HEALING TAKES COURAGE

the boy's staples came out last week...

he was told he has to be careful so as not to disturb the healing process. he has to go easy so as not to put strain on his freshly healing incision. no heavy lifting but he has to be brave and gently stretch it even though it hurts. he must be patient with the process.

his broken skin and fragmented bones are healing. this is good.

so then why am i splitting apart at the seams?

last week was a haze of panic attacks and uncontrollable episodes of vomiting. the last few days have been better but i'm still bawling at the drop of a hat (and i need a hat to cover up my hair color drama)

what is going on?

is it one of the stealth pathogens that lie in my body - like thieves in the night waiting for a moment of unguarded weakness strike?

is it the years of watching my child(ren) fight their own battles with chronic lyme? and the invasive grief and holy hell fury i feel in the face of their suffering? when a momster can't make it better...well, that splits your heart wide and bleeds it dry.

is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?

is it just life? this lyme life that we live...with one crisis after the next happening and no time to set straight the brokenness in between?

or am i so broken and damaged and so lacking in resilience that i'm just coming unglued? (that's what my anxiety screeches in my ear)

it's probably a combination of all of the above.

yup. the past 10 years...coupled with the last 7 months have been a wild ride. chaotic. sorrowful. painful. bewildering. they've taken a toll. they've cut deep and wounded my momster heart.

and yet, piece by piece the boy is healing.

his surgeon's advice is worth taking to heart for all of us.

take care. be gentle. go easy. be brave.

healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.

but i can heal. we all can. never give up.

PIECING IT TOGETHER

one week post surgery and the boy went to school today.

i spoke with the surgeon's office this morning and when i told them he was recovering well and had even gone to school today. they exclaimed, "that's amazing!"

i thought to myself, "yup. you're darn right it is."

actually, they really have no idea how mind-blowingly amazing it is.

"let me tell you something you already know... the world ain't all sunshine and rainbows. it's a very mean and nasty place and i don't care how tough you are, it will beat you to your knees...and keep you there permanently if you let it. you, me, or nobody is gonna hit as hard as life but it ain't about how hard you hit. it's about how hard you can get hit and keep moving forward. it's about how much you can take and keep moving forward. that's how winning is done." 
                                                                           ~rocky balboa

just a short 6 weeks ago we were at quite possibly one of the lowest points we have ever been. sparky's situation was grim and we felt pretty hopeless.

the 6 months following our trip to kansas were beyond hard. they were horrible and heartbreaking. they were horribly heartbreaking. 

we are working through all of it ... we have deep wounds that are in need of healing. we still feel bewildered, confused and confounded by all that has transpired. we are still trying to piece together the puzzle that is parker...especially in regard to his relapse (that started in january 2015) and then the monumental spiral downward that transpired after our trip in october (2015) to the treatment center in kansas. the prevailing and confounding questions of course has been what the hek happened?! what triggered the initial relapse in january 2015 and then what triggered or contributed to the rapid and accelerated decline in october.

lyme and babesia are still an issue - that is a known and well-established fact but we figured there must be another underlying factor. that there was some missing piece to the puzzle has always been of concern to DR H. the hope was that this would be uncovered at the center in kansas.

since november (2015) we have been working with DR H to put the pieces together...there has been a lot of brainstorming, testing, and treatments. 

there were multiple issues to investigate. the boy is a mystery. 

at the tail end of february (2016), we were able to identify a clear link between his joint pain and localized inflammation. this was a huge revelation as we had been trying to treat it from a brain involvement standpoint - the theory being that his brain may be caught in a neurological loop/misfiring pain signals as opposed to there being actual inflammation in his joints. once we identified this link it helped to narrow down the field as to underlying causes. 

heavy metal toxicity came to light as a strong possibility. DR H started parker on a heavy metal detox in march. he had never been treated for this. testing did reveal that he had high levels of several metals (cadmium, mercury, lead). once we began treating the localized inflammation and then added in a heavy metal detox things rapidly changed for the better.

we are not in the home stretch by any means. so far what we are doing is working and he is feeling tons better but we haven't found some miracle cure either. i've been on what he is on and it's not helped me. i know others that have too. it seems to be the right thing for his body right now but whether or not it is healing him or just managing his symptoms is unknown. DR H is concerned that it is the latter. we are still trying to assemble all the factors at play. there is still testing and further investigation that needs to be done. as well as doctors appointments to schedule. of course, this has all been delayed since he went head first over the handle bars of his bike last week. (called a "superman" in mountain biking lingo)

now he's literally being held together with 19 staples, 6 screws and a titanium plate.

so the boy is chock full of metals.

how ironic.

he is tough as nails. he's resilient. strong. brave. enduring. stoic. funny as hek. and my word is he a fighter. the first 2 days after surgery were rough. he barely moved or spoke. it was tough. but what he's lived through in the past 7 years pales in comparison. he says the pain from lyme is worse than this. can you even imagine?

i am amazed by his spirit...and that he is pulling through this so remarkably well. 

is it the calm before hell breaks loose again? gosh, i hope not. of course there is concern that this trauma to his body could push things into a tailspin again. we have been in touch with DR H's office several times since the accident and he has been started on additional antibiotics to treat any flare of lyme the accident could cause. 

is there fear that one wrong move could split wide open what has been stitched together? absolutely. but we are picking up the pieces and tying to keep focused on moving forward. one. day. at. a. time. we are grateful to be where we are. we hope that this forward progression continues. our boy has been through enough. 

ps don't give up

A TOUGH BREAK

so this happened on saturday.

parker had a bit of a crash while mountain biking. his clavicle (collar bone) is broken and displaced. it is also seperated at the shoulder. he will be having surgery (most likely) on monday.

my last update about our sparky boy (read hope is what we crave) was about how he was and had been very ill for the past 6 months. shortly after i posted that he had a change in treatment which resulted in a total 180 in his health. over the past 4 weeks he has experienced a rapid and radical improvement in all his symptoms... he had now been re-building strength, shooting hoops, riding his bike and had even been able to go to school several times. it felt like a miracle. we just hadn't yet talked about it with anyone outside of family because it was all so new and still felt tenuous. he was/has been improving BUT he was (is) still living with daily symptoms and day to day flares. and we (along with DR H) were still concerned that things could just as suddenly decline and he could head downhill again. we felt a little, okay actually a lot scared that the rug could be pulled out from under him at any moment.

turns out the rug is his bike.

the crash occurred in a bike park on the sunshine coast. the medics at the park were fantastic and super compassionate. he had to endure coming down the mountain - they could have put him on a stretcher - but he chose to walk down (with help) and then a long wait in local ER. he then had to endure a 90 min ferry ride and 45 min drive to hospital where we live. he was given a shot of toradol after the accident but until we arrived at our city hospital the day after the accident, he'd just been on tylenol and advil to manage the pain. needless to say,  the last 24 hours have been intense & traumatic. but parker is tough as nails and extremely stoic. we are amazed by his strength and resiliency...and his humor. however, this is a really tough break on every front. appreciate if you could keep him in your thoughts and prayers.

Waiting for ferry.
He says the joint pain he experiences due to lyme is worse than the pain from his break.

i will be updating as i can.

HOPE IS WHAT WE CRAVE

so i've been MIA on social media and my blog for a long while now. multiple reasons abound for my sudden and prolonged disappearance...

i don't have that many words to describe the past 6 months - well, not appropriate words anyway. 

at the beginning of august, i got strep throat which triggered a pandas relapse. this was my third relapse with this illness since my diagnosis in spring 2014 (read about that here). i am very fortunate that my symptoms respond to treatment albeit this time around it took aggressive and very high dose antibiotic treatment from mid-august until end of october to restore proper brain function. the treatment was very, very hard on my body. i was still recovering and dealing with some mild neurological deficits when we embarked on our trip to seek in-patient treatment for Parker at the clinic in Kansas. 

for those not familiar with pandas -  basically, it is an auto-immune illness caused by exposure to group a streptococcus infection that causes the antibodies in your body to attack specific regions of your brain and central nervous system. this can cause very severe neuro-psychiatric symptoms. understatement.(read more about it here or here)

in plain english, pandas is a mindf*ck. and that is putting it mildly.

but more about THAT another day. 

the same week that my pandas flared, we had uninvited, unwanted house guests arrive.

6 months later, they are still here. along with most of their relatives.

they are not welcome. they are not wanted. and we have nearly lost our minds trying everything and anything to get rid of them. 

their aggressive invasion of our home has been a complete and total sh*tstorm if you catch my drift. since december, i spend (on average) 3 to 4 hours PER DAY cleaning up after them. no lie. 

one day i may blog about it. in fact, the story-teller in me is surviving their hostile take over of our home by telling myself, "oh shan, this is going to make a great blog story." and truly it will - after all, the tales i can tell will leave you in flabbergasted disbelief at their brazen persistence.

however, the other part of me, the introverted, sensitive, idealistic momster who is stumbling raw and broken through the darkest of days...just wants to keep the storyteller silent. because so much of what has transpired in the past 6 months is just beyond words. too hard. too raw. too painful. and none of it makes sense. i am angry, bitter, grieved and beyond heartbroken. and the last thing i want to do is put the brutal, ugly, hard agony side of suffering out there - unless i have some sort of positive perspective to wrap it up with. after all, i write because i want my suffering, our family's suffering, to mean something. to be bigger than us. to help someone. to encourage. and mostly, to inspire faith and hope in the midst of trauma, suffering and pain. 

but today, i write in spite of the fact that i have NONE of that to bring to the table. NOTHING but my brokenness and the desolate desperation of our story. these are dark days, friends. so very, very dark...the kind of bewildering, scary, heartbreaking, helpless, hopeless, perplexing, WTF-is-going-on sort of dark days.

which leads me to the hardest part of this post to write about... an update on our boy sparky.

it is very difficult and painful to talk/write about Parker's situation.

our emotions are intense and somehow neither the hubster nor i have had it in us to put any of it 'out there'. yet, we want you to know that we have deep gratitude for the many, many people whose unbelievable generosity made Parker's $20,000 trip to Kansas possible. we know that each and every person who donated and/or prayed for this trip is also deeply emotionally invested in the recovery of our boy.

we get that.
we so totally and humbly get that.
in part, it's why it so difficult to share the outcome of our trip with you all as it is not what any of us earnestly hoped or prayed for. but it has sat heavy on my heart that we have been remiss in personally extending our gratitude and also letting people know what is going on. 

we embarked upon this trip with our hopes held high. after all, this was our miracle trip! how could it not work? really? especially with all that went in to getting us there! furthermore, the miraculous stories of recovery experienced at this clinic were not just internet hear-say to us - we personally KNOW people that have had IMMEDIATE and LASTING relief from their symptoms (specifically pain) while at this clinic. so we KNEW it could happen.

the pain relief aspect of healing was our primary reason for choosing this specific clinic. parker has suffered from unrelenting and intractable joint pain for 7 years now (even during his brief remission, he was never totally pain free)

we prayed and hoped and believed that he would experience a notable shift in his symptoms and a reduction in his pain during his 2 weeks at the facility. we knew it was possible however, we also knew this was not a totally realistic expectation to have. this was what we considered a 'best case miracle scenario'.

and the worst case scenario?

that there would be no notable changes during those 2 weeks in the clinic but that healing would come in the months after as he continued on the various remedies and therapies at home.

naturally, the best case scenario is what we hoped and believed for but the worst case is what we mentally prepared for. after all, it was the most realistic outcome to expect. we get that. he has been sick for a very long time  so it is not realistic to expect an overnight recovery.

NEVER EVER IN OUR WILDEST FREAKING NIGHTMARES DID WE FOR A SINGLE MOMENT EVEN CONCEIVE OF THE POSSIBILITY THAT HE WOULD GET SICKER.

but that is exactly what happened.

there were no notable changes (good or bad) in any of his symptoms until his second to last day of treatment. and then suddenly and abruptly, his symptoms flared exponentially and all hell broke loose.

let me be very clear -  this was NOT at all an expected outcome of treatment there. i know this may be a bit confusing for folks to understand since the traditional standard of lyme treatment is that you do get worse (eg herxing) before getting better. however, the whole crux of treatment at this clinic and the principles of biological medicine that is practiced there is that you DO NOT have to get worse before getting better. that being said, one also has to say that a flare of symptoms can occur even if the physician is striving to avoid flaring a patient. (a bit confusing i know. sorry. i can't figure out how to explain it really.)

parker's symptoms flared so dramatically that i didn't think we should leave with him in that condition. i asked his doctor if money were not a barrier, would he be suggesting that parker stay for another week of treatment but his doctor felt that his worsening condition was just a minor set back.  he was very hopeful and optimistic that this was just a temporary flare that parker would bounce back from within a few days.

so we left kansas with a very sick kid who was more disabled and in more pain then when he had arrived. we were in shock...yet we clung to the hope that we had just hit a speed bump on his road to recovery and soon we'd see improvement. after all, how could this not work? this was our miracle trip.

in the weeks following the trip, parker continued on all the remedies prescribed to him at the clinic. 
yet, he continued to deteriorate at an alarming rate. 

by november, he had lost 20lbs. and the primary symptoms he has been living with since his relapse in jan 2015 increasingly intensified.(severe joint pain, difficulty weight-bearing/mobility issues, insomnia, heat intolerance, facial flushing, nausea and intense noise/light sensitivities) 

it was very clear that this was no temporary setback or speed bump.

his downward spiral certainly caught everyone off guard and stumped his doctor. we spoke with his kansas doctor who postulated that parker's infections were probably too severe to respond to their remedies alone. he told us that the clinic does not generally recommend antibiotics - except in very rare cases.

he believed parker's condition fit this rare exception. 

so his kansas doctor and his california doctor (DR H) had a phone conference and put together a treatment plan. additional testing ordered by DR H revealed that parker had a very severe staph infection. aggressive antibiotic treatment for the staph was started immediately.

in our numb state, we continued to cling to the hope that once the staph was treated, he would begin to improve. after all, we now had two of the most brilliant doctors working on his case. he HAD to get better. he just had too. 

but he did not.

some symptoms (primarily the facial flushing. rashes and headaches) responded to the antibiotics for his staph infection but his other symptoms continued to worsen. in mid-december, he required testing for a condition called KPU. in order to prep for the test, he had to stop all his remedies from the clinic for several weeks. his test was negative. that was a big relief. the other relief was that his weight stabilized during the few weeks he was off his remedies. he didn't gain back any of the 20lbs he had lost (and still has not) but he stopped losing weight. this was significant because the weight loss and resulting muscle wasting was alarming. he was very frail. while he was off the remedies, he did not have any improvements in his other symptoms but at the same time neither did he get worse - he just kinda settled into this precarious state illness. we did not want to upset that balance. therefore, the decision was made to not resume any of the remedies from kansas. 

this was a very tough call to make for so many reasons.  

we do not question the integrity of this clinic and we know the medicine they practice there is powerful. during the 2 weeks we were there, we met many people that were experiencing healing. it just did not happen for parker. and that is horrifying and hard and makes no sense. we had/have no idea whether or not the weight loss or his overall deterioration was triggered by the remedies (there are so many co-morbid factors to could play a role -  too complex for me to get into). we hope that one day those medicines will play a role in his healing. it is just too upsetting to think that all of it was for nothing. but we simply do not know at this time. 

honestly, there are more questions than answers. 

that is where we are today. 

we have literally spent the last several months fighting for parker's life. trying to figure out what went wrong and what is going on. he has undergone numerous therapies and new treatments and even been seen by new doctors in the past several months. all to no avail. he is back under the full time care of DR H (california doctor). we are so grateful that DR H has not given up on parker. 

his level of disability is severe and alarming... in many ways, we are all still in shock...our family is deeply grieved and beyond heartbroken by the state that he is in. we are scared...we are sad...we are desperate....we feel helpless but we will NOT give up. we are pressing on, researching treatment options and fighting for parker. 

i don't think any one of us can even imagine the depths of parker's despair and hopelessness. we are amazed by his resilience and the fight he still has within him to keep on trying any and every new treatment thrown his way yet we fear...how much more can he take before he gives up? 

we are so grateful for parker's school therapist/counselor who has been coming to visit him in our home weekly for the past several months. thank you pete for showing up and being parker's person. there are no words to express how much you mean to us. 

i will be breaking my facebook hiatus in order to only publish this post - i have not accessed FB or messenger since august and at this time, i am choosing to remain inactive.  i am surviving and that is part of my survival. as much as i love the community of friends i have there, i just can't do FB. i can't do any of it - the advocacy part or the socializing part...or even the fun, silly part of it. 

but that being said, we do need people to reach out to us and let us know we are not alone and not forgotten. if you would like to, please drop us a line here on my blog or at sngoertzen@gmail.com.

please know that we have deep gratitude for your support and donations. thank you for standing with us and loving our boy. we are humbled.

please understand that we may not respond to emails. we are tired.

please understand that we cannot be more specific or answer more questions about parker right now. it is just too painful to rehash. what i have written here will be all that i say for now. it is everything i can possibly put out there without coming completely undone.

please understand that we DO NOT wish to be inundated with the latest miracle cure for lyme. trust me - i am a research ninja - chances are i've already heard about, researched it and probably tried it.


BUT PLEASE FEEL FREE TO:

tell us a funny story.
tell us you love us.
tell us we are not forgotten.
bring us donuts.
bring us coffee.
and
if you have a cat that is a really good mouser then please bring us your cat.

hope sleeps without me

sweet dreams surround me

but i'm left out

i need a reason to believe

these rooms are dark now

these halls are hollow

and so am i

it's hard to feel now

i won't turn to dust now

let these tears rust now

on my face

give me the spark now

to believe, to see

to live, to die, to lose, to care

to rise above, to love again
i need a drop of grace
to carry me today

hope is what we crave & and that will never change

                                                               ~ lyrics by for king & country

ps
special thanks to my friend CP who has been an exceptional sounding board and brainstormer...especially over the last 6 months. thank you for being my person. i am forever grateful for your friendship & support.

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. 






  

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 

HELP PARKER OUT-CLIMB LYME fundraiser

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

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!

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