Wednesday, December 31, 2008

In remembrance: Make a difference

Benjamin Ward Towne
July 17, 2005 - December 30, 2008

One look at this sweet young tennis player's face & dates and you'll understand why my heart is broken at the end of 2008. Ben was diagnosed with neuroblastoma in August 2007 the same week one of my lifelong friends should have died from what CT scans showed as a fatal arteriovenous malformation (AVM) hemorrhage. Ben's scans showed no cancer this summer, a very aggressive return in October, then he entered hospice care with supposedly days to live on November 3rd.

Ben was the son of our pastor who officiated at our wedding almost 9 years ago. I did everything I could to stand alongside Jeff and his family as he did at the beginning of our own family, from morale support through regular posting on Ben's CaringBridge website to offering any research assistance possible as a medical librarian.

That included letting them know about the launch of Children & Clinical Studies this year although they were already well into a Year 5 study at that point since Ben's neuroblastoma didn't respond to chemotherapy.

I hope that MedlinePlus will update their Clinical Trial links both at the neuroblastoma website and elsewhere in topics relevant to disease in children with this valuable resource. I am certain most parents would not think to do an additional search beyond the main ClinicalTrials website yet it's needed to understand the importance of research in children, how to get started in a study, what happens once their children are in one and resources available to them. Children are not little adults. They are unique. I could not agree with the American Academy of Pediatrics' President, Dr. Renee Jenkins, more.

I will not say Ben lost his battle to cancer for that puts too much focus on a disease that did not remotely define who he was. Ben lived his life, short as it was, with so much enthusiasm that he literally touched the world. It is with profound gratitude that I thank the people in Texas who made a difference by being able to get Roger Federer, James Blake and Andy Roddick to all personally connect with Ben and bring joy to his final days. He didn't live long enough to receive his wish from Make-A-Wish but this was close!

What can you do to make a difference in 2009? I'll keep researching and writing here and living life to the best of my ability for my contribution, and have a few other specific things up my sleeve that I'm working on. Thank you for being part of the journey this year & all best wishes for health and peace in 2009!