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

Riley's Friends....Supporting the Cause

       

     Thank You "Navigator Method" for your support of Riley. 
        He is thrilled to know that friends are supporting him.

 

It Is Spring....I...AM...HERE

If you read the previous blog post, you'll know that we have been in a long drought waiting for a raindrop or two in our parched rain barrel. You'll also know that we view Riley's eventual recovery as a painfully slow process...one drop of water at a time!

We now have a few drops to report.....not a whole bucket of water into the rain barrel...but definitely a drop or two.

Riley had some encouraging words (whispered to me)  a couple of weeks ago....he said he can't completely explain it, but he feels he is slightly more "here".  He can't pinpoint exactly when his brain left but it seems to be a little bit back- he feels a bit more present instead of on auto pilot.
He feels as though his brain has been deep inside a cocoon and it is now peeking out a bit, and that he "is back"....in his body.
"Before I felt my body and my soul, but they were separated...far apart, but now they feel back together- connected....and now my thoughts are right there...right behind my eyes.  Before they were there but off in another universe....and I had to go so deep to access them.  I had thoughts but they were so distant.  Now they are right there...so close.""

He looked around the bedroom he has been in and said that the first 6 weeks he wasn't even aware of his surroundings but now is noticing what is in the room.

We view this "peeking out" of his brain as a tiny bit of encouraging news. Unfortunately what also comes with this increased mental awareness and reconnection back to his body, is the realization that he disconnected for a reason- in part, his brain "checked out" because the pain was (and still is) unbearable and unrelenting...the slight increase in brain function has not decreased any of his physical symptoms.

Riley has learned to go deep within his soul to deal with the incredible physical pain he endures every minute. He said, "Mom, I just want my brain back and to not be so startled by everything all the time...I hate being in this ultra sensitive state...it makes me want to stay a turtle in a shell and not come out because its too hard...but my lust for life is still there, as strong as ever...waiting in the shell while the storm goes on outside".
The overwhelming startle he feels from every movement and noise is still very intense, but if this would subside even slightly, he could imagine taking in the world again in very small bits.

In an email, a friend asked me to describe what we mean by "startle"...it's so hard to picture what this is actually like for Riley. An example:

From his bed when he opens his eyes, there is a set of sliding patio doors that look out on to a beautiful view of trees and the numerous birds that inhabit the garden. 
If he opens his eyes and unexpectedly sees the branches of the trees swaying in the wind or a bird flies past the glass doors...he says it feels like a tornado is swirling in his brain...and he begins to sweat, his eyes open wide as if being chased by an enemy, and he feels as if his head might explode.
If we move too quickly in the room, brush his skin when we come near, or he hears an unexpected noise...like the bedroom door, or a voice outside his room, he said it feels like he is being electrocuted.
This extreme sensitivity to sound and movement is one of the worst symptoms for Riley, as he normally is a very tolerant and easy going guy.He feels tortured by this and hates that the rest of us have to be so careful.
The trips to medical appointments are excrutiatingly difficult...the real world is swirling past and leaves him absolutely exhausted and depleted for several days after.

The treatment regimen for the babesia infection has been brutal. With this treatment comes a lot of emotional rawness (commonly reported by patients undergoing this treatment).  We have had many hard days swirling in emotional upset and physical pain. Sometimes I lay beside him most of the day trying to support him through this turmoil.  He wants to talk, but nothing makes sense, then everything makes sense but he loses his words completely, tears come, sweat comes and then physical exhaustion.

Together, Riley and I have been meditating on the words given to me by our dear friend Dale (who visited here recently)....I...AM...HERE. 
During Dale's visit I walked with him to a bench I discovered tucked into a hillside just minutes from our house. There he taught me a meditative prayer... reciting the words....I...AM...HERE.Through tears, anxiety and fretful breath, I could feel that.... I am here, God is here, Riley is here, all of you are here. I shared this meditation with Riley and together we have been reciting those precious and simple words...repeating them as a reminder of life and hope.

At some point every day Riley whispers to me, "I am here and I love you". I say to him daily "Riley you are here, YOU are not lyme disease, YOU are Riley.  You are here".



"I...AM....HERE"  bench  




View from the Bench

 

It is Spring...
Last week Riley woke up and on the commode(toilet) beside the bed...he gestured for me to come close so he could whisper something:
"Mom- its Spring."
We had been describing his illness as a very long winter, with signs of Spring hidden deeply beneath the surface. Together we were waiting for small signs of Spring...so I thought he was referring to that .I said- "You mean you feel Spring in your soul?"
"No it's Spring" he whispered."Yes Spring is coming Riley" I replied
"NO- today is the first day of Spring Mom- it is March 21st."  ""OH...of course" I humbly replied.
Riley counts the date off in his mind every day and he knew that it was Spring before I did! :)

BENCHES

Since our last blog several of you have emailed us your "favourite bench stories"...or told us of a bench you will soon visit and while there you will think of or pray for Riley. Keep sending us these stories...they have been inspirational.



A bench moment on hike near Canmore


Terry and Evan's March 26th visit

After over a month apart, I crawl carefully into bed with my dear Riley and without speaking I curl up beside him. He methodically places his hand over mine, and silently we lay together almost motionless for what feels like an hour. At one point he opens his hazel eyes a peep to acknowledge me and a hint of a smile graces his mouth. His eyes close and I listen to his labored breathing and watch as his eyelids begin to twitch involuntarily. I survey his beautiful face...the gentle curve of his chapped lips, his slender nose and the myriad of endearing features that were present at his birth and remain even in his infirmity. Tears wet my cheeks, my nose runs, and I pray for the return of his warm smile, infectious laughter, and enriching company.

Despite the fact that Riley is both weaker and in more pain than on my last visit, he also feels less vacant and more alive somehow. Riley seems more conscious and he has stated on several occasions "I am here".
I remind myself to see this as a sign of hope despite being witness to his continued weakness and suffering. Riley's neurological specialist has given him an exercise where he has to touch his thumb on each of his hands to each of the hands' fingertips, in succession, two times. I watch as he sweats with concentration and exertion to complete what should be a simple task...he succeeds but it takes almost two minutes to complete!

Fortunately Riley has a deep faith and a strength of character that will not be deterred by whatever is required of him to get better.

For those of you who tell us you feel impotent and at a loss to assist us in our struggle with Riley's illness, please be assured that your words, deeds, and prayers are at work. Christine has told me on more than one occasion, when Riley is at his worst, and she feels overwhelmed, alone, and distraught, the right words just come to her. Calm words, that soothe Riley and lift broken spirits. These are the words from all of you...whispered and spoken lovingly from places near and far.

Outside the window California has begun to burst with bluebird skies and temperatures in the high 20s. Flowers erupt and perfume fills the air. My brother Grant took Evan and I up Mt. Diablo where you can see for miles and we were able to soak in the beauty of Spring. Now we wait patiently and trust that more raindrops are on the way and that Riley's barrel will once again be filled. In the words of Bruce Cockburn: "...So how come history takes such a long, long time,
When you're waiting for a miracle..."





In the capable care of Terry and an IV nurse....Christine and Evan escape to the beach for a few hours....Riley is in our every breath as we write him a note in the sand




Evan waving to the Paparazzi



EAT...LOVE...PRAY...INFUSE

EAT  LOVE  PRAY….INFUSE

 Our life in California is a daily ritual of these four things…hanging onto hope that each movement is a small step towards restored health and vitality for our dear boy.



 EAT…pureed organic veggies, chicken broth,  smoothies and soups to make sure Riley is getting good nutrients, and enough calories to sustain him…2800 calories per day…one Dixie cup at a time.



Riley's Organic, Veggie 1700 Calorie Smoothies



PRAY…every movement, every breath, every gesture between us, is a form of prayer…praying for strength, for hope, for progress.



Grandpa Moon sharing a moment with Riley before heading back to Canada



LOVE….tapping into the love that surrounds us and feeling grateful for the many, many ways it is showing up...knowing that it is all we can hang onto.



Great Big San Fransisco heart in Union Square...beckoning us to feel the Love



INFUSE…IVs drips all day, everyday…sometimes off and on for 6-8 hours of the day….infusing antibiotics, amino acids, and hydration…along with an endless array of oral medications and supplements.



Riley's IV drip...tucked in bed with Valentine Balloon



  __________________________________________

This blog entry is long overdue…my apologies to all of you who have been asking for an update on our life in California and Riley’s condition.

As you can see above-Riley's care is a round the clock combination of eat, love, pray and infuse...leaving very little time to make phone calls, send emails or update the blog. 

I have also been without words…unusual for me…as most of you know I like to talk and find it therapeutic to write.

This experience seems to defy description. This disease is hideous and words cannot really describe it or what we are experiencing.

I have been waiting for the right words to come to me and wishing that they could include a description of a dramatic shift in Riley’s condition.

Unfortunately dramatic shift is not what we’re getting…instead we are in for a much longer and more complicated haul than we first anticipated.

“Quick Fix” went out the window months ago, along with the lack of knowledge and recognition of Lyme disease in our Canadian health care system.

The Lyme and co-infection “bugs” are putting up a good fight, and continue to wreak havoc, doing the most damage in his brain and central nervous system.

The doctor has described to us that the debilitating neurological symptoms are in part due to the bugs invading his brain, but also due to his body’s fight to deal with the storm caused by the die-off of these bugs when killed by the antibiotic treatment.  Cytokines, antibodies, encephalopathy, inflammation….medical terms we are becoming very familiar with.

Riley appears to be in a sub-group of Lyme sufferers who have a much more difficult time dealing with the massive die-off of organisms brought on by treatment, as well as he has a significant number of complicating factors- including co-infections (Bartonella and Babesia) that are making it much more difficult and longer to treat.

Dr. H. has described to us that Riley’s body has essentially gone into “shock” (shut down), in an effort to deal with the trauma of the invading organisms and also the massive die-off from the antibiotic treatment.  The brain and other organs are in survival mode and is in part what is causing the extreme level of debilitation.

So- the line of treatment is not as simple as, “just give him antibiotics, kill the bugs and then he will be fine”.  It is a cat and mouse game trying to figure out how to kill the several forms of the Lyme bacteria, as well as the Babesia and Bartonella, while also supporting his organs and immune system to help him heal.

The doctors remain cautiously optimistic that Riley can and will make a full recovery, but are having to take a much slower and cautious pace with everything in order to keep his body functions stable and help him "detox" successfully from the treatment.

They have seen this level of illness before, as well as this kind of reaction to treatment, but did not fully expect this with Riley based on his young age, his prior good health and the relatively short time he had been sick prior to diagnosis (seemed long to us but many people suffering with Lyme disease go for years before getting properly diagnosed).

The doctors are very glad that we are down here and have been seeing Riley every 10 days- sometimes at the clinic and sometimes making house calls.

We have also been referred to several other health practitioners who specialize in Lyme treatment and are providing adjunct therapies to support Riley’s recovery.

Coming up in the next few days we will be making the one hour trek into downtown San Francisco to see a neurological therapist.  He has worked with many patients suffering from neurological Lyme disease and in a phone consultation this past week; he described the importance of doing neural therapy with Riley to support brain function while he is undergoing treatment to kill the bugs. 

We are tapping into every resource possible and are very thankful

for the expertise and knowledge of the medical team here. 

     

A little window into how Riley is coping with all of this and what he has to say (whisper)…

When telling Riley that we would be travelling to San Fransisco this coming week to see a neurological therapist, I explained that the doctor would be finding ways to support his brain function while undergoing all the treatment to get rid of the bugs.  I mentioned that the doctor would be wanting to know what is going on cognitively and asked Riley to explain how he would describe what’s going on in his head….here is some of what he had to say:

“Mom…. I can still read when you write me notes and hold them up for me to see…it just takes longer and it is so hard for me to form the words to respond-partly because I can’t get out what my mind is thinking and partly because my tongue and mouth aren’t working. Also, I just feel too weak to use my voice.  I also find it so hard to keep a train of thought going.  I get started talking and can't find the words and then all of a sudden I don't even remember what I was trying to say...but there a million thoughts going around in my head constantly.

I am thinking all the time…I have some rituals. When I first wake up in the morning, I tell myself what day and month it is…I don’t want to lose track of time.

After my shower…I do math in my head.  Then sometimes I take words, phrases and practice translating them from English to French”.

“I think my brain is like a rubrics cube.  The pieces are all there but they are jumbled right now…and getting everything to work again is a big complicated puzzle…but one day all the work will pay off and the rubrics cube will be perfectly in order once again”.

During another conversation when Riley was overcome with tears and feeling very weary from all of this….he said, “Mom, I just want a moment with you when its not silent between us and all we are doing is just getting through the meds and the pain…what I would like most is to be able to just sit on a bench with you and talk and watch the clouds go by.”

After that comment, I reminded him of all the benches we have sat on over the years…we started naming some of them. 

Now- one of our daily rituals is to each pick a bench to go to in our minds…and at some point during the day he tells me what bench he has gone to and I do the same…here are some of the benches he has mentioned:



Relaxing after a backpacking trip in the Dolomites- Italy



One of many hockey benches he has sat on...this one in Sweden



Eating Gelato in Rome



Bellhouse Park on Galiano Island....one of Riley's favourite places



______________________________________________

Are we surviving all of this?

Somehow, one breath at a time.

Can I imagine going on like this for many days, weeks, months to come?

NO!  
The agony from our family being separated is very difficult for all of us.  However, I am trying to practice the skill of truly being in the moment- because if I look too far forward, I get completely overcome by anxiety, worry and sadness.

 

We are doing what one friend described to me in an email as:

“Biting Down on the Handlebars”…a metaphor from bike racing when the athlete has hit the wall and still has a long uphill ahead.

We still have a long uphill ahead and the twists and turns on the road have not been easy, expected or smooth sailing…but we’re stubbornly “biting down on the handlebars” and hanging on for dear life!!! We feel completely numb and depleted some days and really can't believe that Riley continues to suffer with such intensity.  I am hanging on, but somedays we are not really sure how we can sustain this...but there is no giving up- Riley is still in there and waiting, waiting to get back to life.

The progress is going to be slow and undetectable at first. I am seeing Riley’s healing as one drop of water at a time into the big rain barrel called health....one drop is not even noticeable...but one day...one day that barrel will receive the drop that overflows the barrel and then we will see how far we've come and will be able to say, "Our cup runneth over."

Please, please let the drops be filling the barrel- even if we can't see them just yet!!

We continue to be so thankful for everyone's support through this very LONG ordeal.

Terry's reflections on last trip to California:
 

Evan and I boarded the plane for a much anticipated trip back to California. Through the generosity of friends and family we navigated our way awkwardly through a month of school and work while Christine heroically cared for Riley south of the border. I closed my eyes on the flight and a stream of memories washed over me: Riley as a curly blonde-haired child at China Beach…digging in the silky sand, Riley smiling as I struggle to catch him skating under the moonlight in Bowness Park, Riley laughing with his dear friends Ellen and Harrison after a grueling climb in the Dolomites. My memory centre skews itself towards images of him that radiate joy, contentment and robust health. Every fiber of my being rejects the fact that Riley is now a frail 17 year old unable to shower, eat, sit up, or use the washroom without assistance.

Although purely coincidental, fog and icy San Francisco drizzle set the tone for much of our second visit. Fortunately my cousin Joanne and her husband Sam’s hospitality provided a welcome respite for two weary, chilled travelers. Their spacious Walnut Creek home is a brightly lit sanctuary where flocks of colorful birds and slothful squirrels compete for seeds and shelled peanuts. Terraced gardens, rosemary hedges, flowering trees, and rolling hills as far as the eye can see.

Sam aptly described Christine as the “Mother Theresa of Mothers”…months of grueling, around-the-clock care…administering medications, feeding Riley by Dixie cup, shaving him, showering him, brushing his teeth, shuttling him to doctor’s appointments, supporting him as he shuffles to the washroom, lying with him for hours to soothe his startle reflex…all with too few signs of improvement.  Despite the expert medical care he is receiving, Riley remains incredibly weak and he struggles just to endure the minutes in each passing day. In the stillness of his bed, he prays and visualizes himself gaining strength and returning to the people and pastimes dear to his heart.

We now communicate with Riley predominantly through short messages written on a white board: “Do you need the washroom?”…”We are so proud of you” … “One day this nightmare will be over!” Unfortunately much of the time he is too weak to respond and this creates an unfamiliar barrier. Riley has endless thoughts trapped inside that he cannot fully express. One night he stretched himself to let his brother know how he felt about Evan’s recent musical achievements. Using two words and a pause, Riley expended the last of his days’ energy whispering: “I am…so proud… of you…I miss… you so… much.” Such few words, but each one a precious gift that Evan pocketed and carried home with him as we left Christine and Riley to fly with heavy hearts back to Calgary.







Bellhouse Park on Galiano Island....one of Riley's favourite places



He has been on treatment for Bartonella for the past 3 months and we have seen a slight decrease in Bartonella symptoms...unfortunately they are not the symptoms causing the most debilitation...but we'll take it. 

He has for the time being stopped the medications to treat the Bartonella (not done with it forever but for now) in order to start treatment for the Babesia. Dr. H. believes that the untreated Babesia may be getting in the way of Riley's progress..  He started this treatment 6 days ago and the past 48 hours have been very, very hard- with die-off symptoms raging (see previous blog describing "herxheimer" reaction).  I spent 7 hours beside him in bed today as he had fevers, chills, chest pain, shaking, head twitches and lots of crying and emotion...all typical Babesia symptoms.  The treatment is definitely stirring things up and we hope killing bugs.  Babesia is actually a malaria-like parasitic disease and has been called "Lyme's Cruel Cousin".