I have spent much of the last 2 months afraid of what the autopsy would reveal; scared that they would tell us that if we had just known sooner we could have saved her, or that they still could not identify what took her from us. I am not sure which I was more afraid of. Because I had been wrapped in the fear of those scenarios, what they have now shared with us was something that I didn't even have on my radar. For the first time in 17 months there is a definitive answer, and despite everything we did, we were never going to be able to save her. High-grade astrocytoma with leptomeningeal dissemination…Cancer, rare and incredibly aggressive cancer, stole our girl from us. 

Charlie and I reviewed the pathology slides with her neurologist and the lead pathologist and they described her disease as gliomatosis cerebri- there were no borders to the cancer, no margin, it had spread out like a blanket over and throughout her brain and spine. They shared that in adults this type of cancer is rare, but even more so in children. Less than 5% of cases are in people under 16, and the prognosis is always terminal with an average survival rate of 14-16 months after onset of symptoms. Her disease was so hard to identify for a number of reasons, not the least of which was the rarity of it; the hospital sees maybe one case every 10 years, but also because it did not present like other cases, or have some of the most common markers for cancer in her tests.

I know that we did everything that we could; that the medical teams did EVERYTHING they could; that every decision made, was made with her best interest in mind, with the information that we had. I know these things, but I would be lying if I didn't say that we would have done some things differently if we would have known. We likely would have spared her months of torture, procedure after procedure, the surgeries, the fear and the pain; but we didnt know and I wont beat myself up over what we didnt know.  

No longer is it an unknown disease, we now know what extinguished her light, and while knowing this information does not provide closure, it does provide some relief, relief that comes with finally having a name for the monster that took her from us. This is how her story ended… but her life will be remembered and will  continue to impact the world for years to come.  We couldn't save her, or spare her from pain, but what the medical teams learned from her will be used to help countless other kids and their families, this will be her legacy.