Le Tour de Riley

In the last few weeks we have finally had splashes rather than drops in Riley’s recovery bucket! Although he continues to suffer from considerable pain and remains bedridden, he is also experiencing some significant progress!

As most of you know, Riley has always been an enthusiastic sports fan. His room is adorned with both hockey and golf memorabilia, and his treasured K2 Kung Fuja skis and golf bag occupy prominent positions in his bedroom. Prior to Lyme, Riley was active in the summer mountain biking, hiking and golfing and his winters were spent skiing and playing hockey. He even had the opportunity to play hockey in Sweden a few summers ago!

Unfortunately for almost a year now, Riley has been only able to drape himself over Christine’s shoulders to shuffle to the bathroom once a day for an assisted shower, and his excruciating pain and extreme neurological symptoms have robbed him of the ability to read, listen to music, watch TV, or engage in conversation.

Bedridden, he has spent months dissociated from his environment and body, barely aware of his surroundings. On rare occasions when the pain was reduced by a fraction, he would creatively meditate on past family vacations, friendships, sporting events, and other favorite memories. For the most part, however, he was far too ill to do anything more than pray and endure…minute by minute…day after agonizing day…with only fitful sleep to ease his burden. All of this we witnessed with a profound sense of impotence and horror.

Hope, however, has prevailed, and we continue to marvel at Riley’s unfailing tenacity in the face of profound suffering. His optimism and deeply-rooted faith, coupled with the expertise and compassion of his medical team, have produced the splashes we are rejoicing in this week. As I type this update, Riley is propped up in bed beside me transfixed by the pre-recorded July 14-17^th British Open golf tournament in Sandwich, Kent England! My role is to operate the remote (he does not have the finger strength to operate it) and to scroll past the frenetic commercials that are still too loud and startling for him. I have to pinch myself to actually believe he is watching golf again and doing so with the sound ON! At times I listen to the applause and turn to see a smile etch itself upon his face. His beautiful, wide-open, hazel eyes, track the movements on the screen and I well-up with indescribable gratitude! Taped to the top of the TV screen we have written the words: “Riley’s coming back!”

On the wall in front of Riley’s bed, there is a triumphant photo of cyclist Jelle Vanendert, both arms raised in victory, gaping smile, after a surprise win on a mountainous stage in Le Tour de France. 

 After watching TV for the first time in almost a year, Riley pointed at the photo, grinned, and whispered emphatically: “I feel just like that guy!” I thought to myself: “Riley you are that guy…except you continue to bravely climb mountains much steeper, with weather more severe, on a broken bike, with a frail body, on a course with no clear end in site, and no attractive women to kiss your cheeks as you mount the podium.

For the past few weeks, Riley and I have had a daily ritual. We huddle in bed to review the results from the day’s staging of the Tour de France, and we pour over the details of the next days cycling route and speculate on tactical strategies and likely stage winners. Today the Tour ended and we were both delighted to discover that one of our favorite cyclists, Australian, Cadel Evans had ridden triumphantly into Paris wearing the ‘maillot jaune’ (Tour winner’s yellow jersey). 

The “Tour de Riley” unfortunately, is far from being over, but we have seen some recent stage victories:  he is watching pre-recorded golf (other TV too startling still),  engaging in longer whispered conversations, smiling and occasionally even laughing without becoming too overwhelmed, asking to be read to and wanting to listen to soothing music, talking about the future (“maybe I’ll be a neurologist”), and most importantly…enjoying an enhanced quality of life! Physically he has slowly begun moving his hands more, re-positioning himself in bed, walking with assistance twice per day, and pushing himself to aid Christine more as she lifts him from the bed. The curtains in his room remain open a bit, and he can look out at the dancing trees without feeling electrocuted. Sunlight streams into the room and once again sparkles behind his eyes…he is coming back!

We remain, as always, extremely grateful and humbled by the continued generous support (financial and otherwise) of friends and family, and the care from our LLMDs (Lyme literate MDs). Each one of you, too many to name, remain a steadfast part of Riley’s team, and it is with you in his corner that he continues to bravely mount his bike and pedal up the next series of arduous climbs and weave his way around blind and slippery corners on the treacherous descents. Although there is still no finish line in sight, and his physical symptoms continue to plague him in unimaginable ways, at least now Riley is able to lift his head on occasion, smile and take in moments of renewed beauty and joy.

With affection,
Terry

An added note from Christine....

Two days after Terry wrote the above paragraphs for the blog, Riley asked Evan if he could pick some instrumental songs from his iTunes playlist that were not too crazy. He was hoping to try listening to some music. That night Evan went in with the iPod to see if Riley could handle listening to a few minutes of the music he had chosen.

Later I went in to see how it was going and found 2 boys cuddled in the bed, sharing one set of headphones! Evan was gently patting the corners of Riley’s eyes with a kleenex…tears of joy were streaming down his cheeks.

Here is what Riley had to say:

“It’s unbelievable. That’s the most beautiful gift I’ve ever been given. It’s like coming out of solitary confinement and into the light.  I haven’t listened to music in over a year. For so long even just thinking about the sound of waves on the beach was too startling to my brain and now I just listened to music again and its OK.  It’s indescribable. It really is like being reborn.”

Since then, Evan has also been downloading audio books for Riley to listen to and Riley has enjoyed hours of stories on his iPod.  It is amazing!!!

When relaying  Riley's progress to Dr. H in California this week, I asked him if he was happy to hear this good news about Riley...he replied, "No- I'm not happy.  I am very pleased, but I won't be happy until Riley is fully better and back to living life as he should be." Thank you for a  doctor who is in for the long haul and knows we still have a long way to go.

In the midst of all this wonderful progress, Riley can be watching golf one minute and the next minute overcome with heat attacks, tremors, gut wrenching pain or a piercing headache....it is a rollercoaster ride for sure, with many months of treatment still ahead....but our Riley is coming back- bit by bit!! 

 

All this is happening while Alberta health experts have publically announced that ticks carrying Lyme bacteria have recently been confirmed in Alberta.  Although they say to be on the alert for ticks, they are also quick to say that there is only one documented case of Lyme disease since 2008 and only 20 cases since 1989!

Funny- we personally know at least 10 other patients/ families right now in the same situation as us....but because their tests were conducted in the USA- they will never be part of  Alberta Lyme disease statistics.

When will they stop tap-dancing on the deck of the Titanic and admit that our testing procedures are grossly outdated and wildly inaccurate. Lyme afflicted individuals like Riley get misdiagnosed (or go undiagnosed), suffer unnecessarily, and are forced to cross the border for adequate testing and very costly out of pocket treatment! 

Many of you have asked us if we plan to make our experience more public at some point and use Riley’s tragic story as a catalyst for discussion/change within the medical system.  Up until now, we have been reluctant to do this for many reasons….one being our need to focus our full attention and limited energies on Riley’s care and healing.

However, as the news of Lyme infected ticks in Alberta has made headlines the past couple of weeks and so much misinformation is circulating- we decided to respond to the requests from media to be interviewed.  If we can be a small part of the necessary change that needs to come, or if our story will help even one person avoid the lack of diagnosis that has been so disastrous for Riley- then it is worth it to speak out.

We have been told that the Calgary Herald is running a story this weekend and will highlight Riley’s journey with Lyme disease.

For those of you not in the Calgary area…. http://www.calgaryherald.com

Warmly,

Christine
 

Homecoming

Home at last!

June 2nd, 2011

I wait alone with anxious anticipation at the Springbank Airport just West of Calgary. Billowy,"sumo-like" storm clouds stand as sentries against the menacing sky. A relentless wind tears across the small airstrip and confines me to the vehicle. After what feels like an eternity, I strain with relief to hear the drone of the small jet flown by our skillful and generous friend Tim. He is returning after flying down to San Francisco to pick up Christine and Riley. Due to a six month USA visitor restriction, they are required to return to Canada for a short time before applying for an extension to stay there longer. I drive right up to the plane as Riley is carefully lifted out and into a      
                                       wheelchair...reunited at last!


Since arriving home, it has taken Riley a couple of weeks to adjust to being back in our Calgary bungalow, which is considerably smaller and noisier than the California"Villa Katz". Adapting to new surroundings, a tub shower, and other noises has taken considerable energy due to his neurological sensitivities. Fortunately we have supportive neighbors who have even been willing to coordinate lawn mowing in order to reduce Riley's startle! Although mentally more alert than when he left, Riley continues to battle excruciating pain and weakness. Returning to Calgary has been bittersweet, as he is grateful to be home, but also aware that his friends are graduating and moving on with the next stage of their lives, while he remains so ill.
Christine, although relieved to be back near family and friends, is worn out and struggling with the added burden of her father recently being admitted to the hospital.  For Evan and I, despite the silencing of our home/now hospital, it is a gift to be reunited as a family, and to be able to tiptoe in and lay with Riley or engage him in short whispers of conversation. His wisdom and spiritual strength continues to inspire us.

June 19, 2011

On Father's Day, I curled up with Riley, and he turned towards me, opening his eyes and gently placing his hands over mine. He smiled slightly and wished me a happy Father's Day. He told me he loved me "so...much" and requested that I read the card he had painstakingly dictated to Christine for 45 minutes the day before. Tearfully, I read his loving and poignant words: 

 "Dear Dad- Although my body aches to delight in the gift of conversation and interaction again, I have come to realize that sometimes it is only in silence that life's deepest messages are spoken. I cannot begin to tell you how much it has meant to me to be close to you once again. Please know that the love we share will never need words. When I feel your heartbeat through your palm onto my shoulder, I feel as though I can see right into your soul. And with that soul is a bond that began the moment I took my first breath and has only grown stronger as the years have gone by. I do not have much to give you this Father's Day- but my deepest love...and I promise that one day this love will once again take us to the top of mountain peaks, through mountain trails on our bikes, and throwing Frisbees together in the forest."


I was rendered speechless after reading these words and reminded once again that Riley is still in there...alive and well despite the decay and frailty of his Lyme-riddled body. This is what all the prayer, kind thoughts, generous donations, doctors' visits, and around the clock nursing by Christine is for...to restore Riley's body so that it may connect with his sharp mind and compassionate spirit. It may be a long and arduous journey but he is so worth it!



Riley and Evan - Mountain Peaks in the Dolomites, Italy

Caring for Riley has meant stepping out of much of the life we have known as a family and watching as it rushes by. A form of erosion has taken place as the superfluous is shed in order to reveal something infinitely more precious.This time of grief and contemplation, although painful and disheartening, has also helped us distill what truly matters in life...health, faith, family and friends.

Peace to you all, 

       Terry




Another bench...4 hiking kids heading to Mt. Robson

 

An update from nurse-mom Christine:

May 19, 2011
Sitting in the waiting room at Dr H's office....I look around and see a room full of patients, all of them suffering from Lyme disease.  Some are with their children, others with spouses, and some sit alone.  Every time we are there, people strike up conversation and want to hear each other's Lyme stories.
How long have you been sick? 
When did you start treatment?
And of course…Are you getting better?
This is always a curious but difficult few minutes for Riley and me.  He is wheelchair bound and can't stand the noise and conversation so keeps his eyes closed and tries to stay calm while we wait for our appt.
I am drawn to the conversation of others and they are drawn to us...wondering how long Riley has been sick and horrified to see a teenager so ill and in a wheelchair.

Over and over again I hear people say..."Dr. H has brought me back to health" or, "Last year at this time I couldn't drive, go out of the house or even function at all and now I am gradually getting my life back".
One man in the waiting room saw Riley's earplugs and said, "Oh, he is sensitive to noises.  I remember that symptom so well.  I lived in the dark, with earplugs in for months....but thankfully that sensitivity is almost gone. I can actually talk to my family now without feeling totally overwhelmed."

I listen intently for any glimmers of hope in the words shared by these other Lyme patients.  I hold onto the fact that they have come from all over the USA and Western Canada- seeking care from one of the most respected Lyme literate doctors in the USA.  Some are just beginning on this journey and others have been undergoing treatment for months and in some cases, several years.  They all describe the ups and downs of treatment and the difficulty of eradicating these stealth bugs. I always come away from the office feeling a sense of "not being alone" on this journey.  Others have gone through this hideous experience and are describing a gradual return to health and life. However, in our 4 1/2 months of coming to appointments here, I have only met one other patient who is experiencing the disease as severely as Riley.  Dr. H. did describe Riley in January, as his sickest patient at that time (not ever, but right now) UGH...not the medal he was looking for.

On this particular day in May, I am alone at the appointment, having left Riley at home with a nurse while I have a quick check-in with the Dr. H to tweak Riley's treatment regimen and get prescriptions filled.
As I sit in the waiting room, a family comes into the office.  The young boy is wearing a CANUCKS hockey jersey, and I instantly recognize them.  I name them one by one as they sit down, knowing they are the family from Vancouver who I have been communicating with via email, facebook and their blog.
Even though we have never met face to face, I feel as if I know them.  In my relief to see familiar faces and knowing that this mom knows what I am going through, I start to cry. She instantly takes my hand and draws me into conversation. 
Now really- I should not be the one crying...as this family has gone through Lyme hell and then some.  Two of their three children plus mom all have Lyme disease and have been on this journey for several years. I am amazed by their faith, steadfastness and sense of humour.  She assures me that IT DOES GET BETTER...and to hang in there.  I am so grateful to meet them and to hear her words of encouragement...even though their journey to health is still hour by hour, day by day- they have come a long way.  
Read more about the Goertzen's Lyme journey at http://ticksandtrust.blogspot.com/

We agree as we say good bye that the Canucks must win...and Dr. H. MUST cheer for our Canadian team...in honour of Parker and Riley.  Well- we did get Dr. H cheering for the right team, but we all know it wasn't their turn this year after all.


 

Downtown Vancouver....Post Canucks Loss Message Board- .written by Parker and family

Thank you Goertzen family for including Riley in your Canucks tribute.

This is a little glimpse into the "Lyme Club" that we didn't ask to be members of, but are somehow drawing strength and comfort from as Riley navigates this hellish journey towards restored health.
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Riley Update:

There is good news to report.  A few more drops in the bucket….maybe even a cup full.
In the last blog post I spoke of the treatment difficulty Riley is experiencing due to his trouble with detoxing and the horrible state of his gut.  The doctors have been amazing and tenacious at trying to figure out Riley’s body and his lack of apparent progress. It is complex and by no means just one thing standing in the way of improvement.
They have given Riley incredible attention and through extensive specialty lab testing, consults with other experts in the field, and continual tweaking of his treatment regimen…just keep chipping away at Riley’s difficult case.
As one of Riley’s doctors said, “This is intense medical investigative work and a lot of the complexities of Lyme treatment are still in the pioneering stage.”  Some patients seem to sail through their treatments, following standard treatment protocols, and have less complicating layers.  This hasn’t been the case for Riley.  Every time they work at one layer of the disease, something else is uncovered and seems to hold up progress.

However, it so good to be able to say that some significant improvements have occurred these past couple of weeks and we are seeing new glimmers of hope and change in some of Riley’s symptoms.
Here is what Riley is describing:

Increased Circulation....part of his latest treatment protocol has been to deal with "thick blood" and the issues of "biofilms" (slime-like protective coating around bacteria/parasites), both common in Lyme disease. Riley is describing for the first time in months and months that his limbs don't feel like lead weights in the bed.  He is able to gently lift his arms off his chest or stretch them in the bed and move his wrists and elbows a bit as well. The circulation in his hands and feet is slightly improved and he is describing a sensation that the medications feel like they are getting into every crack and crevice of his joints and muscles.  Every joint is in excruciating pain most of the time. He said it feels like a balloon of intense pain in every joint...even the small joints in his fingers and toes.  Since being on the medications to deal with his "thick blood" (coagulation) issues, he really feels as though the balloon (of pain) has been popped with a pin and that the pain is beginning to dissipate and is slightly less intense.  He is also experiencing less tingling down his arms, legs and in his neck.           

Muscle strength...he is describing increased muscle capacity.  He can lift his head slightly off the pillow to reposition himself in bed (unable to do this even a month ago).  Although he can't yet sit up on his own, or get out of the bed, he now has enough muscle strength and energy to move from lying flat on his back to a side position. 

      He is also, with assistance, able to walk (shuffle) to the end of the hall and back to the bedroom once a day.  His legs feel a little stronger, but he still pants as if running a marathon.

Oxygen and lung capacity...he is doing deep breathing exercises in bed and is noticing increased lung capacity.  When he has tried to communicate these past months, it has been hard for him to even get enough breath to whisper.  Now he says that even though he does not have a full voice yet, whispering does not take as much energy and he doesn't feel out of breath when getting his words out.  The walks down the hall do not leave him quite as breathless

Neurological Symptoms...the worst symptom in terms of locking Riley away from the world has been the intense sensory overload he has experienced from touch, movement and especially all sounds.  In California, during the last month or so, he was beginning to notice a slight improvement in his ability to see movement around him. For the longest time, when entering his room, we needed to walk at a very slow pace in order to not startle him.  We had to cover the windows with blankets because seeing leaves move in the wind, caused a tornado in his brain.  Voices needed to be in hushed whispers and conversation needed to be very short. For months we mostly used a whiteboard to communicate with him....simple questions and comments written down instead of spoken, so as not to increase his startle and fatigue from input.

      He is noticing an ability to have the window curtains open slightly and is able to look out at the trees.  He now keeps his eyes open and tracks movement and activity in the room and is able to do this without it causing as much stress in his brain. At times he is able to hear more sounds going on around him and doesn't get as startled by unexpected noises or events in the room. He is also very, very eager for conversation, input and stories, and has been able to converse (in whispers) with each of us for longer periods of time.  He is thrilled to hear news of the world....golf, family, friends and current events. He still gets easily overwhelmed and at certain times of the day isn't able to talk at all...but it is certainly improving. 

Facial Paralysis...although still not strong enough to chew regular food or drink even from a straw....his jaw and tongue are getting stronger and it is slightly easier for him to swallow his pills and pureed food.  (His willingness to drink his calories and down so many pills and supplements without complaint...is astounding). He is noticing less tension in his facial muscles and can move his forehead muscles, mouth and chin with a little more ease. One of Riley's greatest features has always been his wide and enthusiastic smile.  Because of the startle from emotions as well as the paralysis in his face- he has not been able to smile and laugh.  We have had to be very careful not to catch him off guard with humour...as this causes him to smile unexpectedly...which causes facial tension, pain and also a weird and uncomfortable startle response.  Well- these past couple of weeks he is noticing that he can smile a bit in conversation with much less aggravation and physically it is a little less uncomfortable.

      Amazing little steps really...but such a long way to go too.  He is working so hard at every step and is absolutely elated when his brain is able to engage in the world- even for a few minutes.  He remains positive, determined and so hopeful about his future.  WOW!!!

      We wait patiently for some of his other excruciating symptoms- especially his abdominal pain- to lessen...but are so grateful for the small signs of improvement we are witnessing. We wanted everyone to know that "He is here" and so eager to engage in life.
      His daily prayer through all of this...."I put myself in God's hands and trust in the process".

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