DAYS OF MIRACLE AND WONDER

Winter has drifted into town but despite shorter days and an early dusting of snow, a few golden leaves cling tenaciously to the branches outside the window; a memorial to our prolonged summer.

As many of you know Christine and Riley have been away for over a month now, attending a medical clinic in Wichita, Kansas.  Having heard a number of encouraging reports about the Hansa Centre and its’ treatment philosophy from other Lyme-sufferers, and after consultation with Riley’s medical team, they left Calgary with a mixed bag of trepidation and cautious optimism...no Yellow Brick Road to follow and no promise of a wish-granting wizard. Fortunately, unlike the fraudulent “puppet king” of OZ, the Kansas clinic and its’ staff have more than lived up to their reputation.

Remarkably, within a few days of commencing treatment, Riley reported a reduction in pain and a loosening of his facial paralysis. Under the sage-like care of the doctors and staff, he began speaking in short sentences using a “normal” voice instead of the whisper he had resorted to for two years! Riley also stood up and began walking for the first time without support!  To put this in perspective, when they arrived in Kansas, he had been entirely wheelchair bound except for one short, heavily assisted, shuffle to the shower each day. 

Initially it was difficult to trust these changes...anticipating a regression or worsening of symptoms. If we allowed ourselves to believe Riley was actually improving...what then?  Could we afford this kind of vulnerability? Imagine for a moment you are in a killing drought and as a daily ritual you hike to a faraway well hoping for water...you select a stone, say a fervent prayer and drop the stone into the inky black depths, you hold your breath and wait for what feels like an eternity, only to hear the empty clatter of the stone as it hits rock bottom. You repeat this ritual unsuccessfully for years…until one day you drop another stone half-heartedly into the well and as you turn in haste to leave you hear what sounds like a splash; shock and disbelief follow.  Cautiously you try again and there it is…a splosh, a splash…a miracle…and then the tears come!  Faith, however, is the belief that the water will still be there tomorrow.

The water in the well continues to flow,  To our great amazement, Riley continues to progress. The chest, bone, and joint pain that plagued him continuously for three years is now gone!  When they arrived at the clinic on October 11th, Riley listed over 40 symptoms in varying degrees of intensity. 18 of those symptoms are gone, and many of the others are decreasing.He is speaking conversationally, and the decrease in his facial paralysis has allowed him to begin chewing morsels of soft food again, and even manage a slight smile at times.

The toxicity in Riley’s brain has been reduced...”my brain feels like it is starting to wake up and the synapses are firing again”.  In addition, on October 31st, Riley phoned to wish us a “Happy Halloween” and then in an excited voice told me that he had been walking with a straight back and swinging his arms without any assistance!  Shortly after this Christine sent a video of Riley walking slowly but purposefully down the halls of the clinic; breathless and with tears streaming down my face, I hit the replay button over and over again…”my son…my beautiful son…walking again…so tall…thank you God…he’s coming back!”

It’s difficult to describe the elation I felt watching the video of Riley navigating the halls of the clinic on his own two feet.  I have not been that captivated watching someone walk since the age of seven when I witnessed the grainy, black and white images of Neil Armstrong leaving the Lunar Module and stepping onto the moon for the first time; “That’s one small step for man, one giant leap for mankind”. This moonscape now pales in comparison to the sight of my 19 year old, bed-ridden son, moving through his world without a wheelchair or a walker!

     These are the days of miracle and wonder

      This is the long distance call

      The way the camera follows (Riley) in slo-mo...

      And don’t cry baby don’t cry

      Don’t cry...

              (Excerpt from Boy in the Bubble by Paul Simon)

                                   Riley on his 19th birthday- a very joyful day in Kansas!

                                                Riley visiting with his cousin Krystal

The road to restored health for Riley still appears long and daunting at times, but we are joyfully celebrating every recovery milestone. The brilliance of Dr. Jernigan, and the compassionate care of the staff at the Hansa Centre have added fuel to Riley’s determination to return to full health. Days at the clinic are full and tiring for Christine and Riley, but also rich and rewarding. Without the prayers, kind thoughts, and financial support we’ve received, however, none of this would be possible. So it seems only fitting to leave you with these words from Riley:

“Hello everyone... just wanted to say thank you so much for all of your thoughts and      
prayers and good wishes. I miss you all so much and I’ve been thinking and praying
for all of you every day. Thank you so much and love you all!”

With thankful hearts,

Terry, Christine, Riley and Evan

                                            Happy times with our Riley....pre-Lyme!!

                             Dreaming of a time when he can take hold of life again and soar!!

Hiking in the Rockies

Enjoying the View

Lake O'Hara

It's Fun to Dream....thanks Uncle Ian- London, 2008

At the ODR (Outdoor Rink for you non- winter types)

                                             Outside Buckingham Palace- Summer 2008

Fall Musings

First heartfelt thanks to each and every one of you who soldier on with us and offer support even when we retreat and fail to update the blog or return your calls. Sometimes we lack the words or the energy to speak them.

Fortunately there is always another day and moments of beauty that cleanse us and rekindle our spirits: sunlight on our porch at the end of a crisp Fall day, the warm sound of old vinyl, biking along the moonlit river under an umbrella of stars, ice cold beer at the end of a dusty hike, rich conversation with close friends, an old hymn sung with conviction...

More inspiring than these moments, however, is Riley’s resiliency as he continues to face his exile and suffering with joy and gratitude.  He remains saint-like in his ability to see the best in his situation and to cultivate hope and celebrate small signs of progress.

Last year Riley listened as I read articles about the Tour de France and this summer he was able to watch the race itself!  Appropriately, a painting hangs on his wall that depicts one of the legendary mountain stages on the Tour as if Riley were riding in it himself...an arduous climb lies ahead of him, but he has the yellow leader's jersey!  You and I line the road cheering raucously!

Breanne, a grade 12 student, painted this for Riley as part of a school project on Calgary teens afflicted with Lyme disease. Her sister Danielle has been bedridden and battling Lyme disease for three years. Breanne captured Riley’s passion for sport and his longing to sit on a bench one day…symptom free.

Although still plagued by severe neurological symptoms and facial muscles that are in essence paralyzed…making it next to impossible to speak, swallow, or show facial expressions, Riley has slowly gained more physical strength. He is now able at times to hold a Dixie cup, perform simple actions with his arms and hands, and walk a few steps each day with the aid of a walker.

Recently he was given an iPad, and although too physically exhausting and startling to use on a consistent basis, his eyes lit up the first time he typed to us using the "magic" wand...thoughts and feelings surged over the speech barrier, flooded across the tablet, and presented themselves to us; words...sparkling jewels, portals into Riley's soul! He keyed the word "liberated" several times! Riley’s use of the iPad has allowed him to accurately describe his symptoms, communicate more deeply with each of us, and to share his musings related to the books he listens to or the movies/documentaries (new for him!) he watches. We have been reminded that our dear Riley is still “in there” and still believes in his own words “that together as a team, boosted by the boundless support of all those around us, we will win this battle and stand victorious on the hill of triumph, with our hands thrust in the air!”

In addition, we (Christine deserves a Ph.D. in Lyme disease!) continue to explore a number of supplemental medical options designed to enhance Riley's recovery. As a result, it now appears that Riley and Christine may be headed to back to the USA for a month of treatment in October (stay tuned for an upcoming post with more detailed information). Although there is no silver "Lyme" bullet, we remain optimistic, along with Riley that he will continue to heal and eventually return to the world he loves so dearly.

Thanks again to all of you! Without your prayers, love, support, friendship, and generous offerings of time and money, we would be unable to continue to offer Riley the care he so desperately needs and deserves.

Affectionately,

Terry and family

           

Friends and Family ...     

     


This Thursday, June 21st Member of Parliament- Elizabeth May 
will introduce a Private Member's Bill calling for the 
development of a national strategy to address the challenges of the timely recognition, proper diagnosis and treatment of Lyme disease. The Bill also calls for funding for provinces and territories to implement the strategy.


    
                           
       Speak out for Riley and thousands of others    
                     suffering from Lyme Disease

                                         

Time to take Action

Lyme Disease is on the rise across Canada

                                         

Ticks are not going away


Opportunity to have our voices heard


Stop government and medical politics that are  getting in the way of proper diagnosis and  treatment    

                                                                                                                          

    
                                            

The Bill is multi-faceted, with detailed timelines that require adherence by the Federal Minister of Health at various stages, including when the conference must be convened, when the health minister would report back to MP’s, timeline for posting new national strategy on the official gov’t website, and many other critical details to ensure that the job is done right.

Ø  A press conference will be held at 11:30 am this Thursday, June 21st, 2012 in the Charles Lynch media room, Parliament Hill, Ottawa.

Ø  There will also be a reading of the bill by Elizabeth to our federally elected MP’s later the same day.

Ø   Nicloe B.- teenager and Lyme Disease victim- will be present a collage of photos at this press conference….a voice for all children, adults and families living with Lyme.

Ø  Nicole and her mother have been in touch with Riley these past couple of years offering support and encouragement. Riley’s photo will be on this collage.

      Although Elizabeth May is the leader of The Green Party, this bill is not party specific and is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the massive roadblocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care.

Excerpts from Elizabeth May’s statement on her web site give a little more context to her decision to offer support to the growing cadre of Canadians who are ill or disabled with lyme disease.

“Lyme disease can be devastating. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease.  The public and the medical community need to be educated as to the increasing incidence and range of this disease,” said May.

Warming temperatures are leading the increase in range for the black legged tick.  Scientists are endeavoring to create enhanced surveillance tools, such as risk maps.  A national strategy could support this work and ensure that people can be vigilant in areas where the tick is becoming established.  If doctors know that the local risk has increased, they can help with early diagnosis and prevention.

Early treatment with antibiotics can avoid potentially serious long-term disabilities or even death.  Lyme disease requires improved diagnostic testing and proper treatment to avoid the long term effects of Chronic Lyme Disease.

“Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive,” said May.

How can each one of us help Elizabeth pass this Bill?

We are asking everyone to pass on this info to friends & family (wherever they live in Canada), and do the following to get this National Lyme Strategy Bill passed:

• Contact your federal MP and if at all humanly possible set up a face-to-face meeting.
• Post a comment on Elizabeth May's website to show your support 
• Tell  your story, and how Lyme disease affects you, your family or your friends.
• Tell MP that you know others across Canada in the same predicament 
• Use information from our blog (links at top of page) to highlight the urgent need for improved testing, doctor training and effective clinical diagnosis and treatment
• Tell MP that you, your family or friend(s) are being denied the right to health care and the devastating impact that has had on their recovery, family life and finances
• Ask if you can count on their support to get this bill passed.
•  Make sure your MP knows this is not just a ‘Green’ party bill, it is a bill that could affect every single Canadian including themselves, or their loved ones.

      As an example of what should be communicated to politicians, read a letter  

       written by David Cubberley, the B.C. Director of the Canadian Lyme Disease       
       Foundation.to the B.C, Minister of Health. In it he provides a good synopsis of the  
       situation facing more and  more patients, not just in British Columbia, but also across 
       the rest of Canada.  Accurate information is being withheld from doctors and from the general    
       public. Testing is woefully inadequate. And many are suffering. Come on Canada, let’s get our 

       act together. Don’t run  away from Lyme disease!

"British Columbians are being denied access to medically necessary care due to flawed tests and an induced skepticism about Lyme’s prevalence promoted by the CDC on the U.S. model. Actions are needed to provide doctors with appropriate diagnostic tools and to free them to recognize and treat Lyme effectively when it appears in their offices. This is not difficult to do, but it means getting out from under the inadequacies of the BC CDC’s suppressive approach to this disease. And this needs to be done before the disease becomes an epidemic."

[From Lyme Disease Debacle: Let's End The Denial}              

            Remind your MP to vote with their conscience as this is a private member’s bill; 

            no party vote needed.

            Contact friends, family, acquaintances, people in your local communities. 

            Let them know how important this is to thousands of Canadians.

           

          

     How many more will be bit by ticks this summer and go on to suffer the devastating impact of unreliable testing, ignorance on the part of doctors, months/years of health care money going into the pursuit of a diagnosis.

      Feel free to include the link to this blog as an 
      example  of what is happening to our children suffering with Lyme Disease. They need to be able to put faces to the stories.

THANK YOU!!!

A Day in the Life of Riley

June 4, 2012

By the time I arrive home from work these days, Riley has expended most of his energy getting through the afternoon routine; the awkward dance he shares with Christine in order to shave, shower, drink soup from Dixie cups, and manage the plethora of daily pills and IV medications.  Each step has been carefully choreographed to minimize neurological symptoms startling him (which Riley has likened to being electrocuted)…in essence they are waltzing through a mine field.

Fortunately Christine has become a “Lyme Whisperer”, discerning Riley’s needs from subtle non-verbal cues and miniscule changes in his day to day functioning.  It is uncanny to watch the two of them communicate so effectively and lovingly without words.  At times, I feel isolated and impotent in my attempts to care for Riley.  Unlike Christine, I miss the signals Riley sends telling me he needs to whisper something to me, be re-positioned in bed, or use the washroom.  In the evenings, most of Riley’s communication comes from simple nods of his head; complicated by neurological tics that force his head to weave in horizontal, figure of eight loops, making a yes also a no and vice versa.

Some days Riley’s heroic battle with Lyme sucks the life out of me.  I find myself mired in a kind of spiritual quicksand where frantic attempts to free myself from despair leave me wallowing even deeper. Screaming wildly at the injustice of his illness, I feel a compulsion to pound my fists into the earth or flee to some faraway place where Lyme cannot find me.  I am frightened that I am beginning to lose the memory of Riley’s voice...deeper than my own, and so ripe with kindness.

Grief is a constant companion, and although tears don’t come as easily for me now, occasionally there is a torrent, with relief to follow.  I play “hide and seek” with Hope daily, but sometimes she’s far too cleverly hidden.  Perhaps, though, Hope is not hiding at all, just tenderly caring for Riley in her quiet, unassuming manner...an angel without a face.  

For over two years Riley has endured unspeakable pain and suffering, and been imprisoned in bed, yet he remains as hopeful as ever and resolute in the belief that his health will be restored and he will one day re-enter the world.  Last week he spent several hours with Christine forcing words out of his immobilized mouth (opening his mouth is still very painful and startling) in order to describe his inner spiritual journey.  He stated that despite the tightness in his face inhibiting smiling and giving others the impression that he is distraught, he “wakes each morning with joy”; grateful that he is...still alive to greet a new day, supported by loving family and friends, able to listen to audio-books, watching hockey playoffs, getting physically stronger, etc.

Riley, with his wisdom, courage, and faith, continues to teach me that suffering and joy are both necessary partners in this gift called life.  I cannot begin to imagine the spiritual transformation he is undergoing through his devastating illness.  Riley is a masterpiece in progress and I am a humble witness.

“What would it be like if you lived each day, each breath, as a work of art in progress? Imagine that you are a masterpiece unfolding every second of every day, a work of art taking form with every breath.” -Thomas Crum

Love and appreciation, Terry

Mini-update from Christine on Riley’s treatments and progress:

We have now been in the condo for almost 2 months, and we can see small but noticeable improvements in certain areas for Riley. During the winter at our house, he was becoming less “present” and seemed locked away in a body sliding downhill.  During the last several weeks he describes, “Feeling less weighed down, and less like his body is collapsing in on itself.” Even though he continues to experience extreme sensitivity to touch and his jaw remains so tightly closed…his face isn’t as swollen and the grip on his eyes and forehead has lessened.   In our last blog entry we described his toes being clenched tight with pain all the way up to his groin, and uncontrollable tremors. This has almost disappeared.  We take this as a good sign that perhaps the toxic load is decreasing and the move out of our house was a good step towards healing.

He is also gaining his physical strength- stronger posture, hand grip and mobility in bed, walking with his walker several steps every day, brushing his own teeth (with assistance) and hoping this week to try sipping his drinks and food using his own hands. These are such mundane, “take for granted” tasks in the real world- but for Riley they are monumental. To have been completely dependent on others for every task related to daily living- it does feel like a real accomplishment.

The area that we ask for continued thoughts and prayers, relates to the ongoing assault on his brain. He is experiencing increased neurological symptoms….consistent with the Bartonella infection wreaking havoc.  This shows itself with bouts of extreme agitation, inability to focus words and thoughts, unusual mood swings, and frustration with the smallest of changes in routine-behaviours so foreign to the Riley we all know. He does an incredible job managing these symptoms but they do make him feel out of control and so trapped.  We are beginning a different antibiotic  this week, hoping to target the Bartonella more effectively. Please pray that he responds to this medication, and without too much die-off/increase in the already horrid symptoms he is coping with in this area.  He said to me that he would be ready to do so much more if his brain wasn’t holding him back.

View from Riley's Balcony at the condo

The golf course where Riley first fell in love with the game of golf....now he has a room with a view of the bunkers on the Front Nine.

A Day in the Life of Riley
ONE DAY WORTH OF MEDICATIONS
103 pills to swallow
7 Bags of IV medication-infused over 13 hours
3 needle injections
drops, sprays, potions and the list goes on.....

A Day in Riley's life also includes a symphony of background helpers keeping us buoyed up for what seems like an endless journey.
Thank you to everyone who offered help at the time of our move to the condo. The calendar of helpers...you know who you are, have also been lifesavers -running errands, bringing groceries, staying with Riley so Terry and Evan and I can get breaks. IT REALLY, REALLY has made a world of difference.  
As always- thank you. 

Wishing No News Meant Good News

It has been a very long time since we last posted an update.
We really wish that no news meant good news for Riley.

Unfortunately during our absence on the blog Riley has experienced a continual increase of disturbing symptoms and is suffering with unimaginable pain.  Riley’s journey continues to be a very complicated scenario.

We are limping along, and to be honest we are physically, mentally and emotionally depleted. His round the clock care is so intense that I have found it difficult to put words to the page for the blog…but here is an attempt to summarize what is going on.

First of all- Riley’s increased symptoms:

• Riley’s facial tightness has once again increased.  It is not the Bell’s Palsy that he experienced last year, but rather muscles so tight that it is very difficult for him to open his mouth- its as if his jaw is wired shut and he has to “will it open” every time he needs food or pills.  Even with this effort I still have to use the dixie cups to pry open his lips to get anything into his mouth….it is very labour intensive, tense and exhausting (for both of us). 
• Most days he can only nod yes/no because it is so difficult to push words out. All the wonderful conversation we were having this past summer is impossible right now. A couple of times a week he musters up the energy to whisper out a few words.
• Sensitivity to touch on his face is now extreme as well.  Every daily routine including teeth brushing , face washing and eating/drinking is intensely uncomfortable for him. If I brush his lips or bump his cheek he says it feels like he is being stabbed. Sometimes an unexpected spill of water or something touching his lips the wrong way can cause several minutes of full body shaking, tremors, sweating and agitation. It is really beyond description and so difficult for Riley, who by nature is so tolerant and self contained. 
• The other very disturbing symptom that has persisted the last couple months is the curling of his toes. They are so tight that the knuckles on his toes turn white and he cannot unclench them. The tightness travels right up his leg and into his groin and hip. This comes with almost constant tremors in his feet and what looks like electrical buzzing-it’s horrid!

We are very thankful for small mercies….his sound sensitivity continues to be less intense and this allows him to pass the time listening to audio books, watching golf, soccer and now some hockey as well. He is able to listen to us talk and read to him- and finds pleasure in this, even though he can’t really respond. This is such a gift as it allows him to engage in  activities that bring him some distraction from his symptoms and to participate in the world- even if it is still in such a limited way.

He also continues to work very hard at building physical strength.  He is doing “bed physio”…with his arms, legs, fingers and hands. Using the support of a walker he is now able to stand up straight for 30 seconds at a time. When he first started using the walker, he could only stand up straight for 5 seconds.  He is also very slowly gaining more control of his hands and is able to hold a Kleenex to wipe his own nose- something impossible for so many months. 

The amazing thing is Riley’s soul seems to be intact. YES really!

 He remains positive and whispered out words a couple of days ago to say that his soul is burning brighter than ever and he is “in there” waiting to be set free and that he never doubts that he will be well one day. He says he is learning so much about himself and feels God in every moment of his suffering. He doesn’t express anger or self pity or despair ever- it’s really quite remarkable!

He senses the prayers and support of everyone around him and feels grateful and hopeful- now THAT IS AMAZING!!!

I have come in contact with other Lyme sufferers who struggle with their will to live because the pain and suffering is so great- so we remain thankful for Riley’s spirit in all of this. We learn from him daily.                                

So what does all of this mean? WHY is he not getting better?? The million dollar question!

          

Our medical team continues to be very committed to his “case”.  Although they have seen patients before with very complicated scenarios like Riley- they usually see more progress by now, so are determined to get to the bottom of his particular issues and help him overcome this horrid disease. Even though there are many factors keeping him sick, three main issues seem to be key (a long and winding tale- hope you can stick with the medical chatter):

Bartonella and Biofilm

Bartonella is one of the co-infections (tick borne bugs) that we have mentioned before in the blog. IT IS NASTY and is contributing to many of the horrid symptoms mentioned above- especially the neurological and gut symptoms.  It is much harder to treat than Lyme.

The bacteria are really good at laying down a protective layer called biofilm.

Bio-what?  Biofilm is basically a slimy saran wrap that coats the bacteria and keeps the antibiotics from getting to them. Great!!  More sophisticated tests have indicated substantial biofilm….sounding more and more like a science fiction movie right??  When appropriate medications are given to break-up the biofilm, significant numbers of bacteria are let loose and the antibiotics can do their job. However, with Riley- because of his trouble with detoxing- this has to be done very, very gently.
Aggressive treatment is not for Riley.

Biotoxins

Another key issue that Riley’s medical team believe is getting in the way of progress is what is called “BIOTOXIN ILLNESS”

Last year while in California, testing revealed he would have a more difficult time with treatment- in particular with the removal of toxins produced from the bacterial die-off. Little did we know then- just how much trouble, or the cascade of other problems he would encounter on his road to recovery.

This testing provides specific insights as to the patient's ability to remove biotoxins effectively from the body. It is estimated that about 20% of the general population will be found to have genetic types that would increase the likelihood of more severe illness if exposed to biotoxins produced from Lyme disease or other biotoxins such as molds.

Once exposed, genetically susceptible individuals are unable to clear the toxins naturally, and that sets in motion a biochemical chain reaction which disrupts normal processes in the body and results in a  disregulation of the body’s innate immune response.

At the core of why one person becomes ill from this exposure and another doesn’t is because of their genetic susceptibility (or predisposition)- what is built into their DNA. When the body is faced with a foreign substance, it immediately begins to process that substance- determining if it is good or bad, friend or foe.  If the body determines the substance as foe, it will develop antibodies to bind and eliminate these substances, called antigens.            

Riley’s body can’t do this on its own. It then becomes a vicious cycle -the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back.  This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms.  His entire body suffers from friendly fire from his own innate immune system, and essentially goes haywire trying to eliminate the foreign toxins.

SO- knowing Riley’s genetic issues, the severity of his symptoms, and the lack of progress with the best Lyme disease treatment possible….the doctors began to suspect other biotoxin issues and ran a whole series of tests on Riley to reveal that not only are the Lyme related bacteria causing troubles for him but likely there is exposure to other biotoxins.- MOLD. We were asked to test of our house to see if there is any evidence of water damage- causing mold mycotoxins. We thought this was far fetched because we can’t smell or see any mold and recently renovated much of our little 55 year old bungalow. UGH!!! Tests have come back and it appears that there is mold somewhere.  The levels of mold mycotoxins (the ones that cause trouble) are way, way higher than they should be. It also fits Riley’s symptom history. REALLY- what next we ask in disbelief? To make this long, long story, shorter- we are in the midst of planning a move out of our house…ASAP.  We must see if this is indeed a contributing factor.  Riley and I will move to a condo and keep Terry and Evan holding down the moldy fort in Wildwood.  We need to get Riley out to see if this helps, and then we can work towards finding the mold and remediating, if possible. We can’t do this with him in the house.  Mold spores travel in the billions in the air, through the heating vents, and on all surfaces.  Water damaged buildings can harbour very large amounts of spores, and often go unnoticed until someone is getting ill from them.  We suspect the damage is in the walls somewhere near plumbing in the basement. It is likely that this sensitivity to mold mycotoxins would never have posed a risk to Riley if his body and immune system hadn’t already crashed from the Lyme toxins. It is a double whammy. All of this has answered for us why we hear of some Lyme patients having a much easier time regaining their health once on appropriate antibiotics to kill the bugs. Their bodies are able to more efficiently deal with the toxins and thus get better. Is there good news in all of this?  We’re not sure.  Fortunately, there is a brilliant team of researchers and physicians finding new treatment options for biotoxin related illness. We have started some of these treatments, and once out of the house, will continue with these. We are overwhelmed by the complexity of all of this, and terrified by the niggling questions and the “what ifs”. What if…moving him doesn’t help?   What if it has been too long and his body too depleted to rally?   What if his body doesn’t respond to the biotoxin elimination treatments? What if we all lose our minds and health in the process? Moments of discouragement and fear are part of our everyday experience right now. Somehow though, we continue to limp along.  Riley’s will to fight all of this and his faith- is our driving force and inspiration.                                      So many of you have asked if there is anything you can do-YES.  Continue to pray and imagine Riley healthy one day.  Keep telling us that we will make it through this terrible nightmare. Your emails, meals, notes, encouragement and practical help keep us going. Please know that your connection really matters and we appreciate it so much. Some practical things we are needing:  Help with errands, grocery shopping, pharmacy runs etc.  I am looking for someone (or a roster of a few) who could commit to a couple of times a week as a “runner”. Unless I have a nurse or our health care aide here, I can’t leave the house, and also Riley’s care is so full time that dashing out for groceries is often not an option. I would be thrilled to hire someone who wanted a few hours/week of this kind of work. RN for IV treatments….we are looking to hire a “back-up” nurse to help more consistently with the administration of Riley’s IV medications. The private homecare companies do not have a pool of nurses able to administer IV meds- this usually comes from Alberta Health Care, and they are not able to help because of the politics of Lyme treatment. We have a great nurse who is helping us now, but often is unavailable to come when we need her.  HELP! Let us know if you know of a nurse who is looking for some part time hours. We would even pay liability insurance so he/she could work privately. We will be moving Riley to a condo within the next couple of weeks. If any of you could be on call for some moving related errands, or could help set up the space before we move Riley there- let me know. It will likely take place the week of the 27th of March. We are so thankful for…. A wonderful health care aide who has become one of the family. Olena is here to help with so many things related to Riley’s care, and quite literally keeps me going.  Evan’s exuberant and healthy 14 year old energy in the house. He is doing an amazing job at handling this difficult family life we are experiencing. He is thriving at school and totally absorbed with his acting and singing commitments.  How our story has helped others find the treatment they need for previously undiagnosed Lyme disease. I am thankful for Terry- who turns 50 years young this weekend.  Happy Birthday Ter! Going to work everyday and leaving Riley is very difficult.  With love and appreciation to all of you for caring enough to keep reading the blog and hanging in there with us.  We appreciate it more than any words on a page could communicate. Warmly, Christine