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My 14 Year Old Son Has Brain Cancer -- Without Obamacare, We May Have Been Dropped By Our Insurance Company

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.

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A few days later, Polly stopped by to let me know that our insurance company representative had told her that Mason no longer needed hospitalization. Someone (she wasn’t naming names but they were clearly not a part of our medical team) suggested that we send our boy to an “interim” facility in a rundown city 40 miles away from our hospital and about 60 miles away from our home. I looked at Mason, who was enjoying his lunch through a feeding tube in his abdomen and breathing through another tube attached to a ventilator. I reminded her that Mason needed to be where he had access to neurosurgeons for emergencies. She smiled blankly and repeated something about medical necessity and pre-authorization. It was out of her hands.

Mason bought us a reprieve with a high temperature and a series of seizures.  It started when his eyes fluttered from left to right, then his body stiffened. I rang the emergency button and the nurse ran for the appropriate drug. I held Mason’s hand and told him we were riding a big wave. It was pulling us under but we would always emerge. It would pass. I kept my voice low and even.

When my husband arrived later that day, I told him that at least they were not going to kick us out of the hospital now. I was aware my thinking had taken on a new and undesirable twist.

I avoided Polly. If I saw her at the nurse’s station, I ducked back into Mason’s room and locked myself in the bathroom. If she called, I let her leave a message. I spent all of my time caring for my child. Did the nurse wash her hands when she came into the room? Had Mason received his 3 p.m. meds? It’s not that I wanted to spend any extra time in the hospital, it was just that Mason was still so fragile and we had nowhere to go yet.

The insurance company appointed one of their staff nurses to support us through our medical crisis. I believe she was a compassionate and concerned human being, but I never trusted her. I imagined that her notes would go into Mason’s file for the utilization department to examine and find reasons why they should cut back on his care, or lose him from their roles entirely. Any time she called, I heard the voice of Sgt. Joe Friday from Dragnet reminding me, “Anything you say can and will be used against you.”

Several people mentioned that TIRR in Houston was one of the best neuro-rehabilitation facilities in the U.S.  Footage of wounded Rep. Gabrielle Giffords arriving at TIRR was airing on every news channel. I don’t believe in coincidences, especially when thousands of people were praying for us. I called to see if TIRR was a part of our health insurance network. It was. It turned out that TIRR had expertise working with teenagers and there was excellent neurosurgical care available less than a mile away at Texas Children’s Hospital. It seemed like this was meant to be until Polly burst into our hospital room and told us that we couldn’t go. Though the insurance company approved the rehabilitation, they refused to pay for the air ambulance. We dipped into our savings, grateful that we could, and chartered our first airplane; this one came with a crew of paramedics.

The rehab doctors weaned Mason off of pain medication and fitted him for a wheelchair. He was out of bed every morning and dressed in sweat pants and a T-shirt. He began occupational, physical and speech therapy, though in the early days he often nodded off halfway through a session. A neuropsychologist said Mason’s prognosis was good. The healthy brain tissue had not been harmed by the hemorrhage. It was just a matter of getting the wiring back online in Mason’s brain, retraining his muscles and building his strength.

 
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