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.
   _________________________________________________________
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".

                __________________________________________________________

    






Tick Soup and other LYME bytes.

Terry's Visit- May Long Weekend

Monday, May 23/2011
I am filled with a profound sense of dread and heartache this morning as I wait for the taxi to shuttle me away from Christine and Riley. I am headed back to Calgary once again to re-enter what is supposed to be our "normal" life. One consolation, at least, is that Evan is thriving in Calgary...busy at school, preparing to perform in the musical Narnia, and forming quality relationships with peers and adults alike. Still, I can hardly bear the thought that once again our family will be split in two...divided because of the lack of adequate treatment for Lyme in Canada.

I have had moments of grace here...lying beside Riley as we engaged in short conversations, and silently as I watched him bravely endure levels of pain I cannot even imagine. I have also been awestruck by the tenderness and tenacity by which Christine continues to nurse our dear son around the clock. We have had drops in the bucket to this point,but we could really use a pail of recovery for Riley! It is clear that we're missing some critical part of his treatment...the key or keys that unlock the compexity of his illness.

In the moments before the taxi pulls up, Riley smiles at the prospect of the Canucks winning the Stanley Cup, and again as he imagines driving with his "uncle" Ian towards Grotto Canyon...racing around the corners in Ian's sports car! Then in typical Riley fashion, he thanks me for my visit, the e-mails I send him daily, and for the love he receives from me. I am amazed at his ability to care for me despite his pain and suffering and so very proud of the sensitive and courageous man he's become!

I arrive home to the gift of community...our dear friends Carmen, James, and Mio pick me up at the Airport with food for Evan and I. Meanwhile, another close friend Sharon is at our home tending the flower pots, sorting laundry, and cooking dinner! On top of all of this, some garden elves have been at our place over the weekend trimming hedges and nurturing our front yard. I wait to pick up Evan from a Narnia musical rehearsal after he spent the weekend with his second family the Habkes. What would we do without the support of friends and family?

With tremendous appreciation,
Terry



RILEY UPDATE:

In a recent phone consult with one of Riley's doctors, she named what Riley is experiencing as TICK SOUP syndrome- a medley of infections, viruses, bacteria and parasites that have taken up residence in Riley's body due to his severe level of illness-caused by the initial Lyme bacteria invasion.

What we are dealing with is a bacterial load from the lyme and co-infections as well as a soup pot full of a "little of everything" else...not the best case scenario for healing.

Riley's treatment is in a very delicate and precarious stage right now. His treatment regimen: aimed at killing bugs. His medical team, however, are trying to balance this with an appropriate level of detoxing so his liver can cope with the massive carnage (toxins) left over from the die off.

Specialized testing has confirmed that Riley's gut remains a mess and his liver is having trouble keeping up with its job to clear out toxins from his body. This is causing his body to stay in a state of alarm and massive immflamation. Some of the distress, debilitation, and lack of treatment progress he is experiencing is due to his body's reaction to the bacterial die off toxins and his gut and liver's inability to keep up with the job.

The longer we walk this path, the more we are learning that its not a clearcut path but rather a complex labryinth with many twists and turns and dead ends. Successfully treating this chronic illness is like peeling away the layers of an onion....one delicate layer at a time and until one layer is uncovered, the next can't be addressed.
Until Riley's gut and liver are strenghtened, the die off reaction will continue to keep him very ill.
Damned if you do and damned if you don't.
Active bacteria are still there and reproducing and playing tag in different hiding places within every organ, tissue and cell.

The lyme bacteria are stealth bugs that have very sophisticated mechanisms for survival. They are able to survive by manifesting in different forms, each requiring a different kind of killing agent. Even then- they are able to go into hiding in tissue and organs and evade the medications. They also form what is called biofilm around them so the antibiotics cannot penetrate.
Drugs for the bugs, drugs for the biofilm, drugs for the gut, drugs for the liver, drugs for the mother (just kidding).

At the moment, Riley is on a much lower medication regimen and the focus of treatment for the next few weeks, is on supporting his gut to heal and his liver to detox. It is very common with Lyme treatment to go hard at the bugs for a time, then pull back and give the body time to regroup in preparation to peel away the next layer of the onion. The trouble with this is, most lyme patients begin to see some pay-off along the way...small bits of progress to buoy them up for the next leg of the journey.
Riley has not had this kind of progress yet, and the doctors feel this is in part due to the stubborn co-infections, his gut and liver issues and the areas of his brain that have been hit the hardest.

The bottom line....a very sick boy stillwho is waiting with every breath to feel some progress. He has continued to be more cognitively present and is so eager for connection. When he is able - we occasionally are able to lie beside him in the bed and have short whispered conversations. He has really been craving conversation about things other than his symptoms....to talk about people back home, hear about current events, and of course...on a regular basis we are updating him on the CANUCKS road to the Stanley Cup.
He so desperately wants to watch some hockey on TV.
His brain is still so startled by noise and movement, but the other day he asked if he might try watching even a few seconds of one of the Canucks games. Near the end of the game I turned on the TV in his room (up until now he hadn't even noticed there was a TV in the room). I told him he could open and shut his eyes as he needed. He told me with tears in his eyes that he never thought that he would be actually frightened to look at a game of hockey. He opened his eyes and laboured to watch for what seemed only 4-5 seconds. He closed them again and then tried once more to watch. Another 3-4 seconds and that was all his startled brain could handle. The TV was on mute but the fast paced movement of so many players and the fans waving frantically in the background was just too startling for him He was glad he tried but so disappointed that this was all he could handle. He describes the stimulation of movement, sound and touch like a tornado swirling in his brain, or like being electrocuted.

He now has a goal to watch the winning team lift the Stanley Cup and skate the rink with it (of course this will be the Canucks)....maybe not the game but at least the final seconds!



A few other LYME BYTES
NAVIGATOR METHOD BAND....rocked the gym at Vincent Massey School in support of Riley. A huge thank you to the Band, their support team and all who attended. It was a huge success...over $14,000 raised to help with Riley's treatment costs. AMAZING!!!
We were completely blown away by the photos, stories, letters written to Riley, and the level of care and concern from his friends, teachers, hockey coaches, neighbours and others who were there who have never met Riley but wanted to show support.
THANK YOU NAVIGATOR METHOD.
All the notes written to Riley have arrived in California...and we are reading them to Riley one at at time. He is definitely getting the message that he is not forgotten.


Other LYME NEWS....Canadian Lyme Lepers in California
http://lymediseasedebacle.blogspot.com/

David Cubberley, a cousin-in-law and Director on the Board of the Canadian Lyme Foundation...recently came down to visit us in California. David has been an amazing advocate for Lyme patients in B.C. and across the country. He quite frequently writes and speaks on behalf of patients and in support of change regarding the diagnosis and treatment of Lyme disease in Canada.
In a recent blog post he described his trip here and how it relates to the state of Lyme Disease in our country.
Following are some excerpts from his most recent blog entry:

"Recently I visited with family members living in San Francisco for treatment of a son’s chronic Lyme disease. Refused diagnosis in Alberta, their son Riley got so ill that he and his mother had to move to the USA to try to get his health back. A desperate measure, but when the door slams shut on therapy in Canada, there’s only one choice left.


As it turns out, my relatives have joined western Canada’s growing Lyme-leper colony in California. No one in public health up here bothers to notice how big this exodus is – when it comes to Lyme, they prefer to let sick dogs lie. But in San Francisco I learned there’s a whole clutch of Calgary families there buying their Lyme-care. And we can be sure there are Edmontonians and Vancouverites too, because Canada’s refusal to treat people infected with Lyme disease is as universal as our healthcare system.

As a result of Canada's Health’s failure, Riley is now immobilized in a far-away bedroom in San Francisco, where light, movement and sound can be closely controlled. Lyme invades the brain and disrupts the limbic system, making external stimuli painful and disorienting for patients. So Riley is sequestered from people and sound much of the time.

This is a bedroom where he’s tended lovingly by his nurse-mother Christine, for long hours every day. A bedroom he only ever leaves laboriously and briefly, occasionally in a wheelchair for visits to his doctor. A bedroom that’s really now his entire world, in a relative’s house, where family and friends visit in order to help keep hope alive.

Riley was brought to California to be close to his Lyme-literate MD because he’s far too sick to commute from Alberta for appointments.
San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.

I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.

If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada).

Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.

This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.

‘Interesting’ is too neutral a term for the agonies inflicted by these terrifying diseases. The cost in individual lives of missing the opportunity to pounce when they first occur is incalculable. Canada’s indifference in light of the mounting evidence before government is inexplicable and outrageous. It completely violates the spirit and intent of the Canada Health Act’s commitment to all Canadians. And it violates a Charter right to security of person.

Recently, Lyme-activist Gwen Barlee released a confidential report by Dr. Brian Schmidt of the BC Provincial Health Services Authority. To his credit, Dr. Schmidt acknowledged that patients are being abandoned by practice guidelines that rely on poor testing and arbitrarily limit treatment to a short course of antibiotics. Even if an absolute cure for chronic Lyme is elusive, resolution of symptoms and return to an active, independent life is achievable for most.

Dr. Schmidt’s report outlines a positive direction for Lyme disease diagnosis and treatment that would re-open the door to medically necessary care for infected British Columbians. I reread Dr. Schmidt’s report carefully while with the Lyme-lepers in San Francisco. It offers hope for a return to an ethical compass in public health policy on tick-borne infections. It provides a direction for addressing and preventing an untold amount of human suffering. Being with Riley and his mom, seeing their struggle firsthand, resolved me more than ever to agitate against a status quo that de-insures Lyme disease and denies ‘medically necessary care’ to people with tick-borne infections.

So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it.
We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.

There are many good reasons to visit San Francisco. Lyme disease should never be one of them".

For more from David Cubberley visit his blog: http:lymediseasedebacle.blogspot.com



"You gain strength courage and confidence by every experience in
which you really stop to look fear in the face. You are able to say
to yourself, 'I have lived through this horror I can take the next
thing that comes along'.
You must do the thing you think you cannot do".

Eleanor Roosevelt