Patrick Sullivan

Humbled

Humbled

Circumstances evolved such that I was given an opportunity to take part in the last day of the Sears National Kids Cancer Ride.

Carpe diem being what it is, I took the opportunity.

As I flew from Vancouver to Halifax, it wasn’t lost on me how big this country really is. Nor was it lost on me how much the National Riders had accomplished. Flying across the country is one thing. Taking a bike all that way, is a whole different thing.

I arrived in the early evening before the riders and had a great time catching up with new/old friends. With the time difference and the chill in the air, getting to sleep was a bit of a challenge. I had anticipated this so I had bought along my iPod Shuffle. I cued up an audio book and listened for a while before I managed to toss and turn myself to a fitful sort of sleep.

The book I was listening too is called The Emperor of All Maladies by Siddhartha Mukherjee. It is an excellent book about the biography of cancer, cancer treatments, epidemiology, prevention and philanthropy. I had read it before listening to it and anticipate that I will read/listen to it again.

I was listening to the part in the book about targeted therapies when I came across a segment that really stuck with me the first time I read the book. For context, the type of cancer being discussed at this point in the book is Chronic Myloid Leukemia. It is a relatively rare type of cancer that impacts a few thousand people a year.

Prior to the year 2000, the treatment for CML was full body radiation and a stem cell transplant. Patients who presented with CML prior to the year 2000 were told they had a very bad disease, that their course was fatal, their prognosis was poor and their median survival was maybe three to six years.

Then they found Gleevec. A pill with minimal side-effects that works by targeting a particular part of the CML cancer cell. After Gleevec was introduced, instead of being told they had a fatal disease are now told they have an excellent prognosis, that they will usually live their full life span and they will have to take a pill, Gleevec, for the rest of their lives.

From my perspective, the summary paragraph at the end of the chapter discussing Gleevec resonates loudly in the paediatric world and is worth quoting in its entirety:

As a final note: I said CML was a “rare” disease, and that was true in the era before Gleevec. The incidence of CML remains unchanged from the past, only a few thousand patients are diagnosed with this form of leukemia every year. But the prevalence of CML —- the number of patients presently alive with the disease —- has dramatically changed with the introduction of Gleevec. As of 2009, CML patients treated with Gleevec, survive an average of thirty years after diagnosis. Based on that survival figure, Hagop Kantarjian estimates that within the next decade, 250,000 people will be living with CML in America, all of them on targeted therapy. Druker’s drug will alter the national physiognomy of cancer, converting a once-rare-disease into a relatively common one. (Druker jokes that he has achieved the perfect inversion of the goals of cancer medicine: his drug has increased the prevalence of cancer in the world). Given that most of our social networks typically extend to about one thousand individuals, each of us, on average, will know one person with this leukemia who is being kept alive by a targeted anticancer drug.

That kind of change is worth riding for.

After a fitful sleep, I approached Jeff in the morning and asked him if I could do the dedication. It is hard for me to understate how impacted I was by hearing about the success of Gleevec again. Impacted enough that I felt the need to share it. I also wanted to say thank you. A thank you to the Riders and Volunteers who gave their time, sweat and tears on this remarkable journey. Doing a relay leg or two is one thing, doing what they had done is remarkable. Most importantly to me, doing what they had done offers hope and promise. The hope and promise of a changed story.

So I did (thank them and dedicate the day to them) and we were off. A pleasant day of rolling hills. To me the riding on the final day is a day of snippets. Snippets like:

1. Watching Josh and Mark power up a hill on their own. Beautiful symmetry in action;

2. The five person tandem. Josh and Mark on the pedals. Roger and Carlos on the handles. Another rider with his hand on Carlos back. The beauty of teamwork.

3. Peggy’s Cove and the Flight 111 Memorial.

4. Neil’s acknowledgement of one of the things he has learned on this journey. You see, Neil really likes biking. Not sure how many that will resonate with, but it really resonates with me. Me too Neil, me too.

5. Time between fog to no fog. Five minutes. Probably less.

6. The banter. A bike ride can be about a lot of things. Banter is one of those things.

7. The anticipation. I was mostly an outsider to this. I had parachuted myself in to be a part of this last day. The anticipation belonged to those who rode the entire way. It was palpable and fun to be immersed in.

8. Finnspiration Bear. Spotting where Jenn and Wayne put Finnspiration Bear along the way is one of the highlights of the entire day and trip for me.

But at the end of the day, Riding was only a small part of the day for me and I want to skip ahead to the Finn-ish at the Atlantic. Again, I sensed it was a different experience for me being at the Finn-ish line. My snippets from the Atlantic:

1. While I enjoyed the festivities, seeing Finnspiration Bear get his medal meant much more to me then it did to get mine. He earned it. He worked hard and went the whole way.

2. Jumping into the Atlantic with Scott.

3. Seeing Josh on the shoulders of Mark and Roger spoke volumes to me. Josh is a remarkable young man who clearly takes each opportunity as a “How Can I” instead of “I can’t”. Josh made a choice a long time ago to be Handi-Capable and I have a tremendous amount of respect for that. Mark and Roger were the silent giants who helped make the “I Can” possible. To me they are emblematic of what Coast to Coast is. People helping people help people. I can’t think of a more fitting image for this cross-country journey then Josh on the shoulders of Mark and Roger.

4. Bryan and Maureen. I hope you enjoy your Finnspiration Bear. He had a fun time getting to you.

5. Len and I at the Atlantic. And Finn and Alex. A small gesture pregnant with meaning. Ultimately, while we physically carried those kids (all of them) across the country, I think the reality is that they really carried and carry us. Best blind date ever. Thanks Jeff.

And then of course there was the party. A party that will stay with me forever.

Aside from delicious, the dinner itself was special because I got to sit with Len and Frances. There is an incredible freedom in just talking with someone who has walked the same road as you. Who has the same worries about their children for the same reasons. A layer of explanation is removed and a layer of understanding is embedded in its place. Nothing earth shattering. Nothing changed. Just a nice comfortable layer of freedom.

Then the part I was unconsciously anticipating came. Some context. When we started the Ride at the Pacific, a beautiful young woman sang O’Canada for us. Then she sang a beautiful rendition of Somewhere Over the Rainbow (which just happens to be Jeff’s favourite song). A day or so later we received an email from Jeff asking if anyone would object if he used Somewhere Over the Rainbow as part of the tribute to 2011 Ride. My stomach flipped a bit, but I nodded my agreement.

You see, at Finn’s celebration of life, Sam and I put together three video montages celebrating Finn’s life. One of those videos featured pictures of Finn with Sam, Baird, Sarah and I. A celebration of Finn with family. We had to go through thousands of pictures to make that video.

So when Jeff asked about using Somewhere Over The Rainbow, my mind went to that video that Sam and I created with much love and limited technical ability. I thought briefly of voicing an objection, but only briefly. While Somewhere Over the Rainbow is important to us, the song is meant to be shared and more importantly it fit. It was the right song.

So as dinner wrapped up and the speeches were about to start, I slipped away from the table (easy to justify because of some well placed pillars) and found an alone spot on the other side of the room. I wasn’t overly surprised when the video tribute started to the exact same version of Somewhere Over The Rainbow that we used for Finn’s celebration of life.

So I sat and watched in a strangely detached reflective kind of way. I thought about Finn and wondered if I had done right by him. You see, I want Finn to be thought of as the boy who lived. A three dimensional boy who Ran Jumped Bounced Danced Sang Loved Smiled and Rode. In my own way, it is a means of keeping Finn alive.

Then the blanket. I am not sure why exactly, but that blanket hammered me. A tribute to me from the Sears in Fredericton as the Rider they chose to adopt. Signed by the National Riders. They told me that they had followed my blog and read it to the staff in the morning. It wasn’t so much the tribute itself, it was what it represented to me. It meant that Finn had come alive to others. That he was a real boy to others. I will treasure that blanket always. Thank you Sears Fredericton, more than you can know. It is not very often that I am too overwhelmed to speak. This was one of those times.

And next, quietly, on stage left came Cadance. A special bear who crossed the Country with Team One. Quietly gifted to me. Pregnant with meaning for all the same reasons as the blanket.

Cadance and the blanket were worth riding for. All day and all night.

Run Jump Bounce Dance Sing Love Smile and Ride

On the road again

On the way to the airport for my own Coast to Coast flight. Really looking forward to doing the last leg, but knowing that the National Riders will be on day 22 when I jump back in tomorrow, feels a lot like cheating.

That being said really looking forward to the spin. Particularly looking forward to getting a chance to ride with and physically meet Len.

Dance-Mantra Emails Part V

Dance s not nearly as complicated as bounce.  Dance is about, well, dancing.  Dancing like nobody’s watching.

Dance is a Christmas picture that hangs in our kitchen year round.  

Dance was taken in December 2007.  Shortly before Christmas and six or seven weeks after we returned from Boston. 

Like most of the pictures, Dance requires a bit of context. 

We found out in early December 2007 that both of Finn’s kidneys were swollen and badly infected.  To remedy the problem, three procedures were required, each under a general anesthetic to put stents in each of Finn’s ureters.  Finn was NPO (no food no water) for four days as a result of these procedures.  Three days because of the procedures and one extra day because one of the procedures was cancelled at the last minute due to another emergency.

Dance was taken during that time.  Specifically Dance was taken the day after Finn arrived home from the double nephrostomy procedures where drainage tubes were inserted through Finn’s back into each of his kidneys.  Because of the double nephrostomies, Finn had three pee bags at the time.  One pee bag drained from Finn’s left kidney.  One pee bag drained from Finn’s right kidney.  The final pee bag drained from Finn’s bladder.  While not a Finn record for bags, it was a fair amount to tote around.

Which brings us to Dance.  Finn loved Mary Had A Baby by Bruce Cockburn.  He loved shaking the maracas as he danced, sang and jumped up and down.  

Take a look at the picture.  Long skinny legs balanced on toes getting ready for another jump.  Two pee bags visible.  One out of sight behind Finn’s back.  Maraca in the left hand.  A boy completely and utterly in the moment.  A boy dancing.  A beautiful thing. 

So what is Dance?  Dance is about that moment.  Dance is about who cares that I have three pee bags.  Dance is about who cares that I had my chemo 12 days ago and am about to go into low counts.  Dance is about who cares that these doctors keep knocking me out and giving me a new pee bag every time I wake up.  Dance is about who cares that I have spent most of this month in or at the hospital.  Dance is all about the moment.  Bruce Cockburn is on, he’s playing a catchy song, I have my maracas and damn it I’m going to dance.  Seize the moment for no other reason than the mood hits you.  And dance like there’s no tomorrow, because sometimes, as sad and heartbreaking as it is, there just isn’t.

And Team Finn.  Well Team Finn has been known to dance.  Lisa leading Sarah, Baird and Ayva in a rousing rendition of YMCA.  Will giving us his best mashed potatoes.  Blayne doing something, I’m not sure what.  Living in the moment and laughing a lifetime.  For those of you new to this, Team Finn certainly likes to (I won’t say can) dance.  

So if you have a moment the upcoming holiday season, throw on Mary Had A Baby, grab a maraca and dance.  And while you are standing on your tippy toes, maraca in hand, take a moment to think about how much a three year old can teach us about how to live and how to Ride.

Jump, Bounce, Run, Dance , Sing, Smile, Love and Ride 

Finn’s Courage Beads

I expect most of you have seen Courage Beads by now.  Some call them Bravery Beads, but they amount to the same thing.  Every time a child is treated, they receive a bead.  A marker of the journey.

We diligently collected Finn’s Courage Beads for him.  Not so much as a marker of what he went through, but how he went through it.  How while attached to an IV pole delivering poisons into his system Finn would leap from the top of the couch in the Oncology Clinic.  How he would challenge his pole watchers by scooting vigorously and quickly through the maze of hospital corridors leaving the unitiated breathless as they tried to follow Finn’s weaving and bobbing on the little hospital cars available to him.

We collected the beads with the idea of using them to tell Finn his own story.  The story of a child, a boy.  We never got that chance.

Now we use those beads to tell a different story.  A story of the need for change.  A story of hope.  A story of the need for funds.

Finn’s string of Courage Beads is long.  Impossibly long.  Hundreds of them of all shapes and sizes.  The length routinely shocks people.   Hidden in that length of beads are lots of stories.

Take the black beads for example.  Black beads for pokes.  One bead for every poke.  During the initial part of Finn’s treatment, Sam or I would have to give Finn a needle for ten nights in a row following his big chemo.  The process was awful.  Finn knew it was coming and knew it hurt.  Baird would try to comfort Finn by rubbing Finn’s back while Sam or I (usually with the help of Gloria) would immobilize Finn so that the other of us could inject the needle.  Sarah would almost explode with the tension.  And the next night we would start all over again.  For ten nights in a row.

Then we got to Boston.  And we learned of a newer longer lasting white blood cell booster.  One needle.  One poke.  One bead.  A small difference in the big scheme of things.  A huge difference to one family.  Big enough that we fought to make sure that one needle did not turn back into ten when we got back to B.C.  And we were successful.

So the way I see it, if all this riding can turn ten beads into one, it is worth it.  If all this riding can turn one horrific experience into a manageable one, it is worth it.  

And then there are all the beads Finn earned in Spokane, Washington in July 2008.   Sam and I didn’t know it at the time, but in July 2008 Finn was dying.  All we knew is that Finn was in pain and that the tumours were growing.  The pain was obvious in Finn’s movements and demeanour.  The tumours?  Well we could see them.  See them growing.  Something I would never wish on anyone.

So we asked questions.  Questions not designed to elicit a cure, but to get some help.  And some very special medical professionals listened.  They didn’t have to, but they did.  And that led to Spokane and to a treatment not available in Canada.  An eight hour one way drive with Sam and Finn lying in the back of the van because Finn couldn’t sit anymore.  

And two days later we were driving back.  Driving back with a bunch more beads on Finn’s string.

And out of all of that, we got a month.  A month of magic.  A month of moon walks.  A month where Finn ran again and Sarah ran to tell everyone that Finn was running.  A month of brothers being best friends, if only for a little while.  A month of Backyardigans and impromptu Backyardigans Ball.  A month where Finn tried to bounce and did a little bit.  A month where Sam and Finn got to dance to Abba in our kitchen.

And if all this riding buys someone that kind of month, I would ride forever and ever.

There is also another way to look at Finn’s Courage Beads.  Another way to think about them.  To turn them around.  Those beads kept Finn alive.  Not for long enough, but they did allow him to live.  Without those beads we don’t get Run Jump Bounce Dance Sing Love Smile and Ride.  Without those beads, Finn dies early in 2007, not late in 2008.

Finn deserved more.  We deserved more.  But that’s something.  More importantly, this riding, this fundraising will change that for others.

So keep riding, and while you are at it take some time to Run Jump Bounce Dance Sing Love and Smile.