This booklet has been written especially for you. On the following pages, you will find information which will help you become aware of the many and varied services that are available. You are not alone and there are many people who can assist you; this booklet will help you find them.
In the next few days, weeks and months, you will meet with many professionals who will be involved in the care of your child. You are the consistent person with your child as the professionals come and go in a blur of uniforms, operating room greens and lab coats.
Always listen carefully to what everyone has to say and make notes. Start a journal and learn to carry a pad and pencil. Ask what literature is available and read as much as you can on the subject. Being informed will allow you to feel comfortable when asking questions of health care professionals. You will make very serious decisions regarding your child's treatment. These must be informed decisions. It often helps if a family member or friend reviews with you, or is present during the discussion with your doctors. It is surprising how much of the information you can miss.
Keep a journal on your child's day to day care. In diary form, you may want to track your child's progress (treatments, side effects, blood tests, procedures, etc.) and write down concerns. It would be advisable to keep a separate section for actual names of professionals involved; know who these people are and how to reach them. Above all, make an effort to learn who to ask for good, solid information. A section for this is provided at the end of this publication.
The one thing to keep in mind is that you must be an advocate for your child.
Trust is the most important link between you and your child. Always tell your child the truth about procedures and answer his/her questions honestly so that they can understand. This trust will be strength for both of you as you deal with the challenges which face the family of a child with a brain tumor.
It may be beneficial to talk with other families which have experienced having a child with a brain tumor. There is a lot of hope out there! Many children are surviving and living very normal lives. There is great comfort in knowing you are not alone. Contacts may be arranged by asking your physician or by contacting the Brain Tumor Foundation of Canada.
Many sections in this book may not apply to your child. You may wish to look only at sections that apply to your family.
This book has been prepared to assist you and your family during the weeks, months and years ahead. It does not answer all of the questions and concerns that you may have regarding your child's future. It is our hope, that with this resource as a guide, you will know where or who to ask for help.
Be assured that you are not alone. There is hope for your child's future.
You have an important role in the health care team, as your child will likely be looking to you, not the team, for guidance. How you respond to the professionals will be the way your child will respond. If you have a positive, upbeat attitude, so too will your child. If you are down and worried, your child may sense this and have similar feelings. If you show confidence in the care received, the child will have a secure feeling that treatment decisions are what is best for him/her. Teach your child to have a positive attitude towards treatments. Help him/her to see that the medication (or test or radiation, etc.) is a much needed friend in this fight to remain well and healthy.
Try to keep your life as normal as possible. This is important both for the child with the illness and for other brothers and sisters. Try not to cancel activities, keep school attendance as regular as possible and even simple things like maintaining manners are important. An attitude and atmosphere of "business as usual" can help with the vision that life indeed does go on, and that everyone in the family has certain responsibilities and rules, including the child with the brain tumor.
As you care for your child and your family, remember to care for yourself. Do not allow yourself to become exhausted. Try to find time for adequate rest, proper nutrition and personal "space" for yourself. Seek comfort and support from others close to you. You may be surprised to learn how much friends are able to offer - both by physically reducing your load and also by listening and offering emotional support. It is important to look after your needs in order to be strong for your child.
Remember: someone is counting on you!
There are books that can provide you with facts and details about your child's illness. There are also books that can help you and your child cope with the journey ahead. We suggest you investigate both.