Thankfully, with all the sophisticated treatments and advanced technology available today, more and more pediatric brain tumor patients are becoming pediatric brain tumor survivors and experiencing life after brain tumor.
Unfortunately, though along with some of these aggressive, life saving treatments, there is also price to pay.
Many pediatric brain tumor patients pay the high price of brain damage and a decrease in cognitive functioning.
Before Bethany’s brain tumor surgery she appeared to be a totally typical two year old.
After undergoing surgery to remove her tumor, suffering a stroke, and experiencing a multitude of other life threatening complications, Bethany was no longer the same little toddler that she was before.
In fact, Bethany became a totally different person and would never, ever again be the same person she was before.
The physical damage done to her brain and the emotional damage caused by the never-ending traumatic, painful, and frightening experiences took a major toll on Bethany’s physical and mental health.
Post brain tumor surgery she functioned almost like a newborn infant. She needed to re-learn just about everything from sitting up to walking and talking.
Today, fifteen years later, I’m happy to say that Bethany was able to learn to sit up, walk, run, and feed herself again.
But her cognitive and emotional functioning has been evaluated as a two- six year old.
She is partially blind in both eyes.
She has been diagnosed with autism and brain injury.
She suffers with a chronically uncontrolled and debilitating seizure disorder.
She has an extremely limited vocabulary and her speech is difficult to understand.
She displays symptoms of Post Traumatic Stress Disorder.
She has Bi-Polar like symptoms
And she suffers with occasional aggressive outbursts.
I’d say she paid a pretty high price.
Wouldn’t you agree?
Life after brain tumor became all about helping Bethany regain the use of her right arm, hand, and leg, encouraging her to talk and/or communicate in any way possible, helping her adjust to being blind on the right sides of both eyes, constantly being on high alert because of her never ending seizures, desperately seeking any treatment that would stop her seizures all to no avail…ever, and dealing with angry, aggressive behavior.
And so Life after brain tumor became life full of speech therapy, occupational therapy, physical therapy, special education, IEP meetings, sign language lessons, behavior evaluations, following pointless behavior plans, the Ketogenic diet, the Modified Atkins diet, the GFCF diet, neurology and neurosurgery visits, brain tumor clinic appointments, annual MRI’s, EEG’s and quite a few visits to several Ronald McDonald Houses in NY and Boston!
Life after brain tumor has been stressful, exhausting, nerve wracking, depressing, disappointing, heartbreaking, and tragic.
I would give anything, if I could turn back time and somehow prevent my daughter from ever having had a brain tumor and experiencing so much suffering and loss.
But despite all that…
Life after brain tumor has also been delightful, encouraging, hopeful, happy, joyful, exciting, exhilarating, inspiring and blessed!
*This post contains affiliate links. Thanks if you decide to purchase an item from one of these links!*
Not too long ago it was thought that the brain was a fixed and unchanging “machine.” Find out in the book, Brain That Changes Itself, how new research on neuroplasticity has proved that our brains are actually to a certain extent, capable of “healing” and rewiring themselves!
The brain is an amazing and interesting machine that is always working, even when we are asleep! Your Daily Brain, shows us all the strange and sensational ways in which our brains work!
Reduce the stress on your brain by listening to Bach on My Brain.