Sophia Posner-Brown is almost 11 years and wrapping up her last year of Elementary School at Mann. She loves singing, dancing, acting, drawing and ANYTHING HAMILTON (just like her twin sister Isabelle) . Her family and friends used to call her Sophie Bear.
To learn more about Sophie, watch this moving YouTube video ( now 3 years outdated at this point). or see the medical summary below.
Please consider joining,recruit others and/ or donating to Team SophieBear.
We are all hopeful that there will be more pediatric-specific brain tumor trials in the future, and thank you for contributing to this very important cause.
Thank you all for your love and support and see you at the Race for Hope!
Below is a brief(ish) summary of Sophie's journey:
Sophie was diagnosed with a brain tumor at the age of 2.
She was a healthy child developing normally prior to April 2009, when she was diagnosed with a pilocytic astrocytoma located in the brainstem Following her initial diagnosis (when we were overseas) Sophia underwent a partial surgical resection of the tumor; a second surgery further reduced tumor size in June 2009. Afterwards, she was treated briefly with carboplatin and vincristine, but carboplatin was discontinued due to a severe allergic reaction. From July 2009 through July 2010, Sophia was treated with actinomycin and vincristine. The tumor recurred after a very short chemo break in December 2010, prompting a third neurosurgery.
We had a year of a nice chemo-free break- until the tumor again progressed in November 2011. The recurrence was initially treated with Gleevac until September 2012, with Temodar added for the last two cycles. The tumor kept growing and spots were found in her spine. Finally, Sophia was treated with a MEK inhibitor, selumetinib, from October 2012 through October 2014.
Since that time, she has been off therapy with stable disease, as monitored through serial MRIs.
Sophia has experienced a number of sequelae in relation to her tumor and its treatment. Specifically, she has had right sensorineural hearing loss, persistent and chronic trigeminal neuralgia affecting the right side of her face, difficulty with balance and gait, and presumptive infection in her right eye. She receives routine treatment and follow-up for these conditions from a variety of medical specialists. Sophia wears a hearing aid in her right ear to correct hearing loss, and has recurrent flare-ups of stromal keratitis in her right eye. Due to corneal scarring, Sophia has very little vision in her right eye. She also has frequent pain associated with her trigeminal neuralgia, which may be precipitated by sensory triggers such as lights, sounds (e.g., hearing test), certain smells, and increased stress.
It is an oral chemo but required frequent blood work and hospital visits. Because the drug is a chemotherapy agent, Sophie is immuno-compromised and therefore gets sick a lot because her body can't fight off other infections.