EAT...LOVE...PRAY...INFUSE

EAT  LOVE  PRAY….INFUSE

 Our life in California is a daily ritual of these four things…hanging onto hope that each movement is a small step towards restored health and vitality for our dear boy.



 EAT…pureed organic veggies, chicken broth,  smoothies and soups to make sure Riley is getting good nutrients, and enough calories to sustain him…2800 calories per day…one Dixie cup at a time.



Riley's Organic, Veggie 1700 Calorie Smoothies



PRAY…every movement, every breath, every gesture between us, is a form of prayer…praying for strength, for hope, for progress.



Grandpa Moon sharing a moment with Riley before heading back to Canada



LOVE….tapping into the love that surrounds us and feeling grateful for the many, many ways it is showing up...knowing that it is all we can hang onto.



Great Big San Fransisco heart in Union Square...beckoning us to feel the Love



INFUSE…IVs drips all day, everyday…sometimes off and on for 6-8 hours of the day….infusing antibiotics, amino acids, and hydration…along with an endless array of oral medications and supplements.



Riley's IV drip...tucked in bed with Valentine Balloon



  __________________________________________

This blog entry is long overdue…my apologies to all of you who have been asking for an update on our life in California and Riley’s condition.

As you can see above-Riley's care is a round the clock combination of eat, love, pray and infuse...leaving very little time to make phone calls, send emails or update the blog. 

I have also been without words…unusual for me…as most of you know I like to talk and find it therapeutic to write.

This experience seems to defy description. This disease is hideous and words cannot really describe it or what we are experiencing.

I have been waiting for the right words to come to me and wishing that they could include a description of a dramatic shift in Riley’s condition.

Unfortunately dramatic shift is not what we’re getting…instead we are in for a much longer and more complicated haul than we first anticipated.

“Quick Fix” went out the window months ago, along with the lack of knowledge and recognition of Lyme disease in our Canadian health care system.

The Lyme and co-infection “bugs” are putting up a good fight, and continue to wreak havoc, doing the most damage in his brain and central nervous system.

The doctor has described to us that the debilitating neurological symptoms are in part due to the bugs invading his brain, but also due to his body’s fight to deal with the storm caused by the die-off of these bugs when killed by the antibiotic treatment.  Cytokines, antibodies, encephalopathy, inflammation….medical terms we are becoming very familiar with.

Riley appears to be in a sub-group of Lyme sufferers who have a much more difficult time dealing with the massive die-off of organisms brought on by treatment, as well as he has a significant number of complicating factors- including co-infections (Bartonella and Babesia) that are making it much more difficult and longer to treat.

Dr. H. has described to us that Riley’s body has essentially gone into “shock” (shut down), in an effort to deal with the trauma of the invading organisms and also the massive die-off from the antibiotic treatment.  The brain and other organs are in survival mode and is in part what is causing the extreme level of debilitation.

So- the line of treatment is not as simple as, “just give him antibiotics, kill the bugs and then he will be fine”.  It is a cat and mouse game trying to figure out how to kill the several forms of the Lyme bacteria, as well as the Babesia and Bartonella, while also supporting his organs and immune system to help him heal.

The doctors remain cautiously optimistic that Riley can and will make a full recovery, but are having to take a much slower and cautious pace with everything in order to keep his body functions stable and help him "detox" successfully from the treatment.

They have seen this level of illness before, as well as this kind of reaction to treatment, but did not fully expect this with Riley based on his young age, his prior good health and the relatively short time he had been sick prior to diagnosis (seemed long to us but many people suffering with Lyme disease go for years before getting properly diagnosed).

The doctors are very glad that we are down here and have been seeing Riley every 10 days- sometimes at the clinic and sometimes making house calls.

We have also been referred to several other health practitioners who specialize in Lyme treatment and are providing adjunct therapies to support Riley’s recovery.

Coming up in the next few days we will be making the one hour trek into downtown San Francisco to see a neurological therapist.  He has worked with many patients suffering from neurological Lyme disease and in a phone consultation this past week; he described the importance of doing neural therapy with Riley to support brain function while he is undergoing treatment to kill the bugs. 

We are tapping into every resource possible and are very thankful

for the expertise and knowledge of the medical team here. 

     

A little window into how Riley is coping with all of this and what he has to say (whisper)…

When telling Riley that we would be travelling to San Fransisco this coming week to see a neurological therapist, I explained that the doctor would be finding ways to support his brain function while undergoing all the treatment to get rid of the bugs.  I mentioned that the doctor would be wanting to know what is going on cognitively and asked Riley to explain how he would describe what’s going on in his head….here is some of what he had to say:

“Mom…. I can still read when you write me notes and hold them up for me to see…it just takes longer and it is so hard for me to form the words to respond-partly because I can’t get out what my mind is thinking and partly because my tongue and mouth aren’t working. Also, I just feel too weak to use my voice.  I also find it so hard to keep a train of thought going.  I get started talking and can't find the words and then all of a sudden I don't even remember what I was trying to say...but there a million thoughts going around in my head constantly.

I am thinking all the time…I have some rituals. When I first wake up in the morning, I tell myself what day and month it is…I don’t want to lose track of time.

After my shower…I do math in my head.  Then sometimes I take words, phrases and practice translating them from English to French”.

“I think my brain is like a rubrics cube.  The pieces are all there but they are jumbled right now…and getting everything to work again is a big complicated puzzle…but one day all the work will pay off and the rubrics cube will be perfectly in order once again”.

During another conversation when Riley was overcome with tears and feeling very weary from all of this….he said, “Mom, I just want a moment with you when its not silent between us and all we are doing is just getting through the meds and the pain…what I would like most is to be able to just sit on a bench with you and talk and watch the clouds go by.”

After that comment, I reminded him of all the benches we have sat on over the years…we started naming some of them. 

Now- one of our daily rituals is to each pick a bench to go to in our minds…and at some point during the day he tells me what bench he has gone to and I do the same…here are some of the benches he has mentioned:



Relaxing after a backpacking trip in the Dolomites- Italy



One of many hockey benches he has sat on...this one in Sweden



Eating Gelato in Rome



Bellhouse Park on Galiano Island....one of Riley's favourite places



______________________________________________

Are we surviving all of this?

Somehow, one breath at a time.

Can I imagine going on like this for many days, weeks, months to come?

NO!  
The agony from our family being separated is very difficult for all of us.  However, I am trying to practice the skill of truly being in the moment- because if I look too far forward, I get completely overcome by anxiety, worry and sadness.

 

We are doing what one friend described to me in an email as:

“Biting Down on the Handlebars”…a metaphor from bike racing when the athlete has hit the wall and still has a long uphill ahead.

We still have a long uphill ahead and the twists and turns on the road have not been easy, expected or smooth sailing…but we’re stubbornly “biting down on the handlebars” and hanging on for dear life!!! We feel completely numb and depleted some days and really can't believe that Riley continues to suffer with such intensity.  I am hanging on, but somedays we are not really sure how we can sustain this...but there is no giving up- Riley is still in there and waiting, waiting to get back to life.

The progress is going to be slow and undetectable at first. I am seeing Riley’s healing as one drop of water at a time into the big rain barrel called health....one drop is not even noticeable...but one day...one day that barrel will receive the drop that overflows the barrel and then we will see how far we've come and will be able to say, "Our cup runneth over."

Please, please let the drops be filling the barrel- even if we can't see them just yet!!

We continue to be so thankful for everyone's support through this very LONG ordeal.

Terry's reflections on last trip to California:
 

Evan and I boarded the plane for a much anticipated trip back to California. Through the generosity of friends and family we navigated our way awkwardly through a month of school and work while Christine heroically cared for Riley south of the border. I closed my eyes on the flight and a stream of memories washed over me: Riley as a curly blonde-haired child at China Beach…digging in the silky sand, Riley smiling as I struggle to catch him skating under the moonlight in Bowness Park, Riley laughing with his dear friends Ellen and Harrison after a grueling climb in the Dolomites. My memory centre skews itself towards images of him that radiate joy, contentment and robust health. Every fiber of my being rejects the fact that Riley is now a frail 17 year old unable to shower, eat, sit up, or use the washroom without assistance.

Although purely coincidental, fog and icy San Francisco drizzle set the tone for much of our second visit. Fortunately my cousin Joanne and her husband Sam’s hospitality provided a welcome respite for two weary, chilled travelers. Their spacious Walnut Creek home is a brightly lit sanctuary where flocks of colorful birds and slothful squirrels compete for seeds and shelled peanuts. Terraced gardens, rosemary hedges, flowering trees, and rolling hills as far as the eye can see.

Sam aptly described Christine as the “Mother Theresa of Mothers”…months of grueling, around-the-clock care…administering medications, feeding Riley by Dixie cup, shaving him, showering him, brushing his teeth, shuttling him to doctor’s appointments, supporting him as he shuffles to the washroom, lying with him for hours to soothe his startle reflex…all with too few signs of improvement.  Despite the expert medical care he is receiving, Riley remains incredibly weak and he struggles just to endure the minutes in each passing day. In the stillness of his bed, he prays and visualizes himself gaining strength and returning to the people and pastimes dear to his heart.

We now communicate with Riley predominantly through short messages written on a white board: “Do you need the washroom?”…”We are so proud of you” … “One day this nightmare will be over!” Unfortunately much of the time he is too weak to respond and this creates an unfamiliar barrier. Riley has endless thoughts trapped inside that he cannot fully express. One night he stretched himself to let his brother know how he felt about Evan’s recent musical achievements. Using two words and a pause, Riley expended the last of his days’ energy whispering: “I am…so proud… of you…I miss… you so… much.” Such few words, but each one a precious gift that Evan pocketed and carried home with him as we left Christine and Riley to fly with heavy hearts back to Calgary.







Bellhouse Park on Galiano Island....one of Riley's favourite places



He has been on treatment for Bartonella for the past 3 months and we have seen a slight decrease in Bartonella symptoms...unfortunately they are not the symptoms causing the most debilitation...but we'll take it. 

He has for the time being stopped the medications to treat the Bartonella (not done with it forever but for now) in order to start treatment for the Babesia. Dr. H. believes that the untreated Babesia may be getting in the way of Riley's progress..  He started this treatment 6 days ago and the past 48 hours have been very, very hard- with die-off symptoms raging (see previous blog describing "herxheimer" reaction).  I spent 7 hours beside him in bed today as he had fevers, chills, chest pain, shaking, head twitches and lots of crying and emotion...all typical Babesia symptoms.  The treatment is definitely stirring things up and we hope killing bugs.  Babesia is actually a malaria-like parasitic disease and has been called "Lyme's Cruel Cousin".

JETTING TO CALIFORNIA

Jetting to California

Travelling by private jet to California was a gift beyond measure. We were able to drive Riley right up to the plane without the chaos and startle-evoking noise of the airport terminal. The jet also flew faster than a commercial airliner and travelled at a  higher altitude; avoiding the turbulence found at lower elevations.

 

 Lear 35 getting ready for take-off  





Evan co-piloting



My cousin and her husband have graciously opened their spacious “Tuscany” style home and given Riley a quiet room with a view of lush rolling hills carpeted with grapevines, orange trees and lofty oak and cedars.



Riley's Room on main floor (right)    



We took Evan along with us to see where his brother and mother would be staying and my mother also came to lend a hand. We are fortunate as well to have my brother and his girlfriend living nearby. They have been tremendously supportive. 

The day after our arrival Riley met with both of his doctors. It quickly became apparent that our trip to California was critical.   Despite frequent phone consults, the medical team seemed shocked by how ill Riley had become in the last few months and let us know that it may take over 6 months for him to truly begin to feel improvement-devastating news.

Fortunately, their expertise with the complexities of Lyme disease had them suggesting a number of medical options and local resources.

It was extremely difficult for Riley to adjust to his new surroundings and we had a number of brutal evenings where his level of anxiety, nausea, and discomfort rose to new levels.  One night it took three of us to get him to the washroom and he described “demon eyes” telling him he was not trying hard enough and would never get well. Listening to Riley’s fear of not having the strength to continue the battle (at one point he stated that he wanted to die) was one of our lowest moments to date. 



Evan having a moment with Riley



Last Sunday the time came for us to leave Riley and Christine in California and return to school and work.  Words cannot begin to describe the level of sadness surrounding our departure.  We knelt beside Riley’s bed while he painfully draped an arm around each of us. Slowly and tearfully he raised his hand to his heart space and Evan and I returned his tender gesture. It is counter-intuitive to leave your sick child behind...something akin to being told you cannot enter a burning building where your son remains trapped. So with heavy hearts Evan and I left for the airport.

We arrived back in Calgary late that evening to discover that friends had left Evan and I food and words of encouragement...something to take the chill off our otherwise cold and vacant home. Christine also informed us that evening that one of Riley’s medications had been changed and his evening had been better; lower anxiety and startle.

For now, our family photo has been torn in two rough pieces...Christine and Riley in the U.S. for an undefined period of time, and Evan and I left in Calgary to return to the new “normal”.  Yesterday I awoke to this poignant e-mail from a friend:

“I rise...I stretch...I wash...I dress...I sip...I stress...I think...

And I hear a voice, I don’t know whose, from where, in the dark that I try to push through this morning, reminding me of this desperate soul making gasps in California and his mother and father and brother whom I have know so long, whose lives are something completely different today than any I could have ever imagined only a year ago.

Sadness...Brokenness...Nonsense...Ridiculous...Evil...Anger...Tears pouring...

Ouch—deep, long, defeated, aching of rage.

PLEASE PLEASE PLEASE COME BACK RILEY!! I NEED YOU! WE NEED YOU! WHY IS THIS HAPPENING? STOP!”

Yes it is true that we need Riley to turn a corner and to witness a lessening of his symptoms! Until such time we continue to marvel at the outpouring of support we have received. So many compassionate and generous acts...reminders that despite worldly forecasts of doom and gloom, generosity and kindness continue to be alive and well!

Gratefully, Terry

Taking turns having a few moments of fun and exploring our new surroundings:

 

Evan with Grandma Lindberg and Elaine



An Afternoon Exploring San Fransisco     



Leaving on a Jet Plane

Just a quick update:
We have finalized plans and are flying to California at noon today- Wednesday, January 19th.

Through the concern, prayer, big heartedness, and generous efforts of a dear friend...several people (known and unkown by us) very kindly came together to provide the finances to fly Riley by private charter.

This is absolutely amazing and such a gift.  We were very concerned about Riley navigating the airport with all the noises, wait times and hustle and bustle-the private charter will allow us to avoid all of this and fly directly to Oakland- the nearest spot to our destination.
Riley is equipped with custom earplugs, sound blocking headphones and will receive door to door service.

The four of us are going, as well as Terry's brother and mother.  Terry's brother Grant lives down there and will be a great help as we settle in.
We will be staying with Terry's cousin and husband (nurse practioner and ER doc-hurray!)....they are opening their home to us and we are so grateful.
The plan is that Christine and Riley will stay there for an extended period of time...to allow face to face support from the LYME medical team there.
Evan and Terry will return to Calgary on Sunday, January 23rd.

We will keep in touch through this blog.  Thank you everyone for sticking by us through all of this.

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and never give up".

On a Lighter Note

While out for a frigid winter run beside the Bow River on the weekend, a salmon coloured band suddenly unfurled itself across the bleak skyline.  Instantly my mood lightened and I remembered a humorous incident with Riley.

I was home alone administering his evening medication and assisting him to use the washroom. With all the energy he could muster, a word or two at a time, Riley let me know that if it was not too much trouble, he wanted to take his medication in bed and then have me help him to the washroom and provide him with a hot washcloth there for his face. I let him know I understood completely and proceeded to carefully measure out his medication. I placed the medication in the washroom along with the warm washcloth before tip-toeing back to his bedside. Riley’s forlorn expression upon my return said it all...he was unable to speak so I spoke for him:  “Listen dumb arse, I am barely able to function here and you cannot seem to follow a simple set of instructions!” Riley’s mouth formed a painful half smile, a tear rolled down his cheek and we did everything we could to contain our laughter to avoid startling him.

I am thankful for these moments of levity that break the tension, and like the lightening of the sky, tease hope out from its’ hiding place.

Mr. “Dumb Arse” Lindberg

Happy New Year...Let It Be So!!

Happy New Year to you all! Time to turn the dial on your “etch a sketch” and make way for the adventure and promise of a New Year. Last night Riley whispered to me that he was viewing 2011 as the year of his renewal. I continue to be amazed at his ability to hold on to hope despite the severity of his suffering.
We’d love to tell you that Riley is feeling considerably better and that our life as a family has returned to a kind of normalcy. In reality he continues to bravely endure each passing day with little sign of improvement and a heart-breaking set of debilitating symptoms. Over the holidays Riley developed constant finger tremors; leaving him unable to hold a cup or spoon and feeling continuously startled and trapped in his body. We now have to purée his food and pour it into his mouth using a Dixie cup, shave him, and brush his teeth. In consultation with his medical team we chose to take a momentary break from the IV antibiotics last week after a frightening evening where Riley’s blood pressure/pulse roller-coasted erratically and he described himself as completely detached from his body. As of today he has started back on a revised, less intense antibiotic regimen and we will see how he manages. 
Although I cannot recall the song containing the lyrics, the expression “dog-shit tired” captures some of the collective feeling in our household. A bone-weariness has set in…as if someone threw us in a burlap sack and hit us with hammers all night long. An unfamiliar irritability pokes at us and grief curls us up in a ball. Still we forge ahead.
What is it that sustains us?  Alongside faith, humor, and Riley’s courage in the face of suffering, we are nourished by an amazing community of care. I have come to define HOPE as the: Hearts of People Everywhere. We continue to be overwhelmed and humbled by the profound outpouring of support we have received: borders crossed and individuals coming together to provide financial support for Riley’s treatment, Christmas lights strung up outside Riley’s window, a neighbor offering us the use of their home, errands run graciously, meals on the doorstep including Christmas dinner, family and caregivers’ home visits (giving us a much needed break), invitations extended to Evan to leave our home for an adventure, air miles, prayers, e-mails, and numerous phone-calls of encouragement. 
May the year to come fill you with a rich set of memories and indeed be Riley’s year of renewal! 
With tremendous gratitude, Terry


A note from Christine:
OK…so Christmas was a bit tricky to say the least…the neurological symptoms for Riley include being terribly startled by sound, quick movements, or touch. His senses are in overdrive (BIG TIME)…so we tiptoe around the house, and are constantly “shushing” one another.
How do you open presents in silence?  Not an easy task. The Hammond family saved Xmas morning. They lent us their beautifully sewn, environmentally friendly, cloth bags… totally silent to unwrap (no tape, bows or cutting necessary).  BRILLIANT!!  Riley sat up valiantly all morning by the tree receiving his IV meds while we opened gifts.
Evan opened Riley’s stocking for him and Riley’s eyes got big in wonder and gratitude…he could not smile because of the facial paralysis so his eyes did the talking.
Evan and I decided we should write into the Guinness Book of World Records to see if we qualify for the “Most Silent Xmas Celebration Ever”!

Steps Ahead:
Riley’s condition has not turned the corner like we had all hoped and the doctors in California really want to see him face to face in order to better respond to his medical needs. We are grateful for the care from Dr. J, Dr. T and nurses locally, however feel that consultation with the team in California is much needed at this time. We are making plans to take Riley there within the next couple of weeks. With wheelchair, earplugs and airline assistance hopefully the trip will be uneventful.  We will keep you updated as plans are finalized.

Riley asked me to pass on his thanks for so much care and support.  We tell him daily about emails, notes, meals etc.  He is so grateful and tender towards all of you.  He misses his friends, school, hockey, outdoor skating, skiing, driving, texting, hanging out with Evan and so many other things! 
He never gives up hope- and when I asked him how he occupies his thoughts day after day in the prison of his body- he whispered, “Mom, I have a million memories to focus on and I walk through every detail of them in my mind.  I also think about all the things I have to look forward to-I am very ill but I’m not down.”

From Riley and all of us…Thank you for sticking by us!
  

Angels Known and Unknown- December 15th update

I press my ear up close to Riley’s frozen mouth and strain to hear him whisper: “Dad… when you come in to say goodnight … I won’t speak to you…takes too much energy…let’s touch fingertips…then you’ll know I’m okay…I love you.”

In the tomblike stillness, I sit in the dark beside his bed and carefully dole out his dinner spoon by spoon. In Zen-like fashion, I retard my arm movements to avoid startling him. At times my caution seems pointless, however, as he manages to startle himself. The bilateral paralysis in his face barely allows him to open his mouth and the lack of sensation means bits of food miss the opening and panic sets in. “Breathe Riley…you can do this” I say, horrified.

At this point in Riley’s illness I can no longer fool folks with “I am fine”. Sadness resides behind my eyes and weariness pulls at my shoulders. I stare blankly out the window looking for signs of life and the festive lights mock me. I turn back to the bed where my son lays deathly still and watch the rise and fall of his chest. I try to picture him well again…gliding over the ice with reckless abandon. 

Although largely unsuccessful in my efforts to cheer myself up, Hope still arrives. Cleverly disguised, she seeps into our home…a meal left on our porch, a card in the mail, the walk cleared of snow, an e-mail of encouragement, a nurse helping with meds, a generous donation, a well-timed hug, a kind doctor’s words, beers and conversation, a bouquet of flowers, birthday streamers, a prayer from afar…light in the darkness.

Thanks to all the angels known and unknown, Terry

December 15^th Update…

The last 2 weeks have been discouraging….day after day of  meds with no improvement in Riley’s symptoms. 

As you can read from Terry’s description above…even the simplest tasks have become difficult for Riley.  The neurological symptoms are debilitating. Riley is locked inside his body unable to communicate much emotion…a   paralyzed face makes it is impossible for him to smile, grimace, frown, or laugh…a beautiful soul full of unexpressed words, thoughts and emotions.

He grows weaker everyday and the other symptoms continue to rage.

So-what is happening we keep asking ourselves, asking the doctors?

It appears that Riley’s system is not responding to the combination of antibiotics that he has been receiving for the past 4 weeks.  We hear over and over again that there is no “cookie cutter” treatment for Lyme/co-infections and that it often takes some trial and error to figure out which antibiotics will best suit the individual and his/her particular set of symptoms etc.

The co-infections that Riley also has, particularly the “Bartonella”…can really impact progress, wreak havoc with the immune system and comes with its own symptoms that must be dealt with along the way.

In conversation with Dr. H today he said treating Lyme is a delicate balancing act…. You have to treat aggressively enough kill off the bacteria, but if you go too hard, too fast then it causes massive inflammation in the body, which in turn can impair progress. He thinks that in Riley’s situation….the oral antibiotics in the fall were creating some die-off of bugs but not sufficiently enough to keep them from progressing into the Central Nervous System.  And now we have an IV antibiotic that for whatever reason is not turning that around.  UGH!

So as of yesterday…our medical team (Dr. H’s team in California and Dr J here), want Riley to switch to a different antibiotic regimen. He will be on a new antibiotic that is powerful and they feel, given its track record with other difficult cases of Lyme…should have a better chance at getting at the bacteria- and we hope begin to reverse the facial paralysis. He is also set to have a second MRI to ensure nothing else is being missed.

He will have to have many pokes in the arm in the next couple of weeks in order to monitor all of this…easier said than done because his veins keep collapsing whenever he goes for blood work.  Theoretically- the Calgary Mobile Lab will arrive one hour before the meds are administered and one hour after…and all will be kept in check.

We are very thankful that:
Riley's vitals (blood  pressure, heart rate etc) have remained stable the past couple of  weeks

    

Riley remains determined and hopeful and continues to push himself to eat, take every medication and supplement we put  in front of him…he knows he can’t lose anymore weight and must do everything possible to stay strong

His medical team is determined and dedicated...answering every worried call, emailing, and even texting us late at night to check in, as well as responding to the many complications and going out of their way to “heal not harm”.

We are not alone in all of this and feel the incredible support from family and friends (near and far), our faith community at Hillhurst Church and many other known and unknown angels along the way.

   

Grandma Lindberg has been able to come a couple of times from Canmore and be with us.

Grandpa Moon and Auntie Pierann are hosting Evan at Grandpa’s house this week (this has not been easy for Evan and needing the house to be so quiet isn’t exactly easy for a busy, thriving 12 year old-please keep Evan in your thoughts and prayers as he copes with his big brother being so sick).

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all.

November Updates

 HI EVERYONE...

Before we give you an update on Riley’s situation we wanted to send a big thank you from Riley.

Riley turned 17 on October 28^th. Many of you sent notes, messages of encouragement, stories and memories, photos and also some wonderful gifts to lift his spirit.

This was an incredible gift to Riley.

Lyme disease is very isolating. He only sees the four walls of his bedroom, his tired family, a lot of IV bags and pills to swallow, and a few nurses and doctors here and there…not much fun!

WE SEND HUGE THANKS TO ALL OF YOU FOR BEING PART OF HIS CHEERING TEAM AND REMEMBERING HIM ON HIS BIRTHDAY.  He was very ill and weak on his birthday so we spread it out and only read, shared two or three wishes per day.

Thanks also to the Birthday elves who arrived late one night to adorn our house with birthday wishes for Riley.  Got a few looks of astonishment from those passing by.

 
UPDATE

At the end of October- Riley had been on oral antibiotics for almost 2 months with no visible improvement in his condition.  With Lyme disease, treatment is expected to create an increase of symptoms for a time- before visible improvement is seen.  This phenomenon is called a Herxheimer reaction….a what??????

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. Typically the death of these bacteria and the associated release of endotoxins occur faster than the body can remove the toxins. The intensity of the reaction reflects the intensity of inflammation present. The reaction is seen in diseases caused by spirochetes, such as Syphilis and Lyme disease.

Riley’s response to treatment has been severe and very hard to watch.  All of the symptoms he had been experiencing prior to diagnosis have increased and he is also experiencing some troubling and debilitating neurological symptoms, including facial paralysis, tremors in his hands/fingers, extreme sensitivity to sounds- we have to keep the house almost silent otherwise he experiences panic, anxiety, shaking and severe sweating.

We believe this increase in symptoms is both a HERX (the buggers dying off) as well as the oral antibiotics perhaps not adequately addressing the bacteria load.

In consult with our doctor in California…it was decided that Riley needed to switch from oral to IV antibiotics as quickly as possible.

The neurological symptoms indicate that the bacteria has crossed the blood brain barrier and that the oral meds are not getting a foothold on the bacteria raging in his body…more aggressive treatment is warranted.

At the beginning of November we began to make plans to take Riley to California to have a PICC or Port Catheter line inserted so he could receive IV antibiotics.  The procedure is something readily done here (for many other diseases), but because of the Lyme diagnosis…getting a doctor to agree to do this for treatment seemed impossible.

 

The progress we are waiting for:

• Riley’s facial paralysis to reverse (as happens for the majority of Lyme patients)
• Other neurological symptoms to subside
• IV meds to begin to lessen the symptoms

We were told by Dr. H. (California Lyme specialist) that it would be a long road...
a marathon, not a sprint….
a very hard bumpy path back to health. 

He was right!!! 

We have never experienced anything so dark in our lives…..however, through it all we have been held up by our faith, the enduring presence of friends and family (all of you reading this blog), and the continued words of hope from our medical team that he will get better.

“Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light." - Dr. Albert Schweitzer