Wishing No News Meant Good News

It has been a very long time since we last posted an update.
We really wish that no news meant good news for Riley.

Unfortunately during our absence on the blog Riley has experienced a continual increase of disturbing symptoms and is suffering with unimaginable pain.  Riley’s journey continues to be a very complicated scenario.

We are limping along, and to be honest we are physically, mentally and emotionally depleted. His round the clock care is so intense that I have found it difficult to put words to the page for the blog…but here is an attempt to summarize what is going on.

First of all- Riley’s increased symptoms:

• Riley’s facial tightness has once again increased.  It is not the Bell’s Palsy that he experienced last year, but rather muscles so tight that it is very difficult for him to open his mouth- its as if his jaw is wired shut and he has to “will it open” every time he needs food or pills.  Even with this effort I still have to use the dixie cups to pry open his lips to get anything into his mouth….it is very labour intensive, tense and exhausting (for both of us). 
• Most days he can only nod yes/no because it is so difficult to push words out. All the wonderful conversation we were having this past summer is impossible right now. A couple of times a week he musters up the energy to whisper out a few words.
• Sensitivity to touch on his face is now extreme as well.  Every daily routine including teeth brushing , face washing and eating/drinking is intensely uncomfortable for him. If I brush his lips or bump his cheek he says it feels like he is being stabbed. Sometimes an unexpected spill of water or something touching his lips the wrong way can cause several minutes of full body shaking, tremors, sweating and agitation. It is really beyond description and so difficult for Riley, who by nature is so tolerant and self contained. 
• The other very disturbing symptom that has persisted the last couple months is the curling of his toes. They are so tight that the knuckles on his toes turn white and he cannot unclench them. The tightness travels right up his leg and into his groin and hip. This comes with almost constant tremors in his feet and what looks like electrical buzzing-it’s horrid!

We are very thankful for small mercies….his sound sensitivity continues to be less intense and this allows him to pass the time listening to audio books, watching golf, soccer and now some hockey as well. He is able to listen to us talk and read to him- and finds pleasure in this, even though he can’t really respond. This is such a gift as it allows him to engage in  activities that bring him some distraction from his symptoms and to participate in the world- even if it is still in such a limited way.

He also continues to work very hard at building physical strength.  He is doing “bed physio”…with his arms, legs, fingers and hands. Using the support of a walker he is now able to stand up straight for 30 seconds at a time. When he first started using the walker, he could only stand up straight for 5 seconds.  He is also very slowly gaining more control of his hands and is able to hold a Kleenex to wipe his own nose- something impossible for so many months. 

The amazing thing is Riley’s soul seems to be intact. YES really!

 He remains positive and whispered out words a couple of days ago to say that his soul is burning brighter than ever and he is “in there” waiting to be set free and that he never doubts that he will be well one day. He says he is learning so much about himself and feels God in every moment of his suffering. He doesn’t express anger or self pity or despair ever- it’s really quite remarkable!

He senses the prayers and support of everyone around him and feels grateful and hopeful- now THAT IS AMAZING!!!

I have come in contact with other Lyme sufferers who struggle with their will to live because the pain and suffering is so great- so we remain thankful for Riley’s spirit in all of this. We learn from him daily.                                

So what does all of this mean? WHY is he not getting better?? The million dollar question!

          

Our medical team continues to be very committed to his “case”.  Although they have seen patients before with very complicated scenarios like Riley- they usually see more progress by now, so are determined to get to the bottom of his particular issues and help him overcome this horrid disease. Even though there are many factors keeping him sick, three main issues seem to be key (a long and winding tale- hope you can stick with the medical chatter):

Bartonella and Biofilm

Bartonella is one of the co-infections (tick borne bugs) that we have mentioned before in the blog. IT IS NASTY and is contributing to many of the horrid symptoms mentioned above- especially the neurological and gut symptoms.  It is much harder to treat than Lyme.

The bacteria are really good at laying down a protective layer called biofilm.

Bio-what?  Biofilm is basically a slimy saran wrap that coats the bacteria and keeps the antibiotics from getting to them. Great!!  More sophisticated tests have indicated substantial biofilm….sounding more and more like a science fiction movie right??  When appropriate medications are given to break-up the biofilm, significant numbers of bacteria are let loose and the antibiotics can do their job. However, with Riley- because of his trouble with detoxing- this has to be done very, very gently.
Aggressive treatment is not for Riley.

Biotoxins

Another key issue that Riley’s medical team believe is getting in the way of progress is what is called “BIOTOXIN ILLNESS”

Last year while in California, testing revealed he would have a more difficult time with treatment- in particular with the removal of toxins produced from the bacterial die-off. Little did we know then- just how much trouble, or the cascade of other problems he would encounter on his road to recovery.

This testing provides specific insights as to the patient's ability to remove biotoxins effectively from the body. It is estimated that about 20% of the general population will be found to have genetic types that would increase the likelihood of more severe illness if exposed to biotoxins produced from Lyme disease or other biotoxins such as molds.

Once exposed, genetically susceptible individuals are unable to clear the toxins naturally, and that sets in motion a biochemical chain reaction which disrupts normal processes in the body and results in a  disregulation of the body’s innate immune response.

At the core of why one person becomes ill from this exposure and another doesn’t is because of their genetic susceptibility (or predisposition)- what is built into their DNA. When the body is faced with a foreign substance, it immediately begins to process that substance- determining if it is good or bad, friend or foe.  If the body determines the substance as foe, it will develop antibodies to bind and eliminate these substances, called antigens.            

Riley’s body can’t do this on its own. It then becomes a vicious cycle -the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back.  This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms.  His entire body suffers from friendly fire from his own innate immune system, and essentially goes haywire trying to eliminate the foreign toxins.

SO- knowing Riley’s genetic issues, the severity of his symptoms, and the lack of progress with the best Lyme disease treatment possible….the doctors began to suspect other biotoxin issues and ran a whole series of tests on Riley to reveal that not only are the Lyme related bacteria causing troubles for him but likely there is exposure to other biotoxins.- MOLD. We were asked to test of our house to see if there is any evidence of water damage- causing mold mycotoxins. We thought this was far fetched because we can’t smell or see any mold and recently renovated much of our little 55 year old bungalow. UGH!!! Tests have come back and it appears that there is mold somewhere.  The levels of mold mycotoxins (the ones that cause trouble) are way, way higher than they should be. It also fits Riley’s symptom history. REALLY- what next we ask in disbelief? To make this long, long story, shorter- we are in the midst of planning a move out of our house…ASAP.  We must see if this is indeed a contributing factor.  Riley and I will move to a condo and keep Terry and Evan holding down the moldy fort in Wildwood.  We need to get Riley out to see if this helps, and then we can work towards finding the mold and remediating, if possible. We can’t do this with him in the house.  Mold spores travel in the billions in the air, through the heating vents, and on all surfaces.  Water damaged buildings can harbour very large amounts of spores, and often go unnoticed until someone is getting ill from them.  We suspect the damage is in the walls somewhere near plumbing in the basement. It is likely that this sensitivity to mold mycotoxins would never have posed a risk to Riley if his body and immune system hadn’t already crashed from the Lyme toxins. It is a double whammy. All of this has answered for us why we hear of some Lyme patients having a much easier time regaining their health once on appropriate antibiotics to kill the bugs. Their bodies are able to more efficiently deal with the toxins and thus get better. Is there good news in all of this?  We’re not sure.  Fortunately, there is a brilliant team of researchers and physicians finding new treatment options for biotoxin related illness. We have started some of these treatments, and once out of the house, will continue with these. We are overwhelmed by the complexity of all of this, and terrified by the niggling questions and the “what ifs”. What if…moving him doesn’t help?   What if it has been too long and his body too depleted to rally?   What if his body doesn’t respond to the biotoxin elimination treatments? What if we all lose our minds and health in the process? Moments of discouragement and fear are part of our everyday experience right now. Somehow though, we continue to limp along.  Riley’s will to fight all of this and his faith- is our driving force and inspiration.                                      So many of you have asked if there is anything you can do-YES.  Continue to pray and imagine Riley healthy one day.  Keep telling us that we will make it through this terrible nightmare. Your emails, meals, notes, encouragement and practical help keep us going. Please know that your connection really matters and we appreciate it so much. Some practical things we are needing:  Help with errands, grocery shopping, pharmacy runs etc.  I am looking for someone (or a roster of a few) who could commit to a couple of times a week as a “runner”. Unless I have a nurse or our health care aide here, I can’t leave the house, and also Riley’s care is so full time that dashing out for groceries is often not an option. I would be thrilled to hire someone who wanted a few hours/week of this kind of work. RN for IV treatments….we are looking to hire a “back-up” nurse to help more consistently with the administration of Riley’s IV medications. The private homecare companies do not have a pool of nurses able to administer IV meds- this usually comes from Alberta Health Care, and they are not able to help because of the politics of Lyme treatment. We have a great nurse who is helping us now, but often is unavailable to come when we need her.  HELP! Let us know if you know of a nurse who is looking for some part time hours. We would even pay liability insurance so he/she could work privately. We will be moving Riley to a condo within the next couple of weeks. If any of you could be on call for some moving related errands, or could help set up the space before we move Riley there- let me know. It will likely take place the week of the 27th of March. We are so thankful for…. A wonderful health care aide who has become one of the family. Olena is here to help with so many things related to Riley’s care, and quite literally keeps me going.  Evan’s exuberant and healthy 14 year old energy in the house. He is doing an amazing job at handling this difficult family life we are experiencing. He is thriving at school and totally absorbed with his acting and singing commitments.  How our story has helped others find the treatment they need for previously undiagnosed Lyme disease. I am thankful for Terry- who turns 50 years young this weekend.  Happy Birthday Ter! Going to work everyday and leaving Riley is very difficult.  With love and appreciation to all of you for caring enough to keep reading the blog and hanging in there with us.  We appreciate it more than any words on a page could communicate. Warmly, Christine

Buried in Books

                                  

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

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

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

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

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

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

                                                                 

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

With much gratitude,  Terry

BOOK LIST for the Bartonella Birthday Boy

October 26, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Christine

Thanksgiving Rumblings by Terry and Christine

                   Giving Thanks in the Midst of Chronic Crisis

Backyard Fall Beauty...captured by Evan

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

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

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

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

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

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

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

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

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

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

Does this get me down? Of course! 

Do I cry most days about something? Absolutely!

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

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

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

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

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

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

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



Fall Beauty....by Evan

 Terry’s Fall Reflections

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

                                            Early Fall from Eiffel Peak

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

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

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

                               Helliwell Provincial Park, Hornby Island, B.C.

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

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

Thanksgiving blessings to you all, Terry

Love, Hope, Optimism

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

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

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

"Heart to Heart"

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

Treasured memories with Grandpa in Victoria

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

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

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

  

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



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

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

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

Blessings to you all,

Terry and family

Le Tour de Riley

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

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

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

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

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

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

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

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

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

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

With affection,
Terry

An added note from Christine....

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

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

Here is what Riley had to say:

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

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

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

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

 

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

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

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

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

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

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

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

Warmly,

Christine