From Zoe’s Mom:
“In February of this year our 7-year-old daughter Zoe was diagnosed with Stage 4 Neuroblastoma. Zoe struggled with challenges her entire life, at 18 months she was diagnosed with sensory processing disorder, by 3 she was diagnosed with intellectual disability, at 4 she was diagnosed with ADHD and right before she turned 5 she was formally diagnosed with Apraxia (which affects both her speech and motor skills). She has been in speech, physical and occupational therapy since she was 2 years old and was a student in the mild to moderate special education program at Cajon Valley School District until she was diagnosed earlier this year.
It took 5 long months to get Zoe diagnosed. Her tumor was massive and hidden behind her organs so it wasn’t visible by X-ray and didn’t show in blood tests which is why it too so long to diagnose. We requested genetic testing be done when Zoe was finally admitted to the hospital and when the results came back it showed Zoe had a genetic malformation. She has a duplication in chromosome 1 called 1q21.1 Duplication Syndrome.
We learned that this syndrome was the cause of all of Zoe's disabilities and were shocked to discover it also predisposed her to neuroblastoma. Genetic cases of neuroblastoma are rare (1-2% per year), however this predisposition one of the rarest. According to the third-party company that performs the genetic testing for several other hospitals across the US, Zoe is the only living person in the US that has this syndrome and neuroblastoma.
To date, Zoe has completed 7 cycles of chemotherapy, had a 10-hour resection surgery, and completed her 1st stem cell transplant on September 28th. She is currently inpatient getting her second stem cell transplant, which we are hoping she will be released before thanksgiving. After stem cell, she will start radiation, which is followed by 5-6 months of immunotherapy. Zoe is estimated to complete treatment in June 2019. She really handles all of her treatments like a champ. We were told older children generally don’t do as well, but we are convinced her strong will and strength have carried her this far. Zoe is spunky, with an amazing sense of humor. She is hard not to fall in love with.
Zoe is the second of four children. Zachariah (Zach) is 10, Zoe is 7, Zayden is 6 and Zandrea is 4. Zach, Zoe and Zayden are our biological children, and we finalized Zandrea's adoption in June of 2016 which made our family complete.”