Fireflies West Ride 2012: Why it matters

It’s been almost seven years now since my sister was diagnosed with leukemia, and five since her life saving bone marrow transplant.  If life were like a movie… Lea would have courageously “beaten” leukemia by now, or in some heroic way, succumbed to the disease.  But real life just isn’t that orderly.  Real life isn’t that neat.  Real life after leukemia is filled with nuances and complexities that are equal parts science fiction, soap opera and mind numbing, time consuming, energy sucking, boring routine.

The photo above is a glimpse of real life: my life.  The photo above is a picture of our family whiteboard back in Maine.  It hangs on a wall in our kitchen and we use it to keep track of things… everything from washing our dog and meeting up for a dinner date, to short, sappy love notes to one another.  You may have something similar in your home.  But what you probably don’t have… and what I hope you’ll never have, is a dissection of a medical term that’s posted because you need to understand what kind of new treatment your loved one is about to endure.  Again.

Tomorrow I begin another bike ride down the coast of California with the hope that our actions, our efforts and your donations spare another family the suffering that comes with learning and living the words and acronyms that become the secret language of cancer survivors.  Tomorrow, I join my team, known as The Fireflies in support of cancer survivors and the critical research that’s needed to sustain them.  It’s a fundraising ride, and 100% of the donations go DIRECTLY to The City of Hope hospital to benefit their leukemia research.

But tomorrow is also a very special day for our family, because for the first time in 3 years… my sister is headed to the hospital instead of our send off breakfast.  Lea’s not headed to the hospital for a dramatic surgery or really anything that would grab Facebook headlines… but she’s starting a new treatment called ECP (extracorporeal photopheresis) which is one part science fiction awesomeness, and another part hardship, disruption and suffering.

ECP is a treatment that for simplicity sake just filters “bad” cells from her blood; treats/separates them with chemicals and light… and then puts the treated blood back in the body.  The suffering bit comes when you realize that each treatment lasts for 4 hours, and my sister needs 2-3 treatments per week for anywhere from 2-10 YEARS.  Add in potential side effects, the cost of driving into the hospital, the time spent missing out on her family’s life, the 7 year journey she’s already endured… and you begin to realize that I am both grateful and hateful of this treatment.

But the GREAT news is that WE CAN HELP.  We can help because hospitals truly need additional equipment, additional research, and at the core of all of this… they need additional funding.  As an example: there are new ECP machines that exist that can treat my sister in less than half the time… but there are none available in the greater San Francisco area.  Newer, faster machines would give her a minimum of 120 hours of her life back every year.  Hours that could be better spent playing with her son, enjoying her husband, sorting through the mountain of medical bills or just resting.

So money helps.  That’s a little blunt, but it’s the truth.  Additional hospital funding would mean that my sister could spare a few hours to see me off as I begin my ride… but again, that’s just not real life for us.  Which is why I continue to ride.  Not just for my sister, but for all survivors seeking treatment everywhere.  Together we can make a difference, and this year… YOU have multiple ways to help:

1.)  Donate!

2.)  Come to the send off breakfast (info below), and PLEASE PLEASE PLEASE register for the bone marrow registry.  If you’re anywhere near downtown San Francisco tomorrow… please come out and support us.  Have some free coffee, bring a dozen friends, swab your cheek with a Q-tip, and give me a hug as I leave.  Please spread the word San Francisco.  Thousands are dying every year waiting for a match… and bone marrow donation can be as easy as donating blood.  It’s not like donating a kidney yo!  More information here (or tweet me @brianwedge or email me with any questions).  You’ll be a hero.  Be the match.  Someone needs you!  I hope to see the San Francisco community in force tomorrow!

3.)  Finally, Los Angeles folks can join us for the last day of our ride from Ventura to LA.  Cost is $25 donation to City of Hope.  For a supported ride, that’s just awesome.  See fireflieswest.com for full info.  If you’re really hip, you can also track us / learn more about the ride on our new iPhone app too!

 

 

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  • September 13, 2012 - 3:27 pm

    Nick Livesey - Deeply touching. Ride safe. Ride strong. Fireflies Forever XReplyCancel

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