June 4, 2015

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






May 31, 2015

DEAR RIDE FOR LYME




Dearest Daniel, Tanner & Ride for Lyme Support Team;

There are many parallels that can be drawn between the road traveled by Chronic Lyme patients and the journey you, Daniel and Tanner, have undertaken with your Ride for Lyme.

Fighting and living with Chronic Lyme is not unlike the terrain you have encountered thus far as you pedal your way across this great country of ours - from the grueling climbs of the mountain passes to the long, barren stretches across the grand expanse of the Canadian prairies. 


As you relentlessly push forward through each valley and over every peak, you become more conditioned and better equipped for the trials and unforeseen forks in the road this journey will take you on. Even so, and as it is with living with Lyme, it will never get easier to maneuver the unforeseen bumps in the road - the potholes, the nails and flats yet to be encountered. There are sure to be days that will empty you of every single ounce of energy and you will wonder how you will find the strength to keep going... day after day after day. There will also be days you hit your stride and just cruise along... sun warming your head and wind at your back. 



Much like Lyme, this ride will take everything out of you. Most likely, you will mentally, emotionally and physically hit the proverbial wall - maybe even more than once. It will require more strength, more perseverance, more stamina than you have ever imagined you are capable of. 


Along the way, you will encounter some of the most courageous, caring and resilient people you have ever met - the Lyme patients themselves. And you will learn just how the land and your ride mirrors the effort it takes to live with and the fight that it takes to heal from this insidious disease. We have no doubt that these warriors will lift you up, support you and cheer you on towards the finish line. That is what the Lyme community does for each of its own. And you guys are one of our own now.


You will have to dig deep in order to keep moving forward in your pursuit of that finish line and yet...we have no doubt that you will finish. In fact, you will finish strong and changed. Forever changed. Stronger. Braver. More appreciative of life. Awed by the capacity of the human spirit and body to endure. More compassionate. More open. More aware.  Lyme has a way of doing that to people.


Thank you Daniel and Tanner for being that visual representation of our journey with Lyme & the road to recovery... for showing us that every journey has a start and a finish line. In much the same way that every Lyme patient has a start to their story - stories and lives that matter very much and are finally being heard through your daily ride dedications and interviews with the media - even though, few have crossed their finish line yet...we believe that each and every one can find their way across the finish line. We truly believe that there is a road out of this disease for everyone and that healing and recovery is possible.

We hope and pray that Ride for Lyme will pave the way for the diagnosis and treatment of Lyme Disease in Canada...and that each and every story told along the way will be the spark that ignites a flame of awareness, compassion and care across our country. 

Ride on, Ride for Lyme, Ride on!

With deepest gratitude, 

Graham and Shannon Goertzen
Taylor, Parker, Avery and our fur-baby, Harrison #lymepooch




Info about Ride for Lyme: (source: canlyme.com press release)

"At sunrise on May 11, 2015, Niagara, ON natives, 22 year old Daniel Corso and long time friend, Tanner Cookson began their 8,000 km bike ride across Canada to raise awareness and funds for Lyme Disease. 

The ride began in Victoria, BC at the Terry Fox "Mile 0" mark. The goal is to complete the ride in St. John's, Newfoundland by July 7, 2015.

A close Corso family friend, 24 year old Adelaine, who suffers from Chronic Lyme Disease, was the initial inspiration for the ride; however, after learning the Canadian Health System does not recognize, effectively diagnose or provide treatment for the thousands of Canadians infected by Lyme, the ride became crucial.

"We will be riding across the country this spring to give hope to those who suffer from the disease." added Corso

What Ride for Lyme wants to accomplish:

1. Raise $100,000 in donations for Canlyme for Lyme research
2. Appeal to the Canadian government to address the need for effective testing in Canada
3. Bring awareness to the sympotoms, testing and treatment of Lyme

Please visit the Ride for Lyme website at:
Rideforlyme.ca

Be sure to follow the Ride for Lyme journey on social media -
Facebook - Ride for Lyme
Twitter - Ride for Lyme @rideforlyme
Instagram - RIDE_FOR_LYME

As of Saturday, May 30, 2015, the dynamic duo has already reached Winnipeg, Manitoba!






May 1, 2015

DEAR EXTRAORDINARY & BRAVE SPROUT


our dog harrison is a rather unique dog with an unusual skill set - he dabbles in DIY projects, sews, tweets, loves plaid, surfs the internet, never tires of eating cheese and recently has been moonlighting as a Lyme PAW-ster boy and advocate (aka #lymepooch).

(read more about harrison here or visit his facebook page here). 

harrison also has a really big heart for kids with lyme. he was on the computer more than usual this week - turns out he had some stuff he needed to get off his chest. i let his paws do the typing which ultimately culminated in him writing a very special blog post for kids with lyme. 

so, yes, you are about to read a blog post written by a dog. will wonders ever cease? apparently not as he also has excellent punctuation and command of the caps lock key. unlike me.

so without further ado, i hand over this post to our wonder pooch, harrison...




Harrison here...so it's been a pretty ruff here since Sparky started his new treatment and it's made him really sick. His heart hurts too. I can hear the aching in it. And I'm feeling sad about that.  


And you know what? I can feel the heaviness and hurt in my people's hearts too.


It's got me thinking -  I bet there are a whole lotta other kids with lyme in need of a big ol' lymepooch smooch because I can actually hear the aching in each and every one of your brave and bruised warrior hearts. (Dogs have exceptional hearing) So this goes out from my heart to yours...


Dear Extraordinary & Brave Kids with Lyme,


I know what you are dealing with bites. Big time. In fact, it downright stinks!




I can feel the way your tender little heart is heavy and weighted down by this battle. And that life just feels scary and hard and really, really tiring.



You've probably grown really weary of taking all your meds - especially when they make you feel sicker. I know it's super duper hard to keep taking them when they don't seem to be helping. Chances are you are probably thinking,

"What's the point of taking all this stuff when it's not making me feel better or grow stronger?"


Have you ever wondered about how things grow? I sure have. I live in the city and I don't have a back yard where I live so I don't have much experience gardening. But I like learning about stuff, so one day I planted a little seed.




I had to bury that little seed way down deep in the dark earth - far away from light and life. Then I had to take care of it. I had to water it, feed it and make sure it got some sun. And that was kind of weird to do because all I could see was a little pile of dirt. 




Do you know why it was super important that I keep taking really good care of that dirt pile? Because my tiny little seed was actually sprouting way down there in the dark! Even though I couldn't see any signs of life, that little sprout was growing every single day. 





It takes a really long time for a little seed to sprout and then grow strong and tall enough to push through the darkness into the light. 

It was really frustrating and tiring to do all this stuff to take care of my seed when all I saw was a pile of dirt and no signs of life. It was really hard to even believe that my little seed was sprouting and growing underneath all that dirt. I had to be so patient and just trust that all the things I was doing to take care of that little unseen seed was really helping it to sprout and grow.






It's kinda the same with lyme treatment. You gotta trust that what your parents and doctors are telling you to do is helping you heal and grow. You have to keep believing that all those pills and IVs and water and healthy food is actually helping your body heal - long before you feel stronger or healthier. 

Here's the thing - I can't tell you exactly when you'll finally feel better...but with absolute certainty, I can tell you this: 

You are extraordinary,
you are brave,
and
extraordinary and brave people overcome bad stuff every single day!

You are one of them! And just like that little sprouting seed - you are growing stronger and healthier every day - even if you can't see or feel it right now.



I know it's really hard to even believe that you are extraordinary and brave when you feel so bad and have been sick for a really long time.

Chances are that sometimes, late at night, as the world sleeps, you lay awake in a crumpled heap of pain staring into the dark of the night and you feel very alone, very small and very scared.

Chances are you think about a lot of tough stuff and maybe you've got some secret fears and worries;

Like how bewildering it is to live in a body that works for an hour or two and then quits for days on end.

How some of your symptoms are so scary you can't find the words to describe them.

How some of your symptoms are so confusing that you hide them from your friends and family.

How sometimes you don't even tell your parents how bad you hurt cuz you don't want to worry them.



Chances are you worry about the future - you wonder when or if you will ever get better. If you were born with this disease maybe you've even thought you were destined for a lifetime of sickness.

Chances are you've lost friends and sometimes strangers stare when you roll by 
and maybe all of that makes you think that somehow you are unlovable, unworthy or weird. 

Chances are you've had some teachers that didn't believe you when you said you were trying your hardest but sometimes it's just really hard to remember stuff or read or write. Maybe they even said you were faking it or just being lazy.  

Chances are you've had some doctors tell you they don't believe you are sick. They may have even been downright cruel and laughed at you and said you were just using your wheelchair to get attention.

When people, especially big people that are supposed to help us, don't believe in us or say really hurtful things or even bully us, well, that is super confusing, frustrating and maddening. It can bruise your heart and tear you down. It can even make you doubt yourself or hate yourself.

I know that sometimes all of your thoughts and feelings get all twisted up inside you. Sometimes they make you explode and cry and scream and rage. I know how sad and confused and maybe even ashamed you feel when that happens.



I want you to know that it is perfectly normal to feel and think about these things. I also want you to know that not every thought we have is true! Thoughts can be real tricksters - sometimes they lie to us and when we believe those lies, we start to feel really bad about ourselves. In our house, we call that stinking thinking!

Stinking thinking can make you think that the bad things that happen are somehow your fault or you deserve them or that things will always be really bad.

I know that sometimes you think that maybe it's some how your fault that you are sick - maybe you told a lie once or were mean to someone or got sassy with your parents and that's why you are sick. Maybe you even think you did something so big and bad that you actually deserve to be sick and in pain.

Dearest beloved sprout - it is not your fault that you are sick or not better yet.



I know that sometimes it is really hard to remember stuff or write or read but that is not you - that is the bugs in your brain. You are not bad or dumb. Those bugs are! This suffering that you are enduring it has made you kind, thoughtful and wise beyond your years. 

And that wheelchair that you are in - you didn't choose it for attention...you use it to DO life... even when it is hard, you hurt all over and you know people are going to stare, you get in that chair and show up to do life the best way you can right now. Can you see how extraordinary and brave that makes you?

Dearest extraordinary and brave sprout - you are NOT lyme!  You are SO MUCH MORE than this thing that has taken up residence in your body. 



You are just like that extraordinary and brave little sprout - you are an unfolding miracle, a downright masterpiece, a lovable, worthy, tough NINJA sprout that is growing and healing in spite of all the dirt and darkness that surrounds you.

You know how I know that you are extraordinary and brave?

Because you woke up today and even though you felt horrible and it feels like everything stinks, you kept fighting.

WOAH - something here actually does stink for real! 
Oh, wait, my bad, I just farted!
Pardon me!


OOPSIE POOPSIE!

I think you just smiled, didn't you?


Farting does that to people - even big people (but sometimes they act all huffy and proper about it cuz they're a bit embarrassed by it. The thing that is funny about that is the older you get the more you fart because you have less control in that area of your body!)

I bet you're grinning now... maybe even giggling a bit.

You know what?
That makes you extraordinary & brave - because, in spite of how bad you feel, you are smiling.

Just PAW-se for a moment and think really hard about that.

You just smiled... 
Maybe you are so sick right now that you haven't been able to leave your bedroom for days, or play in weeks, or got to school in years -  yet you are sitting there smiling.

That makes you extraordinary. And brave. Really, really brave.

You are NOT lyme - You are an extraordinary sprouty-person living a really brave life.

I see that. 

There are going to be days when it gets really, really hard
and
hurts more than you think you can bear 
and
you are not going to feel extraordinary or brave.

When you have a day that just stinks so bad, I hope you'll remember this...

You are an extraordinary sprout living a really brave life and this gassy pooch is rooting for you. I love you and I believe in you.

Affectionately yours,
Harrison Phineas Goertzen, #LymePooch