Day 3…This is for you Ava Olson!

Day 3 - Cal’s Angels W.A.R. on Wheels

Today we rode for Ava Olson. Ava suffered from  an incurable form of cancer called Diffuse Intrinsic Pontine Glioma (DIPG) which is an aggressive type of childhood cancer that forms in the brainstem. They are very rare and almost always occur in the pediatric population. Ava died 6 months and 10 days after her diagnosis. 

I had the pleasure of riding with Ken Olson and the rest of the Cal’s Angels crew today. Ken told us that Ava loved “Do Rad Shit” and he wore a “DRS” hat today in her memory so when I was side by side with Ken as we descended a very steep road at over 45 miles an hour battling serious crosswinds that almost blew us off the bike and heavy traffic, Ken turns to me and says….”Ava would have loved this!”

Today’s ride was special because Ken was riding with us. It was a challenging ride at times with long descents. For the most part drivers were courteous, but we got coal rolled by some jackass, and he absolutely covered us in black smoke for about 20 seconds…clearly that guy needs a hug and a purpose in life!

We have logged 253 miles and nearly 24,000 feet of elevation over the last three days. Everyone’s legs are sore, their hearts are heavy and yet we are determined

After riding with Ken all day I asked him to share a few words so that those that don’t know Ava could get a sense for the kind of kid she was…

At Ava’s grave site Ken Olson shared this…

To me courage is summed up best in the Teddy Roosevelts speech “Citizenship in a republic” also known as the “The man in the arena” speech.  

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

In the arena of these weeks there are going to be great joys of personal triumph, there will be feelings of great pleasure, heartwarming moments of camaraderie, satisfaction for doing something for others and sense of accomplishment for being part of something bigger than yourself.  

There will also be moments that are Beautifully Tragic.  There will be deep emotions of sadness and frustration, there will be thoughts of doubt and fear.  The thought: “It’s not supposed to be this way… may come to mind with every reminder of loss and frustration with our healthcare system that is allowing our children to die safely rather than push the needle with every resource we can to drive better patient outcomes.  

Empathy climbing into the deep dark hole and walking side by side with someone else through it, empathy is making a difference in honor and memory. The grief and challenges of pediatric cancer is a dark, scary, life changing hole, some more challenging than others, some with graver circumstances, some with bigger mountains than others, but a dark, scary and very challenging hole all the same.  Your presence here is a true sign of empathy for us on the pediatric cancer journey.  

Ava was our fun-loving, sweet, smart and spunky 9-year-old girl who lit up every room she entered. She was a loving daughter, sister, granddaughter, niece, cousin, best friend and warm-hearted child of God. Ava loved adventure, everything from boating, tubing, jet skiing, zip lining, horseback riding, surfing, swimming, indoor skydiving and soccer. In fact, Ava inspired our family saying, “You know it’s going to be fun if you have to sign a waiver.” Ava would have loved the thought of 7 centuries in seven days, and Anna she loves that you hunted down everyone’s waiver! 

Together, we all enjoyed University of Michigan Football, the Black Hawks and our beloved Cubs. She lived to have fun and enjoy every moment.

The day after the Cub’s won the World Series all our lives changed forever. November 3, 2016 our Ava was diagnosed DIPG. The most deadly form of pediatric brain cancer.  We were not given a clear path to treatment, because there isn’t one.  DIPG is 100% fatal.  At diagnosis we were told go home and make memories. This must change and research is that answer to making this change.  We spanned the globe and exhausted every resource we had to give her a chance at survival.  Ava endured 2 neurosurgeries, one that was nine hours long, 6 MRI scans, one CT scan, 30 sessions of radiation, two flights to and from London (because the treatment we choose was not offered here, nor covered by insurance), 38 hours of infusions, 1000 doses of medications and supplements, physical therapy sessions, poking and prodding from doctors and nurses, 1000’s of questions, endless stethoscopes, thermometers, blood pressure cuffs, light shining in pupils, monitors beeping and a progressive loss of the use of her body. Ava had such dignity and grace through this journey. She accepted this as God’s plan, and never asked “why me”? She stepped up like a Warrior and endured this entire process, while consistently claiming to all of us, “there is nothing wrong, I’m fine.” In true Ava fashion, speaking her mind when she needed to, not in complaint but in matter of fact acceptance while walking to Lurie Childrens Hosipital she says well this is the place that crushes hope and shattered dreams.  For her, that was the truth… this is not ok and needs to change.  That is why we are here.  

Throughout the last two months of her journey, Ava persisted the thought; “I want to go home.” Well, sweet Ava you are home and we all know that you are better than “fine” now.  You were a brave Warrior and accepted the challenge with true grace and determination.  Ava passed away from DIPG on May 13, 2017.  Her spirt and enduring soul lives on through our and your commitment to research and helping others on the cancer journey.  

Max, Ava’s brother had a very special relationship with her from day one and especially during the diagnosis. He has been a compassionate, loving and Uber supportive brother.  He completely understood how he could best support his sister and his parents, he showed she was the priority and held his head high resting on his principles of faith, fitness, and family to stay positive and centered.  We sometimes loose sight how these diagnosis and the journey affect the siblings.  He has sacrificed endlessly, moreover he gave his heart and continues to honor her in all his adventures.  

My family, all cancer families thank you for doing this ride, riders and support alike. Glen and Debra what and amazing example of generosity, empathy and courage you show. We thank you all for your fundraising efforts, for your emotional encouragement and support. We applaud your mental and physical endurance.  Every moment of this ride is a sign of empathy, courage, and faith.  Knowing you are out here, in the arena, breeds hope, hope for an end to pediatric cancer and in the short term better outcomes. You breed hope that our children are remembered and that their journeys have meaning to others.  You being here enduring todays ride and making this stop, is a true sign of love and is the great expression of human compassion.  Ava is smiling down, she loves this, we love this, and our hope is that you love this. My hope in sharing this very sacred and vulnerable moment with each of you is that this touches your soul to love a bit deeper, be a bit more gracious with each other and may your WHY be strengthened, may your grit be enhanced and may your resolve be strengthened all while fueling your motivation to positively influence the future of pediatric cancer. 

You are an inspiration, you are doing great work and Max, Jodi and I want you to know how appreciative we are and while it is not enough, it the closest we have:  we thank you for daring greatly!