THE GOLF STORY

Roy Kanda is a teacher from sparky's former elementary school. Roy, also, runs 5C Learning - an after-school tutoring program and through this program has been assisting me in educating sparky. 

he's aware of sparky's journey with lyme disease. during one of his tutoring sessions, sparky told him about this new IVIG treatment his doctor had prescribed. when i picked sparky up that day, Roy asked me a bit more about this new treatment. he mentioned sparky had said it was very expensive and that he wanted to help raise funds for it. 

a few days later he called us and excitedly told us about a charity golf tournament he has hosted for the past 3 years. the proceeds of it go to Kid Sport BC. he had spoken with the other event organizers and they had all agreed to donate 1/2 of all proceeds raised at this years tournament to sparky's medical treatment! 

we are so thankful for this kind and practical gesture!

the tournament is on august 23, 2013 at Guilford Golf and Country Club in Surrey, BC. the deadline for registration has been extended to July 30.

The tournament will be a "Texas Scramble" format. Festivities include a long drive competition, a kp competition, a silent auction, putting contest, a fantastic dinner, prizes and just good times.  

if you'd like to be involved with this tournament, please email me for the registration form... sngoertzen@gmail.com or event organizers at fivecgolf@gmail.com 

the tournament will also include a silent auction. if you would like to donate to the 5C Golf with a cash or silent auction donation, please email fivecgolf@gmail.com 

last week, we had a lyme friend and gifted artist, Linda Steele, donate the painting pictured below to the auction. read about Linda here or visit her blog Art for Nature and Life. we are so grateful and humbled that she would part with one her beloved pieces to help us.

as i blogged about in several earlier posts and at post titled, An Unfolding Miracle, sparky's medical team has prescribed IVIG, a specialized treatment. his doctor's have determined that he will need a minimum of three months of this treatment. he has undergone his first month of treatment and is set to undergo his next cycle of treatment this coming Wed, July 31, Thursday, Aug 1 & Friday, Aug 2. we had a phone appointment with DR H last week and he has increased the dosage of medication sparky will be receiving for this next round. this has also increased the cost. BC Medical does not cover any of this treatment...the medication for this treatment costs $4,000 PER month.

Dr H says it will take at least 2 full courses of treatment, before we should expect to see results. however, we have seen some promising improvements since his first round of treatment which took place July 3-5 (read about it at Elusive Elixir). we are very hopeful this treatment is working. 

if you can not be involved with this tournament but would like to help financially with Parker's treatment, we would be so grateful. You may send him a donation through our PayPal account - grahamgoertzen@gmail.com

thanks

THE ELUSIVE ELIXIR

sparky has finally started his first cycle of IVIG treatment!

FINALLY.

it's been a long journey to get here! in so many ways, IVIG has been an elusive elixir...first, just to secure this treatment was a year long battle - as i blogged about in the post called an unfolding miracle . then when we finally got it and had it in hand, his veins began collapsing making it impossible to administer! 

we began to feel as if this was the elusive elixir that would never come to pass.

now, here we are. finally. miracle of miracles.

DR H feels he's stable enough to begin the IVIG... this first cycle was originally scheduled to begin roughly 5 weeks ago...

but, suddenly and unexpectedly, 2 weeks before his first cycle of IVIG was scheduled to begin, his veins started to collapse. we were unable to administer his full doses of IV abx. as a result, he began to de-stabilize and decline. there is a greater chance of a successful outcome with IVIG treatment in lyme patients,  particularly children, when it is used as a combined therapy with IV abx. DR H had some concerns about moving forward as scheduled but after some discussion, we decided to move forward with a trial dose. we would use just a half dose and do one infusion and gauge his response to it. 

unfortunately, by the end of the 4 hour infusion, his pain and symptoms began to intensify. by that evening, his pain was so bad, he spent most of the evening balled up on the couch screaming and moaning. for the next 3 days, his joint pain was so severe he had to crawl on his hands and knees to get around the house. 

it was having the exact opposite effect of what we were hoping for.

we were incredibly discouraged.
however, DR H was certain that the flare of pain had more to do with the lack of consistent IV abx dosing than an adverse reaction to the IVIG. he reassured us by telling us that in his experience, and in that of many of his colleagues, lyme kids tend to 'tank' without combination therapy.

it was clear that something needed to be done about the vein issues that were impeding sparky's ability to get his IV abx. THUS the decision was made to move forward with the vascular procedures in the USA. this has given us a way to consistently access his veins and as a result, he's been back on full time IV ABX for 2 weeks now. he has gone thru several intense herxes (die-offs of the bacteria) - as a result he has had many days and nights where his pain levels have been unbearable but he has had some better moments here and there. this is a very a good sign. which now brings us up to this present week.


finally starting IVIG, the elusive elixir!

DR H has changed things up a bit from the original treatment plan because sparky flared with that trial dose of IVIG. he wants to proceed cautiously and slowly. therefore, the infusions will now take place over a 3 day period rather than 2 days. the length of the infusions will remain the same (4-6 hours each day). so this will make for long days.

his first infusion was wednesday. we spent a grand total of 6 hours in the doc's clinic...but everything went smoothly.
we arrived at the clinic at 9:15AM and got things rolling immediately.  

first, the doc sugar bear crispified him... 

in medical terms, this means he was pre-medicated with IV benadryl as there is a risk of allergic reactions with this type of medication

then, the infusions began. 
s.l.o.w.l.y.
1 drip every 10 seconds for the first 2 hours
then
the rate was moved to 1 drip every 5 seconds during the third hour.

his heart rate elevated with the increased rate. this is a common side effect but it meant that the infusion rate had to be slowed down to 1 drip every 7 seconds.

it was a long day.
i was very, very grateful when a friend dropped by with a coffee. 

let me pause here...and jump up on my awareness platform and preach from the pulpit for a moment.

the friend that brought me coffee was there because her husband recently contracted lyme. a locally acquired case - either in 100 mile house, BC or langley, BC area. maybe even from his backyard. no one will ever know for sure because they never saw the tick (this is not unusual as they are so tiny that most people never see them).

my friend's EM/bull's eye rash

what is unusual is that he got the EM/bull's eye rash and knew what that meant. in short order, he was able to get on abx. today, they were in the clinic we are at because the doctor here is lyme literate. they are in good hands with this lyme doc and have been prescribed adequate and aggressive treatment. i am thankful that my friend's husband is doing well. 

please, be aware, my friends, lyme is everywhere.

okay, stepping down now.

back to my sugar bear boy.

he slept a good portion of the first day which was good for him. boring for me. but i'm managing to get caught up on a bit of blogging which i enjoy and there is a steady stream of lyme patients coming thru the doors to see the doc here. i'm getting the chance to finally meet in person some of my sweet online lyme friends.

today, we were back at the clinic by 9:15AM again to start the entire process over. tomorrow (Friday) will be a repeat.

so, it has begun. the elusive elixir is finally flowing into my boy's blood stream. it is carried on a tidal wave of fervent prayers and hopes.

what is the hope?

the hope is that this will turn things around for him. that it will relieve his suffering. that it will put him in remission.

DR H has said we will not see benefit for 4-6 weeks and it could take two full cycles of IVIG before we see any improvements. the next cycle will begin in 4 weeks and is scheduled for July 31, Aug 1 & 2. visitors are welcome - (the clinic we are in is close to our home) please feel free to email me sngoertzen@gmail.com for the address for the clinic. i expect that it will be the same dosing schedule as this time around but will know for sure after i speak with DR H. (we have an appointment with him on july 16th). the 3rd cycle will be repeated 4 weeks after that. 

for now, the challenge is to push through this grueling schedule and keep believing. keep hoping. keep trusting...all the while not really knowing if this will work. it is an expensive gamble - each cycle of medication costs $3,000 - but we will keep moving forward in faith. we are so thankful for God's provision for this first cycle and are trusting He will provide for next months.

ON A WING & A PRAYER

this week sparky's first 2 doses of IVIG arrived. as is all things pertaining to lyme (& lyme treatment), this was not a straightforward process. in fact, it rarely is. in order to pick up many of our meds, we have to make a canada/usa border crossing. we call these 'drug runs' and we make them frequently.  

even though prescription meds are exempt
and 
everything we are doing is above board
and
we do this all the time,
we still find these drug runs stressful.

in general, our drug runs usually total between $500 to $1200. declaring that amount, after having only been in the country for 20 minutes, has raised more than a few eyebrows. we get it - our whole situation is a bit bizarre sounding and it is exhausting to try an explain to a grumpy border guard, so we are very  grateful when we are waved through at the border without having to provide a lengthy explanation. 

more often than not, this is the case but you just never know.
somehow, this time just felt a ton more stressful than usual...
this time our sojourn into the usa had been under 20 minutes
and
we'd be declaring close to $3,000.

on top of that, the whole shipping and delivery process had been a bit of a nail biter as the meds had been shipped from florida. they had to be kept cold so were shipped overnight express on ice. then we had to track the package like fiends to ensure that we made a timely pickup at the PO box. 

after all, there is so much at stake
and
so much hope riding on these 8 little vials of human gammaglobulin.

liquid gold, it is.
at that price, it may as well be.

pick up went relatively snag free - i say relatively because the package was addressed to sparky - and his name is not on the "authorized to pick up" account. in fact, he wasn't registered in the system at all so initially the mail gal couldn't even find it! all i can say, is that we are very fortunate that we are frequent customers.

we were in and out of there with our precious cargo in under 10 minutes. as the border crossing and guard booths came into view my heart rate increased, my insides wobbled and my hands started to shake and i uttered a breathless whisper of a prayer, "please, Lord, just have them wave us through." 

i breathed deeply and reminded myself that others were praying that too as i had posted this as a prayer request on FB earlier in the day...

"please pray custom officials wave us thru,

 despite the eyebrow raising dollar amount we will be declaring." 

just as we pulled up to the booth,
the officer inside turned her back to us and spoke into her radio.
my heart sank.
the one and only time that an officer pulled that move was because they were calling in a search team because, as we were told, the system had randomly selected our vehicle for a search.

yet, as the guard turned around to face us, her eyes were not on us.
i followed the direction of her glance
and
there, just past my passenger side and by an empty guard booth, stood a man. he was trying to open the door to the booth.
i heard the guard say, "excuse me."
the man did not look up.
i glanced back at her as she said it again, "excuse me. what are you doing?"
with her eyes still fixed on the man, she addressed us,
"anything to declare?"

"yes." came graham's reply, "$2,956.10 in prescription meds."
i held my breath.

she gave us a brief, blank look as she craned her neck, raised herself up on tippy toe and as she began to once again address the mystery man, she waved us through.

HALLELUJAH!

i caught a glimpse of the man as we drove away. he was an ordinary enough looking older gentleman. dressed in unassuming attire with a tool belt slung across his shoulder...but i can't help but wonder about the origins of this mystery man. after all, his odd presence heralded us thru the border on a wing and a prayer.

we face another issue that we are trusting we will be lifted up on a wing and a prayer too. we do need help. we are incredibly grateful that the help of family and donations from some friends, have made it possible for us to secure this first dose of IVIG. it means that sparky will be able to start this treatment within the time frame that DR H recommended... i'd also like to send a shout out to Infuserve America, a pharmacy that works hard to help uninsured Lyme patients access IV meds at as low a cost as possible. 

as you can see they helped us "save" a substantial amount on Sparky's IVIG.

please keep in mind that this is the first of what is expected to be a minimum of 6 doses of this medication. we cannot finance this without help.  the photo fundraiser that our friends kristie and alexis are holding on our behalf is next saturday and sunday - a mere week away. 

as it stands today, one person is registered to take part. 
surely there will be more? 
we are hoping that this number will increase. 

we are trusting for angels to show up for this too!

please don't delay!
sign up today!
you can book your session by contacting Kristie at 604-910-3866 or email info@dejongimages.com 
or
through our facebook event page at
Mother's Day Lyme Fundraiser

AN UNFOLDING MIRACLE

a few posts ago, i wrote about sparky's need to receive a treatment called IVIG. we have been fighting to get him this treatment for close to a year. he sits right on the threshold of meeting the criteria to receive this treatment in canada. if it was doctor prescribed in canada, it would be covered by insurance. it is an expensive treatment at a cost of approximately $10,000 per dose.

in canada, this treatment is generally reserved for those with certain autoimmune conditions or those patients with immunoglobulin deficiencies (primarily immunoglobulin G). sparky fits the criteria for immunodeficiency. lab tests revealed he is low in all three of the primary immunoglobulins that help make up the immune system. they are called IgM, IgA and IgG. the IVIG treatment replenishes the IgG levels. additionally, sparky has chronic low WBC, high lymphocyte count and high CD 19 B cell counts. these results show that his immune system is depleted and has gone into over-drive.

so, yes, his immune system is depleted AND hyper active! confusing right? the hope is that IVIG will treat both these issues that are seemingly at odds with each other. the aim of IVIG treatment is two-fold; the first is the infusions will "top up" the IgG levels of the immune system. by replenishing the IgG levels, his immune system will be better equipped to fight his infections. secondly, a better equipped immune system can respond to infection and work more efficiently - rather than hyper-reacting. 

to meet the canadian criteria for IVIG, a patient must exhibit deficiencies in these antibodies (primarily IgG) as well have a history of chronic infections. so he fits the bill...one would think, right? the problem is the immunologist he has been seeing doesn't see his history of chronic lyme as evidence of a prolonged and severe response to infection. duh. i know. bang head here.

we've tried to change this opinion for many months. but in the end, the door to medical treatment in canada was slammed shut with a resounding thud. 

this put us between a rock and hard place. a few months ago, we weren't even sure that it would be possible to access this treatment thru the USA. at our last appointment with DR H (end of Feb) all of this was discussed. he began to move forward with researching options. in the meantime, he prescribed the balls to wall treatment as a one last ditch effort. the hope was that this very aggressive course of treatment would be enough to miraculously turn things around enough that it would negate the need for IVIG. 

it has not. there has been little response - good or bad - to the balls to wall treatment.

i had a follow up phone appointment with DR H 2 weeks ago. we discussed the fact that there has been little change in sparky's condition. so, the time has come. he believes that sparky is in dire need of IVIG. while on the phone with me, he called a neurologist in connecticut to see if he could take sparky on as a patient and get the ball rolling on IVIG...the treatment cost alone would be $30,000 plus doctor's fees and travel costs to connecticut.

i got off the phone with DR H and prayed for a miracle. 

aside from the mind boggling cost, we had reservations about him undergoing this treatment so far from home in the USA. there is a slight risk of a serious allergic reaction or other complications occuring. as much as our faith in the canadian medical system is frayed, we'd really rather be in our own country for a medical emergency...even if there is only a small risk of an adverse reaction.

we just simply prayed
and
we asked you to pray.

pray for a miracle.

fast forward and i have great news to share. 

connecticut is out!

DR H called the beginning of last week to give us the good news that he would be able prescribe the IVIG and that he had been able to find a pharmacy that could provide the medication for a substantially lower cost.

this meant that we would not need to travel to connecticut. we would just need to travel to SF every month for the next 3 months in order to receive the treatments...or, DR H said, if we could find a canadian doctor to supervise the 6 hour long, twice per month infusions then we could have them done here.

again, we prayed for a miracle.

by last friday we had a canadian doctor lined up to supervise the infusions in a clinic.

accessing IVIG treatment has been near impossible for a year... and now in a matter of 2 weeks, it has become possibility. one thing this journey has taught me is to expect miracles. our God is the God of the impossible. how else have we made it this far? sure, it would be far simpler (and a whole lot cheaper) if God just reached down from heaven and supernaturally healed us. i know, right! yet, He has not. rather He has taught us to seek His direction, walk by faith and Trust Him with the directions and details. after all, He has the master plan.

when it comes to this next path set before us, i have a keen awareness that God's hand is over it. this treatment is a serious undertaking. there are risks involved and there is no guarantee that this will work or help. yet, over the course of the past 2 weeks, the concerns that we had, have slowly melted away. we have had 3 doctors that specialize in treating lyme all conclude that this treatment could be the game changer. that this could put sparky in remission. that this may finally bring relief to his suffering. sparky was seen by our seattle doc, DR D, this week. she has a different way of approaching things, so we were curious as to what her opinion would be. after examining and evaluating sparky, she concluded that IVIG could be "the big wow".

there are some minor details to figure out and still one major hurdle to leap but we feel we are standing on the precipice of an unfolding miracle. the biggest hurdle is financial. we have been able to reduce the cost of treatment substantially but it will still cost us roughly $10,000 out of pocket. we do not have $10,000...but we have been to the bottom of the barrel before and somehow, someway God has provided. often in miraculous and humbling of ways. why should we expect now to be any different? indeed, He has already began to meet our need - last week, a teacher (from sparky's former school) approached us and asked if he could help raise funds for IVIG. he hosts a charity golf tournament every summer. he, along with other organizers, will be designating half the proceeds from this year's tournament to sparky's treatment. we are blown away! while we are not sure of what the outcome will be, this has given us hope and will help to bring us one step closer to IVIG.  

above all else, we strongly believe that God knows what sparky and his battle weary body needs. He is the great physician. right now, IVIG seems to be the way to go.

we are praying and moving forward in faith, trusting for His miraculous provision.