Children with Special Health Care Needs, Cancer

Childhood Cancer

Unless otherwise cited, the following information

has been gathered from a booklet called:

Helping Schools Cope With Childhood Cancer,

Current Facts and Creative Solutions (2011),

provided by the Children’s Hospital, London 

Health Sciences Centre. It is an excellent resource

for families, health care providers and teaching staff

to help children diagnosed with cancer to continue

their education to the best of their ability.

This section will contain many medical terms but this will be the language

that families living with cancer probably will use much during the child’s 
            illness. School staff, who are involved in the education of a child with cancer,
            will need to know these terms in order to better understand and communicate
            with the child and his or her family.

Definition

                   Cancer is a group of diseases characterized by abnormal, rapid and         
                         uncontrolled cell growth. Although childhood cancers tend to develop
                         more suddenly and often grow faster than adult cancers, they also
                         tend to respond better to treatment.

 40% of all pediatric cancers are leukemias, cancers of the  blood cells, originating
      from the bone marrow. 

Tumours of the brain and spinal cord are the most common form of solid tumours in kids.

Lymphomas (Hodgkin's Lymphoma and Non-Hodgkin's Lymphoma) are tumours in the lymph nodes, spleen or tonsils, made up from the uncontrolled growth of white blood cells called lymphocytes (Crosta, 2012).

 Osteosarcoma is a bone tumour that often affects the bones of the arms and legs

Some types of cancers may be more likely diagnosed among very young children, for example, kidney tumours and neuroblastomas, which are tumours formed from a certain

kind of nerve cells called neuroblasts (KidsHealth, 2011). Other cancers may form in connective tissue, reproductive cells or the liver.

  

Prevalence

About 1 in 400 children (o.25%) will be diagnosed with cancer before their 18th birthday. Fortunately, cancer therapies have improved so much that 80% of all children with cancer will have a survival rate of five years since diagnosis and most of these children will be considered cured.

Even so, cancer remains the leading     

disease-related cause of death

for children in the developed world.

                                                                  Etiology

Exposure to radiation and some genetic defects may 
           increase a child’s risk of developing cancer, but most
           of the time there just is no reason or known cause for

the abnormal cell growth, causing the cancer.

                                                          Assessment

Children may have many different symptoms depending on the type of cancer and the location of the tumour. Solid tumours may cause pain, swelling or a loss of function in the area of the tumour. A child with leukemia may look pale, have a fever and excessive bruising. Lymphomas may cause swelling of the lymph nodes while a brain tumour may cause headaches, vomiting, weakness, vision problems or even seizures. 

                 A child will require many tests, some

                of them quite painful, to determine if

                his or her symptoms are caused by

                cancer, and if so, what type of cancer

                and to what extend the disease has

                already progressed. Tests may

                include blood work, x-rays, CT scans,

                MRI scans, ultrasound, PET scans, 

                lumbar puncture (also called Spinal Tap),

                Bone Marrow Aspiration or biopsy.

                                                      Medical Intervention

Most cancer treatments take place in large hospitals. This means that most families will have
to travel away from home for certain lengths of time. In most cases, the goal of treatment will be to cure the child from the disease by destroying the fast-growing cancer cells. How this goal is to be achieved will depend on the type of cancer, the location and extend of the disease and how well the child is responding to treatment. The length of time that a child requires treatment will also vary from several months to several years.

  

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          Chemotherapy: administering drugs
          to destroy cancer cells by mouth, 
          injection or intravenously (IV) or via lumbar
          puncture into the spinal fluid. 
          Chemotherapy may be given during a
          hospital stay, at a day clinic or at home.

          Radiation therapy: using high-powered

          radioactive particles to destroy cancer

          cells, administered during brief daily

          treatments over a number of weeks.

          Surgery: sometimes planned in combination with chemotherapy

                or radiation, to remove the tumour or as much of the tumour as is

                possible. Sometimes, surgery may involve the amputation of a body

                part to remove the entire tumour. 

stem cell or Bone Marrow Transplant: replacing the cancerous blood cells with healthy
 donor stem cells (new immature blood cells), collected from the child him or herself or
 donated by a family member or unrelated donor. A bone marrow transplant requires
 intensive chemotherapy or radiation to destroy any cancer cells circulating in the child's
 body followed by the infusion of the healthy stem cells. Because this level of
 chemotherapy or radiation will also destroy the child's immune system, the child is at extremely high risk of infections. He or she will have to stay in isolation in the hospital
 for four to six weeks followed by months of recovery in isolation at home.

               

         

                                                            Central Lines: Because children’s

               veins are so small, it is more difficult

               and more painful to access a child’s

               vein for the administration of drugs,

               fluids, blood products or nutrients. To

               make this easier, most children will

               have a central line inserted, consisting

               of a small tube tunneled under the skin 

               towards the neck and into one of the

               large veins. Treatment can be injected

               into the access point of the catheter.

                Supportive care: treatment that prevents, controls or relieves side

                effects or complications of the cancer treatment such as antibiotics

                to prevent or treat infections, special mouth rinses to prevent mouth 

                sores, anti-nausea medications for nausea and vomiting or even

                blood transfusions. Psychosocial support provides counseling to the

                family to help them cope and psychological assessment and treatment

                for the child as needed. A dietitian helps by addressing special

                nutritional needs.  

          Therapy: Physiotherapy, occupational therapy and speech and

          language therapy may be required as a result of the consequences

          of cancer. For example, when the child has a brain tumour, needs 

          an amputation or has complications from drug therapy.

                                           Developmental Consequences

                    “Perhaps most importantly, childhood cancer occurs

                 in a developing human being. Children continue to grow

                        physically, emotionally, socially  and cognitively

                              during the challenges of treatment” (p. 3).

Physically: Mobility challenges may result from brain tumours, amputations and other surgeries or as a side effect from treatment while some children experience sensory loss, including hearing or vision loss. Some treatments may also cause damage to the nerves affecting fine motor skills.  Some physical effects may not show up until later, for example infertility, decreased heart and lung functioning, changes in growth, decreased bone density, or a higher risk of developing cancer later in life.

Emotionally: Cancer is like a rollercoaster

ride with many ups and downs and

unexpected turns and twists. One strong

emotion is fear; fear of death, fear of the

unknown, fear of pain and fear of social

rejection. Another strong emotion may be

guilt for causing the family all this trouble 

or even guilt that he/she brought this 

disease upon him/her self. Another 

one is stress due to the necessary
changes in family routines, finances, and
the need for alternative care for siblings.

                Socially:  Spending time away at a treatment centre means time

                away from friends and family and missing out on activities, for

                example, school trips. Side effects such as hair loss, fatigue, 

                unexpected bleeding, nausea and vomiting, weight changes and

                mood changes all can be very distressing to the child and his or

                her family. They also impact the social activities of the child as

                well as his or her acceptance at school.

                Cognitively: Absenteeism may make it difficult for a child to keep

                up with school work or to catch up when returning to school. 

                Learning ability itself may sometimes be affected due to a brain

                tumour, brain surgery or as a side effect of treatment.

                                        Educational Implications

Even with all the challenges a cancer diagnosis entails, school attendance provides a sense of normalcy for the child and his or her family as well as a sense of hope for a future life. It
will be important for school staff to prepare an educational plan for the student that takes into consideration all the physical, emotional, social and academic needs even during those times when it is not possible for the child to be in school. Communication with the parents will be very important, both to exchange important information as well as to provide emotional support to each other.

                                                    Physical needs:

      Observation: All children, including those with cancer, need to be observed
for unusual physical symptoms such as pain, excessive bruising or fatigue,
‘clumsiness’ or sensory problems. These should be reported to the family. 
Of particular concern for children with cancer are signs of fever which may 
signal an infection. A fever needs to be reported to the family right away, 
not just at the end of the school day.

               Handwashing:  Excellent hand hygiene may

            prevent infections, not only for a child with

            cancer, but for everyone. Talk to parents

            when there is an increased level of contagious

            illnesses circulating at the school. The parents 

            may wish to ask their child’s doctor if their child 

            can continue to attend school. Chickenpox is

            of particular concern to a child with cancer.

            Central lines: These do not need to be a major concern at school.

            Care should be taken not to bump the catheter and external parts

            should be kept clean, dry and covered with a dressing.

            Modifications to physical education activities may be necessary

            to prevent bumps to the line.

      Exercises: It may be possible to incorporate physiotherapy exercises
      into gym class for all the children.

Rest: Provide an area where the child can rest when needed. 

            Nutrition: The school’s snack and/or lunch breaks may not

            accommodate the changing nutritional needs of a child with

            cancer. Appetite may be increased or decreased. The child

            may need to be allowed to eat more frequent, smaller meals

            during the day.

            Sun Sensitivity: Staying in the shade and using sunscreen and

            hats in the sun is common sense for anyone, but especially for 

            some children with cancer whose medications increase their

            sensitivity to the sun.

            Classroom environments: may need to be adjusted to

            accommodate changes in a child’s mobility.

            Resources: Physicians, nurses, physiotherapists, occupational

            therapists, speech and language therapists and dietitians all can

            help determine the specific physical needs of the child and how

            to best meet these needs.

                                                                Emotional needs:

Reassure the child that getting sick is not his/her fault and is not a punishment.

Inappropriate behaviour from a child with cancer should be understood but not accepted.

Make sure the child has a trusted ‘go to’ person at school to talk to if needed.

Social workers, psychologists, child life workers in the hospital, pastors, support

groups and child and youth workers can all help to meet the emotional needs of 

children with cancer.

                                                               Social needs:

Encourage the student’s peers to keep in touch when the child

is not in school. This can be done through sending letters or

cards, keeping a class journal and of course using the internet.

It can even be possible for students in the hospital to be present

in the classroom using a computer with webcam. If allowed, 

classmates can also be encouraged to visit their friend in person.

                                Educate the school children about cancer, 

                hair loss and other possible side effects in

                children with cancer. Discuss ways that

                they can help a child with cancer.

                Remember to ask permission from

                the child and/or his or her family

                when talking about a specific child.

                                                   Rules about wearing hats may need to

                          be changed, not only for the child with

                          cancer, but for all children. In this way,

                          one child wearing a hat will not stand out.

                                Encourage classmates to spend time with

                the child doing quiet activities when needed.  

                                                        Academic needs:

A communication book that travels with the child will be helpful to keep teachers,

parents and hospital staff up to date on what the class is working on at school

and what the child is accomplishing at the hospital or at home.

Using a computer with webcam, the student may be able to

follow lessons in the classroom from the hospital or from home.

 Some hospitals have on-site teachers to teach the children in the hospital.

 Home-based instruction must be arranged by the school as needed.

The child may need to be formally identified as a special needs student,

particularly if there is a risk of neurological complications from the cancer  

or the treatment. These complications may not become evident right away,

but may present as a gradual slowing in development over time compared

to classmates. Psychometric assessments may be available to the student

as part of his or her follow-up care. The child may need accommodations 

for fine motor skills, for example printing, as a result of some medications.

Some students may be able to successfully take on-line or correspondence

courses, particularly with additional teacher support.

 Accommodation of Assessment of learning may be required.

Additional Concerns

          Some children at school may be dealing with cancer, even though
                they do not have cancer themselves. Having a family member with
                cancer can be very stressful for a child. Planning for a child with 
                cancer at school should also address the needs
                of his or her brothers and sisters. 
                They worry, feel sad, or miss their
                family members. They may feel
                jealous or angry of all the attention
                their sick sibling is getting or even
                guilty that somehow they have
                wished this disease upon him
                or her. Sometimes siblings
                may hide their feelings to
                ‘protect’ their already
                stressed parents or they
                may start to act out to get 
                attention. It may also be difficult
                for siblings to have other students
                at school ask them about their ‘dying’
                brother or sister.

          Although most children with cancer do get better in time, some
                children do not respond to treatment and will receive palliative care.
                The purpose of palliative care is to keep the child as comfortable
                as possible and maintain the best possible quality of life until death.
                The child may choose to continue attending school as a way to do 
                something normal and to be with friends. It will be important to know 
                what the student’s wishes as well as the parents’ wishes are regarding
                information shared with the student and his or her peers. Grief counselors
                and consultants from different organizations can help provide support
                to school staff and students during this difficult and emotional time.

                                                              References

Crosta, P. (2012) What is Lymphoma? 

Lymphoma Symptoms, Causes and Treatments

http://www.medicalnewstoday.com/articles/146136.php

KidsHealth

http://kidshealth.org/parent/medical/cancer/neuroblastoma.html