August 4, 2015

HOLA FROM ENSENADA


The Hubster, my girl and the rest of the Project Serve Mexico Team (‪#‎PSMEX15‬) are in Mexico. Avery wrote a blog piece about the trip thus far (they've been gone 6 days already!). There is an excerpt from her blog piece below...but please visit the Youth Unlimited Blog or their FB Page - "Youth Unlimited (Greater Vancouver)" to read the whole post and see pics of the team. The team will be updating through out their trip so make sure to check it daily!


And it'd be super rad if you "liked" or dropped them a little "hello" on either site. I know the team would appreciate hearing from you! 

PSMEX 15 BLOG EXCERPT: 

"The trip has been eventful thus far, and will continue to be for the next nine days to be sure! Our team is learning more and more how to put the needs of others before ourselves and have servants’ hearts in ways that we may have not ever imagined. The Bible tells us that “where your treasure is, there your heart will be also.” And it is a privilege to be able to serve here wholeheartedly in this special place with so many special people." 
~Avery Goertzen

Click Here to read full post and see pictures

July 31, 2015

ADIOS AMIGOS



the hubster and my girl left for mexico on wednesday (july 29).


the two of them, along with a team of 40 (youth, adults & a flamingo named Floyd) are driving to Ensenada to serve in a local orphanage. This is the hubster's third "Project Serve Mexico" trip and my girl's first trip!

please keep them in your prayers - for the Hubster as he provides leadership for the team, for safety on the road (canada to mexico is a LONG drive), cohesion & bonding as a team and for energy and joy while serving in the orphanage!

also if you could pray for those of us (spouses & family members) left behind that would be appreciated. they will be gone for 2 weeks so it's a long haul for everyone!

if you would like to follow their journey or are simply just curious about floyd the flamingo, you can find, like & follow them on social media sites listed below:

Twitter:  Search for PSMEX15 and follow us
Instagram:  Search for PSMEX15 and follow us
Facebook:  Like us on www.facebook.com/GVYFCYouthUnlimited
Youth Unlimited Blog: Visit the website http://www.youthunlimited.com/blog/

pink floyd

July 28, 2015

THE STINGING TAKE-AWAYS


so this is me after i got stung by a wasp yesterday...



i know. clearly a bit dramatic.
but, in my defense, it was no regular, run-of-the-mill sting nor standard reaction.
Oh NO, of course it was NOT NORMAL AT ALL because I am Queen Bee of peculiar and bizarre things happening to me.

(and just so you know, as it turns out, taking selfies is a pretty effective distraction for pain.)

i was out for a walk in our neighbourhood park and a wasp plowed into my face...actually, to be exact, it flew with pin point precision right up under my glasses and got stuck between the arm of my glasses and my temple. No lie. 

WHAT ARE THE CHANCES?

clearly, it did not appreciate the shaded UV protection offered by my specs, as it immediately backed its butt into my temple and stung me.

i reacted by screeching loudly, whipping off my glasses & frantically slapping myself upside the head. despite my ninja like moves, the stinging continued & this odd electric shock-like burning pain began rapidly spreading across my face. i had no idea if this was normal or the start of an anaphylactic reaction so i panicked. then i did the next logical thing - i made a bee-line for home...and i did not retreat quietly nor gracefully.

nope. not at all. shrieking trilly, with my arms flailing and karate-chopping the air, i half-walked/half-jogged through the park as fast as my on rubbery, shaky legs could carry me. i left stunned, mouth-gaping park goers in my wake.

i made a spectacular sight. in fact, i'm almost certain i darn near nailed the running style of Phoebe Buffay from Friends




by the time, i haphazardly stumbled into my house, my face was ON FIRE. the pain was radiating into my jaw and the entire left side of my face had this odd numb, swollen, burning sensation. i was sure my face & head must be astronomically puffing up.

i texted the Hubster to come immediately;

'SOS - I got stung by a wasp. in bad pain. come quick. FYI - don't be alarmed but pretty sure my head is swollen the size of a watermelon.'

then i took a deep breath and bravely checked my face in the mirror hanging in our entrance.

there was one, teeny tiny, very minuscule red dot at the sight of the sting.
NOTHING ELSE.
no swelling. no angry redness. no splotchiness. no hives.
not even one itty bitty bit of puffiness.

i looked nothing like how i felt.
ironic how bug bites have a way of doing that to me.

despite my normal appearance, my face was burning something fierce, so i made a bee-line for an ice pack.

the hubster appeared then. and i told him how that wasp so precisely flew directly into that spot between my head and glasses. and how it stung me and how bad my head was burning and how choked i was that i had NOTHING to show for my pain.

"Like, what are the chances?!" I exclaimed.

to which he dismissively replied, "Actually, that probably happens more often then you'd think."

and i indignantly huffed, "NO WAY! This is NOT normal. This is rare - my experience is UNIQUE. Flukey things ONLY happen to ME. Do NOT take THAT away from me."

and my girl, overhearing our conversation, gasps "AWH poor thing!"

and right as i'm ready to bask in the light of her sympathy she continued,  "She must have been so scared when she got stuck in your glasses.  No wonder she stung you."




The Stinging Take-aways;


  1. my girl values the emotional distress of a wasp more than my physical pain
  2. i have a propensity for acquiring bug bites that give me pain that is invisible to the naked eye
  3. taking selfies is an effective pain management technique
  4. i could be a stunt-double for Lisa Kudrow
  5. i have had very intense noise sensitivity and brain fog for the past week and a bit. interestingly, 6 hours post-sting, those symptoms suddenly lifted. i am now 24 hours post-sting and am still brain fog and noise sensitivity free. coincidence? maybe or maybe not.

i am currently researching bee venom therapy for lyme disease. i'll keep you posted.

July 27, 2015

MY GIRL


my girl... with the aquamarine eyes and tender heart that brims with sweet sensitivity & compassion for all living creatures; great or small; furry, feathered or scaled; she loves them all.


CUDDLING A BABY JOEY NAMED VICTOR
 (Kangaroo - 2 weeks out of the pouch)
Kangaroo Creek Farm - Winfield, BC

she is beauty and light and joy amidst suffering and heartache.

she is equal in witty repertoire and insightful musings.

last night she wrapped her arms around my neck, breathed in deep and murmured, "i could just hug you forever. i love you and dad so much. i mean, i have always even deeply liked you guys...but recently i've become aware of how much i deeply value you."

and my heart beat wild and fierce in my chest. and i hugged her tight and wished with all my might that i could freeze time.


SHE LOVES ALL CREATURES. BE STILL MY BEATING HEART!

i marvel at the gift this one is. and i hope and pray that i can raise her to always deeply value and love herself and the one who created her.


July 13, 2015

THE HOLIDAY WIPEOUT


we had the opportunity to get away to a friend's condo in the Kelowna area this past week. we were grateful to take take a trip that does not, (er, well was NOT supposed to) involve doctor's appointments or medical treatment. since we started having to travel to the USA for medical treatment in 2008, much of the hubster's vacation time has been eaten up by trips to Seattle, WA to see DR D, San Fran, CA to see DR H or other medical related travel and doctor's appointments. 

the past several months have been a chaotic gong show. parker's relapse, another family member's extended hospitalization, my own ongoing health challenges have really taken a toll. especially on the Hubster. so we were hoping this week away would provide some rest and respite. 

the primary symptoms that parker's struggling with on a daily basis are severe joint pain, insomnia, brain 'loopiness' and intense fatigue. these have been intense enough to keep him on the couch or in bed most days. however, in the 3 weeks leading up to this holiday, he had been having a few 'up moments' on some days. he had even felt well enough to get out for a several bike rides and swims. we were hopeful that parker would have a few 'good days' while we were away so that we could all enjoy a few fun outings as a family.

the one foreseeable hurdle was the pretty pill protocol. (read blog post about that here) he was scheduled to start it the day before we left. the timing of this was a bummer - as often any new protocol targeting his multiple infections will cause an increase and intensity in his symptoms. (these flares are called "jarisch herxeimer reactions" aka "herxing".) a herx can last anywhere from a few hours to several weeks - many factors play a role in the intensity and duration of a herx.

the first 48 hours on the pretty pill protocol were rough for parker. 12 hours after beginning the pretty pill protocol, he was hit hard with herx. this coincided with our travel day up to Kelowna (about a 4 hour drive from our home). he was fine for the first 2 hours of the drive and then he was suddenly taken down by sharp and intense pain. he described the pain as like being stabbed with a knife and having glass rubbed into the cut. the pain was primarily in his face and head) while this may sound a bit bizarre, this is a very typical symptom experienced by lyme/bartonella patients) it really knocked him off his feet.the remainder of the drive, was spent with him hunched over, hands clutching his head and moaning in pain.  he spent the majority of the first 2 days of our get away in bed with this pain.  as brutal as he felt and as hard as it is to see him suffer, the severe and sudden increase in symptoms is actually a positive sign that these new meds are targeting the infections. 


on the afternoon of our third day, he rallied and his pain became more manageable. he asked if we could go for a bike ride. riding brings parker great joy and feeds his spirit. we were happy to oblige! biking is something we enjoy doing as a family (ok, avery is not a huge fan of it but she takes one for the team.) it is rare for us to be able to do activities as a family so it is not something we ever take for granted.

the Hubster is especially keen on it. he has been running mountain biking clubs in east van high schools for 20 years. he has also spent many years yearning for the day that parker would be well enough to ride with him. when this finally happened during parker's remission last summer, parker took to biking like a fish to water. he quickly developed a passion for it and demonstrated a natural ability. much to the hubster's delight, parker rapidly became a very skilled and competent rider. 

recently, parker received a new bike. lighter. faster. fitted to him. this was due in a large part to the generosity of a young man named steve, who is a mountain biking enthusiast himself. the Hubster has known steve for a long time - when steve was a teenager he was in one of the Hubster's riding clubs...steve still looks 12 but he's actually in his 30s). this makes us feel old. 

parker has been anxious to get out and break in his new bike but just hadn't been well enough to ride since getting it. so when he declared he felt well enough to go out, we geared up and headed out right away. keeping in mind his physical challenges, we set course on a pretty placid, beginner trail. we weren't out for long before parker's lyme symptoms flared and he began to feel really sick. he got off his bike and lay down to rest for a bit. this did not help. he felt miserable and just wanted to get back to the condo. we immediately turned around and headed back. 

several minutes later he wiped out.

we did not see the actual crash as he was ahead of us and had just rounded a corner when it occurred. avery and i were the first to come upon him. this was traumatic for avery. parker has no recall of the crash at all. he was bloody, dazed and confused. he could not tell us where he was, what month or day it was, what he'd eaten for dinnner the night before or what had happened.

the short term memory loss, disorientation and rapidly developing goose egg on the right side of his temple earned him an instant trip to the ER. 



so much for a doctor and hospital free trip.

he is being treated for a concussion. he had to have complete rest and no brain stimulating activities (no electronics, reading, xbox, listening to music etc) for the following 24 to 48 hours. he has a black eye, swelling, abrasions and a cut on his right temple. he has a line of contusions, broken blood vessels and bruising running along the right side of his scalp - even though this part of his head was covered by his helmet. the right side of his body and head are most likely the areas that took direct impact and the brunt of the crash. the left side of his body is also bruised and covered in road rash so it is likely he rolled and slid on impact. his left hip and left shin are bruised and sore as well. 



at the hospital the doctor was assessing him and asked him what  number his pain was on a scale of 1 to 10. 1 means no pain. 10 means worst pain ever.

parker described his pain as a level 4. the doctor was taken back by this and questioned his response, "a four? really? did you understand the pain scale? the lower numbers mean low pain. a one means no pain!"

parker assured him he understood. (they have no idea how well acquainted he is with 'the pain scale'.

"woah, you are one tough guy!" the doctor exclaimed.

the nurses had to scrub and clean the dirt and debris out of all his wounds. he grimaced twice but did not flinch or wince. (i cringed the whole way through). the nurses could not believe how stoic he is nor how high his tolerance level is for pain. they kept telling him how amazed they were by him.

i kept thinking you don't know the half of it.




this kid is amazing. he is a warrior. no matter how painful his life is he just keeps fighting his way through it. he has learned to cope and function in spite of living with a level of pain most folks cannot fathom. he has been in ERs and hospitals countless times before in agonizing pain due to lyme. often describing this pain as an 8 or 9 out of 10. yet because his pain is 'invisible' and caused by a disease that is not considered real, his pain is dismissed as being faked and/or attention seeking behaviour. or perhaps, not near as bad as he says it is. we've been told that "some kids just have a very low tolerance for pain - often because they are more anxious than the average child."  we've been sent home from ER visits loaded down with resources on how to parent your anxious child or referrals to psychiatrists/psychologists.



now take same exact kid and arrive in ER with him describing visually gnarly wounds as only a level 4 and suddenly he's hailed as uber tough and amazing. 

the irony gives me a level 10 headache.

life is not fair. we know that. we don't expect it to be. we also know that the outcome of this crash could have a lot worse. we are very, very thankful he did not suffer more severe injuries. we pray that the trauma his body and head sustained will not further aggravate his lyme. the one upside to all of this is that he is finally sleeping at night (most likely because of his concussion). he has had pretty severe insomnia since january so we are all happy he is finally getting some sleep.



but let me be frank, THIS BITES. IT HURTS. BIG TIME. his crash is a blow both physically and emotionally. for the past 6 months, parker's "good days" have been so few and far between so to get taken down on a "good day" while doing something he loves but so rarely can do is like adding insult to injury. we are now 6 days post accident and he is healing. it is nice to see visible signs of progress each day but the crash pretty much wiped out his entire holiday. aside from a little family walk down by the Kelowna waterfront, that ill-fated bike ride was the only outing we had all together. regardless of whether or not he was having a 'good day' lyme symptom wise, he has been laid up on the couch with a bruised up body and concussed brain. but we know that he will overcome this setback too. no matter how many times he gets knocked down, he keeps getting up. he's a fighter. fall down seven times, stand up eight. his strength and resiliency and ability to keep smiling in the face of adversity are astounding. 

those nurses got it right.


he is amazing






  

July 9, 2015

HELP PARKER (aka SPARKY) OUT-CLIMB LYME


Dear Friends and Family,

There's a few people out there who truly understand how Lyme has impacted our family. Christine Lindberg is one such person. A few months ago, I (Graham) shared with her how overwhelming the financial struggle is. A few weeks later, she informed us that she would launch a fundraiser to help us with Parker's ongoing and past medical expenses. It took me two months to actually give her permission to do this - my wife Shannon and I find it horribly scary to publicly acknowledge our need and ask for help. If you can make a donation - awesome and thank you from the bottom of our hearts! Make sure to SHARE Parker's story via this fundraiser on your FB wall and/or via email. Please be informed about Lyme Disease - we do not want Lyme to impact your family the way it has ours. (Canlyme.com or ILADS.org)

Thank you very much to those who have already stepped forward to help Parker out-climb Lyme. We solidly believe that Parker's 9 month remission (May 2014 to January 2015) is a clear indication that he can beat Lyme! Last summer, after years of being wheelchair bound, we felt like we were witness to a miracle each time he conquered a new mountain top or ripped single track down trails all over the lower mainland.  He is fighting hard to get back on top. By way of donating you are being the hands reaching out to pull him up and the feet to journey alongside of him as he sets out to out-climb lyme once and for all. 

CLICK HERE TO HELP PARKER OUT-CLIMB LYME.


Please say NO to Lyme and Yes to Parker!

Love,

Graham Goertzen & family



Parker - Summer 2014
The Stawamus Chief, Second Peak, Squamish, BC


The following is a note from Christine Lindberg, the organizer behind this fundraising endeavour for our son, Parker aka Sparky.

Dear Friends and Family of the Goertzen Family,

My name is Christine Lindberg and I am writing this as a concerned friend of this beloved family.


This week, I launched a fundraising site at youcaring called, "HELP PARKER GOERTZEN OUT-CLIMB LYME", in order to raise much needed funds for their son, Parker's medical treatments.


The Goertzen family is so grateful for the support of many over these long years of illness and suffering. 
I know that many of you have watched them endure this fight for so long and you have faithfully persevered in prayer for them. As their community you have ridden the emotional highs and lows of this journey with them; celebrated the victories along the way and cried out and pleaded for mercy on their behalf inthe deepest depths of their suffering. Quite possibley, you may be feeling discouraged, uncertain or even somewhat complacent about their battle against Lyme. I know many of us have often felt like helpless spectators on the sidelines, not knowing what else to do or how to help. 

Well, this fundraiser is a way to be there for them in a very tangible and crucial way!

Our family is asking you to join us in donating money that will be used to help Parker fight his recent relapse in his very long battle with Lyme disease. Currently, it is taking $3,000 per month just to keep Parker from further decline - they need help to continue this plus explore other options that their medical team wants to implement in order to move Parker from 'survival mode" into a sustained recovery and healing.


Is healing from Lyme disease even possible?
The answer is YES! 


Parker - Summer 2014
Train Wreck Trail, Whistler, BC

As a mom of a son who endured the agony of Lyme Disease for years on end - but who now has before me a thriving, healthy and healed son, I can say the answer is YES! A resounding YES!  

Our family went through this battle for years, I can assure you that we were able to "leave no stone unturned" in seeking medical treatment options for our son Riley because of the financial support of our community. I will forever be grateful for the people in our lives who supported our family in such a tangible and real way...even when there seemed to be no end in sight.


Parker - Summer 2014
Lynne Valley Peak, North Van, BC

Please stand with us and say NO to Lyme and YES to Parker. Though the climb has been long and arduous, the reality is there is so much hope. Parker out-climbed lyme before and we believe wholeheartedly that restoration and a sustained recovery and healing is fully within his reach. There is hope that Parker can out-climb lyme once and for all and be able to thrive and lead the life he is called to - with joy and abundance.

The bottom line is that they need our help to leave no stone unturned. It has taken them a long time to agree to this fundraiser - as they are not the type to ask for help. They are incredible human beings who give so much to others - Let's shower them with love and financial support. 




Please click HERE to follow the link to complete details of the 

If you have any questions or can help spread the word, please do not hesitate to contact me, Christine at cklind47@gmail.com!


On behalf of Graham, Shannon, Taylor, Parker, Avery and, of course, Harrison, I thank you in advance for your consideration and support!

Christine Lindberg and family


July 5, 2015

THE PRETTY PILL PROTOCOL (& mini-update on LDI IMMUNOTHERAPY)


parker started a new protocol this week. we're calling it the pretty pill protocol because, well, the pills are pretty. it is called Sporanox. There is always anxiety about starting or adding any new med into treatment because often symptoms get a lot worse before they get better. as purdy as these pills look, they look extra scary for a few reasons.



first, because he's never been on them before so we have no idea how his body will react. second, his doctor is using these pills as part of a protocol to target mycotoxin issues in his brain, sinuses and lungs. treating these can be tricky and we know the die-off (herxing) could be intense.

i'm posting about this because i would love to get feedback from any other lyme or mold or biotoxin illness warriors out there that have 'been there, done that'.

speaking of been there, done that - 

i am working on a post to update you all on Parker's LDI Immunotherapy . he began this treatment therapy about 11 weeks ago now. i posted about it here. i have had a few emails and inquiries from folks asking how things are progressing on this treatment. i am so sorry that i have been slow to respond to inquiries and in posting an update! i know there are many people in the Lyme community researching this treatment and anxiously waiting to hear if it is working for those that are undergoing it.


here's the reason for the delay - parker had a very severe flare and got very ill within 24 hours of receiving his first dose of LDI. he was essentially bed ridden for the six weeks following his first dose. his medical team was baffled by his intense response as he was given the minutest dose. the tricky thing has been trying to figure out if the LDI Immunotherapy was just a contributing factor or the cause of his flare. i haven't wanted to post an update until i felt like we had a clearer understanding of where things sat with this therapy or even if his medical team would continue to utilize this treatment for him. 

at this point, his medical team believes the LDI contributed to the downward turn in his condition but (as per usual with lyme), there are about a million and one variables that may or may not have made things worse for him! we are still sifting thru all the 'rubble' but DR H did feel it was important and vital for him to continue with LDI Immunotherapy. so he received his second dose about 3 weeks ago. he did have a flare of symptoms again - but it was less intense and only lasted about a week. the past two weeks have been a bit better for him. we are hopeful this is a good sign that his body is having a favorable response to the LDI. albeit, now that he's feeling a bit better it makes starting the pretty pill protocol a whole lot less appealing - especially considering dem purdy pills could make him feel less than stellar.

 i promise i will be posting a more detailed and specific post of his journey with LDI in the coming weeks and months - just waiting til he's had a few weeks under his belt with this second dose in his system to render any judgements or opinions on this treatment protocol!








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