LYME LDI IMMUNOTHERAPY REVIEW

LDI/LDA IMMUNOTHERAPY is a fairly new treatment for lyme. i know there is a lot of buzz about it in the lyme commuity. some folks are finding it very helpful. others not so much. i have had several inquiries asking for an update on our experience with it. it's hard to believe that both sparky and i started this treatment almost exactly year ago today! 

(you can read my original post about LDI/LDA Immunotherapy by clicking this link)

it has taken a really long time for me to reach any sort of conclusion on whether or not it is helping us for several reasons:

first, for the longest time, i really felt like i had no definitive answers on whether it was helping, flaring, or doing nothing at all! 

second, it is a slow treatment process - the dosing occurs once every 7 weeks. even with using ART testing, it can take several rounds before you find the 'right' dose for your body... which means many months can go by before you even find a therapeutic dose! then it can take several more rounds at the therapeutic dose before you experience any sustainable/notable changes in symptoms. 

third, add in the usual unpredictability and complications that are par course for treating lyme and well, the results of LDI/LDA have literally been about as clear as mud for the longest time! 

fourth, there has been a lot of drama and trauma in this house in the past 7 months which has made writing difficult.

here's the basic crux of it: it's a mixed review.

it does not appear to have worked for sparky. he is no longer on it. but wait, we may re-start it down the road! 

it does appear to be working for me...although i have not used it to treat lyme (yet)... i really do believe that this therapy is helping my body heal - i think my experience with using it to treat my other issues (strep, mold, mycoplasma, chemical & food sensitivities) is relevant to the lyme/chronic illness community as many of the issues i have are co-morbid with lyme. i am working on writing an update about it.


i know most lyme patients are seeking info specifically for LDI in regards to lyme. so the remainder of this post will address my take on sparky's experience as he was specifically treated for lyme with it. 

for weeks i've been laboring over this update - ack. i'm so frustrated with it! i guess i've struggled with thinking what is the point of writing a detailed account when the simplified answer is "no, it didn't work".... on the other hand, i'm a detail oriented sort of girl and so i quite naturally digress to writing lengthy accounts. all things considered, even though it doesn't appear to have worked for sparky, i do think LDI is a worthy tool to consider in the fight against lyme. 

initially, LDI therapy was brought up in regards to using it to treat sparky after his relapse with lyme began in jan 2015 (read about his remission/relapse here)

parker has immunodeficiencies - primarily of iga, igm and igg. i also have immunodeficiencies so there could be a genetic correlation but there is speculation by his medical team that living with lyme has depleted his immunoglobulin levels. we did not know (still don't) know what caused his relapse in january 2015 but given all the immunological findings on him, we did feel like there an auto-immune component was a piece of the puzzle. 

therefore, trying LDI made good sense...yet, treating lyme is a tricky balancing act and knowing when to add additional therapies into your treatment plan often presents a conundrum. at the time the LDI was presented to us as a treatment option, sparky was 4 months into his relapse. he had only been back on abx and iv therapy to treat his relapse for 6 weeks. at that point, the abx treatment had stopped his downward spiral and he was just beginning to show signs of improvement.

we knew he was at a vulnerable place but the doctor that recommended he start on LDI has been part of his medical team since 2010. she knows his case and his body really well. we all agreed that LDI was the next right step even though we were concerned about provoking an inflammatory response while his body was already pretty reactionary. 

LDI THEORY note: 
basically, the goal of LDI treatment is to find a dose that is big enough to signal the immune system to calm down but small enough to not cause a huge inflammatory reaction. finding the right dose can take a few cycles... it is not unusual to have big flares when first starting. once the appropriate dose is found, there can still be flares in symptoms for the 7 days following each dose. as treatment continues, the patient should begin to experience a gradual lessening of symptoms and flares between each 7 week cycle of treatment. 

sparky's doctor wanted to avoid a big flare since he was still in a weakened state from his relapse, so he was prescribed a very micro dose.  additionally, his doctor felt that an underlying issue with strep could be contributing to his never ending joint pain. since LDI for strep does not historically cause huge flares, he was started on the LDI for Strep first. 

he had his first strep LDI dose in april 2015. 

he had no discernible response - good or bad - in any of his symptoms.

he was given the LDI dose for lyme the following week. 

unfortunately, even the baby dose caused a huge flare. 
(you can read details about that at The Pretty Pill Protocol)

this sucked and caused us concern but it was not entirely unexpected. altho' the duration of his flare - 6 weeks - caught everyone off guard. but there were so many variables impacting his health, that it was really difficult to know whether the LDI was the full cause of the flare or just a contributing factor. his medical team felt that it was important to keep him on it.

so we decided to stick it out and give it another try with an even smaller dose. 

7 weeks later, he was given his next dose. 
he did not have as big a flare and seemed to do a bit better for a few weeks following that one.

after his third dose, he had a flare and his body never seemed to right itself after that. his symptoms continued to be all over the map all the time and there was a slow but steady decline. 

all in all, he had 3 doses of LDI for lyme and strep. which is 21 weeks in total. 

his fourth dose was due during the first week that he was going to be in treatment in kansas. we debated whether or not to bring it and continue it or not. LDI is in pre-loaded syringes and it needs to be kept cold.  bringing it with us meant we'd have to travel with a loaded syringe on ice. with 2 days of INTERNATIONAL travel -border crossing, a 5 hour drive plus 2 flights - ahead of us we knew it could potentially complicate our travelling. trust me, crazy stuff happens when we travel! if you've been a blog reader for a while then you will know that we NEVER FLY UNDER THE RADAR (remember Sandeep and The Security Breach?) our trip to kansas was NO different. even without the syringe on board, there was airport drama this time around! 

while waiting for our connecting flight to witchita from chicago, imagine my surprise when i looked down at my boarding pass and discovered i was flying as a man! OKAY...AND NO ONE QUESTIONED THAT? there's a hit to the ego.

but wait that was no biggie compared to what happened on our return flight. that story is worthy of it's own post - it's one of those 'only that would happen to shannon' ones.

back to the reasons for leaving the LDI behind - when we made the trip to kansas we felt like we were embarking on a whole new methodology of treating sparky. we wanted to fully embrace the new. given that we had not really seen any benefit from the LDI and he was steadily declining, we opted to let it go.

i guess the rest is history as they say...

we went to kansas and that didn't work out so well. (read about that at hope is what we crave.) we're still piecing the puzzle that is sparky together - and working towards next treatment steps. we have several upcoming doctor's appointments and that fourth dose of LDI is still sitting in our fridge. i don't think he is in any condition to re-start it right now but i'm not opposed to re-assessing it for him further down the road.


if you made it all the way to the bottom of this dry drivel, thank you for reading! i don't know that it this review will be of much benefit but i hope some one finds it helpful!   

PS i am about half-way thru writing about my own experience with LDI/LDA. it's a more positive one.

A TOUGH BREAK

so this happened on saturday.

parker had a bit of a crash while mountain biking. his clavicle (collar bone) is broken and displaced. it is also seperated at the shoulder. he will be having surgery (most likely) on monday.

my last update about our sparky boy (read hope is what we crave) was about how he was and had been very ill for the past 6 months. shortly after i posted that he had a change in treatment which resulted in a total 180 in his health. over the past 4 weeks he has experienced a rapid and radical improvement in all his symptoms... he had now been re-building strength, shooting hoops, riding his bike and had even been able to go to school several times. it felt like a miracle. we just hadn't yet talked about it with anyone outside of family because it was all so new and still felt tenuous. he was/has been improving BUT he was (is) still living with daily symptoms and day to day flares. and we (along with DR H) were still concerned that things could just as suddenly decline and he could head downhill again. we felt a little, okay actually a lot scared that the rug could be pulled out from under him at any moment.

turns out the rug is his bike.

the crash occurred in a bike park on the sunshine coast. the medics at the park were fantastic and super compassionate. he had to endure coming down the mountain - they could have put him on a stretcher - but he chose to walk down (with help) and then a long wait in local ER. he then had to endure a 90 min ferry ride and 45 min drive to hospital where we live. he was given a shot of toradol after the accident but until we arrived at our city hospital the day after the accident, he'd just been on tylenol and advil to manage the pain. needless to say,  the last 24 hours have been intense & traumatic. but parker is tough as nails and extremely stoic. we are amazed by his strength and resiliency...and his humor. however, this is a really tough break on every front. appreciate if you could keep him in your thoughts and prayers.

Waiting for ferry.
He says the joint pain he experiences due to lyme is worse than the pain from his break.

i will be updating as i can.

DEAR EXTRAORDINARY & BRAVE SPROUT

our dog harrison is a rather unique dog with an unusual skill set - he dabbles in DIY projects, sews, tweets, loves plaid, surfs the internet, never tires of eating cheese and recently has been moonlighting as a Lyme PAW-ster boy and advocate (aka #lymepooch).

(read more about harrison here or visit his facebook page here). 

harrison also has a really big heart for kids with lyme. he was on the computer more than usual this week - turns out he had some stuff he needed to get off his chest. i let his paws do the typing which ultimately culminated in him writing a very special blog post for kids with lyme. 

so, yes, you are about to read a blog post written by a dog. will wonders ever cease? apparently not as he also has excellent punctuation and command of the caps lock key. unlike me.

so without further ado, i hand over this post to our wonder pooch, harrison...

Harrison here...so it's been a pretty ruff here since Sparky started his new treatment and it's made him really sick. His heart hurts too. I can hear the aching in it. And I'm feeling sad about that.  

And you know what? I can feel the heaviness and hurt in my people's hearts too.

It's got me thinking -  I bet there are a whole lotta other kids with lyme in need of a big ol' lymepooch smooch because I can actually hear the aching in each and every one of your brave and bruised warrior hearts. (Dogs have exceptional hearing) So this goes out from my heart to yours...

Dear Extraordinary & Brave Kids with Lyme,

I know what you are dealing with bites. Big time. In fact, it downright stinks!

I can feel the way your tender little heart is heavy and weighted down by this battle. And that life just feels scary and hard and really, really tiring.


You've probably grown really weary of taking all your meds - especially when they make you feel sicker. I know it's super duper hard to keep taking them when they don't seem to be helping. Chances are you are probably thinking,

"What's the point of taking all this stuff when it's not making me feel better or grow stronger?"

Have you ever wondered about how things grow? I sure have. I live in the city and I don't have a back yard where I live so I don't have much experience gardening. But I like learning about stuff, so one day I planted a little seed.

I had to bury that little seed way down deep in the dark earth - far away from light and life. Then I had to take care of it. I had to water it, feed it and make sure it got some sun. And that was kind of weird to do because all I could see was a little pile of dirt. 

Do you know why it was super important that I keep taking really good care of that dirt pile? Because my tiny little seed was actually sprouting way down there in the dark! Even though I couldn't see any signs of life, that little sprout was growing every single day. 

It takes a really long time for a little seed to sprout and then grow strong and tall enough to push through the darkness into the light. 

It was really frustrating and tiring to do all this stuff to take care of my seed when all I saw was a pile of dirt and no signs of life. It was really hard to even believe that my little seed was sprouting and growing underneath all that dirt. I had to be so patient and just trust that all the things I was doing to take care of that little unseen seed was really helping it to sprout and grow.

It's kinda the same with lyme treatment. You gotta trust that what your parents and doctors are telling you to do is helping you heal and grow. You have to keep believing that all those pills and IVs and water and healthy food is actually helping your body heal - long before you feel stronger or healthier. 

Here's the thing - I can't tell you exactly when you'll finally feel better...but with absolute certainty, I can tell you this: 

You are extraordinary,
you are brave,
and
extraordinary and brave people overcome bad stuff every single day!

You are one of them! And just like that little sprouting seed - you are growing stronger and healthier every day - even if you can't see or feel it right now.

I know it's really hard to even believe that you are extraordinary and brave when you feel so bad and have been sick for a really long time.

Chances are that sometimes, late at night, as the world sleeps, you lay awake in a crumpled heap of pain staring into the dark of the night and you feel very alone, very small and very scared.

Chances are you think about a lot of tough stuff and maybe you've got some secret fears and worries;

Like how bewildering it is to live in a body that works for an hour or two and then quits for days on end.

How some of your symptoms are so scary you can't find the words to describe them.

How some of your symptoms are so confusing that you hide them from your friends and family.

How sometimes you don't even tell your parents how bad you hurt cuz you don't want to worry them.

Chances are you worry about the future - you wonder when or if you will ever get better. If you were born with this disease maybe you've even thought you were destined for a lifetime of sickness.

Chances are you've lost friends and sometimes strangers stare when you roll by 
and maybe all of that makes you think that somehow you are unlovable, unworthy or weird. 

Chances are you've had some teachers that didn't believe you when you said you were trying your hardest but sometimes it's just really hard to remember stuff or read or write. Maybe they even said you were faking it or just being lazy.  

Chances are you've had some doctors tell you they don't believe you are sick. They may have even been downright cruel and laughed at you and said you were just using your wheelchair to get attention.

When people, especially big people that are supposed to help us, don't believe in us or say really hurtful things or even bully us, well, that is super confusing, frustrating and maddening. It can bruise your heart and tear you down. It can even make you doubt yourself or hate yourself.

I know that sometimes all of your thoughts and feelings get all twisted up inside you. Sometimes they make you explode and cry and scream and rage. I know how sad and confused and maybe even ashamed you feel when that happens.

I want you to know that it is perfectly normal to feel and think about these things. I also want you to know that not every thought we have is true! Thoughts can be real tricksters - sometimes they lie to us and when we believe those lies, we start to feel really bad about ourselves. In our house, we call that stinking thinking!

Stinking thinking can make you think that the bad things that happen are somehow your fault or you deserve them or that things will always be really bad.

I know that sometimes you think that maybe it's some how your fault that you are sick - maybe you told a lie once or were mean to someone or got sassy with your parents and that's why you are sick. Maybe you even think you did something so big and bad that you actually deserve to be sick and in pain.

Dearest beloved sprout - it is not your fault that you are sick or not better yet.

I know that sometimes it is really hard to remember stuff or write or read but that is not you - that is the bugs in your brain. You are not bad or dumb. Those bugs are! This suffering that you are enduring it has made you kind, thoughtful and wise beyond your years. 

And that wheelchair that you are in - you didn't choose it for attention...you use it to DO life... even when it is hard, you hurt all over and you know people are going to stare, you get in that chair and show up to do life the best way you can right now. Can you see how extraordinary and brave that makes you?

Dearest extraordinary and brave sprout - you are NOT lyme!  You are SO MUCH MORE than this thing that has taken up residence in your body. 

You are just like that extraordinary and brave little sprout - you are an unfolding miracle, a downright masterpiece, a lovable, worthy, tough NINJA sprout that is growing and healing in spite of all the dirt and darkness that surrounds you.

You know how I know that you are extraordinary and brave?

Because you woke up today and even though you felt horrible and it feels like everything stinks, you kept fighting.

WOAH - something here actually does stink for real! 
Oh, wait, my bad, I just farted!

Pardon me!

OOPSIE POOPSIE!

I think you just smiled, didn't you?


Farting does that to people - even big people (but sometimes they act all huffy and proper about it cuz they're a bit embarrassed by it. The thing that is funny about that is the older you get the more you fart because you have less control in that area of your body!)

I bet you're grinning now... maybe even giggling a bit.

You know what?
That makes you extraordinary & brave - because, in spite of how bad you feel, you are smiling.

Just PAW-se for a moment and think really hard about that.

You just smiled... 
Maybe you are so sick right now that you haven't been able to leave your bedroom for days, or play in weeks, or got to school in years -  yet you are sitting there smiling.

That makes you extraordinary. And brave. Really, really brave.

You are NOT lyme - You are an extraordinary sprouty-person living a really brave life.

I see that. 

There are going to be days when it gets really, really hard
and
hurts more than you think you can bear 
and
you are not going to feel extraordinary or brave.

When you have a day that just stinks so bad, I hope you'll remember this...

You are an extraordinary sprout living a really brave life and this gassy pooch is rooting for you. I love you and I believe in you.

Affectionately yours,
Harrison Phineas Goertzen, #LymePooch

LDI IMMUNOTHERAPY FOR LYME

sparky is starting LDI Immunotherapy today (april 21). 

this will be the first dose of what will likely be many.

sparky has been fighting chronic lyme and co-infections for 5.5 years now. every system of his body has taken a real beating. he has had a chronically elevated lymphocyte count and elevated B cell count since getting sick in sept 2009. in the last few years he also developed immunoglobulin deficiences - specifically in sub-classes IgA, IgG and IgM. since he fell ill again in january 2015, his white blood cell (WBC) count has been elevated and steadily climbing as well. 

here's a very short and simplified explanation of what that all means;

LYMPHOCYTES
lymphocytes are a small white blood cell that play a large role in defending the body against disease as well as being responsible for immune responses. there are two types of lymphocytes - T-cells and B-cells. the B cells make antibodies that attack bacteria and toxins. the T cells attack the body cells that are overtaken by a virus or bacteria. lymphocytes are often present at sites of chronic inflammation.

IMMUNOGLOBULINS (Ig)
immunoglobulins (Ig)or antibodies are proteins made by the immune system to fight antigens (antigens are foreign substances such as bacteria, viruses or toxins). the body makes different immunoglobulins/antibodies to combat different antigens. IgA, IgM and IgG are Ig subclasses and are often measured together (done via blood test). the results give doctors important info about how the immune system is functioning - primarily in relation to infection and autoimmunity. sparky has had extremely LOW levels & deficiencies in ALL three of the following Ig sub-classes for several years now.

IgA - is present in mucous membranes and helps defend the body against respiratory illnesses and GI tract infections. 

IgM - found in blood and lymph fluid. first antibody made by immune system to fight new infection

IgG - most abundant antibody and protects body from bacterial and viral infections

WHITE BLOOD CELL COUNT (WBC)

WBC are important part of the immune system and help fight infections by attacking bacteria, viruses and germs that invade body. elevated counts generally mean your body is fighting an infection and/or indicate other problems such as inflammation, trauma, stress, allergies etc.

Ok, phew! are you still with me? i know that's a lot of medical stuff to digest - and actually it's just the tip of the iceberg but hopefully enough that you can grasp a bit of an understanding.

WHAT DOES ALL THIS MEAN IN RELATION TO SPARKY?

in short, this basically means that his immunoglobulin deficiencies, high lymphocyte & b cell count coupled with the elevated WBC are indicative of BOTH active infection and an inflammatory/autoimmune response to that infection. his doctors believe this makes him a good candidate for LDI immunotherapy.

what is LDI immunotherapy?
(oh no! here we go again - this is a simplified explanation)

LDI therapy was originally named Enzyme Potentiated Desensitization or EDP. EDP/LDI is a treatment that has been used in europe for over 40 years for all types of allergies, autoimmunity, and other immune hypersensitivity reactions. recently, doctors have begun to use it to treat lyme and co-infections.

it is done with injections of low dose antigens - an antigen is a toxin or foreign substance that causes your immune system to produce antibodies to fight that specific antigen. (in sparky's case dead lyme/borrelia is the antigen being used). the antigen(s) are combined with a special immune moderating enzyme (called beta-glucuronidase) to induce the production of antibodies and immune regulator cells. these cells train the immune system to not have an over-excited response to the antigen.

the key to LDI is this enzyme - beta-glucoronidase - which attracts certain specialized white blood cells called t cells that are involved in the immune response and makes them pay attention to the specific antigens that are mixed with the enzyme. the enzyme then causes a down-regulation of only the part of the immune system that was over reacting to the included antigens.

LDI injections are given at 7 week intervals and the patient receives a dose of antigen that ranges from 1C to 5C dilution.

however, in lyme patients, the reaction or symptom flare that the LDI can trigger can be quite severe and difficult to control. in LDI therapy for other conditions, the 'rescue' for pulling a patient out of a bad flare is the administration of the corticosteroid drug called prednisone. prednisone is an effective immunosuppressant and the use of any sort of immunosuppressant can be very dangerous for a lyme patient. therefore, in an effort to stave off any sort of huge reaction, lyme patients are generally started at the lower end of the dosing dilution scale.

sparky's body is already very reactive so he is being started on a MICRO dose. his first dose is 15C. this is miniscule! (the higher number actually means a smaller dose of the antigen- so confusing i know - medicine is so weird!)

traditionally, a patient only receives LDI injections every 7 weeks (the immune system has a memory and doesn't like to be reminded of an antigen more often than this) however, in sparky's case and because his doctors are actually "undershooting" with this micro dose (meaning it may be too tiny to actually initiate any sort of response), they will incrementally titrate up his LDI doses each week for next 3 weeks - starting at 15C, then 14C then 13C.

if he experiences a bad flare of his symptoms during this time, this titration dosing will be stopped. if he doesn't flare then he will receive all 3 doses over the next 3 weeks and then under go the second stage of dosing 7 weeks after that.

so that is where we are at. today, sparky will start this new cutting edge therapy. 

the objective of the LDI therapy is to treat the auto-immune aspect of sparky's illness - to modulate the immune and inflammatory responses his body has in response to the bacterial infections he has. while he under goes this therapy he will be closely monitored by DR D, his seattle lyme doctor. additionally, he will remain on aggressive antibiotic treatment under the care of DR H (his primary LLMD in SF) as his elevated WBC and markers for strep, lyme, babs, and bartonella continue to indicate active infections. DR H and DR D have partnered together many times before in order to provide sparky with excellent medical care. we are very grateful for both of them.

please keep our boy in your prayers. 

onward and upward towards healing.
there is always hope.

HE CARRIED US

in september 2009, parker (aka sparky) came home from his first day of school feeling sick. within 6 weeks, he was in a wheelchair.

i vividly remember that little blue wheelchair. how tiny it was. how small sparky looked in it. how frail he was.

at the time, it was inconceivable to imagine that he would outgrow that chair and need another. and then another. that over the next 5 years, growth kits, frame sizes and picking colors on the lastest model would be in relation to a wheelchair and not bikes.

i have a vivid recollection of when sparky began to lose control of his legs. he was walking down the school hallway and his legs just kept giving out from under him. he had a dramatic wobbly limp and then every few steps, his jelly legs would buckle and he'd fall to the floor. after a few moments, he would painstakingly push himself off the floor and gripping the wall for support, he would start the whole process of stumbling, falling, picking himself up again all the way down the endless hall to his classroom. it was a terrifying and heartbreaking sight to see. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in her throat whispering, "This is breaking my heart."

it was the type of heartbreak that knocked the wind out of you
and it would be like this for the next 5 years.

i don't know how he possessed the gumption to keep going but it is this example of his deep-seated, quiet determination that would help him persevere thru the days, weeks, months and years that followed.

his deterioration happened at lightening speed. in a short 6 week time frame, he went from this stumbling walk to having to rely on a wheelchair to get around. by the end of october, he had to crawl on his hands and knees to get around our home. by november, he could no longer crawl but just pulled himself along on his belly. by december, he had days where he lacked the strength to move at all. he often had to be carried by his dad or brother.

he lost 15lbs in 3 weeks. his eyes became sunken and dulled with pain. he had rashes, migraines, nausea and difficulty breathing. he developed full body tremors and night time incontinence. he endured hallucinations, rages and his cognitive and processing abilities ebbed away. he could no longer hold a pencil or write. he often needed help to feed himself. and then there was the pain. always there was the relentless and agonizing joint pain. no amount of pain medication, IV or otherwise, ever provided relief. 

it is gutting to watch your child suffer and not be able to alleviate it. it chips away at your very soul.

Doctor's notes from Sparky's medical files

these painful memories flood back as vivid as the days and years that they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts...no, quite the contrary. i look back on these memories and am stunned that we are still standing today. that sparky is standing.

here's the thing. the standing and walking part, well, we don't know if or for how long that will last. we praise God that he has not needed his wheelchair since january 2014 and he has been stably improved since late spring 2014. but this could change in the blink of an eye. you never know with this disease. that is the reality of living with a chronic and incurable disease. there is no cure yet and there is no magical, miracle formula to bring about remission - the fight has been long and arduous...5 years and counting. it has taken 5 years of daily fist fulls of pills, 3 years of daily IV antibiotics, an extensive and exhaustive regime of complementary medicine - homeopathic, herbal and traditional chinese medicine, along with biofeedback and intensive physiotherapy to get to this point. 

and there is still healing ahead of him. and he's not walking out of this battle without the wounds of war following him. one does not lose 5 years of their childhood to a haze of suffering and pain and not have grief and loss to process. and he's wrestling with his faith and his relationship with God. he doesn't see the purpose in all that he has endured but he says that he believes that one day it'll all make sense. and he is keeping his heart and mind open to seeing that. 

when he entered this shadow land of suffering, he was a little boy of nine...now he is emerging as a young man. he will be 15 in a month. he stands tall (taller than momster!) and he is tall in bravery, strength, courage, and spirit.

and that tall in spirit part is the miracle in all of this. that a child at the age of 9 can endure 5 years of relentless suffering and pain, essentially become cut off and shut away from the world and yet come out of this standing tall and unbroken... 

well isn't that the miracle in all of this?

Sparky - August 2014
Overlooking Noth Van from  top of  Lynn Peak

i share this today because i know that there are other momsters out there aching with the wounding that comes from the long nights of nursing the broken, gasping bodies of their babes. 


i know the despair of living the words incurable and chronic. i know the way that reality rips your heart out and then tramples it underfoot.

i know the despair and the terror that fills every fiber of your being and reaches into every recess of your mind when your child looks you dead in the eyes and says he'd rather die than go on living.

i know the horror of hearing your child endlessly screaming in agonizing pain. i know the devastation and heartbreak that follows when your attempts to bring them comfort, relief or solace fail. i know that a little piece of your heart will never ever recover from that. 

i know that their pain is your pain and you will carry it with you until the day that you die. 

i know that there is never enough of you to go around. i know the fear of what incurable and congenital disease means to your future. i know that you worry endlessly about your other children and their future and the future generations to come. i know you fear that if no cure comes, your grand babies may one day suffer.

i know the unwelcome resentments that filter in when you hear other parents complaining about how exhausting it is to drive their kid from activity to activity or get up for early morning practices.

i know how glancing into the car next to you at a stop light and seeing a kid in sports gear makes your heart wrench violently in your chest.

i know that you are exhausted from running IVs at all hours of the night. i know that the only car ride your baby takes is to and from doctors appointments.

i know how you want to scream and rail at how unfair it all is. i know how ashamed you feel to begrudge another parent their healthy child. i know how you feel guilty about that flicking line of resentment that weaves its way up from your knotted gut and lands strangle hold in your throat.

i know that you must be more than just a momster. 

i know the weight of being responsible for making tough medical decisions and that those decisions keep you up at night. i know that sometimes there are no good treatment choices and how you wish for clear cut answers and not choices that include this or that devastating side effects.

i know the hours and hours and hours spent scouring medical files, researching medical literature in order to educate yourself on this thing that has a choke hold on your baby. 

i know that some diseases come with a call to advocacy. i know that that work can burn you out. i know that the desire to educate others, to make a difference, to find a cure, to spare another, to support a newbie is the fire that drives you...even when you have nothing left to give.

i know what its like to live with your heart imploding on a daily basis. i know the screams you stifle, the grief you stuff and the strength it takes to just keep your head above the water. 

i know that you lie on the bathroom floor in a limp exhausted heap in the middle of the night, with silent tears streaming down your face. and you wonder how, just how in the world, will you find the strength to pick yourself up and face another day...let alone, a week, a month, a year, a lifetime. 

i know that the fight to keep your baby alive will take precedence over keeping other relationships alive. i know that you will be judged on this. i know that know one will ever really know how you feel. i know how quickly the crowd will thin exponentially. that who you thought would be your "go to" people at the start will be no where to be found. i know that very few will have the stamina to be there for the long haul. 

i know that unless you have lived the incurable, you cannot understand the sense of loss, the grief, the isolation, the relentlessness, the desperation, and the endlessness of it all.

i know that a childhood shattered by relentless suffering will take you to dark and desperate places. it will challenge your faith in God. it will make you question His Goodness, His faithfulness, His purpose and His plan. it will have you on your knees, face on the floor, fist pounding the earth. i know you will plead with God for mercy. for wisdom. for healing. for guidance. for forbearance. for strength. for relief. and in the most desolate of hours, you will bargain with Him. 

i know that quite possibly the deepest ache, the most pressing heartbreak is the worry that your baby will suffer irreparable damage to their spirit and that they will lose their hope along the way. 

that their suffering will whittle away at the essence of who they are and who they believe themselves to be and how they see themselves in relation the world and to the ONE who created it and them. 

yeah, that. 

perhaps, it is the deepest, most aching worry of a momster. the one that keeps you up at night and presses in hard and heavy on your chest. the kind that makes it hard to breath around. the weight of it refluxing you into a fetal balled position of desperation.

the kind that makes you feel very, very small and very, very helpless.

have courage, dear hearts - the incurable, that curse-able, despicable word that it is, does not have to be that which defines us, our children, or our lives. it does not have to break them...rather it can be the making of them.

how do you survive year 1? year 2? year 3? year 4? year 5 and on - how do you survive a lifetime of the incurable?

how do you survive the endlessness of it all?

you survive by allowing Him to carry you. carry all of it. there is no other way i know how. 

when the snot is pouring out of your nose as fast as the tears are beating a salty path down your cheeks, and you are angry and confused and scared and screaming, "why my kid?", you just have to give it to Him. you give them to Him.  

He carries us because that is who God is. that is what God does. and it is what God did - He sacrificed his son. Jesus, brutally crucified on a cross, His body broken then brought back to life, in order to redeem our broken lives in this broken world. and that allows His supernatural power to take up residence in our lives and that is what keeps us keeping on when the way is so broken and endless. 

it is because of Him and His sacrifice that we have hope. and it is in this that we can find the strength to carry us through. just as we have had to carry our son's broken body over the past 5 years, God has carried us.

this lyme thing, well, it is a horrific journey - i know that the strength we have had to persevere and endure has come from Him. i know He has carried us every. single. step of the way because the pain and the suffering has been so very all encompassing that we could not, cannot, bear it without His supernatural strength to sustain us.

we have the strength to stand today because He carried us.

2 Corinthians 4:7-10 & 16 Amplified Bible (AMP)

7 However, we possess this precious treasure [the divine Light of the Gospel] in frail, human vessels of earth, that the grandeur and exceeding greatness of the power may be shown to be from God and not from ourselves.

8 We are hedged in (pressed) on every side [troubled and oppressed in every way], but not cramped or crushed; we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair;

9 We are pursued (persecuted and hard driven), but not deserted [to stand alone]; we are struck down to the ground, but never struck out and destroyed;

10 Always carrying about in the body the liability and exposure to the same putting to death that the Lord Jesus suffered, so that the [[a]resurrection] life of Jesus also may be shown forth by and in our bodies.


16 Therefore we do not become discouraged (utterly spiritless, exhausted, and wearied out through fear). Though our outer man is [progressively] decaying and wasting away, yet our inner self is being [progressively] renewed day after day.

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