7/03/1994 shot of Em at Grandma's house several hours after I discovered the lump that, days later, was diagnosed as her Stage-IV kidney cancer, which for Em meant one kidney already consumed and metastasized tumors in both lungs. The misdiagnosis we got that day was umbilical hernia, but we didn't trust that and decided to fly back to VA from WI the next morn. This is Em eating some ice cream in the living room while Grandma, in the background, looks on. When Em had her kidney out six days later, she lost about 10% of her total body weight.
Spent the weekend doing a final edit of the retrospective volume co-written with wife Vonne and Emily herself. It was an amazing experience to write this 48,000-word volume with the two of them - something I'll treasure for the rest of my life. I really think it's the best volume of the lot. As powerful as the original Emily Updates were in their immediacy, it is stunning to have the three of us, writing separate "Mom/Dad/Emily looks back" chapters, to come to many of the same conclusion about how Emily's cancer altered our lives permanently and profoundly.
The volume also contains three other chapters: one that tracks our family's path from the end of the Updates to now, another that is a sort of "director's commentary" (by me) on the Updates, and a third by me that is an explicit and detailed "lessons learned" for parents of pediatric oncology patients.
It's been a lesson on setting this whole thing up. Went out and bought ISBN numbers, plus did the copyright submission with the US Copyright Office. Got signed up at Barnes & Noble's eBook site as publisher, and then likewise at Amazon and Apple. Just purchased TheEmilyUpdates.com custom domain and started putting together a new Squarespace site to that end (my next focus). And then there's the PR work that Steve Oppenheim is doing, which includes lengthy interviewing of me to generate materials to be used. We are planning to target a wide range of media to the best of our collective ability.
A couple of years back, this would have seemed crazy, but now with Amazon selling more eBooks than paperbacks and hardcovers combined, it's a new world - and a much better royalty rate. So, given that the production costs are minimal (add it all up and even with the professional formatting, we're barely escaping 3 figures), this personal dream becomes not only possible but a legitimate endeavor.
I have no idea of how successful the Updates will be. I just know I wanted to share the story on our terms, and eBooks make that possible now - roughly a decade and a half later.
I'm already working with the Lombardi Cancer Center at Georgetown regarding promotion, and without getting into our plans for targeting the widest possible array of media, I want to ask people if they had any ideas and/or experience in trying something like this.
So please comment if you do.