The Kickoff was our first opportunity to meet our honored teammate, someone with firsthand experience with leukemia, lymphoma, myeloma, or Hodgkin’s disease. My honored teammate, Tom Coughlin, wrote this letter about his experiences:
Dear Teammates:
My name is Tom Coughlin. I first learned about the Team in Training (TNT) program when I participated in the 2003 Mardi Gras Marathon in New Orleans. On the day of my marathon, I was surrounded by a sea of purple shirts walking or running the race. Participants like you told me of their commitment to the TNT program. One couple I met had been participating in TNT for several years. At the time I had no personal experience with leukemia or lymphoma, but was impressed with the commitment of the TNT participants, with the sheer numbers, and the fact that they came from all around the country!
My personal interest in leukemia changed in the next several months. While training for the Marine Corps Marathon in July of 2003 I began to feel flu-like symptoms. I learned in September that I had developed Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia. This is a very rare and particularly aggressive disease with a high relapse rate. Historically, there was a 90 percent mortality rate within five years of diagnosis. Most patients died within two years.
I spent September to November 2003 undergoing chemotherapy at Fairfax Hospital. My first chemotherapy regimen did not work. Once my counts recovered in mid-October, I went through a second round of chemotherapy - this time supplemented by a new drug - Gleevec. For the first time in several months, I was not anemic and began to feel better. My doctors told me that Gleevec would keep my disease in remission for a couple of years at most. Eventually, I would relapse without a bone marrow transplant.
Although a regular transplant was out of the question because of my age (at age 58 I was told that the mortality risks were 50-60%) my doctors recommended that I pursue an experimental transplant protocol using one of my brothers as a partially matched donor. They could offer no assurance that the experimental procedure would work, nor did they have sufficient data to predict the possible outcomes from such a treatment because it was too new. I had tentatively agreed to undergo the experimental procedure, but had no confidence that it would work. Unfortunately, neither did my doctors.
In late January 2004, two things happened that changed the course of my treatment. First, a nurse at Fairfax Hospital convinced me to obtain a second opinion from Greg Orloff, co-head of transplants at Fairfax Hospital. At her recommendation, I also placed a call to The Leukemia & Lymphoma Society. The very next day, Sarah Singer from the Society was sitting in my hospital room offering all sorts of recommendations and advice. I was floored that she had gotten my voice mail and come to see me so quickly!
As a direct result of these interactions, I optained two "second opinions" from nationally known transplant doctors and spoke by telephone with several others. These consultations confirmed that there was, indeed, a realistic treatment protocol that had a better than 50 percent chance of success. I abandoned the experimental treatment protocol and was transplanted in May 2004 at the Seattle Cancer Care Alliance using their newly developed "mini-transplant" procedure for unrelated donors. The "mini-mut" (matched unrelated transplant) procedure was developed in Seattle about five years ago, specifically for patients like me who are too old to undergo a regular transplant. I am now more than 18 months post-transplant and am disease free. Although I am not back to normal and will continue to be monitored for the next several years, I have every confidence that I will beat this disease.
Following my diagnosis, two friends of my daughters ran marathons through TNT in my honor, and I met another Philadelphia Chromosome Positive survivor who was actively involved with the Society. I became a patient speaker and Honored Teammate to share my experience with an organization whose research, financial assistance, and social services (all funded by TNT) has been directly responsible for helping so many patients overcome - or learn to live successfully with leukemia and related blood cancers.
Know that the money you raise will be well used by the Society. And for those of you who, like me, are not in the best of condition at the time you begin your training, I also want to assure you that if you follow the training guidelines, you too will complete your marathon.
Thank you for taking the time to read this, and for participating in Team in Training.
With warm regards,
Tom Coughlin
When I read Tom's letter, I was impressed by the direct role The Leukemia & Lymphoma Society played in his treatment. It's comforting to know that there is an organization like The Society out there taking care of people.
