Hindsight 2020

On April 5th 2020 Kevin’s earthly journey ended.  Six months have passed at the writing of this epilogue and much is still cloudy in my mind, but I will try to put some perspective to Kevin’s “Journey of Hope”. 

2020 started like most of the previous years after Kevin’s accident, scheduling nurses, refilling prescriptions, providing documentation to insurance, but that quickly changed.  2020 will be remembered forever in history as the year of the Covid-19 global pandemic.  Phrases like social distancing, shelter in place, lockdown, flatten the curve, and virtual everything became part of the language in a matter of weeks.  On the afternoon of April 4th we held a virtual, drive-by birthday party for our daughter Jenny.  Kevin sat in his wheelchair on the front porch on a sunny spring afternoon as friends drove by, honked their horns and celebrated Jenny’s 23rd birthday.  Like many other days we were just grateful that Kevin could be part of it all. 

That night his heartrate started to rise, first to over 80 beats per minute, and later over 100.  People often ask how do we know when something is wrong?  Heartrate is one of the first indicators.  Spring was never a good time for Kevin since his allergies would start in March and usually last until Memorial Day.  We tried all the usual remedies, allergy medicine, warm shower, even medical marijuana, but nothing seemed to work.  By midnight we knew something was seriously wrong.  Kevin had been on dialysis for about 6 months and we were worried that he might have an infection.  Nurses were restricted from coming to the house due to the pandemic so we were on our own.  We called 911. 

Kevin arrived at the hospital after midnight on April 5th.  Joan had followed the ambulance to the hospital, but had to stay outside.  Precautionary restrictions would not allow us to be with Kevin in the Emergency Room even though he had recently tested negative for the Covid virus.  It was the first time he had been truly alone since the accident in 2009.   The world was a different place in April of 2020.  Apparently, Kevin aspirated while in ER.  They performed CPR, but Kevin’s time had come.  He was called by our Lord, “Well done My good and faithful servant … Come share in the joy of the Lord”.  Joan was called into ER and I came rushing to the hospital.  We spent about an hour saying goodbye to Kevin and returned home to tell our other children.  In less than eight hours we went from joyfully celebrating a birthday to planning a funeral.

Never did we imagine that Kevin’s funeral would be a small intimate affair with just immediate family.  He touched so many people over the years, and we decided early on to share his life’s journey, so we just assumed, if the time came, we would need to share his death.  God spared us that responsibility.  There was no wake, no funeral mass, and no repast gathering due to the pandemic.  Kevin died on Palm Sunday and was buried on Good Friday, how fitting for someone who carried his cross faithfully for so many years.  As a family we got to spend an hour with him at the funeral home.  It was actually quite beautiful.  Absent funeral traditions and etiquette, we were really able to focus on our family and our beloved Kevin.  From there we went to the cemetery where Father John and Deacon Rich met us and said the final prayers while he was laid to rest.  Several days earlier, we had held a virtual memorial mass with my good friend Father Rafael, Kevin’s godfather.   He was in a chapel in California and we were in our living room in New Jersey, and we celebrated an hour Zoom session with each of us sharing our thoughts, prayers and memories.

For the next several weeks during the lockdown we transitioned from life with Kevin in person, to life with Kevin in spirit.  We created a special room in our house with all of our favorite pictures, statues and memorabilia.  Joan planted a memorial garden in the backyard.  I placed 10 crosses on the wall in my office.  One for each year that Kevin carried his cross here on earth.  We mourned, we prayed, we laughed and cried, reliving some of our most special family memories, always recorded by Joan in either photos, videos or journals.  Like many aspects of Kevin’s Journey, his death was truly an incredible experience and a gift we will always cherish.


 

Extraordinary Measures

People would often say, “you guys did everything possible”, and while it would be impossible to do everything, in retrospect we certainly covered a broad landscape of Traumatic Brain Injury (TBI) research, treatments and therapy.   The years following Kevin’s return home from various institutions can be characterized as an exhaustive and relentless search for consciousness.

There was a movie that came out several years before Kevin’s accident called “Extraordinary Measures”.  It’s about a family that discovers that two of their children have a rare and incurable disease.  The dad quits his job and pulls out all the stops to find a cure and eventually helps bring to market a drug that slows the disease.  We actually were introduced to the real-life family from the movie by a mutual friend and visited them at their home in Princeton, New Jersey.  Like many of our extraordinary “coincidental” experiences, I thought it was a sign.  In fact, I recall joking with Joan on the way home asking her who she would like to play her part in the movie when Kevin wakes up?

Since all of Kevin’s treatments would fill another book, I will try summarize in layman’s terms.  There were five main areas of treatment we pursued:

• Traditional Therapies: Physical, Occupational, Speech etc.
• Drugs and Supplements
• Neuro (Brain) Imaging, Modulation and Stimulation
• Non-Traditional Therapies and Treatments
• Faith and Prayer

Traditional Therapies:

What is consciousness?  Let’s start with the fact that we have five senses; sight, hearing, taste, smell, and touch.  The focus of traditional therapies is to stimulated the senses, hopefully stimulating consciousness.   Through specialized testing, professionals can usually tell what senses are working.   Getting a response to the stimulation is the trick and response level and reliability is a typical measure of consciousness.  For over 10 years we worked with some of the most amazing therapists including physical, occupational, speech, respiratory, nutrition, neurodevelopmental, massage as well as a personal trainer to name a few.   They would come to our home or we would visit their offices, and they not only maintained Kevin’s physical well-being, but stimulated and challenged him in every way imaginable.  My daughters were so influenced by their relentless desire to help Kevin regain consciousness that they both decided to become occupational therapists and currently my daughter Megan is working with children with brain injuries at Children’s Specialized in the New Brunswick, NJ.

Along with the therapy came innovative equipment, including a Standing Wheelchair that allowed Kevin to stand weight bearing for an hour each day, the Motomed bike that assisted him in peddling but also allowed him to peddle on his own which he eventually learned to do. After reading the book “The Diving Bell and the Butterfly” we invested in a product called the Tobii Eye Gaze.  In the book an insightful therapist discovers that her patient who is thought to be in a vegetative state can blink his eye on command.  She developed a technique for him to communicate words one letter at a time.   Over time he was able to write an entire book, The Diving Bell and the Butterfly, using this technique, truly amazing.  The Tobii product allowed Kevin to look at a computer and based on where he was looking the computer would speak that word or image.  Kevin lacked sufficient control of his eyes to make this method reliable, but we tried.

At one point we knocked down the wall between Kevin’s bedroom and the room next to his and made it into a gym.  We put in a Bowflex and a Total Gym and using standard muscle stimulators sometime called TENS devices we were able to get Kevin to work a whole range of muscles even though he could not control them through his brain.  There were matts, weights, bands, pads, hoyer lifts, and various respiratory equipment, as well as visits to conventions and specialized facilities to check what new products were on the market. We tried them all. 
 

Drugs and Supplements:

Not a month would go by in the early years following the accident when loved ones would reach out to tell us about a remarkable case of someone regaining consciousness.  Some of these stories involved drugs or supplements that by chance were given to the patient and resulted in an “awakening”.   The media would typically report something like “Man emerges from a coma after 12 years” which is almost never the case since people in a true coma usually don’t live very long.  Usually the condition is Minimally Conscious or Persistent Vegetative State (a term we really dislike for obvious reasons).  Only one drug was approved for Kevin’s diagnosis called Amantadine and Kevin actually participated in those trials, but with little result.   Prior to FDA approval, drugs are often prescribed as “off-label” which means they have already been approved for a related condition and are generally safe, but have not gone through all the rigorous trials to determine how effective they are for the patient’s condition.  Doctors can prescribe off-label drugs if they believe they are safe for the patient and there are no alternatives.  Zolpidem, better known as Ambien, is often prescribed for people who have trouble sleeping.  Interestingly, Zolpidem causes about 5% of individuals who are minimally conscious to regain consciousness for hours or days at a time which is amazing.  Unfortunately, Kevin was not in the 5% and Zolpidem made him sleepy.   If you saw the Robert Di Nero, Robin Williams movie “Awakenings”, based on a true story, you may recall a drug called Levodopa helped people in a catatonic state regain consciousness.  Yep, Kevin took that drug for a while and many others like it, but unfortunately did not experience any significant improvements in consciousness. 

One of my favorite supplement stores was a place in downtown New York.  At the time, I worked occasionally downtown and would frequent the aisles at the store labeled “Brain Supplements” at lunch time.  With advice from the specialists, we experimented with many of the cognitive and brain enhancement supplements.  I always tried them on me first to make sure they were safe, but again, no significant improvements for Kevin to speak of.
 

Neuro (Brain) Imaging, Modulation and Stimulation:

Neuro imaging, modulation, and stimulation is a quite a mouthful.   Let’s start with imaging.   Soon after bringing Kevin home we started working with a number of brain research institutions searching for the holy grail.  About three years after the accident we were able to get him into a federally funded study that paid for a full week of specialized imaging including fMRI, PET scan and several days of continuous EEG monitoring.   While doing the fMRI, or functional MRI, the researchers asked Kevin a series of questions and after analyzing the fMRI data it was determined that his brain was responding to the questions as a conscious person would.  In other words, he was hearing the questions.   What does this mean?  It means that the researchers believed that Kevin was in the ~20% of the severe traumatic brain injury population that might be mis-diagnosed based on this test, and he was actually conscious, or more specifically locked-in.    He could hear and respond to questions with his brain, but could not translate that response into bodily action.  This condition is consistent with injuries to the brain stem, the area injured in Kevin’s accident.  An analogy might be that traffic was flowing on the highway, the cortex, but the exit ramp was closed, the brain stem.  As parents, we were not sure what to do with this new information.  Rather than focus on how difficult or frustrating being locked-in must be, we made sure we spoke to Kevin frequently and reminded those around him that Kevin could hear them.

Having pictures of the brain was nice, but didn’t really move the needle.  So, we started exploring mostly non-invasive ways to change Kevin’s brain waves hoping that might eventually lead to consciousness.  There are five major brainwaves named after letters of the Greek alphabet, Alpha, Beta, Delta, Gamma, and Theta.  Each brain wave is associated with different states of consciousness such as alertness, calmness, problem solving, meditation, or sleep.   Our goal was to promote the brain waves most associated with consciousness.  We frequently used a technique called neurofeedback.  We would play a movie or one of his favorite songs while we monitored his brain waves.   If Kevin maintained the desired brain wave frequency the movie or song would continue to play.  If his brain waves were out of range the entertainment would stop.  Through trial and error, he was able to modify his brain waves in the desired direction.  Over time we discovered many commercially available devices that targeted brain waves to achieve various results like Mind Alive, the Muse brain sensing headband, and brain computer interface (BCI) devices such as Emotiv and Neurosky.  Kevin’s brother Dylan actually did an independent research project at Villanova University that used a commercially available BCI device to try to create a communication tool for Kevin.  Unfortunately, the technology was not yet at a level for us to get the desired outcomes, but we tried. 

There were other more invasive stimulation techniques such as median nerve stimulation, vagus nerve stimulation, deep brain stimulation (DBS), Transcranial Direct Current Stimulation (tDCS) and Transcranial Magnetic Stimulation (TMS).  Internet searches showed each to have some success and if surgery was not required, we explored these treatments as well.
 

Non-Traditional Therapies and Treatments: 

One of my favorite passages from the old testament is the story of Naaman. According to the Bible, Naaman was a commander of an army in Syria. God had blessed him with several important military victories, but he was a leper.  His wife’s servant said she knew someone that could cure Naaman.  She sends him to the profit Elisha and he gives Naaman a very simple solution and though Naaman is skeptical about bathing in the Jordan River seven times he does it anyway, a by-product of faith, and is cured.  Like Naaman, we too pursued many, many non-traditional therapies and treatments for Kevin based on faith.  

We tried infra-red laser therapies, specialized acupuncture, neuro-developmental chiropractors, energy healing, and many others.  Two specific non-traditional therapies we aggressively pursued were hyperbaric oxygen therapy and stem cell therapy.  Hyperbaric oxygen therapy or HBOT is medically approved for facilitating wound healing, such as severe burns, but has also been shown to help with healing other injuries.  We actually bought a portable HBOT chamber and set it up in our bedroom.   While the patient is comfortably resting in the chamber the atmospheric pressure is increased to the desired level and a high concentration of oxygen is pumped into the chamber.  We had to be careful not to increase or reduce the pressure to quickly while Kevin was in the chamber since that could damage his ear drums, similar to the practice of slowly ascending or descending when scuba diving.  I tried it and it was a very calming experience.   Professional athletes had begun to use HBOT to recover more quickly from various injuries.  We did this for months at a time with some improvements to Kevin’s alertness and vital signs, but without a return to consciousness. 

Could stem cells be the answer?  I started to come to the conclusion that the world was just not yet smart enough to figure out how to re-start the brain.  The beauty of stem cells is that they trigger the bodies natural abilities for healing and re-growth.  There are basically three kinds of stem cells being explored by research today.  The most basic form of stem cell therapy are cells that are extracted from the patients own body, typically from either bone marrow or fatty cell tissue.  There are a number of late stage trials being conducted regarding the safety and effectiveness of injecting the body’s own stem cells into an injury site.  Most researchers would support the notion that the younger the patient the more effective the body’s own stem cells, since stem cells seem to lose potency with aging.   Though not typically covered by insurance, there are doctors that will extract the bodies own stem cells and Kevin had this procedure done just before going on dialysis in November of 2019.  While we saw some improvement to his respiratory system, but there was no noticeable improvement in consciousness.

I’ve worked closely with researchers at Rutgers University regarding umbilical cord stem cells.   The umbilical cord contains very potent blood and stem cells from the baby and for years the umbilical cord was discarded after birth.  These cells have been shown to regrow spinal cord, which is very similar to brain cells and we had hoped to get Kevin into a specialized trial called a compassionate use trial once the phase 3 trials were complete in the US.  Unfortunately, the trials in the US were put on hold because of the Coronavirus pandemic.  I still follow this research as part of my role as a board member at Conquer Paralysis Now, a non-profit with the mission of finding a cure for Paralysis for individuals with spinal cord injuries.

The remaining category of stem cell research, associated with the most controversy, is embryonic stem cells.  While they are believed to be the most potent, they are also the most difficult to control.  While they might be effective in helping to re-grow an injured organ, some researchers believe that they might also trigger cancer cells to grow.  For both ethical and scientific reasons, we did not pursue embryonic stem cell therapies for Kevin.
 

Faith and Prayer:

Being caregivers for over a decade for your child whom you love more than life itself can be undoubtedly the most physically, emotionally and spiritually draining experience imaginable, but in many ways also the most rewarding.   Whenever we met other parents in a similar situation it was like an exclusive club, which no one really wanted to be part of.  Each of us saying to the other without words. “Yes, we know what you’re going through”, usually followed by a big hug.  I don’t think we could have made it through a single day without the belief that God loves us.  Never for a moment did we believe that He was somehow punishing us or Kevin by our circumstances, that’s not what loving parents do.  Ultimately our trust was in God, and only God could get us through this.  With God as our anchor, prayer became our treatment of choice.  We prayed at the hospital immediately after the accident.  We held small group prayer services with friends and family.  We prayed for Kevin with parishioners at church healing services.   We prayed the rosary each year at Kevin’s annual “Walk the Walk with Kevin” at his high school, Christian Brothers Academy.  People would call us and request coming to our house to pray with Kevin in his room.  We prayed with Kevin early in the morning and late at night when we put him to bed.  It was not just friends and family that prayed for Kevin, but literally people all over the world.  We received messages from groups in Europe, India, Africa and South America telling us that they were praying for Kevin. And not just Catholics or Christians, but people from all different faiths were praying. Maybe that was Kevin's legacy. He got people to pray.

In retrospect, while everyone’s prayers helped Kevin and our family through some of the most difficult times, maybe those prayers were just as important to the spiritual and emotional well-being of those offering them.  It was a blessing to know that people all over the world took time out of their busy day to speak with our Creator and request from the bottom of their hearts that He heal our beloved son, a humbling experience.

The following quote is in the first edition of Kevin’s Journey of Hope, but it’s worth repeating to summarize why Faith and Prayer were critical treatments for healing body, mind and soul.  One of the blessed that we encountered on the journey is Blessed Pier Giorgio Frassati. He died in his early twenties, and like Kevin had wisdom far beyond his years.  They both studied engineering and they both loved the outdoors.  I think he best summarized what we learned on Kevin's journey:
 
"It (life) is a difficult battle, but we must strive to win it and to rediscover our small road to Damascus in order to walk toward the destination to which we all must arrive.  What is clear is that faith is the only anchor of salvation and we must hold tightly to it; without it, what would our lives be?  Nothing, or rather, wasted, because in life there is always suffering, and suffering without faith is unbearable.  But suffering that is nourished by the flame of faith becomes something beautiful, because it tempers the soul to deal with suffering."