Beat Brain Cancer 5k
June 9, 2018 @ 8:55 am - 11:00 am
| $18This 5k run/1 mile walk is an event that welcomes all ages and experience levels. We encourage wheelchair participants, strollers etc. to join us for this fun event. Participants for the walk are encouraged to bring their whole family, and children under 5 are free! The race begins at East Rochester High School and runs along the roads of the Village of East Rochester and ends back at the High School for awards and refreshments. The proceeds from this event will be donated to a family who is fighting brain cancer.
About the beneficiary
On July 12th 2016 Zoey was diagnosed with DIPG. DIPG is a terminal brain cancer impacting children typically ages 3-12 located in their pons, brain stem. The average life span after diagnosis is 9-12 months until the child passes away. Zoey received a tumor biopsy on July 18th 2016 followed by 30 days of radiation starting August 1st 2016. On October 28th 2016 Zoey and her parents flew to Germany for 7 weeks for an Immunotherapy program. During their stay they also had two consults with doctors in the UK for different treatment plans.
After returning home on December 13th Zoey returned to Germany three more times in January February and March for three days total for treatment. In April 2017 Zoey’s tumor started to grow again and her team of doctors started her on oral panobinostat. Zoey was on this for a total of two months when it was determined her tumor had grown significantly and without drastic measures she would not live more than three weeks. On July 6th 2017 Zoey started 12 days of radiation with infusions of Avastin and Nivolubum, two different chemotherapy drugs. She continued her infusions and regained her strength, stamina and spunk. During Thanksgiving 2017 her parents noticed symptoms of progression in Zoey’s body functions.
On December 12th 2017 Zoey had an emergency trip to see her doctors and was scheduled for an emergency MRI. It was determined her tumor had grown substantially and had grew outside of her pons. Her parents were told they can choose to radiate again or there was a large possibility that Zoey would not live to see Christmas. On December 19th Zoey started 10 days of radiation and by the time school started on January 2nd she was back to her normal self.
Zoey started Mekinist and Tanfilar, two new chemotherapy drugs, the 2nd week of January while still continuing her Avastin infusions. Zoey’s latest MRI in February 20th 2018 show amazing results of shrinkage and her tumor being almost the same if not smaller than at diagnosis. This has been unheard of. Zoey will continue her current oral chemo treatment until approval for a new drug ONC201 is complete. Then she will start that, hopefully by St Patrick’s Day.
Zoey’s parents have spent approximately $125,000 in treatment, travel, and expenses while caring for Zoey since July 2016. Her life is that of a typical 5-year-old but filled with some awesome doctors, amazing experiences and so much love.