29 March 2012

it's a small world.

"It's a world of laughter
A world of tears
It's a world of hopes
And a world of fears
There's so much that we share
That it's time we're aware
It's a small world after all."

It was my favorite ride at Disney World growing up - It's a small world, that is. I was fortunate enough to experience this ever so popular musical boat ride on numerous occasions as a child, but was perhaps too naive to truly understand just what exactly it meant to be living in a "small world." So instead of concentrating on some underlying theme, my eyes would widen with fascination at the myriad of colors, costumes, and imagery that only Disney could create.

As I grew older, the phrase "it's a small world" became less about the whimsical Disney attraction and more of a common idiom I'd use when I encountered people in the most unsuspecting places. How many times have we each exclaimed, "Oh my goodness, I had no idea you live in this town! You know her, too?! It's such a small world!" Of course, at the ripe old age of 27, I now understand and appreciate the meaning of "it's a small world" and its universal application to international unity and world peace. Only now this phrase hits closer to home than it ever did before. It strikes fiercely within the depths of my own heart at a level that doesn't necessarily parallel world peace and it certainly surpasses the superficial unexpected encounters we have with random people we bump into at the local grocery store. As I sit here tonight, the time quickly approaching 3:00am, I reflect upon the past few months and think to myself...there’s so much we share, that it’s time we’re aware it's a small world after all.

And this is where the story of Brent begins.


At the innocent age of 12, my cousin, Brent, was diagnosed with Crohn's disease, an inflammatory disease of the intestines that may affect any part of the gastrointestinal tract, and Primary Sclerosing Cholangitis (PSC), a chronic liver disease caused by progressive inflammation and scarring of the bile ducts of the liver. With no family history of Crohn’s, there really was no rhyme or reason as to why Brent was diagnosed with an autoimmune disorder that has no cure. But in the typical Brent fashion we all knew and loved, Brent was a trooper and battled the onset of Crohn’s, not allowing it to triumph over his daily life.

Fast forward 10 years later and Brent survived more challenges and complications from his Crohn's disease and PSC than most people will face over a lifetime. And despite all of this, Brent still could not catch a break. In July of 2010, at the age of 26, Brent was diagnosed with Cholangiocarcinoma, a cancerous growth in the ducts that carries bile from the liver to the small intestine. So why does a 26 year old get diagnosed with a supremely rare cancer that typically affects those older than 65? While it's not certain, studies do show that patients with cholangiocarcinoma plus PSC seem to have a higher prevalence of Crohn's disease.

In April of 2011, I participated in a 200 mile relay to raise awareness for organ donations, as there will always be a question of whether or not fate would have changed its course if a liver had been available for Brent. At this time, Brent was defying the odds, undergoing chemotherapy in a two week on, one week off cycle, and proving to the world that nothing could stop him. And nothing did. For the 17 months following his initial diagnosis, Brent fought the good fight. And he did so with a complaint free, positive attitude that we should not only admire, but start adopting. (Writer's note: I can't remember the last time I went a day without complaining). On November 22, 2011, God chose to stop Brent's suffering, end the pain, and lift Brent's spirits to a far better place. With tears stinging the corners of my tired eyes, I can confidently say that Brent did not quit in his battle against Crohn's, PSC, and Cholangiocarcinoma. God knew a cure was not to be found and freed Brent of his struggle. A concept that has brought infinite amounts of heartache to Brent's loving girlfriend of 8 years, as well as his siblings, parents, aunts and uncles, cousins and friends.

It's been 4 months since that fateful day and not a day goes by where I don't lift my face to the stars and search for the light of my cousin shining down on the hundreds of lives he touched. It's hard not to think of how life would be different if Brent was never diagnosed with Crohn's disease. And it's nearly impossible to find a silver lining in something as tragic as the death of a loved one at such a young age. Yet, I like to think that I have.

And this is where the story of Chris begins.


I met Chris the day Brent passed away. Brent was one of Chris' closest friends and Chris was one of Brent's closest friends, both incredibly active, selfless volunteers of the Hopewell Fire Department. Within minutes, I easily discerned the palpable bond shared by these two men, which added more weight to my already heavy heart. To observe their brotherhood - like that of so many of Brent and his friends - dissolve was absolutely heartbreaking for even the toughest of hearts. Over the next week, during Brent's funeral arrangements, I became more acquainted with Chris and learned that he, too, has Crohn's disease. After four years of being misdiagnosed, Chris was finally *and* correctly diagnosed with Crohn’s disease by the doctors of UPenn in 2008 at the age of 29. Complementing the right medication, Brent was able to guide Chris through the crappiness that is Crohn’s disease (pun intended), allowing Chris to be who he is today, which is one kickass guy. I know this, because with the passing of time, Chris and I managed to stay in touch (huge shoutout to Facebook!), for which I am utterly grateful. Although Brent and I were incredibly close for the first 18 years of our lives, we naturally parted ways after high school. Having a connection with Chris, a person who knew the Brent I didn't fully know for the last 9 years brings warmth and comfort to my heart and soul.

And it just so happens that Chris introduced me to a very special little girl and her fabulous family.

When I quit my full-time job in January 2012 to go back to school for a second degree in nursing, I knew I would need some type of income (the Bank of Courtney is ummm....let’s see, how do I say this...non-existent?), so I reached out to my friends/family on what else but Facebook (seriously, if you don’t have Facebook, get on the bandwagon already!). Within minutes, Chris messaged me and said his friend, Mark Bovenizer and his wife, Amy, were in need of a babysitter for their two girls, Paige, 5, and Avery, 2. And just when this world couldn't seem smaller than it already is, Chris informed me that Avery has Crohn's. Through Brent, a Crohn's patient, I was introduced to Chris, a Crohn's patient, who was now about to introduce me to the Bovenizer's and their darling little girl, Avery, who is also a Crohn's patient. Pardon my French, but Holy Sh*t, if that's not a small world, than what is? I am an avid believer that God, the universe, or whatever higher being you choose to believe in, opens certain doors for us. What we do or don’t do with these doors is up to nobody else, but ourselves. And so it was my choice to start babysitting Paige and Avery, for my heart was absolutely positive that Avery and I were destined to meet.

I have been babysitting the Bovenizer girls for 3 months now and I am.in.love. They are, without a doubt, two of the cutest little girls I know (and no, I'm not biased. Okay, maybe a little). Quite simply, they tickle me pink. Confident, sassy, and beautiful Paige is so very protective of her younger, fearless, firecracker of a sister, Avery, now three. I don't think of babysitting the girls as a job, but rather as one hell of an awesome playdate, where I am humbled by the honesty, compassion, and imagination of two remarkable little human beings. And yet, a part of my heart is torn each time I see strong, little Avery with a tube running from her tiny back, across the soft curve of her left cheek, into her itty bitty button nose. This tube is essentially Avery's lifeline. After months of blood tests, endoscopic procedures, and doctor consultations, Avery was diagnosed with Crohn's disease. This nasogastric (NG) tube provides Avery with the formula, medication, and probiotics that are necessary for mitigating any signs of inflammation and bowel problems and keeping Avery a very happy, little girl. Although Avery is very accepting of her disease and the accompanying NG tube, I promise you there is nothing more heartbreaking and soulwrenching than consoling a toddler as you force a tube into her nose.

[paige and avery]
After I accepted the fact that I would not be able to participate in The Relay this spring, I started searching for another run...another cause. So when my mom handed me a brochure for Team Challenge, the Crohn’s & Colitis Foundation’s endurance training and fundraising program, I obviously knew that the universe was knocking right on my front door (Have I mentioned how much I love when the universe opens a new door for me?!). Through Team Challenge, individuals can run or walk 13.1 miles or train for a triathlon or cycling event while helping to find a cure for Crohn’s disease and ulcerative colitis, two chronic and often debilitating digestive diseases that impact 1.4 million Americans, three of which are near and dear to my heart. After a few e-mail exchanges, I was on my way to signing up for my first half marathon (woot. woot!).

But, first, just for good measure, apparently I needed to see just how very small this world is.

And this is where the story of Andre begins.

[andre and shane]
I was making my way toward Starbucks in a local mall to meet with the Team Challenge Endurance Manager and heard someone yell out my name. I spun on my heals to see two of my former Ernst & Young co-workers, Jim and Andre, headed in my direction. It's amazing how deceiving time can be. It had been quite awhile since I had seen these guys, but it was as though no time had lapsed at all. It was as though we were all back at Ernst and Young, joking around, enjoying our lunch breaks together during the good ole days. As I excitedly told them I was about to sign up for my first half marathon, something clicked in my brain and I recalled that Andre once told me that he had Crohn’s. Andre, now 34, was diagnosed at the age of 21. Happily married, him and wife are getting ready to celebrate the first birthday of their firstborn (I have not met their baby, Shane, yet, but based on Facebook pictures alone, I seriously want to gobble him up, he’s so stinkin’ cute!). And, just like Brent had to, and just like Chris and Avery have to, Crohn’s is a demon lurking in the background that Andre will always have to deal with, as, sadly, it will never go away.

As we parted ways, agreeing to meet up for lunch in the very near future, I closed my eyes and thought of Brent. My heart will always have a scar from the void left by his passing, but it now has the footprints of three new people. Three incredibly awesome, strong, empowering friends who don't let the harsh realities of Crohn's disease define their lives, just like Brent didn't. I opened my eyes and made my way to Starbucks, thinking to myself...this really is a world of shared hopes and shared fears. It is *such* a small world.

I would like to thank each and every one of you who took the time to read my story. Really, Brent's, Chris', Avery's and Andre's story. In an effort to celebrate each of these individuals, I am participating in my first half marathon on June 2nd, in Loudoun County, Virginia. It is my goal to raise over $3,000 to support research funding, educational material for newly diagnosed patients, and "space safe" for pediatric patients. I completely understand that times are still tough (hello, I am a full-time student, with full-time bills, and *no* full-time job), but please know that every penny counts. Even a $1 donation helps make a difference.

Please visit my fundraising site @
for more information and how to donate. From the bottom of my heart, the heart of every person diagnosed with Crohn's disease, and from their loved ones, I thank you. My heart is full of gratitude for you.

With infinite amounts of love in a very small world,