The word rehabilitation has been defined as returning to an optimal physical and psychological potential. In the pages which follow, you will find specific information concerning facilities available to you after discharge from the hospital.
Not all will be applicable or appropriate for your child, but it is advisable to familiarize yourself with the services that are available should you ever need them. You may have been started on a rehabilitation program while in hospital.
Your child's health care team will organize his/her transition home by making appropriate referrals. It is difficult to predict exactly how you and your child will manage in your home setting (and you will not know until you actually get there and live each day). Try to maintain daily routines and keep up with the outside world as much as possible.
Your child will continue to have regular appointments with his/her doctors to assess progress. Continue your daily journal and arrive at each appointment prepared to ask questions you may have. It is likely that your child will have regular CT scans, frequently at first and then once or twice a year thereafter. Periodic bloodwork may also be required. The appendices at the back of this book will assist you in coordinating these visits and keeping track of important information.
Ask your doctor or medical team to outline under what circumstances you should call. In addition to his or her instructions, the following are circumstances which would warrant immediate attention.
If your physician or health care worker is not immediately available to discuss the situation, leave appropriate detailed information and your call will be returned at the earliest possible opportunity.
You should clarify in advance how to reach your physician or health care worker during non-regular working hours. It may be useful to keep individual phone numbers at the back of this handbook, as well as by the telephone, for quick reference. There will be a system to contact your physician or his team during nonworking hours. Some physicians may have you call them directly, while others may ask you to call their Residents (doctors in training to become specialists) or other team members who will then notify your physician.
Ask each professional that you deal with what to do when you have an urgent problem and then record each suggestion for future reference.
Your child's physician has access to many support services in the community to aid you and your family. Many of those services require a physician's signature on medical assistance forms. Your child's physician can also provide drug information and prescription renewals for your child.
Even though your child is being treated by specialists, your child's physician is still his/her primary doctor for general health care. He/she will want to continue to monitor your child's height, weight, head circumference, etc. and keep your child's immunization up-to-date. Depending on your child's age, diagnosis and treatment required, your child's physician will work with the specialists to determine when and if immunization will be given.
During a difficult period, your family physician can be an invaluable resource. He/she can help you to secure the best care possible for your child.
Pharmacists consult with the physician on a regular basis and are trained to discuss with your doctor all matters related to your child's health and drug therapy. It is advised that you deal with one pharmacy so that your family pharmacist can keep records of your child's complete medication history and deal with any problems that arise both with prescription medications and any over-the-counter drugs which you may purchase. In addition, if your child has any dietary restrictions, your pharmacist can help you avoid potential interactions between foods and drugs.
Many people have questions about their drugs, the dosages, short-and-long- term side effects, etc. and don't know who to ask. Often people assume that pharmacists and physicians are too busy and therefore hesitate to ask questions. However, your pharmacist is a health professional prepared to assist you with any drug information. He/she is prepared to spend the time you need to address your concerns. Questions can be answered when picking up prescriptions or by telephone at a later time. The pharmacist will be able to explain the medication, its appropriate dosage interval, how best to give the drug to your child, common side effects your child may experience, as well as those side effects requiring medical attention.
From time to time your physician may order a new prescription with which you have had no experience. In such cases a few days trial of the new drug may be appropriate. Feel free to ask your pharmacist if this trial period is suitable for your child's particular prescription. Perhaps he/she can assist you with a trial quantity while holding the balance of the prescription in the pharmacy until the response to the new medication is determined.
Your child's medication is so important that you should be careful to obtain refills from your physician well in advance to avoid running out. On those rare occasions when you find yourself out of medicine, perhaps on a weekend or evening, explain the situation to the pharmacist and ask him for assistance. Your pharmacist is there to serve you.
In the same fashion that you carefully choose your family doctor or lawyer, it is important to your good health that you carefully select one pharmacy for all of your family's medication needs.
The child may be self-conscious because of physical changes brought about by the brain tumor and treatment. He/she may worry about how friends will treat him/her, parents will be concerned that teachers and classmates will overprotect the child or not be able to meet his/her needs, and teachers and classmates may be nervous over what to say, how to act and generally know very little about pediatric brain tumors. On the other hand, an early return to school can be a signal to everyone that diagnosis of a brain tumor does not have to mean the end of all normal life.
In order to promote smooth re-entry into school after the diagnosis of a brain tumor, communication links must be developed and maintained between school, hospital and home. Some treatment centres may have a formal school re-entry program to assist parents in this endeavour. If not, most centres will have someone (e.g. psychologist, social worker, nurse) who can liaise with school staff and provide them with necessary information concerning the child's disease, treatment, side effects and the emotional needs of your child. In some cases, this person may be able to provide information or resources to assist the school in informing classmates about your child's illness. The professional may also be able to assist parents and the school in setting up any special services (e.g. wheelchair access, home instruction).
If the school staff is provided with information as soon as possible after a brain tumor is diagnosed, and given clear, practical information about the child's needs, school staff and classmates, in cooperation with families and medical staff can provide a supportive classroom environment when the child returns to school.
It helps to maintain open communications, and to let the school know that you are available to answer questions, to educate to the school staff concerning your child, etc. You may also want to send a note of thanks to the school staff for their help in making the transition back to school easier for your child. This is not only appreciated by the staff, but makes it easier for the parent to ask for special consideration when needed.
For more information or resources, please write:
Pediatric Cancer Support Program of Southwestern Ontario,Depending on the treatment needed, your child's immune system (the body's ability to fight infection) may be affected. He/she may not be able to protect the body in the usual way which makes immunizations safe for other children.
Some vaccinations given contain live viruses. Normally, the body reacts through the immune system to develop antibodies (protective mechanisms which help to avoid an infection if the child comes in contact with the virus again). If this system is altered by medications given to treat the brain tumor, the child is defenseless against the live virus and can become seriously ill.
Once treatment has stopped, it will take a period of time before the immune system is back to its normal fighting strength (approximately three to six months). Thus, it is essential that you contact your physician, neurosurgeon or oncologist prior to your child receiving any vaccine.
If you should decide to travel with your child during or following treatment, there are several things to consider regarding health care while away from home. Following are some questions and issues you may want to consider before leaving, especially if travelling outside your province / state / country:
Contact your employer to determine if your current medical coverage will apply for any possible treatment your child may require while away from home. If not, additional coverage may be required.
When buying additional health insurance for the trip, check for benefits covered, limitations, age restrictions, deductibles and claims procedures. Some plans have a "preexisting condition" clause and you should be sure that the plan you choose will fulfill the possible medical needs of your child during the trip. Policies vary from one company to another.
Will your child require medical services or medication during the trip? If so, your family physician may be able to assist in making the necessary arrangements in the location you are visiting.
Is there a phone number you can call in an emergency to obtain assistance?
If medical services are required during the trip, will you have to pay directly or will the medical plan cover it?
It is a wonderful idea to plan a trip with your child. Be sure to do your medical insurance homework to ensure that you and your family have a happy and worry-free time together.