HOCKEY IS CANADA'S GAME!

WOOOOOOOOOHOOOOOOOO!

enough said.

PANTS ON FIRE

liar, liar, pants on fire!
so we had a fire in our house this week.
no lie.

fire, fire in the drier.
i'm pretty sure that smoldering mass covered in fire extinguisher goo used to be a pair of pants.

unbelievable.

it's been a rough week
my body has been ablaze with fiery nerve pain.
that ruddy inferno called babesia caused a flare of encephalitis
and well raging brain inflammation quite literally makes me a stark raving lunatic
(but of noteworthiness here, i must be getting well because i am only HALF the lunatic i used to be during these episodes!)
on top of dealing with my own physical hell
i'm having to help parker survive his own
he spent the week lying on the couch, wracked in pain and burning up
no fever but burning hot nonetheless
face flaming, body burning, heat so intense he spends his days stripped down to just his boxers
and so i find myself
still struggling with feeling like my entire life has gone up in smoke

sigh.
yes.
it has been one THOSE weeks.
one hell of a week.
(pardon the language but i'm trying to keep the fire theme going here)

i am a study in momentary contradictions
one minute, i can embrace the flame and allow the fire to refine me
allow it to produce perseverance, endurance, courage, strength, compassion, joy
qualities i so desperately desire
yet
the next minute the fire is my fiercest foe,
an all consuming, raging inferno
and
i am caught in a back draft of
anger, fear, frustration, pain, tears, sorrow
and
utter exhaustion
fitful, restless sleep comes only after countless tears have wet my pillow

wednesday things kinda hit a fevered pitch - one of those days when i was mostly ablaze in fury and engulfed in self pity
my folks were over
lucky them
they come every wednesday to help around the house
or in this case
seek to encourage, uplift, love, listen and pray over me,
the limp rag doll defeatedly lying on my convalescing couch, consumed by an onslaught of unsettling emotions

as they began to pray,
i heard the strangest guttural noise of panic come from upstairs
and suddenly graham came stampeding down the stairs,
skidded through our main level
and then whooshed down another flight of stairs into the garage
so loud was he that i'm sure he was taking them four at a time

inspite of the ruckus, we prayed on...
even when he came rocketing back up from the garage,
exploding through the door
and
blasting all the way back up both flights...
my folks continued in their praying
but i,
by that point,
was becoming a little distracted by all the banging and crashing

i opened an inquisitive eye and was about to respectively interrupt our spontaneous little prayer meeting to find out what in the world was going on
when the sound of screeching smoke detectors pierced the air
and the smell of smoke filled the air

fire, fire
in our drier!

really, it could have been a complete disaster
makes me shudder
the drier sits right beside the kids' rooms
and
just minutes before the drier self combusted,
avery had been asleep in her room,
alone
the rest of us downstairs
graham had just gone up to get her
and
was right there
when the drier went up in flames

the appliance from hell and the (scarily) close proximity of it to the kids' rooms

so it could have been worse
a lot worse
as it is, the fire was totally contained to the drier
and
so what if my favorite sweat pants got singed
and
so what if the laundry is now awash in the gooey residue of fire retardant
we are all safe
and
hey, when your appliances go and all it costs you is a phone call to your landlord, well, it's possibly one of those few times when being a renter doesn't feel like a complete disadvantage
and yet
the whole flaming affair made me mad
it hit just a little too close to home
i wonder, what next?
here i sit
day after day
and
pray
and
pray
and
pray
and
everything around me just keeps on going up in smoke.

and yet,
in spite of myself,
the whole flaming affair made me laugh too
i mean think about it
there we sat
me and my folks in fervent prayer
peaceful and oblivious
all the while
poor graham was running around the house like a mad man fighting a fire

oh the irony

ONE MOMENT AT A TIME...

er, or maybe one week at a time.

that is what we got

a one week prescription for doxy and malarone
we are so thankful for this
sure it's not a lot
really just a drop in the bucket of what will be needed
but it is something

there wasn't a ton of discussion
the doctor was tentative and cautious but kind

God's hand was so obviously in this
because
the doctor had not yet even received the treatment plan from DR H.
so it is truly a miracle that she gave us anything without that
and
she said that once she receives the treatment plan from DR H she will extend the prescriptions.

praise God.
a one week prescription with a tentative nod towards extending it, is nothing to sneeze at.
we'll take it. one week, one moment at a time.

phew. yeah.
one moment at a time.
that is about all i can manage anyway

this disease dictates the necessity of that.
it is a ride on the world's biggest physical and emotional yo-yo.

parker walked in to his doctor's appointment at 3:30pm
and
by 5:00pm he needed to be carried, fed and dressed again

in the hours (and now couple of days that have followed)
it has gotten really, really bad for him again

i knew it with everything in me that the weekend reprieve would be brief
i half expected it to end the MOMENT i hit 'publish' on the post about him walking
that is the reality of fighting this disease
one moment you are able
and
the next you are not

but
we rejoice in the moments when parker is able
and
we recognize that God is able... all the time and in every way
and
we praise God that he carries us through every moment, every day, and every week long prescription!

MARCH OUT BOLDLY

"When the worst happens—whether war or flood or disease or famine—and we take our place before this Temple (we know you are personally present in this place!) and pray out our pain and trouble, we know that you will listen and give victory.

And now they've come to kick us out of the country you gave us. O dear God, won't you take care of them? We're helpless before this vandal horde ready to attack us. We don't know what to do; we're looking to you."

God's word came:

Don't be afraid; don't pay any mind to this vandal horde. This is God's war, not yours. You won't have to lift a hand in this battle; just stand firm, Judah and Jerusalem, and watch God's saving work for you take shape.

"Don't be afraid, don't waver. March out boldly tomorrow—God is with you."
~2 chron 20:9-17

please pray for us today. we feel like we are facing a formidable army.

at 3:30pm, we have an appointment at children's hospital with the doctor who indicated she would be willing to work with DR H in treating parker for the mycoplasma infection. obviously since then, parker's diagnosis and treatment plan have widened to include lyme and babesia. i had an appointment with DR H last week. he has emailed his treatment recommendations for all 3 infections to this doctor at children's hospital. we are hoping and praying that this doctor will be willing to prescribe the necessary treatment and provide hands on support.
however
we fear that once again, we will find the battle lines have been drawn and the lyme war that wages within the medical community will prevent us from receiving at least some of parker's treatment here in canada.

we have no "strategy" for today.
we feel like we are being called to boldly yet simply just ask for help

and
in asking for her help, we will keep in mind, that no matter the outcome, our help comes from God.

sure, the fact that parker can WALK (or march) into that appointment today is pretty radical proof that he is responding to treatment but we know that there is no medical literature, no evidence and no argument- no matter how profoundly convincing that we could present that will change or move this doctor - it is God and only God that can change the heart of a person.

and no matter the outcome, He is sovereign over it. the war is not ours, but His.

our hope, our faith, our victory is not contingent on this doctor's prescription pad.

"Give thanks to God
His love never quits."

BABY STEPS

yesterday morning we witnessed a sight we have not seen in many months

parker WALKING

graham and i were sitting in our downstairs office when parker walked into the room
walked
walked
walked
it is a good thing we were sitting

we have not seen parker vertical for an extended length of time since hallowe'en
we almost didn't recognize him!
it was the strangest, sweetest, most wonderful site to behold

akin to the excitement, the shock, that hold your breath til you burst feeling experienced when your little one takes that first tentative, shaky baby step

wow
living in the unpredictable land of lyme never fails to surprise me!
to see this staggering improvement so quickly into treatment is miraculous

recovery from lyme is a marathon,
a fight, a battle, a war
where the journey between diagnosis and recovery is a roller coaster trip through a hell called "herxing"

HERXING 101

simply put, herxing is a really horrible sign that you are actually getting better. it means that the antibiotics (abx) are annihilating the bacteria. once the lyme and other infection(s) begin to be killed off by the abx they release neurotoxins and create a toxic load in the body. all of these toxins circulating through the blood stream wreak havoc on the body. this toxic load causes an exacerbation or flare of all your symptoms...and add insult to injury, one can often experience new symptoms and/or a recurrence of old symptoms.

the length of the herx depends on how high a load of bacteria is killed off and how effectively and efficiently the body eliminates the toxins. generally speaking, once the body has recovered from a herx and cleared the resulting toxins, one will experience a decrease in their ongoing symptoms and progress is made because some of the bacterial load has been eliminated.

note that i said "some" of the bacteria is eliminated.

this is not an infection that can be killed off in one fell swoop. because of the nature of this beastly bacteria and its life cycle, treatment with the appropriate abx means multiple rounds in the herxing ring. treatment and the road to recovery from lyme is a long, slow slog that at times can feel like you are only killing one of millions of beastly bacteria one minuscule, incremental step at a time.

(you can read more about herxing in the blue side panel on my blog - which is to your right)

since returning from seattle and starting on the appropriate abx and dosages to fight his infections, parker has battled through his first herx. it has been indescribable. his suffering, which was already so horrible, got worse...on top of an intensifying of his symptoms, he also developed peripheral neuropathies (nerve pain). it has been rough so we were certainly not anticipating seeing any evidence of improvement so soon.

we are greatly encouraged by these baby steps!
none of his symptoms are gone and he is still in pain and his tremors continue
but they have been beat back an inch

fighting lyme takes endurance
it is not a race
it is a slow long haul of a marathon where the road to recovery is often described as
one step forward, two steps back
but
this weekend,
parker took his first baby steps on that long road to recovery
and
he is blazing a trail, making up for lost time

yesterday he felt well enough to go to his buddy's house for the afternoon
tonight he went to another friend's house for a sleepover
and
i have spent the evening anxiously sitting by the phone...

nervous
like a mama experiencing her little lamb leaving the fold for the first time

wondering
how he is doing

worried
that a sudden flare will bring him home

scared
that he is overdoing it and will pay for it

but
understanding that ability to do can be fleeting with this disease
and
progress may recede when another round of herxing hits

and so
this weekend, we've thrown caution to the wind
and
have just let him roll with it...
ROLL? forget that!
we'll let him walk it...and enjoy this pit stop on the road to recovery.

NOISE

so taylor and his team lost.
bummer.
but
they got a nice nod in our provinces' big newspaper:

"Burnett, a team filled with size and talent, was able to put points on the board in a hurry when palmer went to the bench. But the one player who scored consistently was elliot mason, who drained a game high of 33 points in the loss. taylor goertzen added 32 points while twin forwards joeman and joeco fong each scored 15 points."

(THE PROVINCE -read complete article by clicking here)

and they've still qualified for the Vancouver & District Triple A Playoffs. if they place within the top 4 teams at those playoffs than they will advance to the BC Provincial Championship. that is exciting!

so they lost
but
really there was no shame in losing to the team they did. palmer really did rip up the court. it was insane.
and
you know, i'm pretty sure i took the loss harder than the team did.

so they lost.
not such a big deal
but
i lost it.
in my head.
in a tailspin of emotionality
and
it really had very little to do with their loss.
that was only the catalyst in cranking up the noise that has been playing in my head all week

LOSING has been the noise in my head.
quite frankly, it feels like we've been on the losing end of things for a while now.

yup, losing has been the noise in my head this week.
a private personal war loudly raging in my head
the noise is a tape that has played a continuous loop of,

"i've got a coup on the longest losing streak ever."
"i'm not good enough"
"things never get better, they only get worse"
"we're always on the losing end of things. it's no fair."
and
"when's it going to be our turn to win?"

i could go on
but
i'm sure you get the general ugly gist of my loser attitude.
rather
what i need to do is hit

pause
rewind
erase

all that tape produces is the non-stop streaming noise of
bitterness
anger
rage
cynicism
and
self pity

i recognize the undulating noise in my head is understandable
a natural part of processing this difficult journey
probably even necessary to live with it awhile in order to process

so long as i don't get stuck in it
or
get hung up in it
or
believe that the noise is true.
it's not
it only feels that way sometimes.
but wow,
can that noise ever be deafening at a times.

this morning, i had time and energy coincide and so i was finally able to spend some time catching up on writing some long overdue Christmas Thank You cards.

i have a lot to be thankful for.
it's amazing what a little thankfulness can do to silence the noise.

OH WHAT FUN!

just in case you hadn't noticed, i'm avoiding my blog again. :)

life is not a lot of fun right now.
i need stress relief
write?
write about it?
write about how
i feel ill equipped, overwhelmed and unprepared for the reality of what we are facing?
too much pain. to much suffering. too much noise in my head and all around me.

write?
write about it?
write about the
hysteria that resides within me, sinisterly sitting just below the surface, threatening to erupt in a volcano of rage, tears and grief?

write?
write about it?
write about "my moments"
my multiple daily moments where i feel like i'm on the verge of nervous breakdown and everything around me irritates me?

psshhhht!
so depressing.
so boring.

what's the fun in that?
i need stress relief alright.

the kind of stress relief that allows me to scream like a wild woman.
lucky me...taylor has a basketball game tonight.
and
i am going.
and
yes, i am going to scream like a wild woman and most likely lose what little is left of my mind.
actually, i'm counting on that.
oh what fun!
fun
fun
fun

and btw
YOU can JOIN the FUN!

Taylor's game is being broadcast live!!!
CLICK HERE TO WATCH LIVE BROADCAST TONIGHT @ 7:30pm.

it is The Richmond Triple A Championship Game
and
once again they, Burnett are facing their arch rivals, palmer.

so be a part of history tonight!
from the comfort of your home you can tune in to watch Taylor and his team take on Palmer!

and yes! my enthusiasm has taylor a little embarrassed.
oh what fun!

EXHALE

parker has been diagnosed with babesia, lyme and mycoplasma.

EXHALE.

the babesia is a primary infection. primary meaning that it is the infection that has the biggest strong hold in his body. it is probably responsible for a significant portion of his symptoms.
(click on this to learn more about babesia)
the lyme and mycoplasma have been diagnosed as "secondary infections".
most likely the babesia and lyme are congenital.

EXHALE.

all three infections need to be treated. parker will begin on aggressive treatment for the babesia within the week. we loved DR D. she is amazingly compassionate and very confident. she was also very positive and reassuring that parker will recover. recovery will be fight, a major fight of undetermined length, and treatment is tough BUT he can and he will beat this.

EXHALE

DR H will continue to be parker's primary care doctor but both DR D and DR H will be working together to formulate the best treatment plan possible for parker. we will see DR D in between office visits with DR H.

EXHALE.

it's hard really to ascertain what i (we) feel.
parker is bummed it's lyme...AND babesia - but he's very excited that DR D prescribed burgers as part of his treatment plan.

we feel relief. for sure. finally we have a confirmed diagnosis.
and
we feel grief. that gut wrenching, heart sinking, try to catch your breath type of grief. yeah. gotta remember to exhale. gotta let it all out. it's in me, threatening to explode in a cavalcade of wretched tears (where's a wailing park when i need one?!)
but
this grief is tempered by a sense of peace. that kind of supernatural peace that envelopes you when you know that God is with you.
and
He is. Yes. He is.
yeah.
it's gonna be ok.

EXHALE.

POM POMS ARE OPTIONAL

both graham and i have received several inquiries from folks who would like to attend taylor's basketball game tonight. we figured the blog was the most efficient way to get the game info to those that wish to attend.

we are blown away.. we have been completely caught off guard - in the best way ever.
never in a million years would we ever think that our "bummed out " status at missing out on our kid's basketball game would matter to friends and strangers...and then matter enough that it prompts action on your part? wow. knock me over with a feather.

we don't even know what to say...except please YELL, SCREAM, and CHEER at the top of your lungs for our boy and his team, the Burnett Breakers.
and
Taylor responds favorably on the court when he repeatedly hears the following mantras:

"GO BIG GUY GO!"
"TAYYYYYY-LOR!"
and
"THAT'S MY KID!" - (boy, that one could really raise eyebrows tonight.)

so to those that can go, thank you for your willingness to support Taylor in such a tangible way.

and remember,
the LOUDER the BETTER.
so
don't forget your loudest cheering voice...pom poms are optional

TONIGHT
FEB 3/2010 @ 7:30PM
the J N BURNETT BREAKERS take on the RC PALMER GRIFFINS
This is a long standing and biggest team rivalry in our city - fighting for top spot in Richmond SR Boys BBall Triple A division

Game is at RC Palmer Secondary School
8160 St Albans St
Richmond BC

Admission is $2 (i think)

Click here for Directions to RC Palmer Secondary School @ Google Maps

THE NEXT 36 HOURS IS CRITICAL

last week, parker was officially diagnosed with a mycoplasma infection. the day we were discharged from the hospital, i got my hands on parker's lab report that confirmed his test result was positive for an "acute/active infection". we immediately contacted DR H to let him know. he said it was crucial we got on top of treating this infection immediately and he promptly faxed over prescriptions.

over the course of this past week, we made the rounds to several other physicians to advocate on behalf of parker's needed treatment. all of the doctor's we saw agreed with the diagnosis...no one can understand dr big cheese's dismissal of it nor his subsequent refusal to treat it. however none of them have any expertise or experience in treating this type of manifestation of mycoplasma. but we were greatly encouraged when a doctor we saw at children's hospital indicated that she would be willing to partner with DR H in order to treat parker.

so by end of last week, we were feeling like we were finally getting somewhere and at long last finally had some answers. however the big question pressing down on everyone's mind was whether or not the mycoplasma infection was solely responsible for parker's symptoms or just part of the puzzle. we were so very, very hopeful that it was the whole but had an uneasy feeling that it was not... which is why i never let loose with a, "houston, we have a diagnosis" post.

parker has been on treatment for the myco for a week now. he is not responding. i spoke at length with DR H today. he says parker's symptoms/decline is far more complex than just mycoplasma. he said the only two things he can think of that would cause this intense level of pain and his other symptoms is lyme or cancer. both are on the table as possible diagnosis at this time. parker's situation is dire and time is critical. we have pretty much dead ended options in canada - and we cannot afford to wait on our system here to limp along trying to figure it out.

DR H made emergency arrangements for us to be seen by a specialist, DR D, in Seattle. he said that when the two of them work together on a complex cases they have excellent outcomes. well, we're all for an excellent outcome here.

graham, myself, parker and avery will be leaving for seattle tomorrow.
taylor must remain behind as he has a major big basketball game tomorrow nite. it is THE GAME of the season. i can't believe we are going to miss it.
i am more than just bummed to miss it - i am sick about it.
i am just plain sick about all of this.

the next 36 hours is critical...for all of us.

our appointment is Thursday morning between 9:30am -11:00am.
please pray for wisdom for the doctor. and peace and strength for us.