Initially, you or your child will be making regularly scheduled visits to the neurosurgeon or other specialists to follow up on his or her progress. Professionals affiliated with support services may be monitoring you at home to provide help, but there are still other experts who may have to be...
Parents whose child has a tumor are easily overwhelmed by everything that needs to be handled. They may be physically and emotionally drained from extended hospital stays and the intensity of caring for their sick child. Other children in the family may have unavoidably been deprived of...
There are laws to protect the rights of children who are left with learning disabilities, physical or health limitations that keep them from participating in regular educational programs.
It will help if you discuss ahead of time with your child’s doctors (and write down in your notebook) what signs and symptoms you might normally expect to see during your child’s recovery period. Collect prescriptions for all medicines you might possibly need. Ask the doctor what...
After the initial diagnosis of a brain or spinal cord tumor is made, you may need to consult other specialists and doctors, depending on the type of tumor and the treatments recommended. Together with you, these professionals will take a team approach and map out a general plan of care for your...
Educate yourself. Know about your child’s illness and why referrals to specialists are needed. You will sound knowledgeable and thus will be more likely to quickly get the assistance you need.
Get a copy of your policy and review it carefully. See exactly what services are covered...
Psychosocial Impact and Community Reintegration
Presented by Libby Klein
General concepts.
There are 26,000 brain tumor survivors in the USA today (CBTRUS)
According to the IOM report on childhood cancer survivorship “cognitive impairments such as learning disorders...
“Back to normal” means “back to school” for most older children. When your child returns to school, you want him or her to be treated as normally as possible. You will need the cooperation of both the school and the health care professionals working with your child. It is...
Cranial radiation, brain surgery, and some chemotherapeutic agents can compromise cognitive and/or sensory functions and may result in learning difficulties. Special education services may be appropriate for children whose brain tumor treatment seriously interferes with education and learning.
The tasks, obligations, and emotions related to having a child with a serious illness can strain even a strong marriage and family. If parents are divorced or separated, they will need to try to put their personal differences aside to help their child. Single parents may need even more support from...
Good nutrition is an important part of your child’s treatment. Try to deviate as little as possible from your child’s normal diet. Your child’s body needs to heal and gain strength in order to resume normal activities and undergo any treatments that may be planned.
Bills add up rapidly. Even if you have good insurance coverage, there will be nonmedical expenses such as phone calls, extra gas, tolls, meals away from home, child care, and lost wages. (Keep receipts—some of these expenses may be tax deductible.) It will be important that you receive...
Going home can be exciting and joyous for the whole family. It can also be a hectic, fearful, and anxiety-filled period. Both you and your child may feel apprehensive when leaving the security of familiar doctors and nurses, even though they are only a phone call away. All of these emotions are...
Clinical Trials/Protocols
Your child’s doctor or treatment team may recommend that you enroll your child in a clinical trial. This is a research study of new therapies (or experimental drugs and treatments). By studying a larger collected group of children in a protocol with very exact...
An advocate is a person who speaks in support of, or pleads the cause of, someone else. You are the best advocate for your child. Sometimes your child’s voice will be heard only if you speak up.
Not everyone wants or requires a second opinion, but it can be very reassuring, and no doctor should be insulted by your requesting to consult another doctor about your child’s life and well-being. Opinions may not, of course, be of equal value. Try to obtain them from pediatric...
Your child’s neurosurgeon will go over the precise details of what will take place during your child’s surgery. It is important, for several reasons, that you clearly understand what is going to take place. Not only are you going to be asked to give informed consent by signing the...
Ask for unrestricted visiting hours for parents.
Ask what accommodations the hospital provides for parents staying overnight, such as recliner chair-beds, toiletries and bathing facilities for caregivers, laundry facilities, meals for parents, and available refrigerator space.
Take...
Depending on what type of brain tumor your child has, you may be experiencing long hospital stays. A hospital environment can seem intimidating at first, but we hope the hints we provide here will help you and your child feel more comfortable. Both of you need to feel as comfortable as possible...
As a parent there may be times where you want more for your child than what is being offered by your child’s clinical team through standard medical care. When used in addition, or as a compliment to, traditional treatment and surgery, complimentary therapies and nutrition counseling may...
Just like their parents, children often feel emotionally stressed in the face of serious illness. Children’s—especially teens’—anxiety levels may already be high from whatever suffering the tumor has caused, from the loss of independence and physical ability, to pain or...
For children (especially teenagers), self-esteem and self-confidence are often closely related to physical appearance. Changes in appearance may lead to an altered self-image.
