Life can be greatly enriched by a little inspiration from unexpected sources. I had such an experience a few days ago.
If you follow my blog, you know that last week I traveled to Washington for the release of the 2013 cancer research progress report from the American Association for Cancer Research. The visit consisted of a busy two days discussing the importance of federal funding to advance cancer research. Events included committee meetings, a press conference, a reception, a dinner, a meeting to organize our advocacy efforts, and visits to congressional offices. Participants in the effort included not only researchers and physicians but also patient advocates.
One of the advocates was 8-year-old Maddie, who has been dealing with leukemia for more than half of her life. It is hard to think about what this little girl has been through – months of intensive chemotherapy with multiple complications, relapse of the leukemia, bone marrow transplantation with multiple complications, relapse again. Her parents then sought out a highly experimental immunotherapy because there were no other options. That experimental therapy was successful and Maddie is back to being an active 8-year-old – one without any evidence of leukemia (her story can be found as part of the cancer research progress report at http://cancerprogressreport.org/Pages/maddie.aspx).
As a cancer immunotherapy doctor and researcher with an interest in blood cancers, I was familiar with the concept that was being tested in Maddie’s study. Previous attempts over the past decade to develop this approach, which involves genetically reprogramming the patient’s own T cells to fight cancer, had not been successful. However, with persistence, the cancer immunotherapy community has continued to make improvements, and was abuzz with the recent encouraging results. Thus, I had heard much about Maddie’s T cells, but did not know anything about Maddie herself.
What I learned was that, in many ways, Maddie is a typical 8-year-old girl. She likes chocolate milk and candy (but not Hot Tamales). When we were chatting and I told her my last name was “Weiner,” she giggled, put her hands over her head and said she was a hot dog (“Weiner” is a tough name to have, particularly these days, but I take advantage of it any way I can, such as when starting up a conversation with an 8-year-old). Throughout the next day and a half, this was our private joke – in the restaurant, the halls of Congress, and even during a meeting with a senator. Every time Maddie saw me, her hands went up like a “hot dog” and we both smiled.
I also learned that, in some ways, Maddie is not a typical 8-year-old. She has a calmness about her that is well beyond her years. She enjoyed but did not seek the attention she received, and seemed to grasp the importance of what was being discussed despite the very adult conversations about research, medicine and politics going on around her. She didn’t complain, and didn’t sweat the small stuff. It is not possible to know what role Maddie’s experience with leukemia played in her approach to life, but whatever the cause, Maddie is just as remarkable as her T cells.
I am still a scientist who knows that data is important. I will continue to do what I did in Washington, which is quote statistics that support the importance of cancer research. However, none of these statistics comes close to making the point as clearly as getting to spend a little bit of time with a remarkable little girl who is still with us because of cancer research.
When Maddie put her hands up over her head, she was joining me in a bit of fun word-play related to my silly name. This gesture now means something very different to me. It is a reminder of the very real and very personal difference that research makes in very special lives.
So … Maddie, if your mother or father find this blog and are willing to pass it along, this is for you: