Ava Brae was a special delivery on Valentine's Day, 2006. Just 13 short months later, she was diagnosed with Grade-4 Classical/Nodular Desmoplastic Medulloblastoma, an aggressive form of brain cancer. Ava's story is a progression of victories and miracles, both small and large, along her path to survival.
At Ava's one-year well-baby exam, her pediatrician announced concerns about the size of her head relative to the nominal pediatric growth chart. She was sent for a CT scan at a local hospital where our worst fears were affirmed. Ava was immediately transported via ambulance to the Texas Children's Hospital in Houston, TX, where it was confirmed that she did have a massive brain tumor in her posterior cerebral cavity. The MRI estimated that in just one year her tumor had ...
Ava Brae was a special delivery on Valentine's Day, 2006. Just 13 short months later, she was diagnosed with Grade-4 Classical/Nodular Desmoplastic Medulloblastoma, an aggressive form of brain cancer. Ava's story is a progression of victories and miracles, both small and large, along her path to survival.
At Ava's one-year well-baby exam, her pediatrician announced concerns about the size of her head relative to the nominal pediatric growth chart. She was sent for a CT scan at a local hospital where our worst fears were affirmed. Ava was immediately transported via ambulance to the Texas Children's Hospital in Houston, TX, where it was confirmed that she did have a massive brain tumor in her posterior cerebral cavity. The MRI estimated that in just one year her tumor had grown to consume approximately 70% of her cerebellum. Her long-term probability of survival was estimated at less than 30%.
Mom & Dad began building concerns for Ava about 6 weeks before her diagnosis. She had regressed in her progression of skill development in walking, coordination, and balance. Although she commonly attempted to stand, her legs and hips had become more and more "wobbly." Also, she was favoring one side of her head, leaning that way to apparently find more comfort.
A complicated 5 hour brain tumor resection occurred on Monday, March 19, 2007. Given the size her tumor was relative to her age, it was no surprise when Pathology reported on Sunday, March 25, that a significant portion of the tumor had already reached Grade 4, indicating that it had developed into an advanced form of brain cancer. If Ava were to SURVIVE, she would need a minimum of 15 months of aggressive chemotherapy and radiation treatment. Due to her age at the time of diagnosis and treatment if Ava were to THRIVE (walk, talk, develop normally etc.), she would need nothing short of a miracle.
Both chemotherapy and "local" proton radiation was required, even understanding that there would be permanent long-term developmental effects from exposure during this critical development time period. Due to Ava's age, size, weight, and specific type of chemotherapy drugs, 3-5 days of hospitalization would be required for each treatment session, followed by 21 days of heavy out-patient chemo, medications, blood testing, and in-home nursing care. Getting a 13 month old to cooperate and hold still during a simple MRI or radiation therapy session would require general anesthesia for every single visit. Under the unbearable pressure of all that was to come, our family completely collapsed into the defensive mode of fighting for basic survival with hopes that we could all stay together.
Without a clue of what was to come, Ava faced 2 brain surgeries 7 ancillary surgeries 13 months of chemotherapy 2 months of high dose proton radiation to her cerebellum non-stop nausea/vomiting/dehydration countless central line placements & dressing changes blood draws and tests blood transfusions IV lines port access needle sticks MRI scans lumbar punctures anesthesia for almost everything antibiotics oral meds shots constipation Psychoanalysishearing tests all consuming over two years of this little three-year-old's life.
Along the way, she faced her pain with complete and total trust to Mommy and Daddy. Most every single medical professional she met was left completely dumb-founded observing her ability to accept her sentence without a fight. Ava is renowned by all to be the most "laid back" and content little child that nearly anyone could meet. She carries an incessant happiness that is infectious to those around her. Her signature traits are her captivating ocean-blue eyes... her charming fair skin, her two left-hand middle fingers always in her mouth, her "tiger growl," her lung-filling screech and giggle, and her famous squeaker shoes (which helped her learn to walk!).
Through all of this, Ava endured and today her march onward continues. Literally against the odds, Ava has learned to walk, talk, run (with a little challenge), sing songs, play games, and behaves just about like every other 2 year old she meets. Although she faces a life-long road of future scans and tests, shes a cancer survivor. Her path has shaped her into one of the most determined little people you will ever meet. Along the way, our family learned what it is to FILL our lives with every waking second of every day. For our family, a life-blow as debilitating as this helped us to really learn to appreciate how fragile and precious life really is.
Today ~ Ava likes to tell everyone she meets I'm a MEEWICAL!
Indeed she is
;-)
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