Zoe is seven years old and battling Stage 4N Neuroblastoma. The first thing is how her cancer presented. At diagnosis Zoe only had soft tissue disease. It did not metastasize until we were in patient getting diagnosed and when it did it spread to her neck.
So all she had was the original tumors in her abdomen and a few local lymph nodes. Zoe has never had disease in her bones or bone marrow. Apparently this is rare and referred to stage 4N. The second is that Zoe is part of the 1-2% of genetic neuroblastoma cases.
Zoe is a “special ed child” she’s been seeing a geneticist since she was 18 months old and in the mild to moderate special ed program in school. Zoe has been diagnosed with severe apraxia, adhd, intellectual disability, some facial and ear dysmorphia, and a problem with the fusion of her skull. At that time they thought her disabilities were not related to a genetic malformation.
When Zoe started getting sick and sicker I was researching and actually reached out to the geneticist right before she was diagnosed with some thoughts on possible syndromes Zoe may have. The geneticist thought I was on the something so he ordered microarray test. The test was performed the day that Zoe was admitted to the hospital. The results came back with a duplication in chromosome one. It’s called 1q21.1 duplication syndrome. This syndrome is the cause of all of her disabilities and predisposed her to Neuroblastoma.
My other biological children have a 50% chance of inheriting this from me (I discovered I am the carrier although I don’t have any symptoms) so the other children are going through testing as well. Zoe has been going through cancer treatments for 9 months including chemo, 2 stem cell transplants, radiation, and is currently going through immune therapy. Zoe has been a rock star while going through her cancer treatments and is showing her cancer who is boss. She just officially was declared NED.
Zoe is known as being quite the character and always has the best smile. She is a girly girl that loves unicorns, bath bombs, shopping at Justice, Jojo Siwa and doing her nails and makeup.
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emery inspired a rebellion
She was small but she was fierce.
Emery was only 2 years old when she was diagnosed with cancer, not just cancer but Stage 4 Neuroblastoma with the odds stacked against her from day one.
She fought more bravely than any child ever should, but the available treatments failed her.
Now we fight back. This foundation was created to save and support kids with Neuroblastoma - in memory of Emery.
We must change this.