After reading and listening to countless stories, ours isn't very different. It's all shocking to the DIPG newcomer, but a classic presentation as these things go. It all happened so quickly and it is hard to recount all the details even though it was only a few weeks ago as I write this.
January 15, 2016
My daughter Taylor and I picked Parker up from school at 5pm. The aftercare staff notified me that Parker was sleeping on the floor of the room next door. I recall thinking that was odd, but it was also his first day of soccer, so the little guy was probably just worn out. He woke up and was groggy and stumbled around on his way to the car.
At home his fever kicked into high gear. I did what most dads would do in response: gave him some medication to make him comfortable. He fell asleep on the couch, and I carried him to bed.
The next day he began vomiting, and he couldn't open his right eye. Believe it or not, my wife and I were not too concerned at this point. Parker has a history of tonsil inflammation, and he had recently gone through pink eye. In our minds, we were probably dealing with some sort of recurrence. It wasn't until my daughter started tugging at her ear that Jennifer decided to just make appointments for them both that afternoon - get everyone checked out, and get ahead of the curve.
The pediatrician didn't take long after seeing Parker to become concerned. That droopy right eye was having difficulty following the doctor's finger around the room. She told us he needed to go to the emergency room for a CT scan; she was concerned of an abscess behind his eye, which is a potentially life threatening situation. She called 9-1-1 and Parker was transported via ambulance.
The ER resident who examined Parker wasn't convinced anything was wrong with him. We pleaded with him that his pediatrician is the one that made us come (in a freaking ambulance!). He went off and got his boss who had some different ideas. Yes, the eye isn't tracking well. Is it possible he got into some alcohol? Medication? Sleeping well? After a short series of reasonable questions, he ordered a CT, and that's where this story grows cold fast.
The CT clearly showed some sort of "mass" in his brain, he said. Then he followed up that he was arranging for transport to Rady Children's Hospital. This is all happening very quickly. Lots of doctors and nurses are now in the room taking vitals, recording information, asking questions. We are scared.
I'll be honest, the next 12-24 hours is a blur. Parker was in the ICU, we were talking to neurosurgeons, neurologists, nurses, and so many others. Looking back now we know how sick he was that first night. But at the time, we were sort of beside ourselves. What are we doing here?
On January 17, 2016 at 4pm, two days since he had come home from school with a fever, we sat down in a room with a doctor who proceeded to describe the worst possible scenario we could imagine: our son has an inoperable, untreatable disease called Diffuse Intrinsic Pontine Glioma (DIPG), aka, brain cancer.
[ Journal ]