When my daughter, Bethany was diagnosed with a brain tumor, it came as a bit of a shock to put it mildly. It had become frightfully obvious that she was experiencing some weird health issues, but we certainly had no idea that she had a baseball sized tumor growing in her teeny, tiny, two year old cerebellum or that it was just hours away from killing her!
Upon learning that Bethany had a brain tumor, everything went foggy for me and I fell apart. I kind of felt like I was on the outside looking in at the situation. The feeling is kind of hard to explain. I remember thinking that this was the stuff cheesy TV movies were made of. This does not happen in real life. Then I went into robot mode and my husband and I did what we needed to do to save our daughter’s life.
Although it is my hope and dream that no other child ever need suffer with a brain tumor again, I know that is highly unlikely.
The following is my advice and some information if your child or other loved one ever has the misfortune to be diagnosed with a brain tumor.
I highly recommend that you:
• Gather all the information you can about your child’s particular type of tumor and its treatments so that you can make intelligent, informed decisions.
• Join a support group. When Bethany was in the hospital, members of a brain tumor support group actually visited patients and their parents in their rooms and held a little Christmas party for us!
• Find out what financial resources are available for you and your child. There are funds available for all types of needs from transportation assistance to college scholarships for brain tumor survivors.
• Consider getting mental health and/or spiritual counselling because believe me, you’ll be taking the most devastating, unwanted ride of your life. You’ll find yourself feeling like you’re going crazy and you’ll question every religious belief you’ve ever trusted in!
• Don’t be afraid to ask friends and relatives for help and tell them exactly what you need them to do for you, because most of them won’t have a clue as to how to really help and support you.
• If you have other children, don’t forget that they are hurting and need you just as much as your ill child does.
A few facts about paediatric brain tumors:
• They are quite rare. Only about 4600 children up to age 19 are diagnosed with a central nervous system tumor (CNS) each year in the US.
• There are over 100 different types of brain tumors.
• Even if a brain tumor is considered to be benign it can still be just as life threatening as cancerous tumors depending on their location or the deadly problems they sometimes cause such as hydrocephalus, or when they interfere with breathing and swallowing. These types of benign tumors are therefore usually referred to as non-malignant cancer. Bethany’s stage I pilocytic astrocytoma was classified as a non-malignant cancer.
• Most childhood brain tumors are located in the posterior fossa, or back part of the brain. This includes the cerebellum, the brain stem, and the fourth ventricle.
Tumors of the posterior fossa:
• Medulloblastomas are the most malignant of brain tumors in children and 20% of all pediatric tumors.
• Cerebellar astrocytomas are benign glial tumors of the cerebellum. They are the second most common childhood tumor and make up 15% to 20% of all paediatric tumors.
• Brainstem gliomas make up approximately 10% to 15% of childhood brain tumors and usually effect children between the ages of 5 and 10.
• Ependymomas make up 8% to 10% of paediatric tumors and occur at any time during childhood.
Symptoms of tumors in the posterior fossa:
Early Signs: • drowsiness • headaches • imbalance • ataxia (or an uncoordinated walk) • nausea and vomiting
Later signs: • dilated pupils • eye problems, • facial muscle weakness • hearing loss • loss of feeling in part of the face • problems with taste • ataxia • vision problems. • hydrocephalus
Please stay tuned for: We’re Going Gray for May Part Two: Resources.
We’re Going Gray for May Part Three: Making Wishes and Dreams Come True.
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