LORD, GIVE ME A FEARLESS HEART

this has been a stressful week


last week, while we were in the middle of researching options for PORT surgeries, i got a call


at the other end of the line was the receptionist from our GP's office;
"DR A" would like you to come in to discuss a letter he received from children's hospital about your son.


i nearly dropped the phone


"this can't be good" was the first thought that pounded in my ears


of course, unlikely as it seems, this letter could be something 'good' or at the very least, it may be about something inconsequential. yes, i could have my shorts all in a knot for nothing...however, i fear this letter contains a sinister plot... 


today is where the rubber meets the road
i will see DR A this afternoon and whatever this letter is about will come to light
and
i am SCARED


why?


i am scared that a certain pediatrician at children's hospital who has been incredibly vocal about withdrawing antibiotic treatment and has been pushing to remove parker's PICC line has succeeded in backing DR A into a corner.


i am scared that this meddling pedicatrician has the power to force DR A to write an order to remove parker's PICC line.


i am scared we are about to lose the little support that we do have here in canada. 


i am scared an order has been written to remove parker's existing PICC line and withdraw homecare nursing support.


i am scared that if we have to move forward with getting parker a PORT, that we will be blocked from accessing even basic nursing care for it here in canada. 


these fears are not unfounded. it's a long story as to how or why each of those fears is a possibility. the short of it is this - while DR A is supportive of the treatment parker is getting from DR H, he is not able to prescribe parker's meds nor can he order a PICC line or a PORT. however, he did assist us in getting nursing to care for parker's PICC. doing so, made him responsible for it - which means he can be held accountable - and yes, 'forced' to order it's removal. the medical community here is so hostile against lyme that the few doctors that do have the courage to walk alongside a patient with lyme, are targeted by their colleagues and licensing boards and subsequently raked over the coals by them. 


i am scared 
and
yet, i TRUST.
albeit
i wonder if my trust was truly solid, would i have such struggle within my soul with fear?


quite frankly, i'm tired of the fight. i'm tired of all this crap. i'm tired of hurting. i'm tired of being abandoned. i'm tired of the roller coaster. i'm tired of being at odds with the medical community here. i'm tired of being fearful of doctors. i'm tired of learning tough lessons.

i'm NOT tired of experiencing the amazing ways in which God works. i'm NOT tired of watching the miraculous ways in which he moves time and time again. i'm NOT tired of knowing that i can trust Him in ALL of it.


i pray i can face today with a fearless heart.

FEARLESS HEART

                                                        ~point of grace

For even the most trusting soul

This world can be a scary place

So much that we can't control

In every moment that we face

When a thousand what ifs

Whisper in our ears

We remember who's we are

And watch them disappear

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live, wanna live with a fearless heart

There are worries chasing everyone

It's evident in times like these

But I have found the confidence that comes

From time I spend on my knees

There's a truth I'm holding onto

As these days unfold

Greater is He, that is in me

Than he that's in the world

He's my strength, He's my shelter

He is with me all the way

He's my light and my salvation

Of whom shall I be afraid, of whom shall I be afraid?

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live with a fearless heart

SAY YES TO THE VENOGRAM

last wednesday, we got the news we didn't want. parker needs to continue with IV treatment. it's disappointing news and not what we had hoped for but we are not surprised. parker is understandably upset. he is fed up with taking pills and dealing with IVs. it's safe to say he's hit the wall. he has treatment fatigue and is battle weary. he has also spent the last 4 weeks having mentally arrived at the end of IV. he knew that it was a possibility that he could have his PICC pulled and be done with IV. he is having a very difficult time coping with the knowledge that he now must continue IV...and most likely get a PORT to boot.


since IV treatment needs to continue, we naturally assumed that we would need to rapidly move forward with getting parker's PICC replaced with a PORT.   we immediately began trouble shooting where in the USA we could have it done and then how best to make arrangements for that to happen in a timely and the most cost effective way. 


first order of business was to touch base with the surgical team that put in parker's last PICC. (the ones that discovered his collateral veins. based on his vascular issues, they did not think his PICC would be viable for more than a few months and recommended that his new PICC not be left in long term.) we wanted to know if we could have parker's PORT surgery done at their clinic or if they could recommend a surgeon that could. additionally, i was concerned that the collateral veins and subclavian occlusion could potentially complicate a PORT surgery.


i was put thru to the vascular nurse who assisted with parker's PICC surgery. she clearly remembered him...who can forget the ORDEAL that poor kid went thru. she definitely confirmed that parker's collateral/subclavian occlusion could potentially complicate a PORT surgery. for this reason, his PORT surgery should be done in a hospital setting.


in passing, i remarked at what a shame it was to have to lose this PICC - especially since, aside from the few issues we had with it in the first 6 weeks,  we'd had absolutely no problems with for the past 2 months.


"hold up," she said, "no problems?"
"nope. no more blood clots. no more lymph drainage. aspirates perfectly. runs no problemo"
she then surprised me by saying that his PICC might actually be fine to leave in ...but that we absolutely must get a venogram done. (a vein study) if a vegnogram revealed that his vascular issues were not worsening then it was actually advisable to keep the PICC in - and it could even be viable for another 4-6 months.


in fact, she went on to say that if his veins were holding steady with the existing PICC, that it could potentially be more damaging to his vascular system to pull the PICC and put in a PORT. especially, since the occluded subclavian vein means (most likely) a PORT would need to be accessed thru his jugular. 


ok. wow.
had't crossed our minds that the PICC he has could actually be safely kept in longer.


now, the challenge is to get a venogram done. again, this needs to be done in a hospital setting as parker reacts to contrast dyes. (a complication due to his mast cell disorder). obviously, it would be ideal to have that done here in canada. duh. if only it were that easy. this is a simple and common procedure. of course, all things pediatric go thru the children's hospital in our area. and well, we're all aware that help or assistance has not been forth coming from any doctors there. they have made it implicitly clear that, "as an entity they do not believe in the existence of chronic LD." - apparently stating something does not exist absolves them of any responsibility in managing or providing care either for the disease or anything treatment related. after all, how can you provide care for treatment associated with a disease that does not exist? 


however, the IV team of nurses at that hospital have been wonderfully supportive -  unfortunately, they can't provide any sort of care without a doctor's orders. regardless, i put in a call to them anyway. i updated the IV nurse on the situation. she was in complete agreement with the recommendations made by the american vascular nurse; that a venogram should be done and that keeping in the existing PICC was an option. she also stated that requesting a venogram (here in canada) was a completely reasonable request.


of course the challenge is scaling the enormous wall of denial in order to get a venogram done here. the IV nurse was hopeful she'd be able to find a doc to help. she said she'd try her hardest. 


she got a big fat NO at every turn.

we have one last option left to try and obtain the venogram here in canada. we will be pursuing this avenue this coming wednesday. if we get another big fat no then we will journey to the USA. again. 


we remain hopeful that some doc will say yes to the venogram.


whatever the outcome, we are resting in the knowledge that we can trust God to chart our path

THE NEXT STEP?

yesterday marked the end of the 7 day IV provocation trial Parker was on.


from where i sit the next step in our journey appears unclear. 


during the 7 day trial, we did see a return of psychiatric episodes. they were mild but they were undoubtedly there. they came at the 72 hour mark of restarting this particular iv drug. this most likely means one thing - parker still has bugs in his brain...and IV treatment is his best shot at eradicating them. and yet, due to collateral vein complications, his PICC line must come out. we've kept it in (nearly 4 months) for as long as we can.


i just want this all to be over. i want it to end. all of it to end.


last week parker hit a wall. he cried. he rarely cries. he rarely even complains. his birthday was in december. he was too sick to have friends over for a party. again. his big plan for his special day was to go for lunch with my dad. he was really looking forward to that. yet, he was too sick and in too much pain to even do that. his birthday lunch and dinner were eaten on the couch.

it was heartbreaking for graham and i. we went to bed with heavy hearts. the next morning, i mentioned to parker how i was sorry that he'd had a bummer day. with a puzzled look, he replied, "what do you mean mom? i had a great day."

gulp. he is an "old" 12 year old. i learn a lot from him. 


yet, we all have our breaking point. and last week, he reached his. he came into my room and lay down beside me. even tho' he didn't say anything, i could sense his sadness. it was emanating from him. at first giant, silent tears slowly rolled down his flushed cheeks. yet, he still quietly lay there,  trying his darndest to remain strong and brave. "there is strength in tears." i whispered. "it's okay to be sad, buddy. don't hold it in." and then it came. he sobbed for the pain he has endured. he cried out in the pain that he is still in. he grieved for all that has been lost. he vented and gave in to the hopelessness that is only ever a heart beat away. "i'll never get better. nothing helps. nothing changes. i've been sick for over 2 years. this will never end. i never see my friends. i hate taking pills. i'm tired of IV. i hate my life."


all i could do was wrap my arms around him and acknowledge his pain and his fears. yes, it feels like it will never end. yes, it is unfair. yes, it has been too long and too much and too awful. yes, it sucks so bad that it sometimes sucks all the hope out of me too...but there is always hope.

no matter how hard it is to believe, no matter how it appears, this will end. i can't tell him when it will end. i simply don't know. that is one of the hardest parts about this journey. there is no end date to aim for and to hold on to as a beacon of light. will it be 2 more weeks, 3 months, 9 months or 18 months or longer...there is no way to know...we must just hold on even tho' the end is an undefinable, indefinite time frame...we must hold on with no end in sight and somehow hold on to the hope and keep the faith and belief that it WILL end. we have to believe that. we have to hold on to that.


and now we arrive at today. and where we must go and what we must do. and what is the next step.


and i find myself contemplating not great options.


the PICC line must go. that much we know for sure. however, since parker's response to the provocation revealed there are (most likely) still bugs in his brain, then continued IV is the best option. IV most effectively penetrates the blood/brain barrier. it is possible to achieve that with oral treatment but far more difficult. continuing IV means pursuing a PORT surgery. with no support coming from the medical system here, this means it would be done in the usa. estimated cost is between $4,000 to $7,000. the cost plus dealing with our kid being put under general anesthetic as an out of country patient is unsettling and unnerving. yet, we have absolute faith that God would make a way, if that ends up being the best option for parker.


the other option? have faith that he's had enough IV and that oral abx would continue to keep him on the road to recovery. have faith that the right combo of oral meds would be enough to penetrate the blood/brain barrier. have faith that ceasing IV wouldn't cause a backward landslide. of course, if he deteriorated on orals, we would move quickly to get a port and re-start IV treatment, however would that lapse in IV be destructive to his over all progress? what if it gave the bugs time to proliferate in his brain again? as difficult as it still is, no one wants to go back to what it has been.  


yet, a decision must be made. 


that is the weight that sat with me yesterday as i waited for DR H to call. our appointment was scheduled for 1:45pm. it is rare that he is on time - (which is a sign of a good doctor, if you ask me.) he doesn't rush his patients or their appointment. as a result, he is often running at minimum 30 minutes behind. generally by afternoon, it is more like an hour or two. at any rate, i knew yesterday would be a long day of waiting and wondering what the next step would be. and it was....DR H didn't call until 4pm and worst of all - we MISSED his call. our stupid phone malfunctioned. we spent the next hour or so trying to get through to him. finally his receptionist got thru to us and our appointment got re-scheduled to this morning.


needless to say, by that time, i had just had it. the stress of the day wore me down and i was grumpy, jumpy and over emotional. i ate my way thru a bowl of ice cream, 3 oreos, 2 pieces of rocky road fudge and half a bag of licorice. not kidding. i was comatose by 7pm. perfect. just what i was after. even still, the tension still hung thick in the air. and the kids picked up on it. parker knows what options are being weighed. he's upset. he's so done with it all. after an initial angry vent, he went into shut down mode and just got really, really, really quiet. graham was on edge and dis what he does to cope - work. he buried himself in his office until 2am. great for the work video he's making not so great for his energy levels. avery had a major 2 hour long meltdown.  clearly, it was not a stellar nite.


thankfully, the phone co-operated this morning and DR H was only 15 minutes behind schedule. my appointment was fairly straight forward. and the next step in my journey was fairly clear and a plan of action was quickly forthcoming. (will update that tomorrow)


parker, on the other hand, not so simple...and we still don't know what our next step will be. DR H really felt he needed a few more days to mull things over. we don't at all feel that he doesn't know what to do. we believe he does. he just wants to take time to weigh all the options and make the very best plan of action. stopping IV treatment is not remotely ideal right now but he is trying to figure out if there is anyway he can work around it with oral treatment. if not, then we will have to move forward with getting a PORT. the weight of this decision weighs heavy on all of us. there is a lot riding on this and a lot of pressure bearing down on DR H. even tho' it sucks to have the unknown hanging over our heads for a few more days, we are so thankful that DR H is not willing to rush to make such a critical decision.


we expect to know what the next step on this journey will be by monday evening. we'd appreciate your prayers for wisdom for DR H this weekend. seeing as i've depleted our sugar supply, i shall face this weekend with full mental and physical awareness. therefore, we'd appreciate prayers for peace to reign in our hearts and home. 


in parting, i will close off with this prayer a friend, who is in the thick of her own fight with lyme, sent me this week. it's been a source of tremendous comfort and a much needed reminder to keep trusting. 

"COME TO ME, and rest in My loving Presence. You know that this day will bring difficulties, and you are trying to think your way through those trials. 


As you anticipate what is ahead of you, you forget that I am with you--now and always. 


Rehearsing your troubles results in experiencing them many times,
whereas you are meant to go through them only when they actually occur. 


Do not multiply your suffering in this way! Instead, come to Me, and relax
in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust."


  

SPARKY'S M.U.D

here's the M.U.D (Medical UpDate) on parker:


i guess the biggest news i can lead out with is that we will be stopping parker's IV treatment sometime in the beginning of january - possibly the first week. what a way to ring in the new year! parker has had a total of 16 months of IV treatment and is looking forward to being free of a PICC and all that it entails.

"viral picc" is going bye-bye!

this is a big deal and a step forward albeit pulling the PICC line and stopping IV treatment isn't because DR H feels parker is done with IV - rather parker's  naughty PICC, (whom he named viral picc,) and the development of collateral veins is forcing the decision to end IV.

parker's collateral veins

HOWEVER, DR H is hopeful that parker's symptoms and improvement will be sustainable with oral abx. AND that is exciting! 4 months ago, when parker's original picc, whom he named raymond PICC-aso, suddenly became no longer viable, we HAD to move forward with getting it replaced...without question he needed to remain on IV treatment. so while the PICC removal is premature, it is still a big deal and a "WHOOP! WHOOP!" because we think we can make it without it! 

viral picc and his pad during a lymph leak 

we are ALL looking forward to bidding viral picc farewell. he has been a very naughty and stressful PICC to live with - he's forced us to deal with lymph leaks, blood clots and bleed outs -  additionally, keeping up with the rigors of an IV schedule (at times parker's IV treatment was every 8 hours round the clock) is incredibly exhausting. parker is most looking forward to being able to fully submerge in a tub...(a PICC can't get wet) bathing with your arm above your head is not too relaxing. 


before the PICC removal takes place, DR H wants parker on one last very intensive IV treatment regime. this will be added into his existing treatment regime over the next week. once everything is incorporated, we will blast away on the new protocol for a solid 2 weeks. DR H has already prescribed a plan for the oral treatment that will follow. we have a phone appt with DR H on jan 3 as it is expected that there will need to be some adjustments and tweaking made - some of which is dependent on his response to this last course of IV treatment. 


it is very clear that parker must still be on abx. he is greatly improved but we are not out of the woods yet. not by a long shot. if he begins to decline on the oral treatment than we will have to resume IV treatment and because a PICC line is no longer an viable option, this would mean that he would have to have an IV PORT. (this is an IV device that is surgically implanted under the skin). we are hopeful that we and he never have to face that. currently, his most vicious infection is the babesia - and there are many potent oral medication options used to treat it.


way back in october, DR H (temporarily) stopped parker's antiobiotic treatment while we got the mast cell treatment protocol underway.
the reason this was done was two-fold:


first, it was done so as not to muddy the waters, so to speak. we needed to have a clear clinical view as to whether or not the symptoms that were suspected of being mast cell related were responding to the specific treatment for it. there is much cross over b/n the symptoms of lyme and systemic mast cell disorders. we were pretty certain which symptoms were mast cell related and which were lyme/babesia related but it was important to get as clear a picture as possible. (is that clear as mud!)


secondly, it is not unusual practice for a LLMD to put a patient on an "abx holiday" or to "pulse" abx - this gives the patient's body a rest from the meds and helps the physician re-evaluate the patient's health and symptoms. the goal of treatment is to put the infection into remission and kick start and support the immune system into taking over. the response of the patient during these drug holidays helps guide the physician in deciphering what the next step in treatment is needed and how best to address the specific needs of their patient.


during the four weeks that parker was off of the abx, we saw a positive response in the symptoms that were suspected of MCAD. primarily, these are flushing, loopiness/psychiatric outbursts immediately following any considerable exertion, mystery spots, chest/heart pain and syncope-like episodes (near fainting/blackouts). there was some lessening of his joint pain as well. it was wonderful to see such a remarkable improvement in those symptoms! however, his babesia/lyme related symptoms became more pronounced and his overall health deteriorated. once he was re-started on the IV and oral abx used to specifically treat babesia, he improved...albeit had to endure some pretty rough herxing. a wonderful and unexpected bonus of the MCAD treatment, is that his herxing has been less intense and better managed.


in fact, the MCAD/masto diagnosis really is the missing link to several symptoms that have puzzled and troubled DR H and DR D for quite some time. back in spring of this year, DR H kept remarking that he felt like he was "missing something" with parker. it is good to have found the missing piece to the puzzle. we are hopeful that parker's fight against lyme and babesia will be a little more straightforward and a little less complicated now that his MCAD/masto is being treated.


there is more dirt on parker but i think if i write any more at this point, it'll be clear about as mud...