My Child Has a Brain Tumor, Now What?

"Your child has a mass in her head."

These simple words change a parent's life forever. No parent ever wants to hear those words but unfortunately many do. Parents are then thrust into the club that no one wants to be a member of.

Hearing that your child has a brain tumor is terrifying and extremely stressful. Parents often feel helpless and not sure what they should do. Here is some advice from a parent who is a member of the club no one wants to be in.

Learning about your Child's condition

First thing you need to do is get a notebook and write down every question you have for your child's medical team. Learn as much as you can about your child's tumor. Knowledge will empower you. Write down the information you receive, medicine schedules, doctors names and phone numbers. That notebook will help you stay organized and give you some order when everything around you feels like chaos.
Take your notebook to all appointments.

Your child will have numerous specialists like neurosurgeons, oncologists, neurologists, ophthalmologists, physical therapists and others. When you talk with the doctors try to have another person there with you. It can all be overwhelming and that extra set of ears may hear something that you didn't hear correctly or think of a question you may have overlooked.

Here are some questions to ask your child's medical team:

What part of the brain is the tumor located?
Has the tumor spread?
What functions does this part of the brain control?
What size is the tumor?
Will my child have surgery or a biopsy?
How will surgery affect my child?
What is the name of the tumor?
What grade is the tumor?
What kind of treatment do you recommend for my child?
Could you help us in getting a 2nd opinion?
Is this hospital part of the Pediatric Brain Tumor Consortium (PBTC)?
Is there a tumor board at this hospital?
What is my child's prognosis?

Make sure and get copies of all of your child's medical records; radiologist reports, MRI scans, CT scans and so on. Your doctor should help you do this or point you to a hospital social worker that will assist you.

Getting a 2nd opinion is crucial. Most Children's Hospitals will not charge you for a 2nd opinion and your hospital can fax all of the information straight to them. You want to send your child's medical records to a hospital that specializes in pediatric brain tumors.

Research and learn as much as possible. Look into clinical trials, diet changes, and natural therapies. But please beware of scams and false information on the Internet. Discuss everything with your child's medical team. My child's doctor was very open to non traditional treatments like Reiki and acupressure.

Dealing with the diagnosis

It is normal to feel shocked, angry, scared, and anxious. But it is very important during those first weeks of your child being diagnosed to remember to take care of yourself. This is extremely important.
You are your child's best advocate.
You need to eat properly and make sure you get some sleep.

There are many support groups for parents with children with cancer. Your hospital or community may have support groups available for parents. There is a very large online pediatric brain tumor group through yahoo groups. I can't stress how important talking to other parents is. Other parents going through the same thing can give you valuable information and hope.

You may also benefit from seeing a counselor who specializes in pediatric cancer. Talk with your child's medical team and they can steer you in the right direction for getting any professional help you may need.Family and friends will want to help. Let them. Your child's diagnose affects all those around you and your child. Let someone else cook dinner, watch your other children, feed your pets, or make phone calls. You need as much support as you can get. Do not turn your back on those willing to help.

Setting up a web page for you child is also very helpful. Caringbridge.org offers free web pages for children and adults who are dealing with critical illness, treatment, and recovery. It can be difficult to explain the situation to 50 people each day. With having the web page you can post the information once and not have to re-tell it over and over.

Finding out that your child has a brain tumor is more than likely the most difficult thing you will ever hear. But remember that there are many people who care about you and your child and want to help. Your child's medical team and organizations, like the American Cancer Society, offer support and resources. Supersibs.org is an organization for the siblings of children with cancer and brain tumors.

Do not be afraid to reach out to others for help and knowledge.
Empower yourself to make the best decisions you can for your child.

http://www.cancer.org/docroot/home/index.asp

http://health.groups.yahoo.com/group/Pediatricbraintumors/

http://www.caringbridge.org/

http://www.supersibs.org/