Last year when I signed up to run a marathon with Team in Training, I had just discovered that my 12 year-old brother Jonathan had been diagnosed with acute lymphoblastic leukemia. At the time, it was the most devastating day of my and my family’s life, and I was determined to do something to contribute to the fight against leukemia. Jonathan loved running cross country, and I felt that helping raise funds for the Leukemia & Lymphoma Society while training to run my first distance event was the perfect way to honor my brother and what he was going through. More than that, running had never been something I was particularly fond of, and I even used to say that I couldn’t imagine ever running a marathon or even a half-marathon. But knowing my brother would have potentially years of difficult chemo and unpleasant treatments made it easy for me to decide that if he could do that, I could certainly do this. I also wanted to do something that would teach me how to be as strong as I needed to be emotionally and mentally for the challenges that lay ahead, and would help me understand how to endure when you feel like you simply cannot.
I never imagined that in one year’s time I would be preparing to run another marathon, but this time, to honor the memory of the one person who has touched my life in the most profound way, who has taught me the most, and who was without doubt the best person I’ve ever known: Jonathan. I will run the Savannah Rock 'n Roll Marathon on November 5, 2011, in his name.
As I said last year, and as anyone who had the privilege of knowing Jonathan is already aware, Jonathan was a truly special kid. He was talented at the piano and clarinet, both of which he played passionately. He loved swimming in our pool and running cross country. My parents can tell you—and my brother and I freely admit—he was always the best-behaved, kindest, and most easygoing of us siblings.
He was also always the type of child who thought of others before himself. I remember that on his 8th birthday, just a month after Hurricane Katrina devastated New Orleans and other parts of the Gulf Coast, he told my parents that he didn’t want presents for his birthday party. Instead, he asked that his friends and family donate money to aid victims of the disaster. And during his illness, he commented that although having leukemia was no picnic, many others are dealing were dealing with worse problems than he was. He remarked that one day he might want to be a doctor or nurse, so he could help kids that were going through what he was.
He displayed more grace and courage during his illness than I think any adult could have summoned—and his illness was merciless. He never stopped saying please and thank you, even when he was enduring the most unpleasant of treatments. He showed us all what kind of person we could be with his patience, kindness, consummate compassion, and generosity of spirit. It became clear that Jonathan was battling a strain of acute lymphoblastic leukemia that was very resistant, and that we would have to fight our absolute hardest to beat. I felt my family and I were soldiers tasked with delivering Jonathan to safety, out of the grasp of our enemy. And we all pulled together as a family and were absolutely determined to do everything in our power to beat it. One day, certainly the worst day I hope to ever have, Jonny contracted an infection his body couldn’t fight off because his immune system was so compromised, and he passed away with my parents, my brother Paul and me holding him.
If you had seen all of the doctors and nurses outside his room, tears streaming freely, you would understand the kind of impact Jonathan made on everyone at the hospital that came across his path. Nurses came in on their days off to be with us. His primary doctor, Eric Sandler, was at Yom Kippur services and came to the hospital once before Jonathan passed and once after to be with him. One pathologist told us that Jonathan made her think of the person behind each set of cells she reviewed on slides.
The reason I am running the Savannah Rock 'n Roll Marathon on November 5th with Team in Training is to help ensure fewer and fewer families have to endure what my family and I have gone through and continue to deal with. The one time Jonathan expressed dismay at the situation, he commented to my mother, “I wish this had never happened.” That is a wish that I will never be able to let go of. It is a terrible feeling to wake up every single day wishing with all your heart that something had never happened. I am reminded of a conversation in The Fellowship of the Ring, which Jonathan, my brother Paul and I watched on an annual basis together:
Frodo confides in Gandalf: “I wish the ring had never come to me. I wish none of this had happened."
Gandalf replies: “So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us."
That is the message my brother Jonathan has left with me, and that I will carry throughout my life. In his short time here, Jonathan spent every moment he had pursuing what interested him and excited him. He was never found sitting in front of the TV unless he was ‘traveling’ to another country while watching Globetrekker or the Travel Channel. The sounds of his clarinet and piano were familiar music around our house. During the summer, he was found perfecting his pencil dive in our backyard pool. Jonathan was intentional about doing what he loved, and he has helped me to embrace the time I’m given in the same way he did.
For me, part of that is helping to raise money to find a cure for blood cancers, once and for all, and to ensure that all children fighting the disease have the same advantages and access to treatment that Jonathan did. That is exactly what your donation to the Leukemia & Lymphoma Society through Team in Training will help accomplish.
Team in Training has raised more than 1 billion dollars since 1988. TNT funding even led to the development of cancer-fighting drug Gleevec, which is now being used not just for leukemia patients but also those with breast, ovarian, prostate, and brain cancers. Dr. Brian Druker, who developed the drug, has said, “The Leukemia & Lymphoma Society recognized the opportunity with Gleevec. They were willing to take a chance on our work. Unfortunately, researchers today are basically in the same position as we were a decade ago. If anything, it's even more difficult for novel research to gain federal funding. We're more reliant than ever on private non-profits like LLS.”
Just recently, The Leukemia & Lymphoma Society helped fund an investigational drug that, in combination with the drug Gleevec, stops Philadelphia-chromosome ALL, a very aggressive form of childhood leukemia.
Your donation gives children like Jonathan and families like mine the hope that they will not have to face the very worst.
Please donate in any amount that you are able. Go Team!
Team Jonathan post Nike Women's Marathon in San Francisco: Me, Paul, Cathy, Steve
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The Leukemia & Lymphoma Society® (LLS) is a global leader in the fight against cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care. The Leukemia & Lymphoma Society is a 501(c)(3) organization, and all monetary donations are tax deductible to the fullest extent allowed by tax laws. Please check with your financial advisor if you have more questions.