At The Hospital

Child Life

While doctors and nurses provide the medical care for children, Child Life Specialists help the child cope with his/her hospital stay. Because they recognize the stress and anxiety that hospitalization creates for children and adolescents, Child Life Specialists provide programs and activities which are specially designed to meet the physical, social and emotional needs of patients. These specialists strive to normalize your child's hospital stay.

Child Life provides:

Regularly scheduled activity programs and individual play opportunities to promote normal growth and development.
Preparation and teaching prior to medical procedures to increase the child's understanding and decrease his/her stress.
Encouragement of supportive relationships between patients and their families.

As professional members of the health care team, Child Life Specialists strive to help patients and families cope positively with the hospital experience and to "normalize" the child's hospital environment.

Most hospitals have a Child Life Department. If this is not available, be sure to inquire as to who is responsible for this essential component of your child's care.

Parking

It is advisable to check into the parking facilities available at your hospital. Policies vary from hospital to hospital. Some have daily, weekly or monthly rates.

Accommodation

Some hospitals have made some arrangements for accommodating families that wish to stay near their child during hospitalization. Since each hospital has different costs and plans, it is advisable to check into the details prior to admission. Your nurse or Department of Social Work will have this information. Some medical plans may cover this accommodation.

The Ronald McDonald House

Ronald McDonald Houses are located in major medical centres across Canada. Each House is owned and operated by a private organization. The McDonald Corporation does not sponsor these houses. Most of these houses have been established by a group of concerned parents who have seen the need for such a facility in their area. These organizations rely on private donations and fund- raising efforts. Most of the staff of a Ronald McDonald House are volunteers and they work very hard to assist families with staying close to their child.

Parents and family members of patients 18 years of age or younger are eligible to use the Ronald McDonald House facilities. Families must be referred to the House by their doctor, social worker or nursing staff. Families can stay at the House for as long as three months while their child is hospitalized or undergoing treatment.

These houses can accommodate, on average, 19 families at one time. Each bedroom in the house accommodates two adults and two children. There is an attached bathroom to each bedroom. There is a large central kitchen and dining room. Guests must supply their own food and are responsible for cleaning of their bedroom, bathroom and kitchen areas after use. Other features of the House include a library, games room, toy room, laundry facilities and quiet places to relax.

A small fee is requested per night if the family can afford it.

Organizations such as the Canadian Cancer Society and the Easter Seal Society may help assume some or all of these fees.

If you have to travel a distance to your medical facility, you may wish to consider staying at a Ronald McDonald House. Staying close to your child is important and can make coping with your situation easier. For further information, please contact your doctor, nurse or social worker.

Hospital Admission

For children with brain tumors, admission to hospital can be a time of anxiety and uncertainty. It can mean further diagnostic testing, possible surgery, extended treatments and/or a rehabilitative period. The hospital stay can last from several days to weeks or even months. It can affect the child's life-style as well as the life-style of the family. Following is some general information which may help you.

At times the child and the parent(s) will be more comfortable with the hospital stay if the parent is able to stay in the room with his/her child overnight. Most children's hospitals will make arrangements for a parent to sleep on a cot in his/her child's room. This can have very positive effects and build trust between the parent and child.If you feel this would be beneficial to you and your child, feel free to discuss it with the nursing staff.

The first stop on your admission to hospital is usually the Admitting Department. Here a clerk will request information about your health insurance and room preference. The hospital room, depending on your insurance coverage, is then assigned based on availability. From the Admitting Department, you will be escorted to your room. The room will become more comfortable by adding a few personal touches from home. A favorite pillow, blanket or stuffed animal all help to create a warmer environment. Most hospitals have televisions which can be rented or they may be provided free of charge. Some hospitals may allow you to bring a portable, battery operated radio. Telephones are usually available.

Please pack comfortable, easy to wear clothing for your child (such as "sweats"). This may be preferable to hospital attire.

Once settled in the hospital, a nurse usually greets you and will ask some questions about your child's medical history and general understanding of what you expect from the hospital stay.

For this admission, you may find it very useful to keep a written record of your child's medical history including:

allergies
operations and past illnesses
current medications
any recent antibiotics
dietary restrictions
special physical needs
any information pertaining to your child's condition

You will also be asked to complete a nursing history on your child. This will enable the care-givers to know your child's likes, dislikes and normal routines such as bedtime, food preferences and how your child may react to stressful situations.

The nurse may also request phone numbers for next of kin/significant others. The information obtained by the nurse is used to communicate your condition and to plan specialized nursing care for the rest of the staff.

Your doctor or delegate will visit to take a further, more detailed medical history and will do a physical examination. Again, your written medical history will aid you in giving an accurate account.

Do not be afraid to ask questions of either the doctor or the nurse. Write them down as soon as you think of them. It will be much easier to remember them when you see the doctor.

The nurses caring for your child want to make your child's stay as comfortable as possible. They are specially trained in oncology and play a key role in coordinating your child's care and to act as a liaison to communicate concerns and information to the physician. The nurses will be important allies for you and your child.

Preparation for Surgery

Prior to surgery, your doctor or his/her delegate will explain the surgical procedure. Ask any questions you may have so that you understand everything about your child's surgery. After an explanation from the doctor, and after all of your questions have been answered, you will be asked to sign a consent form. There may also be questions related to your child's past surgery and anaesthetic history. Preoperative blood work and urinalysis is usually required.

Your child's nurse or physiotherapist may also explain to you about special deep breathing exercises which will be necessary after surgery. The nurse may show you where you may first visit your child when the surgery is finished.

The anesthesiologist may visit prior to surgery. He/she may ask questions concerning your child's general health and any specific problems. He/she will answer any concerns or help you deal with anxieties you may have with regards to the anaesthetic.

Your child will have some hair removed at the operative site at the time of surgery. Care will be taken to remove only what is necessary.

The night before the operation your child will not be allowed to eat or drink after midnight ("NPO") as this would interfere with safe anaesthetic care. If your child eats or drinks during this time, the operation will be postponed to another day.

Preparing Your Child for Surgery

You will be prepared for your child's surgery by the health care team. This team (especially Child Life) will also do its best to prepare your child at his/her level. Your child may look to you for reinforcement of what has been told to him/her as well as for constant support. Describe to your child everything you think he/she will experience when at the hospital. This is not a time for secrets. Try to think of things the child might hear, feel and smell as well as see. Remember that a description of what will happen when the child wakes up from surgery is also important. The Child Life department will help you and your child with resources such as books, dolls, puppets or hospital tours.

Be careful of using terminology that could have more than one meaning such as saying "put you to sleep" instead of the preferred "a special kind of sleep". Be honest in your explanations but do not give preconceived notions about what the child will feel. Words such as "pain", "hurt" and "scary" need not be used unless the child vocalizes them.

Fear of the unknown is usually much worse than the actual truth. By preparing your child for surgery, in partnership with your hospital Child Life program, you will help make the experience less stressful for you and your child.

Surgery Day

The intravenous is started in the operating room. It may be started in one of many places, such as ... hands, arms or feet. Medication to minimize swelling surrounding the tumor may be given.

Operating Room (O.R.)

You and your child will know at what time the operation will begin. Usually the child is taken to the operating room 15 - 30 minutes before the operation to allow for transport and preoperative assessment. Since it is impossible for a surgeon to know exactly how long any operation will take, it is possible that an operation may be delayed, or your child may be called for ahead of schedule. You will be allowed to accompany your child to an area near the Operating Room (O.R.) Some centres have facilities which allow you to accompany your child directly into the O.R. You may wish to inquire about this. You will be met by an O.R. attendant. At no time will your child be left alone.

You will be encouraged to wait in a designated area where the surgeon or nurse can reach you.

If an operation has gone over the time scheduled, the surgeon may ask a nurse to call the area where you are waiting to relay a message that the surgery is going well, but just taking longer than expected. Generally, the surgeon will come and speak with you when the operation is over.

After surgery, your child will be transferred to the recovery room where he/she will awaken.

Recovery Room

Your child will be brought to the Recovery Room for close observation following the operation. In some hospitals, the child will stay overnight in the recovery room, and in others, he/she will remain until he/she has recovered from the anaesthetic (Generally, the length of time is decided by the anaesthesiologist and the surgeon).

Vital signs and neurological signs will be monitored frequently while your child remains in the recovery room.There will be an intravenous running to help keep your child hydrated and allow the staff to administer certain drugs such as antibiotics to prevent infection and medications such as corticosteroids to decrease cerebral edema (swelling). Your child will likely have a urinary catheter to drain the urine from his/her bladder. It is normal to feel like urinating.There may also be an arterial line (which may look like an intravenous) used to monitor blood pressure and to take blood samples.

Your child will be positioned with the head of the bed elevated (up) to allow gravity to help reduce the swelling.

Because the surgery is lengthy and the child may be in the same position for many hours, you may notice surface red marks on your child's skin. These marks will fade in a few hours and do not hurt.

If your child has postoperative pain, medication will be given promptly to help relieve this. Medications may also be given to help ease nausea and vomiting.

Visiting hours and restrictions for Recovery Room patients will vary from hospital to hospital. Check with your nurse on your floor prior to your child going to surgery. Also ask about the policy regarding receiving information concerning your child's condition while in recovery or making telephone calls to the recovery room.

Once your child's condition is stable, he/she will be transferred back to his/her room or a special post operative unit.

Immediate Post-Operative Period

This is primarily a continuation of the care started in the Recovery Room.

Your child will be transferred back to his/her room. The head of the bed will remain elevated.

The intravenous started preoperatively will remain in place to provide continuous adequate hydration (enough fluid) until a normal diet can be started, and to give medications that reduce cerebral edema (brain swelling) and antibiotics that may be given to prevent infection. A catheter may remain in place to monitor urine output.

For a brief period after surgery, the following will be checked and recorded hourly or more frequently:

Blood pressure
Temperature
Pulse
Respiratory rate
Changes in pupil size and reaction
Change in motor function (arm and leg movement)
Orientation to person, time and place (E.g. name, age, pets)
Observation of head dressing
The above are known as Neurological Signs Record, or NSR. The interval for checking increases as your child's recovery progresses.

Oxygen therapy by a face mask or nasal prongs may continue to maintain proper oxygenation for a short time after surgery. Blood gases (oxygen level) are generally checked by obtaining a blood sample from a finger, toe or ear lobe. Oxygen therapy will be ordered or discontinued as directed by the physician.

Your child will be encouraged to do deep breathing, coughing and relaxation exercises. Efforts will be made to minimize your child's crying or agitation. You will play an important role in this, with the help of the child's nurse.

Pain medication and anti-nauseants (to control vomiting) will be given as needed.

If your child has any speech difficulties after surgery, a communication board, gestures, blinking or nodding may be used by skilled staff. These difficulties may be temporary because of edema (swelling) and may improve with time.

Common in the immediate post operative period is puffy, swollen eyes. Keeping the head of the bed elevated, saline (salt water) compresses, petroleum jelly applied around the eye lid will prove soothing and help reduce the swelling. Eye drops may be ordered by the physician and may give a great deal of comfort.

Typically in the post operative period, a follow-up CT scan will be ordered by the physician to detect any evidence of residual (remaining) tumor or abnormal collection of fluids.

Usually, your child's sutures will be removed in 7-10 days.

Getting Through the Post Operative Period Free of Complication

It is important that family members be aware of the importance of the postoperative period. They should develop an understanding of why certain things are done. Being involved in the patient's care can be both satisfying and helpful.

Initially a quiet environment helps to prevent unnecessary stimulation for the child who may experience headaches, photophobia (sensitivity to light) and agitation.

It may be necessary to limit visitors and keep the room quiet and dark. The family may help the child by staying with him/her and assisting as much as possible with his/her care. Sometimes gentle soft music may help to settle the agitated child. Setting up a visiting schedule among the family members will keep the child from being overwhelmed by great numbers of people visiting all at once, at a time when the child doesn't feel well. The nursing care will be organized to allow for maximum rest. In Special Care Units, there may be visiting restrictions. Be aware of them and understand they are meant to allow the child as much chance as possible to rest. If the child has siblings, it is important both for the patient and the siblings to visit and be involved in the process of recovery.

To aid in reorienting a confused child, the family can assist in providing familiar objects such as family pictures, a favorite toy or music.

Your child's head bandage will be removed in two to four (2 - 4) days. Remember that a certain amount of swelling is normal and that there will be an incision closed with sutures or staples. The absence of hair, swelling and the presence of sutures may be somewhat frightening for both you and your child. Keep in mind that this is normal and a touch of humor about the "modern haircut" can help make the situation more comfortable.

Self image can be important to children, depending on their age. As surgery may necessitate the removal of hair, the family can provide scarves and hair pieces such as wigs. In some areas the Regional Cancer Society may provide wigs for a nominal fee. These should only be worn once the child's incision has healed. The hospital may provide light operating room hats to cover the operative area once the initial head dressing has been removed.

Complications

Problems after surgery are rare. Some possible complications are listed here as an easy reference should you require this information. You may not need to refer to the following pages.

General Complications

Pneumonia: During surgery, secretions can accumulate in the lungs and pneumonia and other respiratory difficulties can follow if the lungs are not kept clear. Deep breathing and coughing exercises will be taught by the nurses and physiotherapists. An Incentive spirometer is an apparatus, used as ordered by the physician, to encourage the child to take a good deep breath, at a prescribed volume and to promote good lung expansion. The use of this apparatus may be recommended initially after surgery.
Urinary Tract Infections (U.T.I.): These are usually related to the presence of the catheter in the bladder and are treated with antibiotics and, if there are no contraindications, fluid intake is increased.
Constipation: This can be caused by the use of some pain relieving medications that contain codeine.

Specific Complications - Problems with the Incision

Stitch abscess: The skin is closed with both dissolving and non-dissolving sutures. Occasionally, a dissolving suture under the skin can cause the development of an area that is red and irritated. This is usually of no consequence and will settle with antibiotic therapy. The healing process may take several weeks.
Incisional swelling: Some swelling associated with a neurosurgical operation is normal. This swelling will sometimes be more prominent 4-7 days postoperatively after the bandages have come off. This swelling may be very minor, or the size of a fist. This is normal and often takes 2-3 weeks to subside.
CSF Accumulation: It is not uncommon for some CSF fluid to leak through the dura after an operation. This may be seen as "bogginess" over the area of the incision. At times, this accumulation of fluid may increase after the bandages have been removed. This CSF accumulation almost always absorbs on its own and needs no treatment. If the area becomes red, however, you should notify your neurosurgeon.
Persistent fever: Fever can sometimes occur after neurosurgical operations. This can be related to infection or the presence of blood around the brain. If fever persists, call your doctor.
Incision infections: These can be successfully treated with antibiotics and regular dressing changes. If you notice after discharge that the wound is red, hot and draining any material, this may be a sign of infection. Inform your neurosurgeon immediately.
Bone infection: The bone rarely may become involved in infection. If it does, it may be necessary to remove the bone to allow the infection to be cured with antibiotic drugs. At a later time (several months), a new piece of acrylic may be placed surgically (cranioplasty) to take the place of the removed bone and restore the integrity of the skull.
Cranioplasty: Occasionally during surgery, it may be found that bone is involved in the tumor. The surgeon may have to remove a portion of the bone. At times, this can be replaced during surgery with a plastic material (cranioplasty) or it may be left out. The bone can be repaired months or years later.
Cerebral Spinal Fluid Leaks: Fluid draining from the nose, incision or down the back of the throat may be CSF which is escaping from a hole left in the dura. Often these holes, and therefore the leak, heal on their own, but it may require surgical repair. A CSF leak can increase the risk of infection and the child will be watched carefully should this complication occur.

Specific Complications - Brain Tissue Complications

Increase in symptoms that existed before surgery. Some symptoms may temporarily be worse after surgery. Depending on the position of the tumor, the child can develop an increased deficit (e.g. difficulty walking, double or blurred vision) secondary to the operation. Most of these are temporary and will improve with time. These symptoms are usually due to swelling.
Seizures: Seizures are usually controlled with medications.
Hematoma (within the brain): These are blood clots which rarely accumulate within the brain after surgery. Depending on the size of the hematoma and the problems created by its presence, there may be no need for treatment, or surgery may be indicated to remove the clot.
Hydrocephalus: Following operative procedures, the CSF flow may be interrupted temporarily or permanently. If temporary, a drain may be placed in the ventricles to divert the fluid. If permanent, a shunt is surgically inserted. See the section on Cerebrospinal Fluid and Shunts.
Meningitis: At times, bacteria not only invade the wound itself but also the spaces around the brain. The treatment is antibiotic therapy. Symptoms include fever, irritability, stiff neck and a decreased level of consciousness.
Aseptic Meningitis: This is an inflammation of the surface coverings of the brain that is not caused by an infectious agent (i.e. bacteria, fungus, virus, etc.) The child may develop fever, irritability, stiff neck, decreased level of consciousness and many of the symptoms of bacterial meningitis but no bacteria are found in the fluid surrounding the brain. Two different types can be seen. In the first, in patients who have surgery for craniopharyngioma, epidermoid or dermoid tumors, some of the materials from these tumors can be released into the fluid cavities around the brain and can cause a chemical irritation of the membranes (i.e. meninges) surrounding the brain. In a second type, the child who develops a pseudomeningocele, CSF fluid flows between the scalp and the dura. Various substances can leak into the CSF in this pocket and may be transported back into the fluid around the brain. This may cause a chemical irritation of the brain, and thus aseptic meningitis. The treatment is to rule out the presence of bacteria. If there is any question about the presence of bacteria, the child is usually placed on antibiotics. Most patients with aseptic meningitis improve with steroids but they may need to be used for longer periods of time than initially planned. The majority of cases respond well to treatment.
Pseudomeningocele: This is a collection of CSF at the site of surgery between the scalp and bone, or if the bone has been removed, between the dura and the scalp. It results from a tiny leak in the dura and usually resolves over a few days to weeks. It rarely becomes infected although the area may become inflamed.
Subdural Hematoma: This is a collection of blood between the covering layer of the brain (dura) and the surface of the brain. This may sometimes occur because a vein is torn and leaks blood. This can occur after shunting for hydrocephalus or as a direct consequence of surgery. This situation is more common when the ventricles are quite large preoperatively and drainage at the time of surgery may result in the brain pulling away from the skull and surface coverings. Generally these accumulations of blood are small and will reabsorb over a number of months. Occasionally, the accumulation is large and a surgical procedure is required to remove the blood clot.
Subdural Hygroma: This occurs in the same space as a subdural hematoma but is made up of CSF rather than blood. It usually occurs when the ventricles are large preoperatively. Drainage of the ventricles in this situation allow the brain to pull away from the surface of the skull and some fluid has to occupy this space. This fluid is CSF. Usually, with the re-expansion of the brain tissue these collections decrease in size. Occasionally these collections have to be shunted if they cause pressure on the brain surface. A hygroma may occur in this way, or as a direct result of a resolving subdural hematoma. In the latter situation the fluid is a combination of blood and CSF. Patients with subdural hematomas and hygromas may be assessed more frequently in the postoperative period. CT scanning is a good method to follow size, reabsorbtion and progress of these fluid collections.
Blindness: Significant increased pressure inside of the head may damage the nerves of the eyes (optic nerves). This may result in temporary or long term changes in vision. Eyeglasses seldom help this condition. The child may adjust well to this and it does not affect his/her daily activities. In rare cases, for unclear reasons, even though the tumor has been removed (and thus the pressure decreased) the damage to the nerves progresses. Blindness may result.

Other Complications

Posterior Fossa Syndrome associated with Mutism: Occasionally, after surgery for posterior fossa tumors, patients may develop increases in the neurological deficits, at times associated with mutism (the inability to speak). At the present time, the reasons for this are unknown. Patients who would have been expected to do well may have unexplained deficits (cranial nerve or motor), and the child may not be able to speak. This is a very stressful situation for the child and the family. A great deal of patience and understanding is required to get through this time period. It may take months for the child to recover. Fortunately, recovery usually occurs but may be very slow. Parents are encouraged to work intensively with health care professionals to obtain the best possible outcome for the child.
Spinal Cord Tumor Complications: Children with spinal cord tumors may develop abnormalities in growth of the spinal column. Scoliosis, which is a curve in the spine, may occur because of the muscle imbalance secondary to the presence of the tumor, which may damage the spinal cord. It may also occur after an operation on a spinal cord tumor. During an operation, the lamina may be removed from a number of vertebral bodies to allow access to the spinal cord tumor. If the child is quite young, this may influence the future growth of the vertebral body and thus the spine. Although a number of problems can occur, the two most frequent are the development of scoliosis and kyphosis (a forward angling of the spine). In the majority of cases, the development of scoliosis and kyphosis does not necessitate any surgical correction. Occasionally, a problem may require bracing or surgical correction. Tumors in the cervical (upper) region of the spine may be more prone to this problem.

Summary

Family members can assist hospital staff by noting changes in the child's behavior and condition.

Any of the above can be stressful for the child. The family can continue to provide supportive encouragement and reassurance to their child during extended convalescence.

Recovery Period in Hospital

The hospital experience can be a stressful time for you and your child. To meet your family's needs, most hospitals have an integrated multi-disciplinary approach to patient care which, when instituted, can be a friend and ally in a time of need. As well as the doctors and nursing personnel, there are many other support services which include physiotherapy, occupational therapy, speech therapy, neuropsychology, social work, psychology, pharmacy and pastoral care. Many of these supportive services will follow you into the community when your child is discharged from hospital.

Support Services

Social Worker

A hospital social worker is specially trained to help individuals and families learn to deal with life-style changes, problems or crises (both while in the hospital and also after discharge).

In the hospital, the social worker might be consulted about:

Patient / family difficulties in adjusting to illness
The stress of an illness
Needs for assistance at home
Social issues related to school
Practical or financial needs
Future education and vocational planning
Other individual or family problems

Your entire family should consider counselling to prepare yourselves for living with a brain tumor, both in the short and long term. Please do not wait until symptoms of stress appear. Preventive therapy is important. When the crisis is over and life returns to normal, it may be difficult to remember what "normal" means.

A referral can be made by your physician, nurse or other health care professional, or you may wish to call or visit the department office in your hospital.

Psychologist

Having a child with a life threatening illness like a brain tumor may be a demanding and painful experience at times. Parents will find that they have to make many changes in their daily lives to cope with the time, effort and energy needed to care for their child. It can also put stress and strain on relationships that have been important to them.

All of these changes can cause parents to experience all sorts of feelings that they are not used to. Parents may feel guilty, worn out, sad, angry, excited, happy, etc. without being able to identify why. These are normal reactions to a stressful situation and a way of becoming able to cope with the demands placed on the family.

The psychologist acts as a consultant to the treatment team. Roles across treatment centres vary, but a psychologist may be available to help families with a number of areas, including the following:

age-appropriate counselling for children with brain tumors or their siblings to help them cope with the changes brought about by diagnosis and treatment.
training parents to manage changes in behavior sometimes brought about by treatment.
helping parents cope with the stress of the demands of caring for a chronically ill child, on top of juggling other home and work-related responsibilities.
Providing any family member or the whole family with counselling to help foster coping and adjustment through the course of the child's illness and treatment.
Arrange for neuropsychological testing.

Neuropsychologist

Neuropsychology is the study of the relationships between the brain and behavior. A clinical neuropsychologist observes and tests different areas of thinking and behavior as they relate to the workings of the brain. These areas include:

attention and concentration
learning and memory
problem solving and information processing
personality and emotional functioning

When the neuropsychologist tests these different functions, he or she attempts to determine how they relate to the presence and treatment of a brain tumor in a child. The first neuropsychological assessment can be conducted prior to treatment, and can serve as an indicator of whether there is change in a child's functioning over time.

Testing usually takes five to six hours, but may be shortened or lengthened depending on the purpose of the assessment.

A neuropsychological assessment has particular importance in children with brain tumors who receive radiation therapy. It is suspected that radiation can affect the brain, over time, with regard to these functions. Early detection may lead to early intervention. Appropriate resources in the school setting can be very important in helping your child learn and attain his/her maximum potential. Periodic re-assessment will be necessary to track the child's recovery and possible late effects of radiation.

Physiotherapy

The physiotherapist is consulted to assess and treat a variety of conditions and physical disabilities. When surgery is necessary, the physiotherapist will be involved in the prevention of lung and circulatory complications postoperatively.

In neurological disease, the main goals of treatment are to maximize independent function, ensure a smooth transition from hospital to home and address other needs as they may present themselves.

A physiotherapy program focuses on improvement of joint movement, strength, coordination, balance, transfers from bed to chair, etc. and walking. In some cases the physiotherapist will prescribe walking aids and braces. Patient and family education is another important part of physiotherapy. Family and friends are encouraged to participate.

After discharge, physiotherapy follow-up will be arranged through an outpatient clinic or home care services as necessary.

Occupational Therapy

The occupational therapist will assess performance in daily living activities to determine abilities and limitations. The occupational therapist will take into account your child's physical, cognitive and perceptual abilities as these influence his/her performance of daily activities. The occupational therapist will help you to make the most of your child's strengths and maximize his/her independence through different types of activities.

Often the speech pathologist, physiotherapist and occupational therapist work together as a team.

If your child develops difficulties swallowing food or liquids, the occupational therapist will assess the problem and advise the team which food textures would be safe to swallow. The "O.T." (occupational therapist) may design a feeding program to maximize independence during meals. As well, there may be daily occupational therapy to improve swallowing abilities. Some hospitals have "swallowing teams" or other health care workers responsible for this function. See the section on Swallowing Difficulties.

Limb splinting is also done by the occupational therapist, usually at the bedside. Many patients do not need to wear splints. However, sometimes when limbs are not moving actively, splints are beneficial to maintain joint positions and alignment and prevent limitation of range of motion.

During rehabilitation, the occupational therapist will continue to reevaluate what your child can and cannot do as independence increases. The occupational therapist will assist your child to resume daily activities through activity-based treatment.

Some areas of concern in rehabilitation include:

Self-care evaluation and training
Level of mobility (e.g. selection of and training in wheelchair)
Selection and training with assistive devices and other equipment
Home evaluation and adaptation
Returning to a life-style that approaches normal for your child
Energy conservation

Upon discharge from the hospital, the occupational therapist will organize follow-up outpatient therapy if necessary.

Speech Therapy

Your child may be referred to a speech therapist while in hospital or after discharge.

Speech and language are essential parts of everyday living - shaping thoughts and dreams and permitting interaction with those around us. When these functions are disrupted as a result of a brain tumor, the value and complexity of communication become apparent.

Communication involves the exchange of ideas using speech, language and nonverbal signs. To communicate effectively involves accurately receiving messages (hearing, understanding and interpreting) and sending them (sounds, words, thoughts). In addition, both the listener and the speaker understand the "rules" of conversation: turn-taking, shared background information and the use of nonverbal signals (facial expressions, body posture, tone of voice, gestures). Communication may occur in a spoken or written mode.

A brain tumor can disrupt communication at any level - the ability to understand, to speak, retrieve (find words), organize words into sentences, produce appropriate nonverbal signals, take into account the listener's perspective or to read or write. Breakdown may occur in only one or in many systems. Thus, a lack of speech does not always mean an inability to understand. The type and extent of the communication problem depends on the tumor location and size. (Not all tumors result in a communication problem.) Similarly, the type of tumor and medical/surgical intervention affect the outlook of the communication disorder in the same way as they affect the general prognosis.

A speech-language pathologist (speech therapist) may be asked to assess a patient with speech or language difficulties related to a brain tumor. The specialist will counsel both the child and family regarding the particular difficulties. Solutions may involve determining the easiest method of communication for the child (speaking, writing, message boards) and modifying the child's language to help the him/her understand the message heard.

In general, ways that health care professionals and family can enhance communication include the following:

Realize that ability to communicate is not the same as intelligence. Always treat the child according to his/her age. While you may be bewildered or frustrated by his or her inability to communicate, understand that he/she is trying and reassure him/her of your support. Provide a relaxed communication setting.
Communicate in a quiet environment - turn off the radio, close the door, limit the number of people the child must talk to at one time.
Make sure you have the child's attention before speaking.
Use gestures, familiar topics to aid understanding. While your child is in the hospital, photographs of people and/or family events help to provide context for his/her conversation.
Speak slightly slower, and at a normal level of loudness. (Difficulty in understanding is not the same as hearing loss).
Try to use short, straightforward sentences with familiar words and try to find different, but related words to say the same thing (for example, Are you thirsty? Do you want a drink?).
Concentrate on understanding the child's MESSAGE (don't correct pronunciation or interrupt him/her).
Be aware of fatigue.

Dietician

The dietician is an important member of your child's health care team and will be an active participant in the treatment process and on the road to recovery. See the chapter on nutrition.

Hospital Pharmacist

The hospital pharmacist plays an important role in the health care team. The pharmacist maintains patient medication profiles. This allows for the monitoring of the patient's drug therapy. The pharmacist watches that the drug, dose and route of administration are correct.

It is also the pharmacist's role to provide you with information concerning the drugs being used so that you are aware of the benefits, as well as the risks of the medication. This is especially helpful when it is time to go home, since the pharmacist may be available to instruct you on how medications should be taken at home. Feel free to ask your pharmacist any questions you may have about your child's drug therapy. The pharmacist is there as a resource for your benefit.

Not all hospitals have pharmacists that are easily accessible for patient education. Your nurse can be a valuable resource here.

Pastoral Care

Pastoral Care is a service provided by hospital chaplains, community clergy, and other religious leaders. Spiritual and religious care is provided in a non- judgemental, respectful manner. Hospital chaplains have received special training to provide support and assistance to patients and families facing a health crisis.

The illness of a child raises a lot of questions and concerns in the minds of family members. Pastoral Support can help you and your family to cope. If you wish, your doctor or nurse will assist you in contacting the pastoral caregiver in your hospital or area.

Going Home

Upon discharge from hospital, your child's sutures may be removed and/or you will be instructed to see your family doctor or neurosurgeon for a follow-up appointment. The sutures or staples are usually removed seven to ten (7 - 10) days after the operative procedure. Various return appointments with your neurosurgeon, neurooncologist, outpatient therapists and home care will be arranged as necessary. With many upcoming appointments, it is important for you to keep a diary or utilize the appointment section in the appendices of this handbook.

Prescriptions will be provided for pain control, corticosteroids (swelling reduction) and if needed, anti-convulsants. Make sure you understand why your child is taking each medication. You may review your child's medications with your family doctor, pharmacist or nurse prior to discharge.

If your child is transferred to a hospital closer to home, discharge summaries from the services involved during hospitalization will be sent with you to provide information and ensure that his/her care will continue as necessary.

Discuss any concerns you may have before your child leaves the hospital. Ask your doctor to thoroughly explain his/her condition to you and your family. You may wish to ask what you should and should not expect in the upcoming weeks and months.

Self Image and Hair Loss

Shortly after surgery, and before any radio- or chemo-therapy is begun, it is the time to think about a hair replacement.

After these treatments have begun, it is much harder to replicate the child's hair type and style. And, since it may take time to order or customize, one wouldn't want to leave the child with no hair at all while the wig is being purchased. Since not all protocols result in hair loss, it is essential that the parent determine what will happen regarding this.

Wigs can cost anywhere from $100 for a synthetic, easy to care for piece, to thousands of dollars for a hand-tied custom fit European human hair wig. There are many options available in between.