My son’s healthcare battle

My 14-year-old has brain cancer. Without Obamacare, he would have already exceeded his lifetime insurance limit

Topics: Healthcare Reform, Life stories,

My son's healthcare battleSupporters of healthcare reform rally in front of the Supreme Court. AP/Charles Dharapak
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.

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.

The insurance company rationed out Mason’s rehab approvals two weeks at a time. To meet their standards, Mason had to strike the balance between needing ongoing therapy and showing continued progress. If he stopped getting better, the insurance company would stop paying for his therapy, which presents a problem because brain injury patients typically hit plateaus in their recovery. I prayed daily for the faceless insurance company doctors who parsed out Mason’s approvals, wishing them insight and compassion.

A rehab hospital is not the place to visit if you want to pretend that awful things can’t happen to blameless people. In addition to stroke victims of all ages, there was a 30-year-old woman who was rear-ended at high speed on an interstate highway. Her mother brought her 2-month-old baby to visit whenever she could, though the young woman stared ahead her eyes not seeming to focus. There was a naval officer who suffered oxygen deprivation due to an illness he suffered on a ship somewhere in the Pacific. His mother brought me strawberries when she came to visit one Saturday. Then there were two other teenage boys, like Mason, with different varieties of brain tumors. One didn’t survive his stay, though I’m not sure what happened. The other walked out of the rehab to the cheers of his therapists and all the rest of us.

We never saw congresswoman Giffords, though I found the presence of the Secret Service reassuring. Nancy Pelosi toured the gym one afternoon when Mason was having physical therapy. I introduced myself. She smiled and complimented my beautiful boy who was walking in a harness mechanism. I meant to thank her for the healthcare bill, but it was too disorienting speaking to someone I usually watch on CNN. John Boehner didn’t stop by, maybe it was too much, seeing all these folks flaunting their preexisting conditions, exceeding their lifetime insurance limits with such brazen determination to pull themselves upright again.

P.S. Mason is back in school, finishing 8th grade. He is walking, talking and working out at the gym three times a week. He received an A- on his paper on “Of Mice and Men.”

Janine is a San Francisco Bay Area writer. She is currently working on a collection of essays about surviving her son's brain tumor and the odd reality that comes with a diagnosis of childhood cancer.

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