Adrianne

"Never let your eyes stray think only of the wire and crossing to the end" says the master to the pupil in Mirette on the High Wire, Adrianne was reading this book as she was dying. It's the first item I grabbed when she was being rushed in an ambulance to Boston Cildren's Hospital.  After many months of mis- diagnosis a CT scan  revealed a 5.0 by 5.1 cm heterogeneous mass involving the fourth ventricle associated with significant hydrocephalus. Adrianne was unable to walk independently. Adrianne who once was the picture of health is now a survivor of medulloblastoma(brain cancer). After a long and tedious twenty three hour ordeal in the operating room at Boston Children's Hospital the neurosurgeons were able to resect the majority of the mass out of Adrianne's cerebellum, working to the brain stem unable to remove what was forming on the brain stem. It was then noticed that another surgery was immediately needed, Adrianne was suffering from a hematoma, presumably the pin punctured her skull! Adrianne barely made it to the OR, then barely made it out of the OR! She was alive. That's all that mattered! What was ahead of us was incomprehensible."I just want you to love me" was the first thing Adrianne said after this first major brain surgery. That was the moment I vowed to never give up! It was understood that much rehabilitation was going to be needed. The pediatric neuro-oncologists looking on from Dana-Faber Cancer Institute eventually told us the diagnosis was medulloblastoma, a malignant form of brain cancer that travels in the cerebral spinal fluid and found mostly in children, as you might imagine only devastation rained that day. With only the whisper of hope pushing us, we continued through the fog. The protocol consisted of seven weeks cranio-spinal radiation and nine rounds of chemo-therapy, almost two years of the unimaginable. Already facing the challenge of limited financial means, this pretty much tipped us over the cliff. Hanging on to the rope with some knots in it, we have made it to this day! Adrianne is still alive! She suffers from "radiation induced neuropathy" or "optic nerve atrophy" the cause is still inconclusive, she is blind. As if overcoming brain Cancer wasn't enough of a test! Her endocrine  system has been impacted as well, she has high frequency hearing loss from the chemo therapy. Long term follow up care is unavoidable.  Physical and occupational therapies, ophthalmologists, audiologists, Orthopedics, endocrinologist and getting to go to camp are all apart of recovery. Still somewhat in a state of shock, it truly is miraculous that Adrianne is faring as well as she is! She loves to swim, listen to stories, she tells us of how she wants to be a figure skater, she actually has balanced herself on ice skates!Just today Adrianne told us how she plans to run a marathon and ride a bike, learn piano and become a braille reader.  Adrianne says "I didn't mind being blind until they told me I had to use a cane!" We believe love, integrated therapies, people's donations and what government resources may be available is how we will continue to get through this tragedy. We are asking others for support so Adrianne's work of "crossing the wire" will continue. We couldn't make it through this without the kindness of the stranger...As the aesop saying goes "No act of kindness, no matter how small will ever be wasted!" We truly take this to heart...... In humble, loving gratidue,Elyse and Adrianne