It can be seen that despite the negativity surrounding her health and her size she is still very confident with a high self-esteem. How to Make a Change: Although Crystal experiences turmoil with her health and teasing and bulling she is still a very positive and self-confident girl. Although she is genuinely happy she still experiences times were she sad and “just wants to give up” or does not want to go to school. Crystal has not been offered school reentry services from her hospital or any type of social service for that matter. TerI explains that they have not met with a social worker and have requested one three times from the hospital. When I met with the social worker of the hospital it can be seen that she sees a great deal of patients, inpatient and outpatient, in two different clinics. She cannot possibly see every patient and some patients must take more of a priority. Since Crystal has a good support system and has a positive attitude it can be assumed that she would not be in crisis to be seen by the social worker. So, how do we help children like Crystal experience school in a positive and rewarding manner? Possible Solutions: The case study brings up excellent points and even better possible solutions. One social worker assigned to so many patients at a hospital will never be able to accurately assist every patient. As with any agency, a social worker must prioritize crisis clients. The social worker at the hospital where Crystal is treated is very passionate and hardworking, but simply cannot assist every patient as much as she wishes. Since the population of children with cancer at school is significantly less than a hospital, a school social worker or school staff would be better able to assist children with cancer experience school positivity.
  • 19. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 19 When a child is diagnosed with cancer, the family should alert the school staff who will then put plans in motion to assist the child at school. Availability of these assistances should be described in student handouts at the beginning of each year, in the main office, and on the school website. In addition, hospital staff could ask the family if they would like a note sent or call made to their school regarding the cancer diagnosis and the school would take the process from there. This option would be brought to the attention of families by the doctor or the health unit coordinator that is scheduling the appointments, as part of routine visits for the cancer diagnosis. In this way, it is more contingent on the doctor or HUC, who sees the family every visit, and not the social worker who may have too many patients to see. Also, most of the process is carried out by the school staff, the area in which programs need to be implemented instead of the hospital staff coming into the school. Illness Explained: In Crystal’s experience, she was teased because of her size which is due to her cancer. For most reentry programs, initiated by the hospital, the child’s class is told of the illness and its effects to foster understanding of differences. Since children with cancer can experience the effects of cancer for years after diagnosis, continual explanation is needed to effect change in teasing. A solution would be to start with an initial physical presentation or talk about the child’s illness. Every year after, send a note home regarding the child’s condition. Of course, these solutions will only be initiated if the child’s parents or guardians consent. Utilize Strengths In Classroom: In this case study, many solutions to common behaviors of children with cancer that may cause teasing, emerged. Crystal, as explained by her family and teacher, is sometimes bossy and controlling but, as Mrs. GronikI points out, she is a great leader. Mrs. GronikI actually utilized
  • 20. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 20 Crystal’s leadership ability by having the older children mentor the younger ones. In this way, Crystal was able to use her “controlling and bossy” behaviors for something constructive. It is in this way that children with cancer should be treated or handled in the classroom. Instead of scolding a child with cancer for behaviors, find strengths and constructively use the behaviors. Though, Mrs. GronikI was not aware that bossy, controlling behavior was common amongst children with cancer she unknowingly illuminated how to help children with cancer excel in the classroom and enjoy school. Mrs. GronikI paired 1st and 2nd graders together and allowed the 2nd graders to help or mentor the 1st graders in various subjects. This allowed Crystal to utilize her learned behaviors in a structured and healthy way. To expand on this solution, teachers should be given a packet of information about children with cancer. It would include common behaviors, attitudes, feelings, and school tendencies of children with cancer. The teacher can be aware of these issues in her classroom and employ the following tactics. Just as mentoring can be a constructive outlet for children displaying bossy behaviors, a big buddy program can be helpful for children with cancer that relate better to older peers. This program will give the children with cancer a person to confide in if they feel left out by children their age. In addition, this big buddy can teach the child play and peer interaction skills. Learning How to Communicate: In addition to the suggestions provided above, programs or activities that teach students how to nicely communicate to other children, especially children who are “different” is necessary. These programs may include role playing bullying situations or learning how to spot a bully. In any form, an activity or program teaching young children how to communicate to each other without being mean will help the school experience of not only children with cancer but others as well.
  • 21. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 21 All of the suggested tactics can be beneficial to not only children with cancer but all students. This makes these programs more attractive to school officials. What’s Next: Most reentry programs focus on the inpatient child. These programs do not fully help outpatient children with cancer that have never had to leave school but still face obstacles. In addition, reentry programs do not aid or have research in effectiveness for the longevity of success of the programs. It begs the question, are these programs helping the children intended in the long run? In Crystal’s story, these measures were not helping. Crystal’s mother talked to the school when she was diagnosed, at 18 months. Now that she is eight, she is still bullied and teased for reasons relating to her illness. This shows that measures need to be taken to aid children with lasting effects of cancer throughout their school career. Future research in this area should focus on the school experience of cancer patients years after initial diagnosis and children with cancer that continually battle their diagnosis for many years. Research should also focus on the outpatient experience as the current literature is slim. Do outpatient and inpatient cancer patients experience the same situations in school? Crystal has experienced some of the same behaviors but has not been offered services by school or hospital personnel that would usually be afforded to inpatient cancer patients. Would outpatient children with cancer also benefit from reentry programs or the suggestions provided? Children with cancer face a battle that some may never understand. They struggle with their health as well as at school. These children, like Crystal, should be afforded the same quality of life as their peers.
  • 22. SCHOOL EXPERIENCES OF CRYSTAL: AN OUTPATIENT CHILD WITH CANCER 22 References: Bauman, L., Dortar, D., Leventhal, J., Perrin, E., & Pless, I. (1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics, 100(2), 244-244. Brown, M., Bolen, L., Brinkman, T., Carreira, K., & Cole, S. (2011). A Collaborative Strategy With Medical Providers to Improve Training for Teachers of Children With Cancer. Journal of Educational and Psychological Consultation, 21, 149-165. Cabat, T., & Shafer, K. (2002). Resources for Facilitating Back to School Programs. Cancer Practice, 10(2), 105-108. Retrieved February 1, 2015. Lahteenmaki, P., Huostim, T. (2002). Childhood cancer patients at school. European Journal of Cancer, 38, 1227-1240. McLoone, J., Wakefield, C., & Cohn, R. (2013). Childhood cancer survivors' school (re)entry: Australian parents' perceptions. European Journal of Cancer Care, 22, 484-492. Prevatt, F., Heffer, R., & Lowe, P. (2000). A Review of School Reintegration Programs for Children with Cancer. Journal of School Psychology, 38(5), 447-467. Ross, J., & Scarvalone, S. (1982). Facilitating the pediatric cancer patient's return to school. Social Work, 256-261.