Our daughter, Emery Ilene, had just celebrated her 2nd birthday when we were blindsided with every parents worst nightmare.
Not just cancer but stage 4 high risk Neuroblastoma.
Most people do not know that Neuroblastoma is the most common solid tumor in children under the age of five. And that in most cases is has already metastasized by the time it is diagnosed. We definitely didn’t. First off, it is not a brain cancer even though it can spread to the brain. Neuroblastoma is where cancer cells form in nerve tissue, like the adrenal gland, spinal chord and neck.
At diagnosis, Emery had tumors in her adrenal gland, spinal chord and skull. It had also already spread everywhere. Her bones and bone marrow were just covered in disease.
It is still considered a “rare” cancer and that is partly why the funding for it just isn’t there. But it definitely doesn’t seem as rare as many would think.
Emery fought harder than any two year old should ever have to with more bravery and courage than most adults. Her smile lit up the room and all who knew her were inspired by her ability to handle everything that was thrown at her and still smile.
This page is to remember my beautiful little girl who passed away at the age of only three. She fought for exactly one year and about 3 hours and 45 minutes from the day she was diagnosed. It was not enough time.
The treatments that were given to her were too harsh and her cancer was just so aggressive that it destroyed her little body. We have to fight for better treatments for our children. We have to fight for more funding for research. We have to spread more awareness. Otherwise, our story will certainly not be the last.
Children should have the best and the safest treatments but that is sadly not even close to reality.
Neuroblastoma is definitely not the only childhood cancer that is severely underfunded, all of them are.
Neuroblastoma is just the cancer that I sadly am most passionate about providing more funding and awareness for since it stole my Emery from me.
Emery was a normal child. I never smoked, drank or did any sort of drugs during her pregnancy. She was breastfed until almost a year and a half and she had a good appetite that was not full of sugars. The sickest she had ever been was a cold until her cancer diagnosis. She was so very loved.
There was no reason for her to have cancer.
And because of the lack of funding and research doctors aren’t even close to being able to tell me what did. We didn’t cause it and Emery certainly didn’t cause it.
Don’t wait to make a difference. It can happen to any child at any time. It does not discriminate. It is relentless and smart and heart breaking. This page will be dedicated to fighting for more funding, spreading awareness and remembering my Emery for the amazing and spirited little girl that she was.