Friday, July 26, 2013

The Heart of the Matter

We all have our own reasons for running - some days it is forced, some days it is for health, some days it is simply just for fun.  Every runner, from beginner to elite, experiences these days, in a sort of random, unpredictable fashion.

This past Tuesday, I was reminded of one of the biggest reasons I run - to help fund the research that will one day find a cure for cancer.  I do almost every endurance event with Team In Training, a large fundraising section of the Leukemia & Lymphoma Society.  

2013 marks the 25th anniversary of Team In Training.  This week, I was invited by our chapter to partake in a celebration via a catamaran river cruise.  I very rarely miss TNT related outings, and I was very much looking forward to being a part of this event.  There were light appetizers and a cash bar, and we socialized and watched the sun begin to set on the deck before heading inside for the presentation.


It was a beautiful evening in Tampa!

Our guest speaker was Patrick Duffy, a fellow Goofy participant.  I had never before met Patrick, and I did not know his story:  


"Patrick Duffey has been an LLS volunteer and TNT Alumni for a couple years now.  His journey with LLS began about 9 years ago.  As he says, “it was the worst hurricane season on record (Florida was hit with 4 hurricanes; Charley, Frances, Ivan and Jeanne and a tropical storm, Bonnie, was thrown in just for good measure).”  They prepped and got ready for the storm to hit, but little did they know they had something else coming.

Their youngest daughter, Elli, only 19 months old at the time, was diagnosed with leukemia. 

She had been sick for a few days, but the typical childhood fevers were not going away.  In addition, they noticed the deep bruises all over her legs and back. His wife Andrea took Elli to their pediatrician and within a couple hours they were on their way to All Children’s with a diagnosis of leukemia.   He says: “I will never forget that 24 hour period. Some of the specific events have blurred with time but the feelings associated with that day come flooding back; the fear, the uncertainty, the desperation, they are as palpable to me now as they were 8 years ago.”

After the initial shock of the diagnosis, he started doing some research and found through LLS.org that there are multiple types of leukemia and that the most common in children is Acute Lymphoblastic Leukemia (ALL). Patrick said: “I found that ALL also had what looked like a good survival rate, I remember it being around 85% or so. Acute Myeloid Leukemia (AML) was much less common and, it seemed, much more deadly, with survival rates somewhere in the 40-50% range.”

He brought the information he collected to the hospital with him the next day so he could show it to Andrea.  After all the testing, they found that in fact it was not the diagnosis he was hoping for; Elli was diagnosed with AML instead of ALL.  Patrick said, “I was hopeful that it was "the good type" of leukemia; the kind we could beat. It sounds absurd to even say that, to describe ALL, or any cancer as "the good one" but I was holding out hope because the alternative seemed too much to bear. I guess I was in denial about AML; it's not going to be that one, I told myself, it's so rare, there's no way it will be AML. I didn't even bring in those print-outs, my bundle of papers was all about ALL.”

After the diagnosis, Elli spent the next several weeks in and out the ICU.  In October, however, their prayers had been answered.  They had learned that big sister Abby was a match for a bone-marrow transplant. This dramatically improved Elli's long-term prognosis and gave them all hope.

By January, Elli was readmitted to begin preparations for the bone-marrow transplant. She had quite a bit of fight in her as she had to endure the most severe forms of chemo in order to make her body ready to receive the transplant.

In the "adding insult to injury" as Patrick says, they then learned that Elli had injured her eye, likely due to a fall right before she was diagnosis and resulting in loss of most of her vision in her right eye. As they examined her, they noticed a dark mass in her left eye. Concerned that the leukemia had spread, they began radiation treatment on both eyes.

Transplant day arrived on February 4th. Brave Abby, only 4 years old at the time, was admitted for the bone marrow harvest.  According to Patrick, she called her sister and said "I'm coming to help you tomorrow, Elli"

The procedure went well, and a little more than six weeks later, Elli was able to go home."

It is hard to truly bring justice to his story as hearing it from Patrick directly brings it home.  It really is such an inspirational story of survivorship, and Elli is still in remission and healthy as can be.  

I held it together pretty well this time . . . until I saw a photo of Elli and Abby touching hands through the glass window of a hospital door, preparing for the transplant.  The love that this family has for each other, through all of the tough times, is truly heartwarming.  

One of my deepest fears is that I will have a child that will be diagnosed with cancer.  I pray every single day that this will not happen, but if it does, I pray for strength and faith to persevere.  I know that it is out of my direct control.  

But there IS something I can do.

I can continue to raise money.  I can continue to put myself out there, to talk about the cause, to volunteer at events, to inspire others to get involved, to run, swim, bike - whatever it takes.  I am willing to do all of this, not for my own personal gain, but to offer hope and survival to others.  

This November marks my 15th year of remission from non-Hodgkins Lymphoma.  Because of Bruce Cleland, the founder of what is Team In Training, and countless others who have had to bury children, brothers, sisters, parents, aunts, uncles, cousins, friends, pets, who raised millions of dollars to fund research, I survived.  

The money we raise today will offer that same opportunity to those diagnosed 5 or 10 years from now.  So while it may seem as though it is difficult to part with $10, $25, $100 - think of the future.  Think of the legacy we are building to leave for our families, friends, and everyone we don't even know.   Every dollar counts - please consider making a donation!  As I train through the hot Florida summer for the Marine Corps Marathon, I keep true to the mission.  My goal is to raise $1600 by July 31st (half of my final goal) - I am only $752 from reaching this milestone.  Many, many thanks in advance.



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