THE ITCHY ANSWER

OK. let me lead off by saying that detailed accounts of our experience with the documentary film crew are in the works. i jotted down notes throughout so i wouldn't forget the events. which is a good thing because we actually ended up filming for 3 days. one day in california and two days in our home. it was a whirlwind and much of it passed in a blur of emotions...i needed some "down" time to process it all before i could even attempt to formulate my random thoughts into a cohesive and entertaining read. however, 'down' time is hard to come by - even on a 'good' week. and the week or so since our return things have hardly been "good".

actually, it would be more accurate to say that it has NOT been ALL bad. indeed, we had a wonderful but itchy answer to prayer in the week since our return.

i am happy to share that our (and your) prayers for an MRI for parker were answered. it took a major fight and much perseverance but i am happy to share that parker has HAD his MRI. praise God! 

sparky about to get his much prayed for MRI

let me break it down...
first we asked for prayer that he get an MRI quickly. not an easy thing to come by in canada. the waits are notoriously long. add to that the complication of getting one for a pediatric patient OUTSIDE of the children's hospital but WITHIN the public health care added an extra dimension of challenge to the mix. the request was made in middle of October. the first referral to hospital in our city was rejected. they did not do pediatric MRI. this delayed even a processing of our doctor's referral. this meant another round of calls to find a hospital that would do one.

finally, one was found. however, because of the aforementioned delays, the referral was not sent in until the beginning of November. it took another week and more phone calls for it to be processed and an MRI to be scheduled. the date of Jan 11 was a relatively short wait. but we still felt that that was not short enough. we continued to request prayer and pray for a shorter wait. two days later, we were re-scheduled for dec 11.

we were thankful... but we continued to pray that this new date would be rescinded and we'd get in even earlier. during all of this, parker's vision issues were getting progressively worse. knowing the possibilities of why this could be happening had us anxious to get an MRI done ASAP. so yes, even the dec 11 date for an MRI (which at that point was a mere 4 weeks away) felt way too long a wait.

then, of all things, the hospital had a flood and as a result, the MRI machine was destroyed. who could ever anticipate such a thing? i could but couldn't believe it!! that kind of stuff just happens to us - the most bizarre roadblocks just pop up in our life and keep the road challenging to navigate.

parker's MRI was cancelled and no alternate date was given. at all. this brings us all the way up to when we left for california (nov 27). we were even making calls in the airport, scrambling to find yet another hospital. just before we boarded our flight, graham was able to find a hospital. he called our doctor's office and asked them to fax the referral to this new hospital. i might add here, that it is not normally the patient's job to find a place for their doctor to send an MRI referral. however, parker has fallen thru the cracks so many times that we have found it is necessary take on many roles when it comes to negotiating and advocating within the system.

upon our return from california (dec 1) we learned the MRI had been scheduled for april 2013. this was terribly upsetting news. again, we made more phone calls. 

it was stressful. 
it was draining. 
it was uber frustrating.
it was physically and mentally exhausting to persist in holding those in the medical profession accountable to appropriate and timely follow through. 
however, 
in the back of my mind,
i somehow dared to consider something impossible...
what if, after all of this, he actually ended up getting his MRI earlier then the dec 11 date? hadn't we been praying that that date would be rescinded?  i certainly hadn't prayed for a flood but what if... (i assume no responsibility for it occuring)

i had a conversation with the Lord about it. albeit, a slightly perturbed one. 

"ok Lord, along with a multitude of folks, we've been praying that parker's MRI date would be moved up from dec 11. today, is dec 4 and we now have a scheduled date for april. what are you up to?"

on dec 5 the hosptial called and told us they had an opening for parker to get his MRI on december 7th!

this answer to prayer made me laugh and cry.... even as i write this, it still makes me well up with tears.

unfortunately it has made parker itch like mad.

the rash begins

5 hours after having the MRI, parker had a (pretty severe) allergic reaction to the contrast dye used in the MRI. at least this was not an unforeseen speed bump, we had anticipated this. two reasons; 

first, he had a reaction (but milder one) to xray dye 2 years ago. a past reaction tends to mean you'll react in the future - and those reactions can become progressively worse. 

second, he has a Mast cell disorder called Mast Cell Activation Disease (MCAD). This disorder puts him at a greater risk and predisposes him to allergic reactions and anaphylactic shock. (you can read about MCAD here and here - this post will be too long if i go into a detailed explanation of this disorder.) 

this disorder is not curative but there is treatment that helps to control the disease. the treatment protocal includes daily doses of multiple anti-histamines and other medications that are "mast cell stabilizers". in addition to his standard doses, parker was pre-medicated for the MRI. meaning, his doses were doubled up in an effort to stem off a severe reaction. we continued to medicate him with these increased doses and added in another anti-histamine afterward

we are thankful he did not have an anaphylactic episode. we suspect that the medications stemmed that reaction however, he has been COVERED from head to toe in hives and an itchy, angry rash for nearly a week now. it is a horrible reaction and has flared all of his other MCAD symptoms plus his lyme; he is continuing to endure severe bone and joint pain, fatigue, bouts of diarrhea  nerve pain, flushing, mild shortness of breath, shaking chills.

sparky's back

about 18 hours after it started, it seemed to be going away however in short order, it returned with a vengeance. this was very disconcerting. with MCAD, there is always the fear of anaphylaxis. most folks are familiar with the more common or typical anaphylactic reaction that usually takes place within minutes of an exposure to an allergen. MCAD and/or systemic mastocytosis patients can have an anaphylactic reaction take place days after the initial exposure. based on that and the fact that parker was maxed out at highest doses of multiple medications and the rash was progressing and continuing to get worse, we finally made a visit to the ER on sunday afternoon.

Sparky at ER

going to the ER was not a decision we made lightly. going to ANY hospital is the last thing we want to do. we still live with the fear that what children's hospital did (threaten to call in Child Protection Services & MCFD in an effort to remove parker from our care) will happen. i cannot explain what it is like to live with the fear that taking your child to the hospital for medical help feels unsafe and dangerous.

graham told me afterward that he was on high alert and in "fight or flight mode" the entire time we were in the ER. i was blessedly not as stressed about it. MCAD is a "recognized disease" in canada (DR H, our USA doc originally diagnosed it but we are now seeing a canadian allergist/immunologist for treatment of it) that being said, it falls under the umbrella of Mastocytosis which is classified as an "orphan disease" meaning it is a rare condition. therefore the ER Doc did not know a whole lot about it. he was fairly dismissive of us because parker had no respiratory issues. the ER Doc did tell us that prednisone (a steroid) is some times used to curtail an allergic reaction but he felt that use of that was a decision that was best left up to parker's immunologist. fair enough, i suppose. 

Sparky's arm - 4 days after it started

i know that prednisone is often used as a last resort to treat MCAD patients. however it is contraindicted when one has lyme. in fact, steroids and lyme can be a lethal combo. it is not a treatment we would implement lightly and certainly didn't want to face a decision about using it unless we had spoken with DR H first. so, even thought we felt like the ER doc could have done more, we are glad that we felt the need to fly under the radar whilst in hospital. biting our tongue rather than pushing for immediate help probably kept us from having to make a decision about the use of steroids and that would be a precarious position to be in.

we left the ER with instructions to follow up with parker's immunologist. which we have tried to do. this has proven to be a very upsetting endeavor.  we are not exactly happy with this doc. furious is more accurate. we do not have an emergency contact number for him. but we have been leaving messages at his office since Sunday. it is now wednesday and we have not had a response. i am absolutely bowled over by this negligence. 

sometimes i really struggle with the feeling that my kid ALWAYS falls through the cracks or worse, has been kicked to the curb by many doctors. 
why don't they freaking care?
i don't know why i still seek or need that validation from the mainstream canadian medical community. when i get fixated on that, it is easy to overlook the fact that we do have doctors that are working on parker's behalf. furthermore, they often go above and beyond the call of duty.

even the soles of his feet and palms of his hands are covered

we contacted all 3 of parker's lyme literate docs. DR D and DR H responded within hours. DR C got back to us - even tho' his office was closed and it was his day off. yes, our sparky boy is in good hands. that's a good thing because he is a very sick kid.

Getting IV support at DR C's office

 we are implementing the treatment protocals that DR H and DR D prescribed. DR C is assisting us with this. these will be started today (wednesday) at DR C's office. if parker's rash has not improved by friday than he will have to start a short course of prednisone. it is DR H that made that treatment recommendation. he has (already) prescribed it. we are scared to put parker on predisone but trust DR H's expertise in navigating this type of tricky medical decision. we would not want it any other way. 

so, we have til friday for things to turn around.
for the rash to get better.
for the itch to stop

i pray that they do.

after all, friday also happens to be parker's birthday. 
and it's a big one.
thirteen.
i'd love for him to have an itch-free day.
becoming teenager is hard enough. 

ROAD LESS TRAVELLED

well, our travel day got off to an eventful start.

do we ever do anything drama free? simple? easy? uncomplicated?
umm. no.
trouble seems to follow us.
today, was no exception.

our flight to SF was delayed by 3 hours. i nearly had my nexus pass revoked and was almost fined $300 at customs because i forgot to declare my rice cakes.

is it any wonder that the primary issue i work on in therapy is de-bunking the myth that "NOTHING is every easy" and "WHY is EVERYTHING ALWAYS complicated?" and "EVERYTHING ALWAYS goes wrong." sure it feels like that a lot of the time but those are totally self-defeating mantras and they are not true. but, honestly, how do i overcome those lies when i keep running in to roadblocks that reinforce them?!

i started writing this post in the airport but decided to wait to publish it until we had actually arrived safe and sound in our hotel room. aside from the fear that something else would happen, i had serious doubts that i would be still be of sound mind by the time we landed at our hotel...even if no other unforeseen incident occurred.

but sure enough, we encountered 2 more slight hiccups before we safely landed in SF.

at the boarding gate, just as the flight attendant was checking our tickets avery turned around and shrieked, 

"oh no, mom, did you remember to bring the GUN?"
i kid you not.
time stood still.
the word "gun" hung heavy in the air; 
it shrilly reverberated in my ears like an announcement on a cheap PA system
i froze. mouth gaping. heart pounding in my ears.

"avery! i don't think i heard you... but don't repeat yourself!" i squawked... a deer caught in headlights.

"i meant GUM! GUM! Did you remember to get GUM?" she whispered, sparkling eyes wide with surprise

this flight has aged me exponentially.

we boarded the plane.
i had just sunk into my seat and was in the process of heaving a sigh of relief...when avery suddenly shrieked,

"MOM, MOM, i'm getting a nose bleed."

sure enough.
nice gusher.

the rest of the flight was without incident. 
or at least, i think so.
if there was - i didn't see it.
i closed my eyes and didn't open them again until we landed.
ignorance is bliss.


even with all of the hiccups, i am grateful for this flight. somehow amidst all the delays, complications and stress of it, it is a blessed flight. blessed? yes. the cost of this flight was covered by air miles donated by a good friend. he also has lyme, must travel out of country for treatment but still donated his air miles to us. and a young family, used air miles to secure and pay for a car rental for us. i won't lie, we held our breath until we had secured the keys to the vehicle... and, most important of all, it was a massive car boat. car boat rentals are as legendary and as big a part of our SF trips as DR H and In-n-Out Burger are. we were thrilled it was a true to form car boat. the kids fit perfectly in the trunk. graham and i enjoyed a nice, quiet ride to the hotel. kidding. 

we are forever being amazed at how folks allow God to use them to bless us. it is humbling. this road is hard, painful, challenging and yes, a lot of the time, it feels like EVERYTHING is going wrong and this nightmare will NEVER end...yet, blessings are undeniably intertwined through out this road we travel. they serve as the shimmering beacons of light...and when i focus on the hope, faith and love they represent, their sheen outshines the darkest parts of this journey. yes, the blessings are many. THAT is truth. my heart believes that. it is the journey from heart to mind that can get a little tricky - the roadblocks along the way can sidetrack me from the standing in the truth.

speaking of roadblocks...one last thing. 
this has nothing to do with air travel
but it has everything to do with delays and complications. 

the day before we left for SF, we received a phone call from the hospital where parker's MRI is scheduled for dec 11. the hospital was calling to CANCEL the appointment because they had a flood.

i kid you not.

no back up plan was offered. the situation is complicated as this is the only hospital that does MRI's on children - aside from children's hospital - which we do not feel is a safe option. 

this means we may now need to incur the cost of paying for a private MRI.

it is ridiculous. parker's MRI is marked as URGENT. suspected encephalitis is on the requisition. 

please be in prayer for this.
even as we sat in the airport awaiting our flight, we were making phone calls to try and get this sorted out.
it shouldn't be so hard.
really.

we had such trouble securing this MRI appointment to begin with
and then a flood happens?
what are the chances?
for some reason, God continues to allow us to walk the road less travelled. 
at the moment, my mind is semi-panicked over the details
but i choose to believe God will work this one out too.
after all,
he ALWAYS does

NATURE OF THINGS

i have some exciting news to share!

there is a documentary about Lyme in Canada in the works! Merit Motion pictures is shooting the documentary for CBC's The Nature of Things with David Suzuki. isn't that just super?

the documentary will air on The Nature of Things in Fall 2013.

back in early spring, parker had come to us and said that he wanted his voice to be heard and his story to be told. then a few months later, i was contacted by one of the producers from the Nature of Things and the opportunity for parker's story to be told fell into our lap. at that time, they were just starting to research Lyme disease... and were quickly learning that the scope of the lyme issue is huge and very multifaceted. at that point, they were considering addressing how global warming is impacting the spread of ticks in canada and how this has dramatically increased the risk factors for canadians and how the government and medical profession is woefully unprepared to handle this alarming and growing epidemic.

they wanted to feature one or two families that had children whom have been impacted with lyme as part of their documentary. our name had been forwarded to them. by the time the producer contacted me, i was pretty surprised by how much of our story she already knew. apparently, prior to contacting us, she had read a fair bit of my blog.

the story that had caught her attention was the one about harrison being treated for lyme this past spring. (read here - bittersweet juxtaposition)

so yes, the dog has earned us an appearance on national tv.

he's referring to himself as our agent now
and trying to collect fees.

i've told him when he starts picking up his own poop, then he'll be in a position to negotiate.

anyhow, back to the nature of this post...contrary to what he thinks, this is not about the dog.

last week, i spoke with another producer and the director of the Lyme documentary and things are moving full steam ahead. over the past few months, they have been all over canada and the usa interviewing many lymies, scientists and lyme doctors. they even sent a crew to the ILADS conference in Boston. this is a huge conference and ILADS is the medical society that focuses on the latest in lyme research and trains doctors on how to treat lyme. the crew also spent a fair amount of time back east in Manitoba. they interviewed patients there and our canadian lyme hero, dr ernie murakami. this is the doc who originally diagnosed me and treated me briefly before he was forced to retire his license. (read about that here) dr murakami is a remarkable person and we all love him dearly.


this coming week, the crew and director from merit motion pictures will be interviewing our family in our home as well as filming us during our upcoming trip to SF to see DR H. we fly to SF on wednesday (nov 28)and have appointments with DR H this thursday (nov 29) and the film crew will be there to capture it all. oh boy. we are very excited that DR H has agreed to be interviewed. this is a huge deal. i am quite nervous that he will have second thoughts and back out at the last minute. pray that he doesn't! there is such significance in him being interviewed. it is one thing for us to tell viewers how sick we were/are but there is a ton more credibility attached to our experience when it is backed up the treating physician. additionally, having him weigh in on the lyme issue is so important as the medical opinion of non-lyme doctors is sure to be represented. 

david suzuki is a well respected and renowned environmentalist. i believe he is very influential and for him to be 'on board' with shedding light on Lyme disease is a remarkable platform. we are so grateful to be given the opportunity to share our story. we are excited but very nervous too! please pray that i can speak articulately and effectively and wisely communicate the issues at hand. i want to tell our story in a way that will spark awareness of lyme and leads to the recognition of lyme in canada and ultimately sheds light on the plight of thousands of patients in canada that are suffering...we are but one in a sea of faces in desperate need of change. 

filming will take place in SF (our hotel and DR H's office) this thursday. 
we will arrive home on saturday (dec 1) and the film crew will spend sunday and monday (dec 2 & 3) in our home. many thanks to my friend maureen who is donating her time and cleaning skills to getting my home camera ready.