February 29, 2016

HOPE IS WHAT WE CRAVE

so i've been MIA on social media and my blog for a long while now. multiple reasons abound for my sudden and prolonged disappearance...


i don't have that many words to describe the past 6 months - well, not appropriate words anyway. 



at the beginning of august, i got strep throat which triggered a pandas relapse. this was my third relapse with this illness since my diagnosis in spring 2014 (read about that here). i am very fortunate that my symptoms respond to treatment albeit this time around it took aggressive and very high dose antibiotic treatment from mid-august until end of october to restore proper brain function. the treatment was very, very hard on my body. i was still recovering and dealing with some mild neurological deficits when we embarked on our trip to seek in-patient treatment for Parker at the clinic in Kansas. 

for those not familiar with pandas -  basically, it is an auto-immune illness caused by exposure to group a streptococcus infection that causes the antibodies in your body to attack specific regions of your brain and central nervous system. this can cause very severe neuro-psychiatric symptoms. understatement.(read more about it here or here)

in plain english, pandas is a mindf*ck. and that is putting it mildly.

but more about THAT another day. 

the same week that my pandas flared, we had uninvited, unwanted house guests arrive.

6 months later, they are still here. along with most of their relatives.

they are not welcome. they are not wanted. and we have nearly lost our minds trying everything and anything to get rid of them. 



their aggressive invasion of our home has been a complete and total sh*tstorm if you catch my drift. since december, i spend (on average) 3 to 4 hours PER DAY cleaning up after them. no lie. 

one day i may blog about it. in fact, the story-teller in me is surviving their hostile take over of our home by telling myself, "oh shan, this is going to make a great blog story." and truly it will - after all, the tales i can tell will leave you in flabbergasted disbelief at their brazen persistence.

however, the other part of me, the introverted, sensitive, idealistic momster who is stumbling raw and broken through the darkest of days...just wants to keep the storyteller silent. because so much of what has transpired in the past 6 months is just beyond words. too hard. too raw. too painful. and none of it makes sense. i am angry, bitter, grieved and beyond heartbroken. and the last thing i want to do is put the brutal, ugly, hard agony side of suffering out there - unless i have some sort of positive perspective to wrap it up with. after all, i write because i want my suffering, our family's suffering, to mean something. to be bigger than us. to help someone. to encourage. and mostly, to inspire faith and hope in the midst of trauma, suffering and pain. 

but today, i write in spite of the fact that i have NONE of that to bring to the table. NOTHING but my brokenness and the desolate desperation of our story. these are dark days, friends. so very, very dark...the kind of bewildering, scary, heartbreaking, helpless, hopeless, perplexing, WTF-is-going-on sort of dark days.

which leads me to the hardest part of this post to write about... an update on our boy sparky.





it is very difficult and painful to talk/write about Parker's situation.

our emotions are intense and somehow neither the hubster nor i have had it in us to put any of it 'out there'. yet, we want you to know that we have deep gratitude for the many, many people whose unbelievable generosity made Parker's $20,000 trip to Kansas possible. we know that each and every person who donated and/or prayed for this trip is also deeply emotionally invested in the recovery of our boy.

we get that.
we so totally and humbly get that.
in part, it's why it so difficult to share the outcome of our trip with you all as it is not what any of us earnestly hoped or prayed for. but it has sat heavy on my heart that we have been remiss in personally extending our gratitude and also letting people know what is going on. 

we embarked upon this trip with our hopes held high. after all, this was our miracle trip! how could it not work? really? especially with all that went in to getting us there! furthermore, the miraculous stories of recovery experienced at this clinic were not just internet hear-say to us - we personally KNOW people that have had IMMEDIATE and LASTING relief from their symptoms (specifically pain) while at this clinic. so we KNEW it could happen.

the pain relief aspect of healing was our primary reason for choosing this specific clinic. parker has suffered from unrelenting and intractable joint pain for 7 years now (even during his brief remission, he was never totally pain free)

we prayed and hoped and believed that he would experience a notable shift in his symptoms and a reduction in his pain during his 2 weeks at the facility. we knew it was possible however, we also knew this was not a totally realistic expectation to have. this was what we considered a 'best case miracle scenario'.

and the worst case scenario?

that there would be no notable changes during those 2 weeks in the clinic but that healing would come in the months after as he continued on the various remedies and therapies at home.

naturally, the best case scenario is what we hoped and believed for but the worst case is what we mentally prepared for. after all, it was the most realistic outcome to expect. we get that. he has been sick for a very long time  so it is not realistic to expect an overnight recovery.


NEVER EVER IN OUR WILDEST FREAKING NIGHTMARES DID WE FOR A SINGLE MOMENT EVEN CONCEIVE OF THE POSSIBILITY THAT HE WOULD GET SICKER.


but that is exactly what happened.

there were no notable changes (good or bad) in any of his symptoms until his second to last day of treatment. and then suddenly and abruptly, his symptoms flared exponentially and all hell broke loose.

let me be very clear -  this was NOT at all an expected outcome of treatment there. i know this may be a bit confusing for folks to understand since the traditional standard of lyme treatment is that you do get worse (eg herxing) before getting better. however, the whole crux of treatment at this clinic and the principles of biological medicine that is practiced there is that you DO NOT have to get worse before getting better. that being said, one also has to say that a flare of symptoms can occur even if the physician is striving to avoid flaring a patient. (a bit confusing i know. sorry. i can't figure out how to explain it really.)

parker's symptoms flared so dramatically that i didn't think we should leave with him in that condition. i asked his doctor if money were not a barrier, would he be suggesting that parker stay for another week of treatment but his doctor felt that his worsening condition was just a minor set back.  he was very hopeful and optimistic that this was just a temporary flare that parker would bounce back from within a few days.

so we left kansas with a very sick kid who was more disabled and in more pain then when he had arrived. we were in shock...yet we clung to the hope that we had just hit a speed bump on his road to recovery and soon we'd see improvement. after all, how could this not work? this was our miracle trip.

in the weeks following the trip, parker continued on all the remedies prescribed to him at the clinic. 
yet, he continued to deteriorate at an alarming rate. 

by november, he had lost 20lbs. and the primary symptoms he has been living with since his relapse in jan 2015 increasingly intensified.(severe joint pain, difficulty weight-bearing/mobility issues, insomnia, heat intolerance, facial flushing, nausea and intense noise/light sensitivities) 

it was very clear that this was no temporary setback or speed bump.

his downward spiral certainly caught everyone off guard and stumped his doctor. we spoke with his kansas doctor who postulated that parker's infections were probably too severe to respond to their remedies alone. he told us that the clinic does not generally recommend antibiotics - except in very rare cases.

he believed parker's condition fit this rare exception. 

so his kansas doctor and his california doctor (DR H) had a phone conference and put together a treatment plan. additional testing ordered by DR H revealed that parker had a very severe staph infection. aggressive antibiotic treatment for the staph was started immediately.

in our numb state, we continued to cling to the hope that once the staph was treated, he would begin to improve. after all, we now had two of the most brilliant doctors working on his case. he HAD to get better. he just had too. 

but he did not.

some symptoms (primarily the facial flushing. rashes and headaches) responded to the antibiotics for his staph infection but his other symptoms continued to worsen. in mid-december, he required testing for a condition called KPU. in order to prep for the test, he had to stop all his remedies from the clinic for several weeks. his test was negative. that was a big relief. the other relief was that his weight stabilized during the few weeks he was off his remedies. he didn't gain back any of the 20lbs he had lost (and still has not) but he stopped losing weight. this was significant because the weight loss and resulting muscle wasting was alarming. he was very frail. while he was off the remedies, he did not have any improvements in his other symptoms but at the same time neither did he get worse - he just kinda settled into this precarious state illness. we did not want to upset that balance. therefore, the decision was made to not resume any of the remedies from kansas. 

this was a very tough call to make for so many reasons.  

we do not question the integrity of this clinic and we know the medicine they practice there is powerful. during the 2 weeks we were there, we met many people that were experiencing healing. it just did not happen for parker. and that is horrifying and hard and makes no sense. we had/have no idea whether or not the weight loss or his overall deterioration was triggered by the remedies (there are so many co-morbid factors to could play a role -  too complex for me to get into). we hope that one day those medicines will play a role in his healing. it is just too upsetting to think that all of it was for nothing. but we simply do not know at this time. 

honestly, there are more questions than answers. 

that is where we are today. 

we have literally spent the last several months fighting for parker's life. trying to figure out what went wrong and what is going on. he has undergone numerous therapies and new treatments and even been seen by new doctors in the past several months. all to no avail. he is back under the full time care of DR H (california doctor). we are so grateful that DR H has not given up on parker. 



his level of disability is severe and alarming... in many ways, we are all still in shock...our family is deeply grieved and beyond heartbroken by the state that he is in. we are scared...we are sad...we are desperate....we feel helpless but we will NOT give up. we are pressing on, researching treatment options and fighting for parker. 

i don't think any one of us can even imagine the depths of parker's despair and hopelessness. we are amazed by his resilience and the fight he still has within him to keep on trying any and every new treatment thrown his way yet we fear...how much more can he take before he gives up? 

we are so grateful for parker's school therapist/counselor who has been coming to visit him in our home weekly for the past several months. thank you pete for showing up and being parker's person. there are no words to express how much you mean to us. 

i will be breaking my facebook hiatus in order to only publish this post - i have not accessed FB or messenger since august and at this time, i am choosing to remain inactive.  i am surviving and that is part of my survival. as much as i love the community of friends i have there, i just can't do FB. i can't do any of it - the advocacy part or the socializing part...or even the fun, silly part of it. 

but that being said, we do need people to reach out to us and let us know we are not alone and not forgotten. if you would like to, please drop us a line here on my blog or at sngoertzen@gmail.com.


please know that we have deep gratitude for your support and donations. thank you for standing with us and loving our boy. we are humbled.

please understand that we may not respond to emails. we are tired.

please understand that we cannot be more specific or answer more questions about parker right now. it is just too painful to rehash. 
what i have written here will be all that i say for now. it is everything i can possibly put out there without coming completely undone.

please understand that we DO NOT wish to be inundated with the latest miracle cure for lyme. trust me - i am a research ninja - chances are i've already heard about, researched it and probably tried it.



BUT PLEASE FEEL FREE TO:

tell us a funny story.
tell us you love us.
tell us we are not forgotten.
bring us donuts.
bring us coffee.
and
if you have a cat that is a really good mouser then please bring us your cat.








hope sleeps without me
sweet dreams surround me
but i'm left out
i need a reason to believe

these rooms are dark now
these halls are hollow
and so am i

it's hard to feel now


i won't turn to dust now
let these tears rust now
on my face
give me the spark now
to believe, to see

to live, to die, to lose, to care
to rise above, to love again
i need a drop of grace
to carry me today
hope is what we crave & and that will never change
                                                               ~ lyrics by for king & country


ps
special thanks to my friend CP who has been an exceptional sounding board and brainstormer...especially over the last 6 months. thank you for being my person. i am forever grateful for your friendship & support.

7 comments:

Kathy said...

Shannon, It just breaks my heart to read this. I know you have fought so hard, been so patient, and would do anything for Parker. I still believe you can beat this. I still believe in you, and I still believe in miracles. Praying for you every. single. day and sending all of my love.

Karen Owen said...

There are no words....nothing......numb, shocked, sick, I don't have a single group of letters to put together to try and find a way to let you know how horrified I am to read this suffering. I am so so sorry Shannon. I am so so sorry Parker. I am so so sorry for all of your beautiful family and this unbelievable turn of events. My heart aches for all of you so much. Hope is what have. There is no doubt about that. Keep clinging. The tide is changing, I promise. It really is Shannon. XX00

~Tricia said...

I was just thinking about you guys. So sorry to hear things aren't going well. You really haven't missed much on FB except drama, drama, drama, cat videos (really the best part now), memes from the grammatically challenged, drama, drama, and drama, with a big side of the US presidential race run by three-headed monkeys on LSD for the grammatically challenged meme writers.

I hope things start to get better for everyone. Some day you'll have one hell of a book.

Take care <3
Tricia Stuart and her crazy bunch

Angela Polinsky said...

I'm so sorry Shannon. I struggle to find words to say, but I want you to know we care. Much love to you. ~Angela

Shannon W said...

Dearest Shannon,
I am so, so sorry for your situation.
I don't have words.
I do not know you well, only from a few meetings and some of your blog.
Please know that I only wish all the best for Parker, you and your family.
Sincerely,
Shannon W.

I told you Its lyme said...

I have been praying for Parker and you. I hate to hear about other kids who are sick with Lyme(and its thousand friends it brings along)....especially when there healing journey seems to only get worse and worse.

Anonymous said...

Words fail me as they have several times since October. Hopefully the latest idea continues to show promise. Don't give up hope, Sparky....
I wish i had a dozen kitties i could send over for a day:)
Sending a bucketful of hugs, Chris