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



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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



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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".