April and Tommy of Oklahoma are parents to five children. In the summer of 2015, they wrote to us about their youngest son, Owen, who was battling a form of brain cancer called PNET. Owen was diagnosed in April 2015 at just 18 months old.
Owen passed away just four months later, in August 2015.
On March 31, 2015, Owen threw up shortly after going to bed, and several times throughout that night.
Thinking we were dealing with a stomach bug of some sort, we just did the usual crackers and ginger ale. After several days of the same pattern (fine during the day, sick late at night and especially early in the morning) we took Owen to the doctor. At the appointment we were given the typical anti nausea medication and sent away. The vomiting continued for two weeks, in spite of numerous trips to the clinic and ER, and all the home remedies you can think of. Not to mention that Owen has two brothers and two sisters - none of which had become the slightest bit sick from this mysterious bug.
On the 14th of April, Tommy and I returned to the hospital demanding further testing and answers.
Finally, an abdominal scan was completed, which ultimately showed the presence of tumor growth throughout his abdomen and spine. This was not the point of a full diagnosis: we were not even told the results of the scan until days later. But this 5 minute x-ray was the beginning of Owen's journey with cancer, or at least the conscious journey.
Owen had become so dehydrated he could barely hold his head up from two weeks of vomiting and misdiagnosis, so we were transported to the Children's hospital in Oklahoma City. The following morning Owen had a seizure which prompted a CT and resulted in the discovery of what looked to be a large mass in his brain.
An MRI was scheduled for that afternoon, and on the way down Owen had a second seizure in the elevator rendering him unresponsive just over two minutes. Almost immediately an EVD was placed, and we spent the next few days in ICU.
Fast forward a few months, and we now know Owen was vomiting because tumors were blocking the flow of fluid between the brain and spine, causing a build-up of pressure high enough to cause a life-threatening herniation of his brain stem.
We know the type of tumor is PNET.
We know it's far spread.
We know the odds are very much against us.*
We know a lot, and we know nothing.
We know nothing that can stop this. We know nothing to blame for why this is happening in the first place.
And we haven't begun to know how we are going to guide our other children through this process while we are very much lost ourselves.