Letter to a longtime lymphoma survivor from a fellow cancer warrior: 'Your dedication to others is inspiring’

Editor's note: The following was written in response to the Accent cover story on Aug. 2 about Arkansas state Rep. Dwight Tosh, the first St. Jude Children’s Research Hospital patient to survive 60 years post-treatment.

Dear Dwight,

I don’t officially know you, but we have a lot in common. I’m a cancer survivor as well. I was diagnosed with leukemia at age 32 and had a bone marrow transplant at age 49.

I’m also the CEO of the Pediatric Oncology Support Team (POST) in West Palm Beach. In my 24 years at POST, we’ve helped more than 2,200 children with cancer and their  families in South Florida, providing emotional and financial support as they go through their cancer journey.

It has been my honor and privilege to serve patients exactly like you and your family in my time at POST, to walk with families through the darkest time of their lives. I have held their hands, wiped away their tears, spent hours in clinics and sitting bedside in hospitals. I have laughed with them, cried with them, rejoiced with them when it’s good news and grieved with them when it’s not.

It’s almost unfathomable the progress that has been made in childhood cancer since you first stepped foot into St. Jude 60 years ago at age 13. The prognosis for a child with Hodgkin lymphoma back then was dismal. Now the American Society of Clinical Oncology (ASCO) reports that the “5-year survival rate for children 14 and under with Hodgkin lymphoma is 99%.”  Could your 14-year-old self have even imagined that in your wildest dreams?

In 1962, pediatric oncology was in its infancy, with failures far outweighing successes at the enormous cost of human lives. Back then, your brave family dared to hope in the face of bleak odds.

Now hope exists for families because people like you took the bold and courageous step of being the first — not with the certainty of a good outcome but with the certainty that, no matter the outcome, your story would add to the accumulated knowledge that today means more children’s lives are saved from cancer than lost to cancer.

The patients I see today have a much greater chance of surviving their cancer than ever before. That is grounded in the commitment to sharing research.

Most people don’t know that the childhood cancer world differs from the adult cancer world in a very significant way: most pediatric oncology centers are part of the Children’s Oncology Group, a clinical trials group supported by the National Cancer Institute. There is routine sharing of information among specialists so that children all over the country have access to the most cutting-edge medical advancements.

Research is advanced by increased numbers of patients who allow their information to be added to the aggregated data. This is how doctors determine which treatments work. This is how lives are saved.

I can barely imagine the terror your family felt at the time of your diagnosis, knowing how bleak the prognosis was. What courage it took to embark on a new, untested path, to put your faith in those who said, “Maybe we can help.”

I picture your adult self looking back on your child self with awe and compassion, and maybe some pride.

One thing that resonates strongly is your desire to give back and to make the most of the gift you’ve been given. Your commitment and dedication to others is inspiring. Many of our patients feel the same. There is an innate need to give meaning to suffering, and helping others is perhaps the noblest way of doing that.

With that being said, surviving cancer is still extremely challenging for a child trying to transition back into “normal” life. We’re working on that.

As someone working with young cancer patients and their families, and someone who has faced her own battle with cancer, I am profoundly grateful to the pioneers who came before me and to the visionaries who dedicated their lives to the belief that we can do better and should do better.

Because of you and those innovative physician researchers, thousands of children have grown up to have the opportunity for happy, successful lives — something that was almost unthinkable in 1962. For you and for all the cancer warriors who came before, I have only five words: Thank you for your service.

Barbara Abernathy is CEO of the Pediatric Oncology Support Team (POST) in West Palm Beach, a nonprofit which helps children with cancer and their families.

This article originally appeared on Palm Beach Post: Letter to a longtime lymphoma survivor from a fellow cancer warrior