Buried in Books

                                  

The last month has been extremely difficult for Riley.  In response to a flare up of his symptoms, we have withdrawn a little more from the world.  Although I dutifully set our clocks back an hour, I am now having second thoughts.  Where do they keep the soft light that used to lift my spirits and shepherd me safely to and from work?  Some days I cannot bear to leave and later dread returning.  I fill my coat pockets each morning with morsels of hope and anticipation, but they slip far too easily through unseen holes and litter the barren ground behind me.  Perhaps the lean winter birds peck at this trail of crumbs and it fuels their migration?

On the 28^th of October, Riley turned 18.  Although I had long anticipated this milestone, I was not prepared for the ensuing sadness.  It was as though someone had peeled off my skin and left me bracing against a bitter wind; watching helplessly as chronic illness stripped away Riley’s party… cake toppled, friends scattered, beer spilled, cars overturned, girlfriends departed, university crumbled, and robust health cart-wheeled into oblivion.  How do you celebrate your son’s transition to adulthood when he lies there like an emaciated and unstrung marionette, unable to walk, eat, or shower, without assistance…or when he mentions that he’s surveyed his entire body, unable to locate one area free of pain!

Just eighteen and already Riley is a veteran of bitter winds.  Not one to dwell on his losses, however, Riley has sought shelter in the love and generosity of others, deepened his spiritual roots, and learned to rejoice in life’s simple pleasures.  At times I imagine he is enrolled in the College of The Saints.  He continually reminds us that although he suffers, he is better this year than he was at the same time a year ago.  On his last birthday he could not listen to audio-books, watch soccer and golf, or engage in short conversations.  These are some of the milestones Riley celebrates. I am reminded of the words of Ralph Waldo Emerson:

 “What lies behind us and what lies before us are small matters compared to what lies within us.”

Had you sat with us by his bedside, on the eve of his birthday, you would have witnessed part of an ongoing miracle.  Gratitude shone from Riley’s eyes and a radiant smile met us as we bestowed simple gifts upon him and read birthday cards from loved ones.  His eyes widened as we shared with him the abundance of Blog Reader Book Picks from so many of you. We took turns reading to him the extensive list of favorite books and the colorful descriptions people had given for making their selections. Riley was absolutely delighted to know that people were thinking of him and that he could now download and treasure audio-books that had inspired others!  Now with each book he listens to, he pictures the person who endorsed it and imagines them enjoying it with him.

From his bedroom window, Riley can only focus on a few barren trees and jigsaw pieces of sky.  When he closes his eyes to listen to a book, he is transported above his sickly body to all parts of the world, from medieval to modern times, British Columbia to India! He has rafted with a Tiger, escaped over the high passes of Tibet, golfed with “The Golden Bear”, shared a prison cell with Mandela, survived Auschwitz with Victor Frankl, stood in the bombed out streets of Sarajevo to hear a cellist play, served ‘$#*! pie with the Help, worked with poor tailors in India, built a Gothic Cathedral…

                                                                 

People frequently ask us to let them know what we need…a generous but difficult question to answer.  We need you to walk patiently beside us, to hold on to the morsels of hope when we drop them, to pray for us, to share your own lives with us, to not give up on Riley as he battles this illness, to pull us out when we withdraw from the world, and to continue sending reading suggestions to Riley that will enhance his recovery!

With much gratitude,  Terry

BOOK LIST for the Bartonella Birthday Boy

October 26, 2011

Two years ago today, Riley came home from a typical Grade 11 day complaining of flu-like symptoms and feeling totally exhausted.

It was two days before his 16^th birthday and the start of a very long, painful and complex journey with Lyme disease.

Two days from now, Riley will turn 18 ….a birthday that looks so much different than any of us could have ever imagined.  He will be 18 going on “old soul”.

As a family we keep talking about how the journey of illness teaches in a way that few other life experiences can….some are welcome lessons and others we would rather pass by, but no matter what Riley is growing wiser and stronger….high school diploma or not.

The bits of progress that we enthusiastically reported the last couple of months are being masked by an intense flare-up of symptoms the past 2-3 weeks. Riley is now suffering from increased muscle weakness, facial and tongue swelling (swallowing, whispering and smiling are hard again), tingling and burning sensations, abdominal pain, brain fog and agitation, burning eyes (acid on his eyeballs), hot and cold sensations throughout his body, night sweats, very tender foot soles, and insomnia. In addition, he frequently gets body shakes… as if he has just come out of a glacial river- teeth chattering and all. Sometimes these shakes are evoked by a surge of emotion, positive or negative, such as a great golf play on TV, or overexertion during a whispered conversation, sitting too long after his bath/shower, or talking to or about someone or something that means a lot to him

Part of this intense flare-up is the result of a new treatment protocol to “attack” the co-infection called Bartonella.  For a brief time several months ago, Riley was taking medications to address this infection, but he had to stop because the bacterial load from the Lyme bacteria was so severe that his body couldn’t deal with both treatments at once.

The symptoms that Riley has reported as being the worst these past couple of months are a sign that the Bartonella infection is raging. Bartonella is known to cause many of the symptoms that Riley is experiencing, especially the intense abdominal and neurological issues.  He said to me the other day, “Mom, it feels like my brain has been ransacked. There’s been a ‘break and enter’ and everything has been turned upside down- furniture knocked over, piles of paper thrown everywhere, the whole house in turmoil… it’s a mess, but luckily they didn’t take anything. I just can’t find things easily”. This is Riley’s brain- he tries to finish a sentence and loses the word (has to go looking for it in his ransacked brain).  He also experiences agitation - spontaneous emotions that seem to come out of nowhere, and he has also been really sensitive to touch again. 

In a recent neurological QEEG assessment, Riley’s brain was described as a computer where the hard drive has everything properly stored, but it’s frozen and looping in circles…it needs to be rebooted and cleaned up in order to function fully again.  The good news is that the hard drive is there and gradually being restored. We are starting some further neuro and physiotherapy in the coming weeks, as he is able.

Riley’s brain function continues to be better than it was several months ago. The severity of startle and anxiety caused by sensory input has remained toned down enough that he continues to be able to watch golf and some soccer on TV (still can’t handle shows or commercials -too fast and loud). The biggest thrill for him has been the ability to listen to audio books on his iPod.  He is going through 2-3 books per week!

This is where all of you come in…Blog Reader BOOK PICKS.

Just like the “staff picks” at Indigo- we are looking for our “Blog Reader Picks”.

On Riley’s birthday this Friday, we would like to present him with a book list of picks from all of you… books you have loved and why this is so. Then over the course of the next few weeks we can download some of these books for him and he can think of you as he listens to your selection. J

So all you readers out there- send us the name of a favourite books-new and hot, oldies but goodies and we will pass these onto Riley. If you have time please send him one or two sentences describing why you liked a particular book.

If you haven’t checked out audiblebooks.com…it is a great source for audio books- this is where Evan downloads all of the books for Riley to listen to on his iPod. He’s not at the KOBO or Kindle stage yet, because reading for him is still too difficult, and he is definitely not able to hold a real book- so Hurray for iPods (thank you Steve Jobs!!!).

Look forward to hearing from you when you are able….post book pick as comment on blog or email is great.

Christine

Thanksgiving Rumblings by Terry and Christine

                   Giving Thanks in the Midst of Chronic Crisis

Backyard Fall Beauty...captured by Evan

Thanksgiving- a favourite time of year for me…both the season and the celebration.

This year, however, there is heaviness in my heart that has settled in and is forcing me to  look anew at just what “thanks-giving” really means.

My life has been shaken to the core this past year with the death of both my parents and Riley fighting for his life. 

I have been asking myself- what truly does it mean to give thanks…am I only able to have a grateful heart when life is going well, or is it something deeper that emerges during  times of struggle and pain?

How does one live with gratitude in the midst of chronic crisis?

When Riley was scary sick last winter and we feared we were losing him- we were in “crisis”. All the day to day busyness came to a screeching halt and we went into survival mode to deal with the crisis before us - Me with Riley in California, and Terry and Evan in Calgary, and all of you showing up in a million ways to support, pray, cook, email, drive, cry with, pray, cook, drive, cook some more, phone, drop off notes, send money, pray some more……and, and, and the list goes on.

Small bits of progress that were not even detectable at first began to emerge for Riley…not enough to say he was regaining the life he once knew- but enough to feel like we could breathe a little deeper.

Now we are back in Calgary.  Riley is making small gains, ones that are huge compared to the state he was in for months while in California…so we are thankful, very thankful.  We are seeing our Riley emerge from a coma-like state and respond bit by bit to the world around him.

However, the “crisis” lurks and the “chronic” state of his ill-health is still slapping us in the face at every turn.  This truth is hard- really, really hard – for us, for Riley, and I imagine for all of you who have walked alongside us for so many months.

Every Lyme patient and family we have come to know- experiences this “chronic crisis” on a daily basis.  There is nothing easy about Lyme disease- not the diagnosis, the treatment options, the medical obstacles or the life it robs from those who live with it.  There are no quick fixes or miracle recoveries with Lyme…just hard day to day slogging through the myriad of treatments, progresses, setbacks, and the hideous pain and suffering.

Does this get me down? Of course! 

Do I cry most days about something? Absolutely!

Am I sad and grumpy and hard to live with? On a regular basis! 

Do I long for the day when we are four at the dinner table again, and Riley can brush his own teeth, read a book, eat solid foods, walk to the bathroom on his own, or pick up his iphone and text a friend about Friday night plans? With an aching heart everyday!

In the midst of this, however, what keeps emerging is a deep sense of gratitude for all that we have been given.
Yesterday at church….John, our minister, was reflecting on Thanksgiving.

He put into words, some of the thoughts and feelings I had been mulling over for awhile.
“Thanksgiving isn’t a “should”, it surfaces and surprises spontaneously. It is being caught off guard by a deep sense of gratitude and awe when perhaps it isn’t warranted or expected-it isn’t something we can force but something rather that just is”.

In the midst of this “chronic crisis” called Lyme disease…I find myself filled with gratitude- not because it’s easy, not because Riley’s no longer sick, not because grief is absent, but just because.  A surprise.

I hope you find yourselves surprised by gratitude...Happy Thanksgiving.
Warmly,
Christine

Fall Grasses In Edworthy Park....Photo by Evan



Fall Beauty....by Evan

 Terry’s Fall Reflections

An invigorating Autumn gust rattles the skeleton trees…leaves dance, swirl, settle, scatter, and take flight. Winter will soon drape herself across the landscape. Fall, a favorite season of mine; a time for reflection and new beginnings. Butternut squash soup, swaying sunflowers, hikes among the Larches, well-worn sweaters, apple crisp mornings, frost on the tent fly, fireside books, and the bounty of the harvest shared among family and friends..

                                            Early Fall from Eiffel Peak

This year, however, I carry with me the dead weight of sadness, and even my dreams are unsettling. In one such nightmare, I lie airborne on a collapsed parachute watching helplessly as the ground rushes towards me at an alarming speed. In another, I crawl gingerly along a wooden roof beam that splinters, spilling me violently to the ground. Although I am not certain of the meaning behind either of these visions, intuitively I sense they are related to Riley’s chronic illness and the fact that he will be spending another birthday (his 18^th) bedridden. Despite ongoing, necessary but expensive treatment, there is no immediate end yet in sight to his horrific suffering. At times I want to shake my fists in the air and scream at the top of my lungs: “THIS IS SO #@!!@#! UNFAIR! ENOUGH ALREADY!”

I think of an excerpt from PSALM 31: “Be merciful to me, O Lord, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief…”

A few weekends ago, on a short retreat with a friend to Denman Island, B.C., I lay on my back on the beach, eyes closed, sunlight on my face, listening to the gentle lapping of the ocean and the deepening of my breath. A smile found my face and a feeling of contentment flooded over me. Then just as unexpectedly, my body convulsed and a wave of tears emerged; a pocket of grief surfacing.

                               Helliwell Provincial Park, Hornby Island, B.C.

Our bungalow has become far too quiet these days and the familiar noise of our busy family remains a distant memory. It would be so easy to throw a rather large ‘Pity Party’, were it not for the unshakeable faith of Riley himself. One morning as I tiptoed into his room heavy-hearted, his eyes opened and I asked him intently how he was doing. To my astonishment, he replied: “Dad, I wake up each morning with a sense of delight…look at the things I can do now that I couldn’t do last Fall...I am listening to stories and watching soccer on TV…I can move the covers on my bed!” Despite daily pain, weakness, and the growing realization that his friends are moving on while his dreams and aspirations sit unopened, he remains, as always, optimistic. Riley’s gentle, kind spirit and gratitude in the face of long-suffering humbles me.  I hear his laughter and marvel at Riley’s heartfelt smile following a postcard or message from a caring friend.

Then there are the countless acts of kindness that continue to be bestowed upon our family…meals left on our porch,  generous donations, flowers, prayers, and compassionate words…so much to be thankful for! To all of you who remain faithful to us in our arduous battle with Lyme, we are indebted. You have picked us up when we have stumbled and carried us when our weary legs and hearts have faltered.

Thanksgiving blessings to you all, Terry

Love, Hope, Optimism

I type this entry under shade thrown by sage-like trees that predate my birth and will also succeed me. I listen to the murmur of the Bow River. Its’ glacial waters sing a perpetual song of change and remind me that my life on earth is fleeting at best. I try, unsuccessfully at times, to see the gifts offered in each given day.

One such gift occurred on August 5^th, the 84^th birthday of Riley’s grandfather. Determined to celebrate with his beloved grandpa, Riley endured the trip to the Foothills hospital despite his own pain and discomfort. Although an arduous journey, Riley wanted to be certain that he had the opportunity to visit his grandpa in case Lawrence’s symptoms worsened.

Decked out in his favorite purple vest (always up for a party), Riley’s grandpa was wheeled into the hospital chapel for a tearful and joyous conversation with Riley. Wheelchair to wheelchair they leaned towards one another in what can only be described as the reunion of two “long lost friends”. Other than a brief heartfelt visit recently with his best friend Austin, Riley described the time with his grandfather as among his happiest moments of the year!

"Heart to Heart"

 Sadly, the above reunion was to be Riley’s last, as Grandpa died peacefully, surrounded by family, on August 21^st. He will be remembered as a gentle and unconditionally loving grandfather, who delighted in participating actively and witnessing the unfurling of his grandchildren’s lives. It seems like just yesterday he held Riley’s tiny hand and introduced him to each plant in his Victoria garden and the treasures of Agate beach nearby.

Treasured memories with Grandpa in Victoria

With the loss of his grandmother Evelyn (Christine's Mom) just over a year ago, Riley has now had to experience the passing of these two cherished grandparents while confined largely to his bed. Fortunately, he still has my mother Jacquie close by in Canmore and he will carry the spirit of his other grandparents “heart to heart” along his life’s journey. It would be fair to say that his grandparents' love and positive influence has been woven into the very fabric of his being. Riley has stated that he plans to honour their memory by the manner in which he lives his life.
click here to read Lawrence's Obituary

With two deaths and Riley approaching his 18^th birthday with no clear end to his suffering, one could easily conclude that we have had “more than our fair share” the past couple of years. Riley, however, despite his ongoing pain and weakness (cognitive improvements continue), reminds us almost daily that it could be worse and we have so much to be grateful for. On a hopeful day, we too are able to give thanks that Riley is slowly improving, and that friends and family continue to faithfully shoulder some of this burden with us.  

Unable to participate in our usual family vacation this summer, Evan and I left Riley and Christine and joined our close friends the Habkes for several days of camping and hiking along the Icefields Parkway. Although difficult to leave Christine and Riley at home, it was uplifting to be in the familiar company of friends, to laugh out loud, and to allow ourselves to be humbled and awestruck in the presence of majestic, snow-capped peaks and robin-egg blue lakes.

  

Say YES to life!!     
 Wilcox Pass- Jasper Icefields Parkway -August 2011



For the Fall, the plan is for Riley and Christine to remain in Calgary and to continue to work with the Lyme specialists in California in conjunction with the private physician here.  Although still prohibitively expensive, this looks like the best decision for the time being. We continue to remain hopeful that Riley is receiving the best care available and that in time he will continue to improve and return to the life he dreams about.

In closing, it seems both coincidental and inspiring that Jack Layton (a politician Riley’s grandpa admired and who died only hours after him) left all of us with the following challenge:

"My friends, love is better than anger.Hope is better than fear.Optimisim is better than despair. So let us be loving, hopeful and optimistic. And together we’ll change the world."

Blessings to you all,

Terry and family

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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