Cooper’s Medical Expenses

Hi, this is Christine.

I know many of you have supported me in the past in my campaigns for judge. Asking people for help--especially my friends and family--is and was very difficult for me.  But sometimes we need support from each other. This is one of those times for me and my family. 

My son Cooper is very, very sick. 

The quick SUMMARY of Cooper's ordeal is that he has been in severe abdominal pain for over 5 months.  For 3 months now his constant pain level is at 8-to-10 out if 10 every day, 24/7. He has terrible pain"spikes" which overwhelms his body and he passes out--15-20 times a day. 

Now, for the last 3 weeks, he has been experiencing seizures. Cooper is suddenly knocked unconscious He then has a seizure for 30 seconds to 2 minutes, then goes limp/unconscious again. Seizure episodes last 30 minutes to 2 or 3 hours, several times every day now.  We've had to call 911 and take him to the emergency room twice since we got to Mayo a month ago.

Teams of Doctors in  Springfield, St. Louis, and now  @ The Mayo Clinic ran 30+ Endoscopies, Colonoscopies, Biopsies , Upper GIs, Blood and other medical tests.  All those Doctors have been unable to diagnose what's wrong, until just this week. 

Cooper has Non-epileptic seizure episodes, accompanied by severe gastrointestinal abdominal pain.  The reason he is having the terrible pain spikes and seizure-like episodes is because his brain is over-reacting to pain signals. The doctors not fully understand why this happens, but apparently it is not uncommon.

Treatment will be expensive,  difficult,  and lengthy. 

On Monday, September 10th, Cooper is supposed to start a 17-day Pain Rehabilitation Program costs a minimum of $44,000 alone (but the doctors say it is crucial to his recovery).  It includes several types of treatments, all of which are designed to get the brain to rewire itself and stop overreacting to pain signals. 

Our out-of-pocket expenses for Cooper's 5 months of medical care so far has been over $27,000.  For what's next, Humana insurance will pay part...but our portion of the Pain treatment is $6500 for the non-covered portion, plus 20% of the $44,000 (almost $9,000). 

That's over $15,000 for the PRC itself, not including medicine, motel, living expenses, and other medical treatment.

Which is why we're forced to ask for your help....

DETAILS OF COOPER'S ILLNESS & PAIN:

Cooper first got sick during Spring break, and has been out of school and bedridden since March.  It started as a stomach virus, but progressed to severe abdominal pain.  After 6 or 8 weeks he stopped vomiting every day, but  the pain in his stomach and abdomen just kept getting worse. It got so bad that he was at a constant level of 8 or 9 on a scale of 10.  All the time, 24 hours a day. 

For days on end, the pain would come in waves.  He has had no breaks from this pain since it started.  Then, two months ago, Cooper's condition got a lot worse.  He began experiencing "spikes" of pain, which would last for up to 5 minutes.  Eventually, Cooper's body and mind just could not take these horrible spikes, and he would pass out.

These pain waves and spikes go on for hours without letup.  Cooper was unable to sleep when they were at their worst; he went as long as 36-to-48 hours without sleep.  The spikes would make him pass out as many as 20 times a day.

For months, the doctors were not able to figure out what is wrong. After doing blood tests, an endoscopy and CAT scan in Springfield, the doctors told us it was beyond their expertise and sent us to Barnes-Jewish hospital in St. Louis.  

It took Barnes several weeks to work us in; we begin going to St. Louis in May. Cooper underwent somewhere around 25 tests there including 2 more Endoscopies, Biopsies, a Colonoscopy, blood tests, a Gastric emptying test, an Upper GI test, & an MRI of his brain. They tested for ulcers, cancers, infections, bleeding, kidney and liver problems, intestine and colon diseases, neurological disorders, among other things. 

By early July, his main Gastroenterologist thought it was residual pain from an undiagnosed infection,  or neurological pain (possibly from his Traumatic Brain Injury/Concussions), or, most likely, Pancreatitis.

But when the pancreatic tests came back negative, they said they didn't know what was causing Cooper's pain.  They recommended we come to Mayo.

So, 4 weeks ago we came to the Mayo Clinic in Minnesota. The trip was very hard on Cooper, but it could have been a lot harder:  We were extremely fortunate that a dentist friend of my mom's donated  the use of his single-engine plane to fly directly from Lebanon to Rochester. 

Cooper’s Nana & Grandpa (my Mom & step-Dad) generously paid for fuel & the pilot costing $900.  That spared Cooper the agony of a 9-hour drive; Eric drove my car up to meet us.   We have had high hopes the the doctors here at Mayo will finally figure out what's wrong. 

Unfortunately, Cooper's condition has gotten much worse since we have been at Mayo.  He has encountered a new kind of pain, what we call "Knockout events."  This pain strikes somewhere in his body, shoots straight to his abdomen--and knocks him out instantly. 

Then, Cooper has seizures. He will be unconscious for anywhere from 30 seconds to several minutes, then his abdomen starts convulsing.  His arms shake, his head and legs, too.  His eyes flutter and roll back in his head. 

The pain and convulsions/paroxysms force him back to a state of semi-consciousness, but he cant talk or communicate. He often screams out, or cries, sobbing.  He then passes out, his whole body goes completely limp.  Then, the process starts again. 

On Saturday, August 18th, we recorded Cooper passing out 49 times like this.  It is SO hard to describe what he is going through, how hard as parents it is to watch this happen to your own child.  The doctors asked us to video these episodes; you can get an idea of what he's going through if you watch these recordings (SEE VIDEOS BELOW).

One day we were at an appointment with the Endocrinologist (about Cooper's low cortisol levels), when he suddenly experienced a knockout event.  He was talking to the doctor and just keeled over mid-sentence.  They rushed him to the Emergency Room, but discharged him later when he regained consciousness. 

Things came to a head Wednesday night, August 22nd when Cooper's seizures became excessively violent and he was not safe in an outpatient setting at our motel. Eric and I decided that we really had no choice but to take him to the emergency room.

That led to him being placed in the neurological department where they could conduct an EEG video test. They were able to capture a full-blown seizure episode series on camera, while he was hooked up with electrodes to an EEG monitor.

A team of Neurologists were able to review the findings. Finally, we have some real conclusions and a possible diagnosis of his condition, the seizures, knock-out events, pain spikes and his abdominal pain.

The EEG was negative. Thank God, it's not epilepsy or other major mechanical dysfunction of his brain. Instead, the seizures he is having are classified as "non-epileptic seizure episodes"--which is a good thing, the doctors say, very treatable.

The reason he is having the terrible pain spikes and seizure-like episodes is because his brain is over- reacting to pain signals. The doctors not fully understand why this happens, but apparently it is not uncommon.

The key is to make the brain change these "wrong" neurological pathways which have developed over time. Those neurological pathways right now are making his brain react with extreme pain and seizures, even though that response is out-of-kilter with what's actually going on in his body, and whatever triggers the pain response.

COOPER'S MEDICAL EXPENSES:

Treatment will be expensive,  difficult,  and lengthy (the 17-day pain rehabilitation program costs a minimum of $44,000 alone-but they say it is crucial to his recovery). It includes several things, all of which are designed to get the brain to rewire itself and stop overreacting to pain signals. 

The number one Mayo program is called the Pain Rehabilitation Center (PRC), a 17-day intensive outpatient program involving class work, exercise, & "integrated medicine" like hypnosis, meditation, and acupuncture.  They  are supposed to have lots of experience dealing with people who have Non-Epileptic seizures like Cooper. 

So, fingers crossed; we have appointments with the pain clinic, and he starts the PRC on September 10th.

Unfortunately, Cooper's care has been VERY expensive.  We do have insurance, Humana,  Sadly, there's a lot insurance does not cover. 

Our out-of-pocket expenses for Cooper's medical care so far has been over $27,000.

We have seen 11 doctors so far at Mayo, with more tests and doctors to meet with. Our portion of the PRC is $6500 for the non-covered portion, plus 20% of the $44,000 (almost $9,000).  That's over $15,000 for the PRC itself, not including medicine, motel, living expenses, and other medical treatment.

There are deductibles, & co-pays for each Doctor he sees, and test they administer.  Insurance only covers 80% (IF insurance does provide coverage for a given test or treatment).

Unfortunately, many treatments and medicines Cooper has been prescribed by his doctors aren't covered.  One pain medication is almost $1000 every time we fill it.  Lidocaine patches are $10 each, one per day, $300 per month. 

His deductible was $2500.  Just 2 different tests in May or June were 1100-$1400 each.  Each week at Mayo costs $600-$700 for lodging at an extended-stay motel, and another $250 or so for food, parking.

WHY WE ARE ASKING FOR HELP FOR COOPER:

As those of you who know me are aware, again, I HATE asking others for help.  However, for the sake of my son, I have to.

 With these extended weeks of Cooper requiring around-the-clock care, either Eric or I have to be with him 24/7.  And now, with 4 weeks at Mayo and no end in sight, I haven't been able to be in the office or in Court anywhere close to normal.  Eric has been in the office even less, up with Cooper all night most nights. 

So, my law practice has taken a financial hit, as you might expect. With all these unexpected medical expenses, we have used up much of our savings and Cooper's "college fund" for his freshman year @ college (which he's had to postpone, since he couldn't finish high school or graduate).  

Unfortunately, our savings already were depleted from 3 or 4 years ago, when I had my own medical issues:  Blood clots from Anti-cardio lipid syndrome required me to receive a double-bypass of my Mesenteric Arteries in 2014.

So, ANY help you might be able to offer would be SO appreciated. 

I know when we have donated to other such funds for people in the past, I've always thought, "I'm so sorry for them--and so GRATEFUL it's not me or my family!"  I never dreamed we would need to set up  a Go-Fund-Me fund. 

But now that our family and my son is in this situation, I do still feel SO grateful...grateful that I have such a remarkable little boy, Cooper, who despite enduring unimaginable pain, still has total  faith in his doctors & hope for a cure. Cooper 100% believes he will get well and be in college next year. 

And, I am SO grateful that I have friends who pull together to help eachother.  Thank you each and every one, for your love and prayers and positive thoughts.  You have no idea how much it means to us!!