‘I don’t know if she can take much more’
Jordan Keen is eager to put the pain away
By Sean Dalton , Staff Writer
PUBLISHED: November 13, 2008
Jordan Keen is a remarkable 17-year-old teenage girl in an equally remarkable amount of pain.
On Nov. 14 at 4:30 p.m. a benefit spaghetti dinner will be held at St. Mary Catholic Church to raise money for what is cost-wise a daunting financial obligation for the Keen family. Each plate will bring the Dexter family closer to the $10,000 mark, which is a down-payment on what the family hopes will be the final solution to her ailment.
But it will be worth every penny to give a budding girl a shot at a bright future beyond the constant pain she finds herself in.
It all began when Jordan fell during a skiing accident at Mount Brighton in January 2004. She wrenched her knee, which led to a great deal of pain.
“We went to the emergency room,” said Jordan’s mother, Sue. They told the Keen family it was just a sprain, but after two weeks of doing what the doctor ordered to help the healing process along, the pain was not vacating Jordan’s body.
“We went to doctor after doctor, and they said it was nothing … here’s some crutches,” Sue recalled with a frustrated sigh.
After six weeks on crutches didn’t help either, the Keen’s felt that there had to be something else going on.
Sue and Jordan both recall seeing many more doctors, most of which brushed the Keen’s off ruling that there was “nothing wrong” after taking some x-rays.
It wasn’t until 2005 that a referral from the University of Michigan Hospital sent Jordan to the Cleveland Clinic, where doctors Jack Andrish, an pediatric orthopedic surgeon, and Michael Stanton-Hicks, a pain management specialist, Anesthesiology and researcher, put their finger on the cause that had eluded so many of their medical peers.
“Dr. Andrish sent us to his buddy, Dr. Stanton-Hicks and they finally diagnosed the problem in June 2005,” Sue said.
The diagnosis was Reflex Sympathetic Dystrophy (RSD), which is also called Complex Regional Pain Syndrome (CRPS).
The cause and battle
The National Institute of Neurological Disorders and Stroke describe CRPS as a chronic pain condition, which is chiefly characterized by continuous, intense pain that is disproportional to the injury that causes it. The pain gets worse instead of better, which has bared itself out in Jordan’s case.
CRPS often affects arms, legs, hands and/or feet, often engulfing the entire affected limb with an intense burning pain, accompanied by a change in the tone and temperature of the flesh. Skin sensitivity, sweating and nausea can also occur.
Doctors aren’t really sure what causes the condition, while the Keens are getting a lesson in its affects the hard way. They have heard theories about the sympathetic nervous system, immune system responses and other ideas thrown against the wall. There’s no cure, but there is a way of treating the pain, including various medications, physical therapy and nerve/spinal cord stimulation.
The latter is what the Keens’ are hoping for now, after years of trying everything else and the stimulation method working, prior to Jordan’s relapse.
“She was on crutches for a year and a half, while we tried a bunch of different things for Jordan – drugs, physical therapy, water aerobics and a bunch of other stuff to get her knee back,” Sue said.
A year later Stanton-Hicks tried stimulating the nerves in Jordan’s knee and her spine, “and Jordan tossed her crutches away,” Sue said.
Jordan had missed much of seventh and eighth grade, lost some friends and had to set aside her life on the soccer field and softball diamond, but she was better … for awhile.
“She was great for about a year,” Sue said. During the pain’s all too brief repose, nerve medications were used as follow ups to the doctor’s nerve stimulation.
But a case of food poisoning stemming from a seemingly harmless meal at a local bowling alley sent the Keens’ back into their nightmare.
“I remember Jordan violently vomiting, and then she started complaining that a spot in the upper quadrant of her chest was hurting,” Sue recalled.
More doctor visits happened over the summer and fall of last year. At this point Jordan was suffering terrible pain in her stomach, which persists to this day and limits what she can eat and drink and the amounts.
She was taken to the University of Michigan Hospital last December, where she spent a month for dehydration and the stomach pain. Jordan’s caretakers at the Cleveland Clinic took her in for five weeks of care and kept the pain at bay for five weeks in a controlled environment, according to Sue.
“They put in a temporary stimulator implant into Jordan’s back to get rid of the pain around her stomach,” Sue said.
And it worked for five weeks, until Jordan’s back began suffering spasms, and the stimulator had to be removed prematurely last June.
Again, Jordan had been given a fleeting taste of the normalcy we all take for granted, only to have it pulled out from under her. Arm and leg pain have since joined the rest.
Going it alone
The Keen family’s insurance company is withholding approval of a permanent stimulator, pending convincing evidence that it is “required.”
In the mean time, the Keens have burned through much of their own assets paying deductibles, uncovered fees and other expenses.
Husband and father Doug Keen is a Spirit Airlines pilot and Sue teaches at St. Mary’s in Pinckney – careers that should have promising retirements on the horizon, but no longer, says Sue. “I don’t think that’s around anymore … we just tanked out the 401K that my husband had at his office and another $3,000 retirement account.”
Sue has only been teaching at St. Mary’s for three years, so she hasn’t accrued enough benefits to similarly leverage.
“While we went to doctors all summer – that’s basically what we did all summer – they said they didn’t believe that the stimulator would be helpful,” Sue said.
Weekly hospital visits at $2,000 a visit to keep Jordan’s fluid levels staple and monitor her health, among other costs, including the other stimulators, which cost $30,000 each paid for out of pocket.
The permanent stimulator that the Keens are seeking now costs $75,000 – a daunting sum to a family that has leveraged a beautiful Dexter home and other assets far beyond what they would like.
“Because we already remortgaged our home and sold everything we have we have no money to pay for the permanent one,” Sue said. “The $10,000 is just a down payment. We’ll have to pay for it for the rest of our life.
In the meantime, the Keens are taking action and not merely waiting for a final denial from their insurance company, which has already paid for all sorts of screening tests and doctor visits that ultimately were more distraction than meaningful treatment, or were interim treatments to keep Jordan healthy on a temporary basis while she could have been permanently helped.
“I don’t know if she can take much more,” Sue said, nearly crying. “If only they had done the right thing back in April.”
Jordan sounds a lot like her mother Sue, and despite her predicament is a very cheery sounding girl.
“I definitely try and stay positive and hold onto hope with both hands,” she says. “If I lost that I truly lose everything that I have and it’s pretty much surrendering to this.
“I never want to be a victim.”
She even holds back describing her pain, saying “I don’t feel great.”
Emotionally she is fighting to just “keep breathing” and hold onto that spirit of perseverance that surfaces in some special people when faced with seemingly insurmountable odds.
She couldn’t hold back the anger at the family’s insurance company; however, saying that it was frustrating knowing that the only thing standing between her finally getting on with the normal life of a teenage girl is a $75,000 claim teetering on the precipice of denial by a white collar worker she will never meet or even talk to.
“I feel like there’s so much power that I can have with my real life, it seems like we’re just sitting around waiting for now,” Jordan said. “It’s irritating to feel so close.”
She was also tired when she got on the phone for this interview, admitting that all she had done was “put up a poster for this dinner.”
Jordan loves to write as an outlet, and currently submits articles to magazines and The Detroit News.
She feels like there has been a reason for what she has gone through for the last five years and is ready to embrace her future with open arms.
“I feel like a rocket ready to launch from my wheelchair and finally be tall again,” Jordan said, after reflecting on how different it has been seeing the world from that vantage point, which has her seeing things as a girl of 5 feet 10 inches tall from a shorter perspective than her 10-year-old brother.
Jordan hopes to one day become a doctor of physical medicine and rehabilitative medicine, working her way through medical school as a physical therapist. Positive experiences with the doctors in Cleveland and some of the successful programs she has been through pushed her in that direction.
Whether or not she will go to homecoming this school year or drive a car or return to sports is unclear, but one thing is certain.
“All that I’ve gone through has really inspired me to make a change,” Jordan said.
The Keens are also holding a rally benefit for Jordan on Nov. 23 from 1 to 4:30 p.m. at the Creekside School Cafeteria at 2615 Baker Road. The cost is $10 per person. For more information contact Sue Keen at 1-734-223-2006.