Faith, hope, love. And an organ.

My mom's sister has three children who are approximately the same age as my siblings and me. Scott and Kyle are 28. Brent and I are 26. Andrea is 24. Ashley is 23. We grew up less than a mile apart, attended the same school district, waited at the same bus stop, played sports together, practically lived at each other's houses, built forts together in our grandparent's backyard summer after summer, vacationed together, fought together, laughed together, and cried together. In a word, we were inseparable. 

As we grew older, the elasticity of our close knit friendship was tested, and often times strain was placed on each of our relationships. But through it all, we have always been there for each other - when our grandmother passed away from lung cancer, when our grandfather passed away five months later from a broken heart amidst an array of medical complications, when we each graduated from high school, when Scott married Christine, when Kyle married Lauren. Happy or sad, good or bad, we have been there for each other...

So when 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) at the innocent age of 12, we were there for him. Being diagnosed with two diseases - one which has no cure - didn't stop Brent. So for the next few years, Brent was a "normal" teenager, doing all of the things the average teenager does. What most people didn't know was that Brent was not a "normal" teenager. Brent had to wear a spleen guard around his stomach to protect his spleen. Which meant that Brent couldn't play sports like most teens can. Instead of sleeping over at his buddies, he sometimes slept over at CHOP (Children's Hospital of Philadelphia). Instead of carrying a cell phone, Brent had to tuck away a pager in his backpack - a pager that would beep if a liver became available.  So while most of us were dying for a text message from the person we're crushing on, Brent was waiting for a page. Imagine that. You're 15. Your liver is essentially broken. You're trying to maintain a "normal" teenage life. Oh and you're kinda, sorta hoping that today is the day you're given the gift of life. Only that call never happened for Brent. 

At the age of 16, doctors attempted to place a stent in Brent's body, to hold his bile ducts open. Unfortunately, the ducts were clogged and he almost died from the procedure. Being the fighter he is, Brent fought back and survived. Eventually, through some miraculous combination of time and a new, yet risky experimental medication, Brent's MELD (Model for End Stage Liver Disease) scores stabilized. This stabilization, coupled with Brent's improved condition were grounds for taking Brent off of the transplant list. Finally, some resemblance of a "normal" life was bestowed upon Brent. A gift most of us don't even realize we've been given. A gift we take for granted day after day, month after month, year after year. A gift that often slips my mind when I find myself carrying on unnecessarily about the trials and tribulations of my single life.


And through all of this, the friendship between the six of us carried on. Crohn's Disease was put on the backburner and life went on...
 
But as they say (and don't ask me who "they" is), all good things come to an end. It was the day of my brother's wedding. I had just corralled the troops, making sure to get a picture of the six of us - Scott, Kyle, Brent, Andrea, Ashley, and yours truly. No family event is ever complete until someone snaps a pic of the original six (as I secretly call us). I was talking to Brent, probably trying to drag him onto the dance floor, when he told me in confidence that him and his incredibly supportive girlfriend had to leave the reception. I was very perturbed, no one can leave a wedding early! Much to my dismay, Brent was not simply leaving the reception. Brent and his girlfriend were going to the hospital. He had been fighting a pain in his lower back for a few weeks, but never said a word about it, so that everyone could enjoy the wedding and not worry about him. I can't imagine the last time I was that selfless. Discreetly, Brent checked himself into the ER, while the rest of evening carried on. And as amazing as the reception was, I couldn't erase the conversation I had with Brent, and then with Andrea about his condition. The uncertainty of the unknown was lingering in the back of our minds. But there was nothing any of us could do except wait...

Less than 24 hours later, the doctors delivered the news that no one - not even your worst enemy - wants to hear. Brent most likely had cancer. That devastating and painstakingly overwhelming disease that has the innate ability to bring even the toughest person to tears instantly. As if Crohn's and PSC weren't enough, cancer had to be thrown on top. The icing on top of an incredibly poisonous cake. 


Within a week, it was confirmed that Brent had cholangiocarcinoma. Cancer of the bile ducts leading to the liver. A cancer with no cure. A cancer with no promising future. Teams of healthcare professionals rushed to the scene of a mother's worst nightmare come true. There was constant debate about the best course of action for Brent. Only there wasn't one. Countless clinical trials exist, but Brent's tumors were so large that he was denied without consideration. And while a liver transplant wouldn't guarantee a cure, it could have been an option if only there were enough livers available. The Mayo Clinic couldn't risk "wasting a liver" on a patient like Brent, whose body may reject it, when it could be used for someone else. Basically, if Brent's body accepted a liver transplant, the chance of the cancer finding its way back to Brent was too high. So for the second time Brent was removed from the transplant list.


Fast forward 9 months later and Brent is doing remarkably well. He is undergoing chemotherapy in a two weeks on, one week off cycle and is back at work. In a word, he is a trooper. He is defying the odds and moving forward with his life. And let me tell you, his life is far from easy. But he's doing it in the typical Brent fashion we all know and love.

Despite this, I can't help but wonder if things would be different if a liver had been available for Brent. There's also the possibility that if Brent can fight off the cancer, he could be placed back on the transplant list. Which brings me to the reason for this post. In one month I will be participating in "The Relay" - California's longest party, stretching from Calistoga to Santa Cruz. Hundreds of teams will run to support "Organs 'R' Us" - a nonprofit organization promoting organ donation through walking and running. Each team has 12 participants, running 3 legs each (36 total), totaling 199 miles. My kickass team is the 24 Bouncing Boobs, and yes, my ta ta's may be small, but they still bounce ;). We will begin the race on a Saturday morning and continue running, through the night, until the following afternoon. We will sleep for only an hour or two. We will eat nothing but granola bars and Gatorade. We will climb the Santa Cruz mountains, run along the Pacific Coast, and cross the Golden Gate Bridge at midnight. And we will do all of this as our small part to raise awareness for organ donations in the hopes that the 100,000 people in America on the transplant list will receive the organ they so desperately need. We will run for the gift of life.

And that's where you come into play. Yes - you - my loyal audience. As a member of the 24 Bouncing Boobs, we are collecting money to raise awareness for organ donations (please see the link below for our website). I fully understand that America is *still* in a recession (I am reminded of this on a daily basis when I look at my bank account), so if you cannot donate, I *completely* understand. But just because you cannot donate, doesn't mean you can't help! Read on! Think about your position on organ donation. I know this can be a touchy subject for varied reasons - cultural beliefs, religious backgrounds, personal convictions, etc. But please, understand this: Regardless of what you believe in, when it is your time to leave this precious world, your organs can give another person a chance at life. Your organs - your liver, your kidney, your eyes, your heart - have the potential to give someone a life that they may not otherwise have. Or they can be buried. Left in ground to rot and taunt the 20,000 plus people who die each year because there simply aren't enough organs available. Your organs are not part of your soul or your spirit. When you die, your organs don't have to. Your organs have a choice. They can die with you or they can provide life. But only you can dictate that choice. It is my hope and my wish, that my story - Brent's story - is the inspiration you need to become an organ donor. The best part is that it is so unbelievably easy to do! You just need to make a trip to your DMV, check off a box that you want to be an organ donor, ask them to reprint your driver's license and Voila! You are now an organ donor. 


You never know whose life you may save.

Oh and as for the original six. We still have each other's backs. Always have and always will. But we need your help. I want Brent to be in my wedding party one day. I want to be able to snap a pic of the Original Six when we're all grandparents. I want the story of our close knit childhood to be passed down from generation to generation. And I want Brent to be part of that story until the very end. 


I know this was an incredibly long post, but Brent's story is important not only to me, but to Brent, our family, Brent's friends, and the thousands of people waiting for their gift. Please take a look at any of the below links for more info. And, from the very bottom of my heart, thank you *so* much for taking the time to read this.


For Info about Cali's longest party, please visit: http://www.therelay.com/re_new.htm


For info about "Organs 'R' Us," please visit: http://www.therelay.com/organs/indexmain.html


To see the "24 Bouncing Boobs" homepage, please visit: https://sites.google.com/site/team24bb/
Please e-mail/call/text me if you have *any* questions about donating.


For info about where Brent is being treated, please visit: http://www.pennmedicine.org/hup/ ; http://www.pennmedicine.org/perelman/ ; http://www.penncancer.org/ ; http://www.chop.edu/