My 14 Year Old Son Has Brain Cancer -- Without Obamacare, We May Have Been Dropped By Our Insurance Company
This originally appeared on Janine Urbaniak's Open Salon blog. It was written in a response to a call for essays about people's personal experiences with the Affordable Care Act. Have an Obamacare story of your own? Blog about it on Open Salon.
Mason is my 14-year-old son, who is adorable and funny, and happens to have a very stubborn and large brain tumor. We discovered the tumor four years ago, and we have been monitoring and treating it with the help of some of the finest doctors around. Mason has lived a somewhat “normal” life, despite frequent MRIs and even chemotherapy. He did his homework and hung out with friends until the fall of 2010 when his headaches became debilitating. Scans revealed that Mason’s tumor had grown for the first time since we had discovered it. Then days before we were scheduled to meet with the neurosurgeon to discuss a surgery we had tried to avoid, Mason had a massive cerebral hemorrhage.
My boy spent 65 days in the pediatric intensive care unit (PICU) at one of Northern California’s best hospitals; during that time he underwent two brain surgeries, along with operations to insert a tracheostomy and a feeding tube. We stayed with him 24 hours a day, my husband, Alan, and I, his grandparents, and his 16-year-old brother, watching his oxygen levels on a screen, tracking his heart rate in beats per minute. The doctors kept him sedated, but every morning they turned down the propofol (Michael Jackson’s drug of choice) when the neurosurgeons came to do their examination. Three to five doctors circled Mason’s bed, one of them yelled his name into his ear. When he didn’t wake up right away, they apologetically pinched him and yelled louder.
When I was alone with Mason I put a white earbud into his ear and tuned my iPod to a song I knew he liked, “Airplanes” by B.O.B. I said it was time to wake up. “You need to come back, now,” I told him in my firm mommy voice.
During our first three weeks of hospitalization Mason racked up $1.1 million in medical bills. I worried about butting up against the $5 million lifetime limit on Mason’s health insurance policy. We had a good policy with a good company. We always paid our premiums on time and in full. But Mason wasn’t getting out of the hospital at any time soon, and there were months of rehab ahead. My then 13-year-old son would have reached his lifetime limit of health insurance had such limits not been eliminated by Obamacare on April 1, 2011. That date felt like a birthday or anniversary, something to be celebrated, when it finally arrived and we weren’t yet dropped by our health insurance company.
After two months in the PICU, we moved to a sunny room on one of the hospital’s regular floors. Our boy had just regained consciousness, though he still couldn’t talk or move his arms and legs. When the neurosurgeons came for their daily exam, we cheered when Mason managed a half-mast thumbs up. It was a huge victory.
As we celebrated our first day out of the pediatric ICU, Polly, the hospital discharge planner, introduced herself. Her job was to get the necessary approvals from our insurance company and make sure every moment of our stay was covered. This meant that she needed us to be ready to leave at any time. We needed a plan. She talked about Mason’s options for rehabilitation facilities. I soon realized that it would be challenging finding a place for a 6 foot tall 13year-old with a neurological injury. I scoured the Internet on my laptop for options.