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.

SUGAR BEAR CRISPIFY ME

one day we were in the cereal isle of the grocery store and avery suddenly pointed at a box of sugar crisps and said, 

"sometimes sparky looks like the sugar crisp bear"

she was right. sparky does closely resemble the sugar crisp bear when he's on narcotic pain meds
or
when he's herxing and neurotoxic

we all had a chuckle over it and from that day forward, whenever sparky is loopy or medicated, we call him the sugar crisp bear.

we knew he would need sedation for one of the procedures he recently had. he, also, had to be pre-medicated with benadryl. so, he knew he would head into his sugar crisp bear state of being.

once he was prepped for surgery and a peripheral line had been placed, they were ready to give him the sedation. 

he looked at the nurse and said,

"go ahead, sugar bear crispify me!"

obviously, THAT had to be explained. the sugar crisp story gave way for a moment of lightness in what was a bit of a tense situation for everyone. 

for reasons unknown, they had difficulty sedating him and it took a considerable amount of mediation before he was crispified.

because the sedation wasn't kicking in, the surgeon said that it would be ok for graham or i to sit in on the procedure - so long as we could handle it. after all, they had their hands full with sparky - the last thing they needed was another patient.

i could barely contain my excitement! are you kidding! handle it? i was all over that - hek, i would have scrubbed in and assisted if they'd offered! 



the nurses told him that a side effect of the sedation was that it makes your nose itch. if that happened, all he had to do was let the nurse know and she would scratch it for him.

sure enough, it wasn't long before he had to take her up on her offer.

after several more doses than expected, he eventually succumbed to the sedation...and in his crispified state he did encounter a ginormous bowl full of noodles, grew 7 fingers and a had a giant spoon chasing him.






it's hard to believe that 2 weeks have already come and gone. his recovery and healing from the procedure has gone way better than expected. PTL! we had hired a private nurse to come in to help with care...a great big, burly guy nurse. he was super - however, after one visit, and observing my care techniques, he felt that i was more than capable of taking over and doing it myself. 
ugh. 
am i capable? yes. 
do i want to shoulder the responsibility myself? NO. NO. NO!

somebody, please, sugar bear crispify me!