CARRY ME

we are home from SF. 

today we got the ball rolling on sparky's "balls to the wall" treatment. it's now full steam ahead. the following "menu" will be served up 3 times per day for the next 6 weeks. 

intense die-offs, called Jarisch-Herxeimer reactions (aka herxes), are expected and they are horrendous to live thru. a herx occurs when the medication hits it's intended target (the bugs) and kills them. the death of the bugs results in  a nasty mix of toxins being released into the bloodstream and can create neuro-toxicity. it is the toxins circulating in the bloodstream that produce an intensifying of all ready present symptoms and/or can elicit the presence of new symptoms. 

a herx associated with the treatment of lyme is most often seen at around the 72 hour mark of the start of treatment and again at around 3-4 week mark. that being said, everyone herxes slightly different... the health of a person's detox pathways, bio-chemical make up and effectiveness of detox regime all impact the duration and intensity of herxing. one of the particular medications sparky will be starting is very powerful against the cyst form of lyme. for this reason it can cause very intense and prolonged herx reactions.

sparky's herxing has always produced very intense psychiatric manifestations - hallucinations, psychosis, rages, confusion, delirium, suicidal ideation, self harming. the most intense physical symptoms are joint pain, nausea, tremors, chest pain and migraines. the most intense period of herxing was when we first initiated IV treatment back in the fall of 2010. the worst of it lasted for 3 months straight. his symptoms were so severe that we could not leave him unattended at all. as we re-enter the aggressive IV treatment arena, our thoughts return to those very dark days and we know that we must prepare for the possibility of re-living that. sparky has little re-collection of the worst of those months however he does have an awareness of having been in a very scary state of mind. as futile as it may be, we are doing our best to try to prepare him and us for the possibility that we may find ourselves catapulted back in to this valley of the shadow of death, this darkest of dark places where mind and body are held hostage, encapsulated in what truly can only best be described as hell on earth. we are all aware of our deep, desperate need for God to carry us now.

we would appreciate prayers for endurance, perseverance and healing as we slay the bugs.

it is difficult to head into a treatment that we know will temporarily make him sicker and weaker than he already is - and we have no guarantee that this treatment will have the desired results. should this treatment fail, DR H has indicated that we will be between a rock and hard place. that was difficult news to hear. more than ever, we are aware of our desperate need for God's hand of healing over our lives. our prayer is that this combo of meds will be the method by which God delivers restoration and healing to sparky's body.

the words of the following song will be our anthem as we move thru the next 6 weeks.

carry me

i try to catch my breath
it hasn't happened yet
i'm wide awake in the middle of the night scared to death
so i prayed God, would you make this stop?
Father, please hold on the me, You're all i've got

carry me, carry me, carry me now
from my sinking sand to Your solid ground
the only way i'm ever gonna make it out
is if you carry me, carry me, carry me now
God, carry me, carry me, carry me

Jesus, calm my heart
come near me please
Lord, don't let these worries get the best of me
Oh, i believe, that You're still here with me
cause You meant what You said when You said You'd never leave me

carry me, carry me, carry me now
from my sinking sand to your solid ground
the only way i'm ever gonna make it out
is if You carry me, carry me, carry me now
God carry me, carry me, carry me now

i'm at the end of myself
i know i've got nothing left
feels like i'm stuck in the valley of the shadow of death
and i've been down here so long
i just can't find my way out
oh, God, i don't stand a chance
unless You carry me now
God carry me now

BALLS TO THE WALL

"It's balls to the wall time." 

those words spoken by DR H at the end of our appointment on wednesday. this in reference to the very aggressive treatment plan he is implementing for parker. 

once again, we're down in SF. it's hard to believe we're back again. we arrived monday and will be here until saturday. last time we were here was at the end of november. 3 months have come and gone in a blur. when we checked into our hotel (we stay at the same one each time) the manager greeted us with "hey, the celebrities are back." 

yikes. that's right! last time we were here, we had the Nature of Things camera crew in tow. reminds me that i have yet to post about our whole filming experience. sheesh. 

it is no surprise that the results of parker's exam were troublesome. the downward spiral he's been on since fall has taken it's toll. going in to this appointment, we knew he was doing poorly - even a quick glance gives that a way. he's puffy, black under the eyes, flushed, has had a return of  tremors and twitching, involuntary movements in his upper body and neck area and when he does walk, it is with a pronounced limp. his joints are swollen, his spleen is swollen and he has multiple abnormalities upon neurological exam. it is all indicative that current treatment protocols are failing to keep his infections in check. so, as DR H said, "it is balls to the wall" time. 2 new drugs. 5 IVs per day. and an interesting and a nasty tasting concoction of homeopathic remedies. also, on the docket, a possible trip to connecticut. yes. connecticut.

as soon as parker heard that, he quipped infamous lines from a favorite family movie, madagascar:

"you want to go to connecticut? connecticut?! 

what does connecticut have to offer that new york doesn't?" 

"lyme disease."

what connecticut has to offer us is a neurologist that specializes in treating lyme (and PANS - Pediatric Acute-onset Neuropsychiatric Syndrome) with IVIG treatment.

the cost of this treatment is exorbitant. 10 to 15 grand PER month.

so connecticut also offers us bankruptcy. ha ha. not funny.


IVIG is short for Intravenous Immunoglobulin. here's a very brief, over- simplified explanation; the immune system is made up of certain types of antibodies that help keep our immune system strong, healthy and able to fight off bacterial and viral infections. 3 of the really important immunoglobulins are IgA, IgM, and IgG. 

IVIG is a treatment that is a blood product that contains the immunoglobulin antibody G (IgG). IVIG is primarily used to treat certain autoimmune diseases and immune deficiencies. in the USA, it is also being used to help treat lyme and PANS/Pediatric Acute-onset Neuropsychiatric Syndrome patients. (Parker is on the PANS spectrum). Simply put, it helps to replenish/build up the IgG deficient part of the immune system which in turn helps the body fight the infection and makes the antibiotics more effective. IVIG also aids in recovery of peripheral neuropathies. 

using IVIG in the fight against lyme and PANS is standard care in some parts of the USA, including stanford children's hospital, which is in the process of opening up a IVIG Clinic to treat PANS. unfortunately, canada has yet to catch up. to receive IVIG therapy in canada, one must have a diagnosed autoimmune disease or an immunodeficiency.

here's the rub...parker sits right on the borderline thresh hold for meeting the criteria for an immune deficiency in canada.  he has almost no IgA, low IgM and an abnormal CD19+ count however his IgG is right on the cut off between normal and too low...we're talking literally just by hundredths of a point. because it is right on the cusp, he theoretically could still receive IVIG... IF he had a history of chronic infections. yes. that's right. a history of chronic infections. there in lies the absolute absurdity of it all. our medical system does not recognize lyme as a persistent, chronic infection. therefore, the immunologist that we have been seeing will not acknowledge his history. 

we have fought hard to advocate for him to receive this treatment in canada. insurance would cover it then. his immunologist has been unmoved. his response to our request that he speak with DR H about parker's case was met with a, "i'm very busy. i don't have time to call him." that was a bitter pill to swallow. he eventually did put in one call to DR H. unfortunately, he just left a message and has not returned any of DR H's subsequent calls. DR H will keep trying. 3 separate lyme specialists have all determined that there is a strong likelihood that parker would have a positive response to IVIG therapy. it is upsetting that the immunologist is so reticent to even hear out these expert's opinions. in the meantime, parker is suffering and we can't indefinitely wait on the hope that things will change here in Canada in a timely matter. hence the possible trip to connecticut.

the last 3 months have just been exceptionally difficult and somewhere round the middle of December, i got sidelined with a significant bout of depression.  in part, this is why my blog has suffered. of course, juggling the many hats i must wear - teacher, nurse, caregiver, wife, mom - is a challenge that seems to consume the entirety of every day. just tending to the parker's medical needs is a full time job in and of itself. i have no time to be a patient myself. the high level of stress and turmoil are not exactly conducive to healing either. neither is the barfing and food allergies. yes, my daily bouts of barfing have not stopped. on march 14th, i will have barfed my way thru an entire year. i was not surprised when my exam on monday, revealed that there has been a relapse of my lyme infection. i am only allowing it to be coined "a small one". however it does require a re-treatment of IV meds. (i have been off all IV meds since Aug 2011) for now, the treatment plan is for pulsed IV therapy - just 5 days per month. no big deal. 

there is more to update. there has been a whole rash of events that have occurred over the past 3 months. more to come...eventually. 

for today, it's balls to the wall time. parker's new treatment regime is off and running. we spent about 4 hours at the IV clinic at DR H's office. it went as well as can be expected...meaning parker feels horrendous but thankfully had no adverse reactions. once we are back home, we will continue this regime for the next 6 weeks under the care of a local lyme literate ND (LLND). it will be grueling for all of us. especially for parker. 

thank you to those of you who continue to stand with us in prayer and other tangible ways. over the last little while, many of you have been much more vocal in your support. i cannot adequately express how much it means to us and how much it bolsters our spirit when we hear from friends. please never underestimate or think that a simple message of, "i'm praying" or "thoughts are with you" is inadequate. for they are not.  

we are exponentially grateful to each of you. 

i will end this post by sharing a little letter that avery wrote the other day.

IT REMAINS UNSEEN

parker continues to do poorly overall. his pain levels and rages are intense and have remained significantly increased since this downward spiral began in mid october. our doctors have implemented countless approaches and nothing touches the pain. parker is at the end of his rope. evenings are the worst. many are spent with him whimpering or moaning in agonizing pain. 

the nystagmus that parker developed at the end of september also continues. 

there have been many theories as to what is causing it but so far no treatment approaches for any of the possible causes has helped. 

the results from the MRI he had in december came back clear. we were fully preparing for and expecting different results. we are incredibly relieved there is no tumor and that his brain looks "fine" but it is frustrating that the cause of the nystagmus remains unclear. 

on dec 27 we saw our first neuro-ophthalmologist (NO). he gave parker an incredibly thorough exam. he was very perplexed and intrigued by parker's case. he said he had never seen anything like this but noted that he mainly sees adults and that nystagmus is most often a childhood issue. while the MRI results provided some assurance that there is not an urgent issue behind the nystagmus, he felt it was necessary for parker to be seen by a pediatric NO. he was concerned enough to personally phone this doc in order for us to bypass the 4 month wait-list. we were seen by the physician assistant (PA) of this new doc for a preliminary assessment on dec 31 and were scheduled to see the actual doctor the following week.

the PA did the initial intake exam. it was very, very short. this surprised us as the referring doc had spent a solid 30 minutes examining and re-examining parker's eyes.

i felt that the PA was not taking enough time to observe therefore was not seeing the whole picture. i tried to diplomatically explain the symptoms and how they present. i know my kid's condition. i have been observing and monitoring it for nearly 5 months. 

she acknowledged that what we described was highly unusual but that what she had observed did not appear to be as severe. she then concluded that if the severity was diminished then maybe it was starting to go away.

"no, it's not diminished at all." i stated, "it was very intense last nite and right before we arrived this morning. it was present 4 days ago when he was examined by the previous NO doc. he saw it and that is why he referred us to your office."

I paused for a minute and then carefully added,
"the nystagmus is intermittent and fluctuates quite dramatically. one has to watch long enough in order to see all of that."

my suggestion that she had not yet seen the full presentation of parker's symptoms was ignored.

"hmmm, well, his MRI was fine. maybe this is a voluntary thing." she paused, gave parker a long, hard stare and then cryptically inquired,

"parker, are you making your eyes do this?" 

both graham and i nearly launched off our seats at her. 

yes, sparky has super powers and can make his eyes frantically rotate and vibrate on command.
that is absolutely absurd.

we almost did not return for our scheduled appointment with the actual doctor.  

but we did. 
we know that all his other doctors are concerned enough that we need to follow up. 

when we arrived the following week to see the doctor, she gave him a cursory once over and initially appeared to jump to the same conclusion that her assistant had. however, this time we did not mince words nor try to be diplomatic. i simply insisted that she needed to spend more than 5 minutes examining his eyes. i told her i would stand behind her while she examined his eyes and that she needed to watch them until i saw what we have been seeing for past 5 months. thankfully, she listened. she re-examined his eyes - (with me breathing down her neck) and then she saw it.

"oh," she says, "i see it. no! that is definitely not a voluntary movement."

no sh*t sherlock. glad we cleared that up. 

she then took video footage of his eyes and has forwarded it on to a 3rd neuro-ophthalmologist. according to her, this doc is the 'eye movement guru'. we are scheduled to see this new doc on february 18.

we wait. we watch. we feel as though we helplessly stand by under the unrelenting assault of this disease. there has never been an understanding of why this is happening but i've always determined within my heart that i would choose to see God in it. the longer this goes on, the more difficult that becomes. 

i contemplate.

i hear the faint buzzing drone of a lone summer wasp
i look for it
and
see it caught behind blinds in the bedroom of my son
it steadfastly bumps against the window pane 

seeing out yet not seeing the way out
it's perseverance admirable
it's stupidity obvious

my mind cycles round and round in an endless loop
the plight of the bee is lost on me
swallowed whole by the noise screaming within
an exhaustive assault of conflicting thoughts 
i seek you God
but do i see you?
some days yes
other days no
too frequently not

vision shrouded by the depths of the midnite blackness
the blackest of all black 
no light penetrates and 
so remains the mystery of God
unseen yet seen

behold creation in its splendor

i see Him in the rich golden hues of autumns color, 
i hear His creation in leaves crunching underfoot
i feel Him in the blustery winter's wind, 
tearing eye and blanching cheek
God is good
life is ugly

close eyes to the ugliness
shut out the messiness
endless suffering
torment of mind, body, soul
God is Good?

i float in misery
in the waves of the mystery
restless i stumble along unseeing
body, mind, soul do not beat as one
they war and they fight 

in an endless internal tug of war 
my tumultuous existence questions His ways

somewhere someone prays for sunshine
somewhere someone else prays for rain
same moment in time
clouds part
sun streams down 
"praise God for answered prayer" shouts one
is the other left to ponder their non-answer?
why one and not the other? 

mundane requests appear to be answered every day
what i perceive with my finite human mind
leaves me questioning the answers
when He answers
how He answers

i hear offered praise for answers;
the child that has arrived safely 
or 
the baby that slept thru the nite, 
or 
the job, the apartment, the car, 
or so it goes

we pray for healing
and we wait
we prayed for an MRI 
and had no wait
praise God for that answer
but
wait

that answer revealed nothing
only brought more misery in it's wake
red, raw, blistering, burning skin
that was an answer we did not need

my troubled mind whirs on 
His ways are not our ways
no kidding, Lord
will this life ever make sense?
can it?
should it?
how do i live without question? 

can i live in hell yet still see God?
how do i watch my child's endless suffering and still see God as good?

He is just
sovereign
all loving
He is good

some days, i find that hard to believe

what about the mother who prayed for her child's healing?
what is in her heart, her mind, her soul
as she lays her sweet baby to rest?
lays to rest in the cold, harsh earth
death
such a benign term for the most unnatural finality 

my child lives
i praise God for his life
but at what cost?
he lives an unearthly existence

confusion
convulsing heart
racing mind
i rage
i cannot see
i spit furor at what my eye sees

i'm on my knees
face flat on floor
sobbing, begging, roaring, pleading
heal my child, Lord

nothing changes
everything changes

my baby lays crumpled on the floor
a writhing heap of endless suffering
3.5 years
a childhood lost
innocence squashed under the punishing blows of unseen forces


God, today, my boy told me he doesn't think You love him

my very being collapsed within me
i cradle my crumpled, sobbing, endlessly aching child
i hold him tight
i weep, i cry, i grieve that he must wrestle with feeling abandoned by you

my fevered brain, my scorched heart, my sinking soul
searches for answers with finite mind
seeks for the truth amid twisted feelings
i seek to see for him, for me, 
i do not see the purpose
i do not see the plan
i question "this plan"
how can this even be "the plan"?

then a vision shifts into view

i see a cross
a crumpled, broken body
i hear 
"my God, my God, why have you abandoned me?"
God's own son knows our pain
slain for our gain

God's plan for our greater good

oh how He loves us
He loves you
He love me
He loves my son
with an infinite love too consuming for finite mind to comprehend


the answer is Jesus
there was a plan
there is a plan
even when it remains unseen

i watch
i wait
i pray

i pray
i wait
i watch expectantly

one day we will see