Stereotactic Frame
By asking informed questions, you will be better able to understand the rationale for treatment in your child's case. Some hospitals have pediatric teaching programs for chemotherapy and radiation therapy to help you and your child in understanding the recommended treatment(s). There will be specially trained professionals along the treatment path to answer questions and offer support.
These professionals are ready and prepared to go into action to help you and your child. Depending on the diagnosis and treatment required, you may be in contact with one, or possibly, three different teams of professionals:
It is important to be aware of who the members of each team are, and how they can be contacted. You will then know exactly who to contact with questions during each treatment stage. These people make themselves available and are a key resource for information. Don't be afraid to contact them.
At the time of diagnosis, a child is frequently placed on a medication called Decadron (dexamethasone). See the chapter on Decadron for information on this medication.
Although the patient is awake during the procedure, appropriate intravenous sedation with local anaesthetic makes him/her comfortable. The five nerves that supply the scalp on each side are injected with an anaesthetic agent which numbs the entire scalp. The actual brain itself has no pain fibres. In pediatrics this procedure is rarely used, and only in older children.
The procedure involves placement of a special frame (see illustration below) on the patient's head before imaging with a CT scanner, although an MRI scanner can be used. For the purpose of a biopsy, a thin probe attached to the frame is brought through a small incision in the scalp and then through a small burr hole within the skull. It is introduced into the tumor after its exact location has been determined within the frame using a stereotactic planning computer. With this probe, a small segment of the tumor can be removed (biopsy) which will then allow the pathologist to make a diagnosis. This technique is used for tumors which are deeply situated in the brain and not easily accessible through a conventional craniotomy. Its development has enabled surgeons to obtain a sample of tumor they would not ordinarily have been able to reach in the past. Some systems are now frameless as technology continues to improve.
Decisions as to what course of treatment will be best for your child are made by you and your neurosurgeon or neurologist in conjunction with the neurooncologist, radiation oncologist and a pediatric oncologist at a cancer care facility.
Since there may be more than one option offered for your child, you must be prepared to study the options carefully, discuss them as a family, and then decide, with the help of your physicians, what the best path is for your child. Time will be given for you to make this decision.
Note: Extensive information about the specific radiation treatment will be given to you by your cancer care facility.
Your child will be expected to remain still while receiving radiation treatments. This is very difficult for a child. A mould of the child's head will be made to ensure that their head is stabilized during treatment. This will require at least two visits to the mould room where casts and plastic shells are made. The child may anticipate and fear additional pain associated with yet another new procedure. At times this fear does not allow the child to cooperate. Therefore it may be necessary for your child to be sedated. If a child is adequately prepared for what to expect during the mould room process, there is less need to sedate a child in order to gain his/her cooperation. A visit with the Child Life Specialists goes a long way in preparing a child for further treatments and procedures. This can be started while your child is in hospital.
Since radiation may cause some swelling (edema) around the tumor site, the patient is generally placed on steroids to reduce this. Radiation to the head will cause hair loss in the area treated. The loss of hair usually does not begin until two weeks after the start of radiation. The hair may regrow over several months after treatments are completed, but sometimes the loss of hair is permanent. Other possible reactions could be nausea, vomiting and a feeling of fatigue. There may be local skin irritation including redness and itching. Your child will be assessed daily during treatment as effects vary in intensity for each individual child. Medications will be ordered by the oncologist as indicated to minimize side effects.
Radiation to the pituitary or hypothalamic area may sometimes cause delayed (one or more years) reduction of hormone production. This can affect health, growth, energy and sexual development. Radiation to the spine can also impair growth. An endocrine and neuropsychological assessment will be indicated after radiation therapy.
Radiation is always considered very carefully for children under the age of 4 years. The connections of the brain are developing very rapidly until this time and may be hurt by the radiation.
All of these details will be discussed with you in detail by the Radiation Team. Literature will be available to you as well.
In children under the age of four, chemotherapy is generally preferred to radiation therapy. It is felt to be less harmful to the central nervous system of a rapidly growing child.
Chemotherapy may be given by any of the following routes:
Port-A-Cath®
There are many ways to access a vein. The usual way is through an intravenous line placed in a hand, arm or foot vein. However, when people require multiple intravenous therapies over time, such as chemotherapy, the peripheral veins (small) may collapse and become useless. Under such circumstances, a more permanent access to a larger vein is required. The Port-a-Cath is one of the common methods of more permanent venous access.
The Port-a-Cath is so named because it consists of a port and a catheter. The port can be square or round, and has a metal base with a self-sealing rubber centre. It is implanted just under the skin, usually in the area of the upper chest (either left or right side). The catheter is made of a soft, pliable material and connects the port to a large vein, usually one of the jugular veins in the neck.
The Port-a-Cath is placed in the operating room and requires a minor surgical procedure. Either general or local anaesthesia may be used. It is important that the catheter be placed into the vein that joins the heart. The catheter position is checked in the operating room by X-ray.
Nothing is visible outside the body, other than a small bump where the port is located, but there are two small incisions, one on the upper chest, and one in the neck area. They will be covered by dressings until they heal. Usually the sutures are absorbable so they do not need to be removed. Tylenol can be taken after the procedure for any discomfort from the incisions.
The Port-a-Cath can be used to give intravenous fluids and medications and can also be used to take blood samples. Before any of this is done, the skin is cleaned with an antiseptic, and then the rubber portion of the port is punctured by a special needle. A syringe or intravenous line is then connected to the needle and medications or fluids flow into the port, through the catheter and into the vein. The only discomfort is a pin prick when the needle is inserted. Special creams may make the child more comfortable. After the chemotherapy or blood test, the Port-a-Cath is flushed with Heparin or saline to prevent the catheter from becoming blocked by a blood clot. If no therapy is required, the Port-a-Cath must be flushed monthly by your oncology nurse or at the local cancer care facility. The more the port is used, the thicker the scar tissue and access may be somewhat more difficult. The Port-a-Cath is easily removed when it is no longer required. There are now different systems used but the basic system for each is similar to that of the Port-a-Cath.
The Ommaya Reservoir can also be used to drain cyst fluid that may be associated with a tumor.
A low platelet count increases the risk of bleeding. This may show up as easy skin bruises, small red spots on the skin (petichiae), or as nose bleeds or bleeding from the gums while brushing the teeth. Any abnormal bleeding should be reported. A transfusion of blood platelets may be needed.
Low red blood cells (low hemoglobin) is called anemia. This may cause skin pallor, tiredness, loss of energy or shortness of breath. A red blood cell transfusion may be needed. Blood transfusions are only given if the blood counts (red blood cells or platelets) are very low. Low blood counts from chemotherapy are usually a temporary problem, and will recover once the chemotherapy is completed.
The initial consultation may take place either while your child is in hospital or after your child is discharged home. It is extremely important that family members accompany the child whenever possible because different treatment options are usually discussed at this time. It is difficult for any one person to remember all explanations regarding possible treatments which are available to the child including further surgery, radiation therapy or chemotherapy.
The different health care professionals you and your family might meet at a cancer care centre include:
There are many effective protocols (treatment methods) currently in use at most Cancer Care Centres.
A clinical protocol may consist of a new way of offering existing radiation and chemotherapy, or it may involve the use of an experimental drug or treatment.
Your child can expect to spend a least one hour at a cancer care centre for the initial visit. Depending upon the type of treatment your child will receive, subsequent visits would vary in length.
Generally your child will not receive treatment on the first visit. It may be necessary for your child to be sedated for his/her treatment. This will depend on the age and level of cooperation the child is able to give. This assessment will be made between the nurse and Radiation Oncologist at the Cancer Care Centre.
Most cancer care centres treat patients who are able to stay at home and come to the facility for their treatment. It may be necessary for the child to remain in hospital during some treatment.
Detailed information regarding treatment and services available to you will be explained by the individuals working at the cancer care facility. Health care professionals at any cancer care centre are dedicated to providing the best possible care for your child and family.
An additional source of information may be found in a Patient and Family Library. Some cancer care facilities have a lending library available for cancer patients and their families. Researching and understanding your child's brain tumor may help you to cope with the illness.
Preparation provides you and your child with knowledge and control. This may help to reduce anxiety and stress prior to, and during treatments.
Child Life Specialists, or their delegates, are available to help with this preparation, through medical play and/or direct teaching.
With the younger child, understanding is gained through hands-on play with medical equipment and supplies. A favourite doll or teddy bear may play an important role here.
With the older child, a more traditional teaching approach utilizing pictures, equipment and discussions is used.
Your participation during these sessions will allow you to gain increased understanding of the treatments, as well as enable you to review and reinforce this information with your child at home.
Together with the Child Life Specialist, you can make a difference in how your child copes with difficult and trying treatments.
As is true for all ages, your child will be better able to face what lies in the days ahead if he or she is given accurate, honest and age-appropriate information.
Pain management involves teamwork between the parent, the child and the professional. The professional's role is to explain and educate you and your child concerning the treatment. Many hospitals have Child Life Specialists who will help prepare your child through play therapy. The parent's role may be to help your child understand as well as to acquaint the professional with your child's individual perceptions and feelings. Parents know their child best. Try to involve your child as much as possible in the management of pain. How this is accomplished will depend on the age of your child.
Experiencing pain is a very personal experience. There are some factors that may influence a child's perception of pain. Such factors include fear, fatigue, surroundings and the attitude of a parent or care giver. Try to identify and understand your child's concerns so that you can work to build the level of trust the child has with you and the care giver.
The sharing of information, the use of appropriate pain relieving techniques, as well as the formation of trusting relationships will help in overall effective management. Working as a team, you will be able to develop a coping strategy which will encompass your child's unique needs, perceptions and fears.
Ommaya Reservoir