Monday, April 14, 2014

A Neurological Mystery

I'm back to my post at Dan's bedside as the neurological mystery that is Dan's brain unfolds.  It's been almost two weeks since Dan experienced a neurological incident that left him experiencing stroke-like symptoms alone and unable to move his left side, unable to reach his phone, and unable to call for help on the bathroom floor of our apartment.  Our friend waited downstairs for Dan to ride down in his electric wheelchair for an escort to a dentist appointment up the street.  Thankfully, he notified our building management and got paramedics on the scene after an unusual amount of time and several unsuccessful attempts to reach Dan on his cell.  They called me at work and I was able to make it home and ride in the ambulance with Dan where they rushed to diagnose the symptoms.  The following days consisted of a whirlwind of tests and consults with doctors who were perplexed by the complexity of Dan's case.  The stroke team quickly ruled out a stroke, despite his "stroke like "symptoms (slurred speech and significant left side weakness from head to toe).  MRI's revealed foggy white matter we already knew existed.  A spinal tap revealed no presence of leukemia.  The most possible rule-in was a virus.  A rare neurological virus that is very difficult to treat, very serious, and very life-threatening.

We sat down with a few different doctors who prepared us for the difficult nature of this case.  They informed us of statistics, of case studies, and had the talk we always dreaded.  Our family visited and we spent the weekend enjoying Dan, loving him, laughing with him, praying with him, praying for him, comforting him, comforting each other, and cherishing every minute.  Dan's strength improved a bit as the week progressed and we waited for the results of the spinal fluid analysis.  On Wednesday, doctors informed us that results were NEGATIVE for the virus.  As thrilled as we were to hear the news, we knew that this meant the doctors were back to the drawing board on a diagnosis.  Physicians from various specialties were in and out of the room with conflicting theories, orders for repeats tests, new tests, and repeat analysis of Dan's fluid.  That brings us to today.

Dan continues to present new neurological symptoms which spawns a new test and new specialty of physicians.  Dan's "corner suite" on the hem-onc unit has a revolving door of friends, family, doctors, nurses, techs, PT's, OT's, food service workers, volunteers, Eucharistic ministers, and medical students.  Georgetown is a teaching hospital so there are extra students coming to the door asking to evaluate Dan's weakness at the bedside.  In typical Dan fashion he responds, "they have to learn sometime" and allows them to poke and prod and "ooo and ahhh".  I am on spring break this week and hope to have information and/or a plan by the end of the week to get Dan settled into an acute rehab facility to get to work on improving his weakness.  In the meantime, the medical teams here are "monitoring" and testing new changes that occur.  We are overwhelmed, frustrated, scared, and tired to say the least.

We don't know what is going on with Dan.  We don't know why mysterious things are happening that keep his body from acting normally.  Dan is a case study.  His particular combination of symptoms, his complex medical history, his improvements, his setbacks, are all individual and unique to him.  We miss the days of "oh, X happened to you? We treat this with Y".  Dan has been in bed for almost two weeks now (minus a few hours in a chair each day and some PT/OT) so every day that goes by brings along new risks for infections and complications from being sedentary.  We are well supported and well taken care of here, but we are ready for a diagnosis, for treatment, and rehab.

On Thursday, we celebrated our fourth wedding anniversary.  Of course, we hadn't planned on spending it in the hospital, but we managed to enjoy the day nonetheless.  Our moms were prepared with cupcakes and balloons and family showered us with cards and well wishes.  The nurses established a do not disturb hour so we could eat dinner together in peace.  Dan's rehab team surprised us with surf and turf so we dined on filet and lobster tail with white linens covering the tray table.  Dan and I listened to Sam Cooke and reminisced about the one of a kind adventure we've been on the last four years.  We recalled the ups the downs, the trials, the tests, and all the joys, big and small.

We don't know if we'll get to celebrate our fifth anniversary together.  We don't know what is causing Dan's weakness, slurred speech, low vision, or hearing loss.  We don't know when Dan will get out of the hospital.  We don't know if he has a terminal virus, brain toxicity from chemo, or something completely different.  We don't know if his vision will ever improve or if he'll regain all of his strength.  Since we can't control what we don't know, we are spending our time focusing on the things we do.  I know that I love Dan beyond words.  I know that he loves me, respects me, and values me every single day.  I know that despite what we've "been through", we've shared the happiest four years of our lives together.  I know that had I had a crystal ball on April 10, 2010, I'd still have married him in a heartbeat.  I know that whatever lies ahead, I will continue to stand by Dan to face it together.  We'll face it with courage and we'll conquer it with love.  I know we will find joys in the little moments - in mint chocolate chip ice cream, in a hand squeeze, five uninterrupted minutes at the hospital, or a smile.

We'll look to God, our faith, our family and friends for strength.

We'll hold on to hope that ALL will be well.

fresh air on a spring day


  1. Praying for you always. Thank you for the reminder to always appreciate the little things. Your love for each other shines - Happy Anniversary!

  2. Hannah, I hope that you and Dan know that the entire Betters clan is thinking of y'all and keeping y'all in our prayers.

  3. I'm continuing to pray for you everyday. I love you guys. I feel so privileged to have witnessed that day with you all 4 years ago and to have witnessed your journey these last 4 years. Will keep you in prayer always!

  4. Uncle Dan,

    Alex and I are reading your blog as mommy (Lizzie P) is up country for work. She will be back tomorrow, but Alex channels the innocent wisdom to say we love you and we miss you, and we hope you feel better. These are all unprovoked words from a four year old. You are an inspiration to hundreds, thousands, untold numbers, and we feel your pain and sorrow as you fight what seems like a futile battle. But many wish for the relevance that you have inspired, one can only hope that we can be as relevant in our finite lifespan. We truly do love you Dan, and miss you, and we can only imagine what you are going through. We are sincerely elated that you have had the strength and love of Hanna next to you these past 4+ years, and grateful that we have had the blessing to know you and be inspired by you.

  5. I work in pediatric oncology, and we recently had a patient who was.undergoing treatment for relapsed ALL, with similar neurological symptoms that they could not figure out what the cause was. It turned out to be a severe thiamine deficiency (wernieckes encephalopathy) due to the chemo and malnutrition from his side effects. If they haven't yet checked, have them check for vitamin deficiencies like thiamine, folate, niacin, B12. And vitamin A, D, and E.
    I did not know Dan well in college, but you both are in my thoughts and prayers.
    Rachel (Glennon) Drake, CUA '03