Monday, June 6, 2016

Ride For Doug - 10th Annual - Post Ride Thoughts

Here are my post-ride thoughts after the 10th Annual Ride For Doug.

As the day breaks it is clear it is going to be a hot one. At 9:30, the air is already warm, and our jackets are unzipped as we leave home to set up for the ride.

10 years - and it still sends shivers down my spine to pull into the lot. The setup team is already there, pylons and ribbon out. Signs going up. This is really going to happen. We park in our usual spot. Symbolically the handicapped spot. The bright orange motorcycle in stark contrast to the blue and white wheelchair painted on the asphalt. Today is about juxtaposition. The heart breaking reality of Muscular Dystrophy against the hope and resolve of a hundred bikers.

As the lot is set up, signs fluttering in the breeze, a man approaches. He has no motorcycle to register, and the ride is still hours ahead. He lives in the area, and his grandson - just 6 years old - has just been diagnosed with Muscular Dystrophy. My heart breaks. We take some time to talk. We talk of hurt, and of hope. Of promising research for the future, and the shock of today's pain. He will put is son in contact with me, and perhaps the road our family has travelled can be of comfort and hope.

It isn't long until the first engines are heard. Echoing through the trees they approach. Some bikes one at time, others in pairs. Once in a while a club arrives together - their entry formation causing all to stop and watch as they sweep into the lot, like an eagle swooping to guard her nest. And in it all, Doug is watching. Moving from bike to bike, talking to riders. Selfies are taken. High fives exchanged. This is Doug's lot. These are his people.

As the heat turns up, the ride approaches. Doug has taken the megaphone and is rounding up the riders for the briefing. His sense of humour shines through as he instructs "Grom riders to the front because they are freak'n awesome". It is a varied group of riders. Lots of chrome and leather from the cruiser and touring crowd. Big three wheeled trikes and can-ams, and little Honda Groms, almost lost in their shadows. A handful of scratched and dirty dual sports share space with shiny sport bikes. It doesn't matter WHAT you ride today, just THAT you ride. And that today, you Ride For Doug.

Perfectly timed, a plane roars overhead. A rider - not wanting to miss their 10th straight RFD - has surprised us with a fly by. All eyes turn skyward as the return pass salutes us. Canadian Snowbirds it was not, but a heartfelt gesture by yet another friend of Doug. If you want to think of fighting Muscular Dystrophy as a battle (and it is), you're going to need your air support.

We are then off. Eighty nine motorcycles strong, leaving the lot in a show of power. One of their own has a tough battle ahead, and every one of the riders is proving they are riding with Doug. He is not alone. This next week, while at the hospital hooked up to his weekly IV, he won't be thinking about Muscular Dystrophy. He will be sharing the tales of the road. Talking about who showed up, who got a new bike this year, and planning and scheming on how to get one of his own. 

The cool breeze of the open road is a welcome relief to the heat of the pavement. As the line of bikes snakes through the roads of Langley, Abbotsford, and Mission - Doug's head is turning around to catch the sight. There are some interesting looks from the cars we pass. Cool and refreshed with their air conditioning on high, there is open wonderment at what could draw these bikes all together.

Our first stop was at Cascade Falls. Crowded today because of the beautiful weather. We are met with bottles of ice cold water. Hot sweat meets cold water, and for a minute, the cold water wins. More stories are swapped - mostly from the safety of a shady tree. Smiles in spite of the discomfort of motorcycle leathers at rest in the sun. We, like the leathers, are built for the ride - not to stay idle - so the stop is a short one. First one, then the others firing up their engine, the sound echoing off the beautiful backdrop of wilderness. 

In spite of the hydration stop, Doug has developed a migraine. And for the next hour he presses on, refusing to use the chase car and its air conditioned cool. He doesn't want to miss a second of this, and drawing from the strength around him, presses on. I check him regularly. We have signals, and my questioning taps are answered mile after mile with ever increasing assurance that "he's got this one".

Sweeping corner after sweeping corner fall behind us as we roar through the shadows. Cooling breeze (and some advil) have helped Doug to stay ahead of the headache. His smile is there as he looks back at each corner at the never ending snake of bikes. If only we could live in this moment the rest of our lives. There are no hospital beds, no needles, no nurses. On the road there is only peace. Beautiful scenery, close friends, and the comforting throb of the engine.

Our second stop approaches, and more cold water. Volunteers have added watermelon to the mix, and the crisp cool  sweetness reminds us that sometimes you need to experience the exhaustion of heat to fully appreciate the coolness of refreshment. In the midst of pain, joy is all the more sweet. Plans are being made here. Riders exchange notes of which sections they plan to revisit. Doug finds his new Grom friends and asks if he can sit on one. I'm not sure whether to be proud or concerned as he discusses wheelie techniques with them. His feet almost reach the ground, and I can see Doug working on his angle to buy one in just a few short years when he turns 16. What I wouldn't give to be able to promise him that he could ride one. Muscular Dystrophy sucks.

Out of the lot we pull. Nearly ninety bikes in formation. Rumbling through Glen Valley, proudly proclaiming loyalty and friendship. People can sense the cause. On River Road, a motorist stops their truck to allow us to complete a left turn all together. Rewarded for their kindness by front row seat to a parade - and dozens of waves from grateful riders. The pull of an air conditioned BBQ leading us home.

As we pull back into the lot - we are greeted by a crowd of supporters. Friends and family without bikes, who join us for the post ride celebration. Row after row of returning bikes park. Each and every one with a smile on their face. Good roads for a good cause. Over a hundred miles ridden without accident. 

This year, Doug's guitar teacher has put together a band. They rock the BBQ with songs right off of Doug's iPod playlist. Doug was going to join them as guest guitarist on one number, but the band and Doug practised in different keys. That certainly could have ended poorly. As a 10 year retrospective slideshow played on the big screens, the band launched into "This Old Highway", a song written specifically for Ride For Doug. I have cried many a tear to that tune. Usually on the road, in my helmet, thinking about the future. Today it brought me strength. The imagery renewed.

We finished the night off with a program, thanking volunteers and sponsors. Door prizes, and jokes. Stories swapped. The Director of Services from Muscular Dystrophy Canada then took the stage. Margot Beauchamp shared the challenges faced by families with Muscular Dystrophy. Challenges with equipment funding shortfalls. An ever increasing need, against a shrinking support base. She thanked all of us for our support, encouraging us to keep giving. Without the support of events like this, funding and programs for families will dry up quickly. Thank you friends of Doug.

But there was more. Doug's sister Sam took the mic. She spoke boldly and openly about what it felt like to be the sibling of Doug. She shared about how it felt to be in the shadow of her younger brother, and how Muscular Dystrophy has not only stolen from him, but from her as well. Things other families do together - like riding bikes or going on hikes can't happen. She talked about how the demands of medical appointments and other events cut into her family time, and how it can feel like loss. It is not often a teenager will bare their soul like this, and yet Sam lowered her walls in a room full of bikers. And by the end, many an eye was wet. She deserved the standing ovation she received. And I don't think anyone is prouder of her than her mother and I.

I wrapped things up with a few thoughts of my own. 10 years of Ride For Doug. I don't think anybody could have guessed that we'd be here. It has been a long and winding road. In the time since the last RFD, Doug has switched from weekly injections of his clinical trial drug to a weekly IV. He has had not one, but two surgeries to install ports. I have flown to Washington DC to lobby the FDA for drug approval. And we have logged more than 60 visits to Children's hospital. But Doug is still walking. For a DMD boy of 13.5 years, this is impressive. But with the sweet comes the bitter. This week, just 5 days before Ride For Doug, the trial medication he is on has been discontinued. The drug was not receiving the approvals it needed to move forward, and the drug company has decided to reallocate its resources to other Muscular Dystrophy treatment research. Days like this are why we need Ride For Doug, and the friends and family who support us. Pain and disappointment are never far away. We will be leaning on you in the coming days as we regain our footing. And after a day like today, we have no doubt that you will be there.

For 2016, Ride For Doug had two fundraising goals. The first was to support Muscular Dystrophy Canada the way we always have. For the first 9 years of RFD, we have raised between $150,000 and $160,000 for this charity. This year, we added to that total by nearly $20,000.

Our second goal for this year was to help purchase a Stair Lift for Doug in his own home. As he is getting older, stairs are becoming much more challenging. He needs a way to move from floor to floor. We have received quotes of between $23,000 and $28,000 to fit one to our stairway. Funding is available, but very limited. We have been told to expect no more than $6,000 to $10,000 between health insurance, and various charity applications. This leaves a shortfall that could be as large as $20,000.

RFD 2016 raised over $12,000 for this project. This is where words fail me. There is not a powerful enough word for "Thank You" that I can use here. It's no wonder Doug is in the constant good spirits he is. He knows who is with him. He knows that when the rubber hits the road, friends and family like this will be there.

In total, Ride For Doug 2016 raised in excess of $30,000*. And money is still coming in. Never let anyone doubt the resolve of a biker, nor their loyalty to their friends.

Thank you. Looking forward to riding with you again next year.

* note the final totals were lower than those announced at the BBQ. Some pledged money didn't arrive so the totals have been adjusted accordingly.

Sunday, June 5, 2016

James 4 - Perspective

On Ride For Doug Sunday, I was asked to share a little bit about how I view the words from James 4 in light of our personal journey. This is what I came up with.

James 4

In James 4, we are instructed about “Boasting About Tomorrow”. Pastor Wes has asked me for a bit of my personal journey on trusting God with our tomorrows. What he didn’t specify is whether or not I was going to be a cautionary tale.

On February 3, 2005, our tomorrows changed forever. Our son Doug was diagnosed with Duchenne Muscular Dystrophy. While normally an inherited disease, ours was a fresh mutation. No warning at all.

In the few sentences that the doctor spoke – all of our tomorrows changed. I no longer could say “I’m going to be a Hockey Dad.” Or “we’ll go to the park and play catch.” Or “I’m looking forward to teaching you to ride motorcycles.” All of the things that we as parents said we would do evaporated in an instant.

We were not in control of tomorrow – no matter how much we boasted about it.

I’ve had plenty of opportunity to think about this. Things tend to rattle around in my head for a while until eventually some nugget of truth comes out.

For me, with this passage, that nugget is the fact that God’s perspective is infinitely different from mine. I am looking at the world with the viewpoint of “best possible life for my 81.24 years”. I measure success and failure based on what I accomplish with my time on earth. Success, wealth, fame, happiness, fulfillment, good deeds and the like measured over the span of my life.

God, on the other hand, has a different plan for my tomorrows. God looks at me and doesn’t see just a middle aged guy doing the best he can. He sees me as just beginning my infinite journey. My time on earth is just a flash in the pan compared to my time spent afterwards with him in heaven.  And that changes things.

What good are success, and wealth and happiness when measured against an eternity in heaven? What value is health in a mortal body - that will be discarded shortly for an eternal perfect body? Why do we put such importance on the things of this earth?

In those moments of clarity, where I actually GET the perspective, I learn to value character. Integrity, honesty, love, perseverance. These are things that matter. They are what goes with you after you finish your 81.24 years. Strength of character and love of God. Those have eternal value. So if God is building in me by taking away _my_ plans for tomorrow – I guess that’s for the best.

When I can capture this perspective in my mind, then trusting God for tomorrow becomes a whole lot easier. When I realize that the reason Gods tomorrows and my tomorrows don’t line up is because I’m not using the right perspective to measure things, then things tend to click into place. And that brings relief and peace.

Please pray that I will learn to live in this place of perspective. God has adjusted our tomorrows yet again. On Tuesday night this week, we received word that the clinical trial medication that Doug has been on is being discontinued. We have very little information, and it’s too soon to even try to guess what this means to tomorrow – but I’m sure it will make a lot more sense when I can find God’s perspective again.

God is in control of tomorrow. I get that. Some days it’s the trust part I have trouble with. But I’m working on it.

Monday, December 14, 2015

All I want for Christmas is a cure for DMD

(the following is a letter I sent to the Township of Langley Firefighters) 

Doug is my 13 year old son, and he has Duchenne Muscular Dystrophy (DMD). You may have met him at the Langley Firefighter’s Appreciation Banquet this year.

For many years, the Langley Firefighters have joined with firefighters around the world to raise funds to support families like ours. We appreciate it greatly. Without the support of groups like yours, Muscular Dystrophy would be an impossible battle to face alone.

Since the time he was just 8 years old, Doug has been involved in a medical study for a new drug aimed at dramatically slowing the progression of DMD. A typical DMD boy will transition to full time wheelchair use by the age of 11 or 12, and has a lifespan of 20-30 years. This new drug is looking to change this.

Doug joined the study in the summer of 2011. For the next 3 years he made weekly trips into Children’s Hospital for drug injections and testing. It was a painful ordeal – each injection hurt, and the batteries of blood draws, MRIs, EKGs, muscle biopsies, and other treatments were exhausting. But there was promise. Where decline was expected, we found stability. Instead of moving towards a wheelchair, Doug’s walking distance got longer and longer. His balance improved, and at the age of 11, instead of riding in a wheelchair, he was able to go on walks in excess of 2 miles long.

Then, the drug changed ownership. During that period, the study was halted, and in the 18 months it took to get restarted, we watched our son decline. We weren’t doing long walks anymore – a couple of blocks was Doug’s limit. He began to need to crawl up the stairs instead of walk. Our hearts broke.

A couple of months before Doug’s 13th birthday, the study started up again. Doug once again was on the medication. After a few months his decline slowed, and after 6 months in, it seems to have halted. We have met with other boys who have gained back some or even most of their lost time. We are hoping that as time goes by the medication will help restore Doug’s lot time too.

The FDA is deliberating approval of this game changing drug. It is called Drisapersen. They aren’t sure what to do. The effects in the statistical data are not matching up with what families like ours are seeing. About 20 families like ours travelled to Washington DC to make our plea in person last month. The drug must be working for so many people to have such dramatic evidence.

The FDA has a timeline of Christmas Eve to decide on whether to allow this drug onto the market. This would make it the first and only treatment for DMD. We need your help to convince them that patients who have proven this drug works should continue to have access – and to allow boys who couldn’t participate in the clinical study access to this life saving drug. Without it, there are no other options. This drug will not work for every DMD boy – but surely those who respond to it should be allowed continued access!

Please sign this petition. This petition was started by Gavin’s mom. Gavin is a friend of Doug’s who was in the same study at Children’s Hospital. His story is just like Doug’s.

Nearly a year ago the FDA was dragging their feet on whether or not to even review this drug. A petition started at the Whitehouse managed to raise over 100,000 signatures over the 30 days it was open. Shortly thereafter, the FDA accepted Drisapersen for review. Your voice makes a difference.

Please sign the petition and share it. I can’t think of a better Christmas gift for Doug, Gavin, and all the other DMD boys.

Cam Penner

(Doug’s Dad)

Monday, September 8, 2014

A Sea Story

Let me tell you a little story about a sailing ship, on the high seas of the northern Pacific...

Once upon a time, a ship was sailing across the great ocean, a storm came out of nowhere, and after lashing the ship with wind and waves for what seemed hours on end, it swept one great wave across the deck of the ship, and faded away.

It left in its wake a tangled mess of ripped sails and ropes - the ship's dory and life rafts torn and scattered across the waves of the sea, swept across the horizon. All on board were spared from injury but one. One small boy was swept  away from his family, and off the deck by the last wave, and tossed into the cold unfeeling hands of the Pacific Ocean.

He cried for help, and immediately the crew spotted his head - bobbing up and down with the waves. Terror in his eyes as he struggled to stay afloat. In the cold Pacific, it takes but 20 minutes of exposure to be fatal. After only 10-13 minutes - unconsciousness sets in - and rescue becomes more and more difficult. The clock was ticking.

The crew were first rate sailors, and immediately the ship set course to rescue the boy overboard. Immediately the captain noticed the lifesaving gear the storm had ripped away, and formed two task forces.

To the first, he assigned the task of replacing the dory. A makeshift raft, and the means to launch it from the storm torn decks high above the sea. This was to be the replacement lifeboat - for this rescue, as well as those to come in the days ahead, as the storm threatened it's return. The crew worked furiously lashing together planks and rigging pulleys and tackle. They were making progress by leaps and bounds - but their solution was going to be an hour or two away. Far too late for the boy in the ocean. Still, they threw all they had into their task. Heart, mind, and soul.

To the second task force, the captain assigned the task of doing whatever they could to keep the boy alive until the liferaft was ready. Working with the material they had at hand, they fashioned together a makeshift life preserver out of old clothes and hastily filled hot water bottles. It wasn't pretty, but it did seem to offer some buoyancy and warmth, and a mere 9 minutes after the boy was swept over, the crew managed to toss the ramshackle device near enough to the boy for him to cling to. All eyes were glued to the boy - would it be enough? The minutes began to tick by. First one, then 2 minutes passed. The boy was still afloat - now in the water for over 10 minutes. It was sometimes hard to tell, but he was not fading as fast as before. But his head still bobbed in the water - would it be enough?

Suddenly orders were shouted, and the ramshackle clump of hot water bottles and old clothes were pulled away. Pulled back up to the ship so they could be examined to see how well they were working. Alone again on the waters the boy began to struggle. Cold waves lapped over his head and his strokes were beginning to weaken. Clearly he was doing worse now, back on his own, than he was with the device. The task force argued amongst themselves about whether or not it was working, only to be called up short by the anguished wail of the boys family aboard the ship. "Have mercy!" they cried - begging the crew to redeploy the device, beseeching them to give the boy a chance. Minute after minute passed, as the crew wrestled with whether to re-deploy the only chance the boy had of surviving until the raft was ready. The decision to throw it out to him again was made - but by this time, the exhausted boy was nearing the point of unconsciousness. The boy grabbed back on, but by this time the cold sea had stolen the strength in his arms, and his leaden feet were not strong enough to hold on. And he began to slip away...

Duchenne Muscular Dystrophy steals the ability to walk from most of its victims between the ages of 10 and 13 years old. Doug was on a promising new drug from the age of 9 to 11 - and we felt it showed a noticeable improvement in his daily living strength and endurance. The problem is that measurement of results of treatments on this disease are difficult. The drug didn't meet the manufacturers hopes, so they stopped the study to "analyze the results". It has been a year now of "analysis" and despite the crying out of parents, promises of re dosing are still months away. Today is my son's 12th birthday. Our kids are slipping beneath the waves. We can see it each and every day.

Please urge researchers and regulators alike that unnecessary delay and deliberation is not just delaying the treatment and cure - it's costing us our children.

- an anguished parent.

Monday, June 4, 2012

Ride For Doug 2012 – A look in the rearview mirror

Today is the morning after the 6th annual Ride For Doug.  What an experience.  The day starts in an empty parking lot.  A cool breeze blows, and the clouds tease us with hints of rain.  A deep rumble begins, but rather than rain bringing thunder, it is the sound of riders beginning to arrive.  Black leather, shining chrome.  The smell of power.  I close my eyes,  taking in the sensations, holding the hand of the boy that made it happen.  Today is Doug’s day.  These are his friends arriving.

Bike after bike arrives.  Riders from all points of the compass, harking news of the weather.  A drizzle here, a cool breeze there.  Nothing that can stop these riders from coming.  They are here for Ride For Doug.

Doug is on cloud nine.  He wanders from rider to rider with a keen sense of purpose.  He remembers who has come before, and welcomes those who have come for the first time.  Bikes are admired, and many questions are asked and answered by patient bikers with soft hearts.

And still they arrive.  The black and chrome is punctuated by bright flashes of colour.  It doesn’t matter what style of bike you ride today.  Long sweeping cruisers intermingle with high strung sportbikes, a peppering of dual purpose bikes providing a dirty contrast to the gleam and shine.

Once assembled, the ride is ready to move out.  Eighty-eight bikes speak with but a single voice.  Eighty-eight bikes forming a column of support stronger than any bridge girder, and stretching further than the eye can see.  Doug rides up at the front with me.  His sister Samantha, on a bike beside him.  His mother Allison, on a bike behind him.  I can feel him taking it in, turning to watch the long snake of bikes travel up and down the undulating road. 

This is the point where I am usually moved to tears.  This show of support strikes deep to the core.  There is nothing in the world that can match such an overwhelming experience. 

And it’s not just the riders.  To get to this point has been hours and hours of work by a multitude of volunteers.  Showing their support with the horsepower of their actions.  They are with us on the road – perhaps not on two wheels, but definitely in spirit.

We head through the roads of Langley, Abbotsford, and cross into Mission.  The weather is holding, the leather staying dry.  Our first stop approaches.

At the BC Hydro Recreation Area by Ruskin dam – the riders are greeted by an enthusiastic team of volunteers.  Pointing the way and cheering us on.  I can feel Doug’s face beaming behind me.  Nearly a hundred bikes stream into the lot, and the riders dismount for a stretch.  Stories are being shared with friends and strangers alike, and smiles abound.  The volunteer team at the rest stop provides water – enthusiastically delivered to the riders by two boys around Doug’s age.  This is not their first Ride For Doug either. These bearers of water have volunteered before, and have taken the spirit of The Ride throughout their year – bearing the flag of Muscular Dystrophy on behalf of Doug.

Another highlight takes place here.  Doug’s sister, Samantha, and her grandmother have spent the weekend baking cookies.  Riders who are RFD veterans make a beeline for her basket.  The smiles grow. Three hundred cookies are consumed faster than the starting grid at a Grand Prix race. It seems Samantha has found her own way to support Doug, and Allison and I feel a swelling of pride as sibling rivalry takes a back seat – at least for today.

Back onto the road we go.  Twisting and turning through Mission and some of my favourite streets.  The pavement here isn’t as smooth, and the corners are tight and blind.  These roads remind me of the challenges that Muscular Dystrophy families face continually.  A bumpy ride through life, never knowing what is around the next bend.  Gripping the bars and doing our best to navigate through a never ending series of challenges.  But then I hear it – the sound of exhaust echoing off the hills beside the road.  The thunder that tells me that I’m not riding alone up here.  My loved ones are close, and the community has gathered to ride behind me.  We can do this together.

An hour or so later, we pull into the second rest stop.  Through a quirk of fate, some of the riders near the back took a shortcut and ended up here first.  We arrive to the sight of 50+ bikes lined up and waiting.  Their riders just dismounting.  We share some laughs, and swap some stories of the road.  New friendships are forged in the common experience.  Happy volunteers spread water to thirsty riders, and their vibrant excitement (and fluorescent shirts) raise our spirits further.  These are some of Doug’s SEAs from school – joining in the celebration, and showing that they too are on Doug’s team fighting Muscular Dystrophy.

One more leg of the ride to go.  Another mile long rolling demonstration of resolve.  “We must beat Muscular Dystrophy”.  That is what the engines are saying.  “We must beat Muscular Dystrophy”.  My heart is strengthened with each mile.  How can we not beat it with support like this?  What disease dares to stand a chance in the face of Doug and his biker army?

The miles fall away, and almost too soon we arrive back.  The sun, greeting us as it pushes away the last of the clouds. But not just the sun - the parking holds another radiant sight.  Friends, family, and  a host of others greet the returning riders with standing applause.  As the bikes roll in, one after another, their engine still singing their song, the riders are treated to a royal arrival.  Because they are all heros.  Doug’s Heros.

We move inside to a BBQ.  A welcome sight to the hungry riders.  Tables fill with a mixture of over 300 riders and non-riders alike, and stories are swapped.  Bridges are built across cultures, and friendships are established in a common cause. The mosaic of people is as colourful as the bikes parked outside.  We have riders, extended family, friends.  Nurses and researchers from BC Children’s hospital.  Doug’s classmates, teachers, and administration.  Local government is represented.  We have families in the midst of their own battles with Muscular Dystrophy, and those who have lost loved ones to the disease.  Doug’s new friends are welcomed, and added to the mix.

We celebrate with food, and with door prizes.  We recognize the generosity of our volunteers and our sponsors – many of whom actually ride with us.  I have the opportunity to share a bit of what it is like for our family, as we are currently involved in a research project to treat Duchenne Muscular Dystrophy.  I think I managed to hold back the tears this year, mostly.  This year, the proceeds of the ride will be used to fund research for a cure to Muscular Dystrophy.

And then, it is back to the parking lot where we started.  Doug insists on seeing each bike off.  Thanking them for their support.  For the courage to face another year. 

As the engines fade away, their cry can still be heard in the distance.  “We must beat Muscular Dystrophy.  We must beat Muscular Dystrophy.”