October 17, 2012 – July 4, 2018
Diagnosed: August 1, 2016
Written by Zoey’s family
Zoey Catherine Daggett was born on October 17th 2012. She was diagnosed with DIPG, officially on August 1st, or that is what we say. She fell on July 5th 2016 at a park and within a week she stopped using her entire left arm and leg. After x-rays and an MRI it was determined she had an inoperable tumor, but what type our doctors could not tell. After a biopsy on July 18th she started radiation on August 1st. It was on the first we were told that our doctors preliminary pathology results stated that the tumor was DIPG. Zoey completed radiation on September 12th and after multiple “no’s” or “sorry we’re full or closed’ ‘ we determined that Germany and Immunotherapy was where we were going to go. Zoey would be in Cologne Germany from October 29th until December 14th at the earliest. You can read about her treatment by clicking here.
We spoke with doctors in London and in NYC regarding CED treatment. All trials or slots were closed but once opened they would let us know. Also if they could do compassionate care they would let us know. Insurance would only cover US only treatment, so everything in Germany was coming out of our own pocket. This would run us up to $50,000 USD for the first portion of the treatment. Then it would be $10,000 USD for every month we wanted to return, or if Zoey was able to return. This did not include travel or living expenses. We were fundraising and doing everything we could to save but in the end it wasn’t enough. The same will be for the CED treatment in the UK, it would all be out of pocket.
While Zoey was so happy and her normal 4 year old self, we were waiting for the other shoe to drop so to speak. We know we didn’t have forever, we only have for now and we made the best of every moment with her. She was unaware of her tumor and just went with the flow of meeting new people, new doctors, and feeling so amazingly special. Zoey is so special to us. We can’t thank everyone enough for the thoughts and prayers, the love and support. We never knew we had this and it’s just so overpowering the reach everyone has. Just thank you so much and so much love to everyone.