Janine Urbaniak

Janine Urbaniak
Location
San Francisco, California,
Birthday
April 24
Bio
I am a San Francisco Bay Area writer, working on a memoir about the challenges and grace brought on by my son’s diagnosis with a brain tumor. My book is the story of a classic type-A woman, who got tangled up in 21st century myth of perfect mothering, only to be confronted with a foe that forced me to find truth and even joy in places I didn’t want to go.

Janine Urbaniak's Links

Salon.com
Editor’s Pick
MARCH 31, 2012 7:15PM

My Son Survived Brain Cancer (and His Health Insurance)

Rate: 28 Flag
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, 13 year-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 run down 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 no where 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.  Anytime she called, I heard the voice of Sergeant 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 US.  Footage of wounded Congresswoman 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 wheel chair.  He was out of bed every morning and dressed in sweatpants 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 two 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 pre-existing 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

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What a heart wrenching story. Without protection a family is not only devasted by the illness but their pain is exacerbated by the potential loss of the insurance benefits they need to save their son. How could any human being take a position against Obamacare and the risk it spreads for the benefits it provides.
This is a beautiful story. I remember the last time I was hospitalized and the mantra running through my head was not "work on getting better soon" but "how the hell am I going to pay for this?" As someone with one of those pesky, expensive "pre-existing conditions," Obamacare has saved me many sleepless nights. After reading your account, I don't know how anyone could deny coverage to someone who needs it. Seems unconscionable to me.
I didn't realize that I was holding my breath through your account of this ordeal until I got to the end. Whew! So happy for your family that there's a happy ending... and I hope the health care bill isn't rescinded, so more families can have the hope of outcomes like this.
God bless you and your son. I know some of what you went through, as my daughter had open heart surgery. The bills are staggering, the fear is insurmountable -- until you write. I will look forward to reading your book.
What a wrenching journey for all of you. I have a 14-year-old son and I was hanging on every word you wrote. If ever there were a reason why everyone deserves health insurance, this is it. I am hoping and praying that those political fools don't repeal Obamacare.
Those who would deny healthcare to any other person while having it themselves are truly scumbag. If a family is fighting to save the life of a parent or child, it shouldn't cost them everything ELSE they've worked formall their lives. If It's "socialist" of me to think so, FINE. Capitalism and healthcare are even worse bedfellows.

I'm so glad to know your son made it through that scary time!
Rated
thanks god he passed it, and i wish him the best life with his parents
Obamacare is the best thing to come out of US politics in a long time- In the UK we are blessed to have a wonderful National Health Service, free medical care, whatever the problem and for however long you need it, it's very easy to take it for granted-Only now our new and pretty dumb right wing government is threatening it too.
Janine thanks for sharing your experience, best of luck to Mason and your whole family :-)
powerful story and prayers for your son and yourself. I can't get the image of the tea party members verbally abusing fellow Americans for daring to show them that "awful things can happen to blameless people" or that they deny their own far from blameless actions. or for that matter, Scalia's smug sneer
I am so glad that the healthcare system worked for you and your son. Wonderful to hear how he is flourishing!
Yeah, Seer, everyone commenting here has spoken like a decent, reasonable, humane person. This post is also up on Salon, and within two or three comments the nasties started. Janine, I suggest you don't read the comments there. (I think some other people whose posts went to Salon have been warned by management about the nasties, so I hope you were too.)
I love the last paragraph. I'm so happy that the ending isn't tragic.
I'm with others that have a pre-existing condition. We don't generally reach my age without *something*, but I'm 10 years away from Medicare benefits. In attempting to obtain insurance, I answered honestly when asked "do you take any medication?", "yes, I take over the counter tablets for heartburn now and then". You are so right. What you say can, and will, be used against you. I was denied care for any and all GI-related symptoms because I said the word 'heartburn'. That means no gastrointestinal studies of any kind would be covered by insurance, including a colonoscopy, which is recommended every few years for someone in my age 'box'. I'm grateful for Obamacare, that's all I can say.

Hearty best wishes and congratulations to your son for all his hard work in pulling back from the edge and moving forward in strength and health!
Profoundly moving, an eloquent case for allowing medical professionals to work unencumbered by the micromanagement of an insurance provider that primarily has a focus on the bottom line. Extraordinary cases require extraordinary measures. Rationing rehab is such a false economy after such heroic medical procedures. But air ambulance must have cost about $22,000. That's a huge burden that some families could not even consider.
There's just not much anyone can add to this; I can't fathom how anyone would not want to protect people in your son's situation.
I pray for Mason, who seems like a real cool kid. I struggle with the value that we are now -- it seems as though we are reevaluating just about every stone, on every road -- and are attempting to find the best balance of things. But we have seen our Congress sit out working for us, at least until election time and, then they are quick at work, beating the path to another 2 or 6 years. Really sad. There are so many things that need work. Obama may not have delivered on all that he has begun, true. But how can we look at ourselves in the mirror, when these trough feeders are there to tell us that we can not afford care for people needing medical help? Too expensive? Have any of these TP 'ers asked their leadership to cut back on their own salary and benefits?
If we can not do the job, at a minimum, of what Europeans have, done more economically, too, then we are awful failures as citizens who allowed this to happen. We owe this to our children -- decent education and medical treatment. Please, let us do what it needed to guarantee these needs. To do less, is unconscionable ...
I pray for Mason, who seems like a real cool kid. I struggle with the value that we are now -- it seems as though we are reevaluating just about every stone, on every road -- and are attempting to find the best balance of things. But we have seen our Congress sit out working for us, at least until election time and, then they are quick at work, beating the path to another 2 or 6 years. Really sad. There are so many things that need work. Obama may not have delivered on all that he has begun, true. But how can we look at ourselves in the mirror, when these trough feeders are there to tell us that we can not afford care for people needing medical help? Too expensive? Have any of these TP 'ers asked their leadership to cut back on their own salary and benefits?
If we can not do the job, at a minimum, of what Europeans have, done more economically, too, then we are awful failures as citizens who allowed this to happen. We owe this to our children -- decent education and medical treatment. Please, let us do what it needed to guarantee these needs. To do less, is unconscionable ...
What a powerful, heart-wrenching story. I love the ending.
Cheering down here :-)
What an intense and thankfully happy ending! I remember visiting my mother in rehab after her brain surgery, what you describe is so accurate, and the family had to exude all the positive emoting we could think of to distract her from that purgatory. So happy to hear your son is doing well--Bless you all!
So happy to see your son recovered and flourishing! What a terrible ordeal. If I got to choose where my tax dollars got spent, it would all go towards helping families like yours get through catastrophic medical emergencies and feeding the hungry in this country. A very powerful story.