RIDE FOR PARKER (aka SPARKY)

If you haven't already heard about Daniel and Tanner and the 8,000km cross Canada bike ride they are doing to raise awareness and funding for Lyme Disease then please visit their website (Learn more about the mission of Ride for Lyme at Rideforlyme.ca or visit their Facebook page RideforLyme) 

Each day of their 2 month journey across Canada, they dedicate that day's leg of the journey to a Canadian Lyme patient. They call it a "daily ride dedication" and they post it on their facebook wall along with a little write up about the person. 

Today, they will be riding from Atitokan to Shebandewan, ON and are riding in honor of our son, Parker. It is hard to find the words to express the gratitude we have and how incredibly moved we are to have our Sparky's story and fight honored in this inspiring way.

This Ride for Lyme Daily Ride Dedication is for Parker - affectionately nick-named "Sparky". 

When the shadow of Lyme fell upon Parker's life in September 2009, he was a little boy of nine. When he finally emerged from those shadow-lands in May 2014, he was a young man of fourteen. He experienced 7 glorious months of remission. Then, in January 2015, Lyme returned with a fury; once again casting its ugly, all-consuming shadow upon his life. 

He has now been essentially bedridden since March 2015. His days are pain-filled, long and isolating but he is not one to complain or be bitter. His sweet smile is always accompanied by a positive or witty remark and he gives the best. hugs. ever. Yet his grief & loneliness over being cut off from life again and deep discouragement over being back in a place of great suffering are palpable. 

His recent relapse has been a gutting and devastating blow for our entire family. Hopelessness is a pervasive feeling we daily struggle with. Yet we solidly believe this: there is a road out of this disease and into remission for every person fighting Lyme. We found Parker's way out once and we hold on to the hope that we will find it again. Healing is possible!

Hope in front of Parker. Hope is in front of each of us.

Parker on the beach in Santa Cruz, CA during a visit to his Lyme doctor (LLMD) in January 2014. At the time, we had been flying to California to see his LLMD every three to four months since December of 2009. This was the FIRST trip he ever made without his wheelchair in all those years. This trip was significant - we could see that he was finally emerging from the shadow-land of Lyme.

THE DESCENT 
Sept 2009 to Dec 2009 

Our Sparky boy, September 2009

Parker went from healthy and active to wheelchair-bound in six weeks. Over the following 3 months, he was seen by countless specialists, underwent a multitude of tests and was hospitalized numerous times at BC Children's Hospital. No one could figure out what was making him so sick. He had 60 of the 75 symptoms of Lyme, yet doctors refused to consider Lyme. In fact, a BCCH Rheumatologist told us, "It is impossible to get Lyme in BC."

THE MISDIAGNOSIS

He was released from a week long hospitilization with a diagnosis of Idiopathic Pain Syndrome and Movement Disorder. The treatment plan included physiotherapy, pain management, psychology and antidepressants. He did not improve at all. In fact, he deteriorated further. 

Our Sparky boy lost his spark. 

Dad had to take a leave of absence from work in order to help care for him. There were many sleepless nights. We began questioning his diagnosis. Research always led us back to Lyme. Combing through his medical files, we discovered a positive lab result for an infection associated with Lyme. this was news to us. We had been told by Infectious Disease doctors in the hospital there was no evidence of infection. Shortly after this discovery, we made an appointment for Parker to be evaluated by a leading Lyme doctor in the USA.

THE DIAGNOSIS
Dec 2009

Doctor's notes 

By the time he was finally diagnosed with Lyme, Babesia and Bartonella in December 2009 by a Lyme doctor (LLMD) in California, he was an emaciated shell of his former vibrant self. He could no longer walk, feed or clothe himself. 

Skeletal and covered in rashes

The delay in diagnosis meant Parker's infections were deeply entrenched and life-threatening. His USA LLMD started him on aggressive antibiotic treatment immediately and told us to prepare for a long and brutal fight.  

THE COST OF IGNORANCE 


With a lab-confirmed diagnosis and treatment plan in hand, we returned to Canada with high hopes Canadian doctors would partner with his USA LLMD to provide treatment. This did NOT happen. BCCH doctors harshly criticized his diagnosis, scoffed at his positive blood test for Lyme, and refused to work with his USA LLMD.

Parker, February 2010

Parker was abandoned by our health care system.

The ignorance of lyme in BC and systemic bias against treating it in Canada nearly cost our son his life. It cost us too; physically, emotionally and financially. For the next 5 years, his medical treatment was under the care of his USA LLMD - and paid for out-of-pocket by us.


THE VALLEY OF THE SHADOW
Dec 2009 to Oct 2013

Parker with his Second of Three PICC Lines,  February 2012, Seattle, WA

It has been said that fighting Lyme is a marathon battle of one step forward and two steps back. This was very much the case for Parker. The years of treatment that followed his diagnosis were a marathon of setbacks; debilitating fatigue, unremitting joint pain, cognitive decline, hallucinations, seizure like tremors, migraines, sound and light sensitivity etc. During this time frame, we often felt like we were living in the valley of the shadow of death. Our Sparky boy could rarely walk independently and was too ill to go to school or play with friends. His childhood was consumed by daily regimens of IV meds, pills and doctor's appointments.   

SIGNS OF LIFE
Oct 2013 - May 2014

Finally began to see sustained levels of progress with fewer setbacks. Parker was able to walk more steadily for longer periods of time and with less pain. Then came that first epic trip in which he traveled to see his LLMD without his wheelchair! As the months progressed, he was finally able to ditch his wheels for good! He began intensive physiotherapy to rehabilitate his body.

REMISSION and RESTORATION!
Summer 2014 - January 2015

Parker, Train Wreck Trail, Squamish, BC, Summer 2014

It's official: Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!  

He returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve. Yet his transition went remarkably well! He made friends, had sleepovers, and hung out. 

He made his high school basketball team! The goal of playing varsity basketball was a dream he had held on to through his long years of illness!

He discovered new interests: long-boarding and mountain biking. His Dad, who has run a mountain bike club in local high schools for 15 years, was elated! Parker proved to be a natural rider - effortlessly ripping single track on trails all over the lower mainland - from the North Shore to Whistler. He easily blew past dad, leaving him to eat dust.

Parker - Killing it in Whistler, BC, Summer 2014

During this time, we still found ourselves caught off guard just seeing him effortlessly walk into a room, so the sight of him on a bike or on the b-ball court felt completely surreal. It was a miraculous sight to behold!

ON TOP OF THE WORLD
January 2015

In January 2015, he went on a four day back-packing trip with his class to Tetrahedron Park (near Sechelt, BC). He was one of three students who completed the climb up Mt Steel (summit 5400+ feet).

Parker and classmates on top of  Mt. Steel, January 2015

He came home pumped and looking healthy and vibrant after this mountain-top experience. Through the long dark years of his illness, we had always held on to the hope that he would recover but never in our wildest dreams had we ever anticipated his recovery would be so full and complete. We finally felt it was 'safe' to exhale and fully embrace his recovery. We were all on top of the world!

Three days after the trip, he got sick. We hoped it was "just the flu" but as the weeks passed and we once again watched our son deteriorate that hope faded.

RELAPSE
March 2015 to present

"We are stumbling numb through a twilight zone we dared to believe we'd left behind - how do you even find the words to explain the devastation of relapse." ~ Sparky's Mom (excerpt from "Reality of Relapse" blog post, March 2015)

In March 2015, his relapse of Lyme and Babesia was officially diagnosed by his LLMD in California.

Since January 2015, aside from a handful of days, he has been essentially house -bound. Most days it is a struggle just to get from his bed to the couch. He is no longer able to attend school. In the five months since Parker relapsed, he has received one get well card and a few cherished emails. We can count on one hand the number of visitors he has had. He feels very alone and forgotten.

GOING THE DISTANCE!

We know he is loved and prayed for but, for whatever reason, those sentiments rarely make the transition from thought to action. Practical helps and physical presence is sorely lacking for him and our family).

Why? That's a question we often ask. Is it a case of "out of sight, out of mind"; or not believing the patient is as sick as they say they are; or is the withdrawal simply because folks just don't know what to do or say. Whatever the reason(s) - the silence is deafening and the retreat is deeply wounding. It is challenging to help our son process this when we ourselves do not understand it.

For years, the only wheels Parker rode were attached to a chair.

This is a delicate and difficult part of the journey to share. Being vulnerable is risky.

Parker would never ever want to be pitied. We felt it important to acknowledge this part of his journey because this troubling aspect of Lyme is not unique to our family. Feeling isolated and abandoned by family and friends is an all too common experience in the Lyme community. The road to recovery is a long and arduous one. Very few friends and even family members have the stamina to go the distance. 

Daniel and Tanner, this is exactly why we believe your Ride for Lyme means so much to so many.

You guys are going the distance for each and every one of us that has felt pushed aside, forgotten and abandoned. 

Today, as you specifically ride in Parker's honor, he will see love in action. He will know his story matters because two men he has never met are going the distance for him. As he sees the pictures of you on your bikes, he will know that his pain and suffering are being carried across Canada in your hearts and legs. 

Daniel and Tanner, your ride is love in action. Thank you from the bottom of our hearts! Thank you for going the distance for our Sparky boy, Parker. Thank you for going the distance for all of us. For Lyme. For Hope. 

Ride on, Ride for Lyme, Ride on! 

With immense gratitude and appreciation,
The Goertzen Family
Graham & Shannon
Taylor, Parker, Avery & our fur-baby, Harrison #lymepooch

A PERSONAL INVITE

local friends, a lyme awareness evening is coming to tsawwassen, BC and you are invited to attend! it is an evening that is designed to raise lyme awareness and educate GPs, vets, and the community at large.

Thursday, May 30 at 6:30pm

The "Little" House

5061 12th Avenue

Tsawwassen, BC

good friends of ours, sharon, mike and karen, have worked very hard to make this event a possibility. this invite is accompanied by sharon's personal story. she has given me permission to share her story.

but first, a bit of background.

sharon and mike have become good friends. we came to know them when they quite literally arrived on our doorstep one afternoon feeling as though they were out of hope and out of options. they suspected that sharon's debilitating symptoms were caused by lyme. after all, she had been bit by a tick in nelson, BC and had had a peculiar rash. yet, doctors dismissed this finding when her Lyme test returned a negative result.

i remember our first meeting as clearly as if it were yesterday. sharon's pain and suffering were palpable - and i was all too familiar with the desperation, the confusion, the sense of abandonment and the fear that her and her husband felt in the face of her desperately declining health and not knowing where to turn for answers or help
and 
i didn't know how to help. at that time the only viable treatment options were south of the border. it was a difficult day. it stayed with me for a long time. 

to see your life or the life of your loved one slipping away and be abandoned by your doctor and medical system is nearly inconceivable. yet, this is the reality of a lyme patient. 
this. must. stop. 
yet, as long as lyme is regarded as a four letter word in our health system and the general public is not adequately made aware of the risk, sharon's story will not be the last.

preventing this from becoming someone else's reality is the fire that fuels those of us with lyme to so doggedly and determinedly spread awareness and educate the public.
please come out and show your support and learn how to protect yourself and your loved ones. 
ticks know no boundaries. 
everyone is at risk.

SHARON'S STORY

Dear friends and family,

As many of you know, I have been unable to work since February 2011 when a mysterious ailment had me in emergency room with excruciating pain, leading to a substantial decline in cognitive ability thereafter.    

Hundreds of tests were run for every obscure disease under the sun.  I was hospitalized twice: once for four days, and then again for a two week period where doctors ran intensive tests.  Eventually at one of the many specialist visits, Lyme disease was suspected.  The standard initial Canadian Lyme test was done and came back negative (we have since learned that this particular test is highly inaccurate).  After seven months of going from specialist to specialist, a friend who had gone through a similar experience consulted with me.  Mike and I ordered the tests he recommended from a private certified lab in the USA.  We reviewed them with the Doctor from the lab and were informed that I was 98 percent positive for Lyme disease.      

In the process of trying to get help, we lost our family’s doctor of 20 years.  Doctors are reluctant to treat and most lack the knowledge of how to do so.  At a time when I was in immense pain, I felt abandoned by the Canadian health care system.  Mike’s employer gave him permission to work from home three days a week in order to care for me, with family and friends filling in on the days he couldn’t.  It was a very difficult period.  We will be forever grateful for the people that organized and helped us with meals, prayers & errands during this time.      

We were advised by others that I would need to go the United States for treatment by a Lyme literate medical doctor, but I was too ill to travel.  In September of 2011, Mike and I found a Naturopath who could prescribe antibiotics (plus support supplements) and since then I have been receiving treatment.  Getting better is not an easy process.  If my medication is reduced for any length of time, I rapidly regress.  Some people never recover and others spend decades trying various expensive treatment protocols.  Our own costs have been substantial.  However, there are a few bright moments such as this past weekend.  Accompanied by Mike and others we traveled to the Victoria Legislature Buildings for a Lyme awareness event.  I met others with Lyme disease and spoke with Elizabeth May (MP), Lana Popham (MLA), David Cubberley (retired MLA) among others.  The drawback to a day such as this is many days afterwards in bed.  

I am not alone in this situation.  There are hundreds of people with Lyme disease in BC.  Many never saw a tick or knew they were bitten.  It's not just a disease that attacks campers and hikers as people have been infected in their backyards gardening, on school field trips or just walking their dog.  We know of people in every area of the lower mainland with Lyme disease.

A friend of mine, Karen, whom I met through The Vancouver Lyme Support Group, was the interior designer of “The Little House” in Tsawwassen.  They have graciously offered the use of the building and their assistance to hold a “Lyme Awareness Evening”.  

On Thursday, May 30th at 6:30 pm we are inviting Dr. Murakami (a retired BC Doctor and Lyme expert) to speak.  The evening is designed to explain preventative methods, early signs and symptoms, late symptoms, how to properly remove a tick so that it doesn't infect one further, treatment protocols, et cetera.  Gwen Barlee, the policy director for the Vancouver Wilderness Committee, will speak to the political issues surrounding the disease.  Mike has been asked to speak to how this specific disease affects a family.  There will also be a Q and A.  A poster with more details is attached.  

It would mean a lot to me if you would come out to show your support.  Thanks for your time.  

Sharon