2018 Race For Hope - DC

Team Sophie Bear

2018 UPDATE:

 

Sophia Posner Brown, also known as Sophie Bear, is an active 11-year-old wrapping up her final year at Mann Elementary School. She loves exploring her artistic passions, including ANYTHING related to Hamilton. April 1st marks Sophie’s 9-year journey fighting cancer and we are pleased to be chemo-free for the past 4 years!

 

To learn more about Sophie and her diagnosis, watch this YouTube video (thanks Edu!) complete with soundtrack of 6-year-old Sophie and Isabelle belting out Roar by Katy Perry.

 

We are all hopeful that there will be more pediatric-specific brain tumor trials in the future, so please support the cause by joining Team Sophie Bear and encourage others to do the same!

 

Thank you for the continued love and support throughout the years. We look forward to seeing 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 living overseas in Indonesia) Sophie underwent a partial surgical resection of the tumor; and then a second surgery to further reduce the 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, Sophie was treated with actinomycin and vincristine. The tumor recurred after a very short chemo break in December 2010, prompting a third neurosurgery.

 

We had just one-year chemo-free 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, Sophie was treated with a MEK inhibitor, selumetinib, from October 2012 through October 2014. She was part of a phase three clinical trial, one of the very few available to pediatric brain tumors. It was an oral chemotherapy agent but required frequent blood work and hospital visits. Because the drug is a chemotherapy agent, Sophie was (and still is) immuno-compromised and therefore gets sick a lot because her body can't fight off other infections.

 

Since that time, Sophie has been off therapy with stable disease, as monitored through serial MRIs.

 

Sophie has experienced a number of side effects 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.

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