Sunday, September 11, 2011 at 10:48AM 
Got the basics up and filling in blanks furiously. Plenty of photos already posted, video to come.
Comments and suggestions welcomed.
Meanwhile, the de rigueur 10th anniversary commentary comes in tomorrow's WPR column.
Saturday, September 10, 2011 at 1:17PM 
Emily in late fall 1994, the first time she went completely hairlessI'll tape a segment with him on the 19th that will air later.
First interview landed.
Wednesday, August 31, 2011 at 8:57AM 
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.
Saturday, July 30, 2011 at 11:06PM 
While still working out the arrangements with my literary agency (Zachary Shuster Harmsworth) since this is a proof-of-concept effort for them, I did manage to land my publicist from "The New Map" series, Steve Oppenheim (Oppenheim Communications, based in Manhattan). It will be a first-time process for Steve too, doing a straight eBook with no hard-copy version, but both of us agree that we like the non-rush of trying to make all the PR happen in a two-week period.
Steve is a great guy and I deeply enjoyed working with him on the three previous books, plus we feel honored he likes the material enough - and believes in it enough - to go down this new path with Vonne, Emily and I.
Other positive news: looks like Esquire will give us a nice plug in the magazine.
Vonne, Emily and I, having all three spent the last couple of weeks taking notes on the first four volumes, held a production meeting today in my office to pitch our ideas to each other concerning the fifth volume retrospective. Emily is working about 15 themes, while Vonne has 18 in hand. Me? I have 26 pages of notes. Between us I am certain we have the 50,000 words for the volume. No doubts about my ability to write on demand, and Vonne is highly incentivized to finish before she starts a Masters in Social Work program at IUPUI (Indiana U/Purdue U @ Indianapolis - home to the oldest MSW program in the country). Em, of course, must finish up before heading back to IU in Bloomington for her sophomore year. Vonne has been writing for a bit now, and Em I know can crank, since she routinely generates fan fiction pieces in the tens-of-thousands range.
The goal is to have the first draft done in 2-3 weeks and a final draft by the end of August or mid-September at the latest. We then get the four volumes back from Ebook Architects (in their various file formats) NLT mid-September to make the 9/19 publication of the first volume on the major sites (Amazon, B&N, iBookstore). I'm hoping to have the fifth volume polished by Labor Day so I can spend the rest of my free time in September blowing up the Emily Updates site-within-this-site (photos, videos, etc.)
All an experiment for me, but a fun one.
On the subtitle: just enough pushback from the agency on linking "three-year-old" with "cancer" that I rethought the approach. "The Girl Who Lived" has been a theme of ours for years, as Emily has long identified with the Harry Potter character's backstory (near-death experience as toddler, the telltale scars, the questions, and the weird fame within our circles for something she barely remembers . . . oh, and the ever-present fear of the return of the disease that no one likes to mention! Is it still inside her on some hidden level?). I wanted to keep "One Year in the Life" bit because of my years of working Aleksandr Solzhenitsyn's many books, and we thought the two riffs went well together. The Emily Updates are full of fan-fictiony-like references to books and films; it's just who we are - a family of fanboys and fangirls.
So it stays "The Emily Updates" because that's what I called all the weekly summary emails I sent out (numbering them as well), and we say "One Year in the Life" because we're not asking you to read the life story of a 19-year-old, just about this one amazing year (actually about 14 months but basically her third year of life), and we wanted to put out there in the title that she is "The Girl Who Lived" so as to not scare people off too much. This was a crucible experience but one that our family, our marriage and our child patient survived. We figure the three themes (The Emily Updates seems to be a diary, One Year in the Life says this was some extraordinary period, and The Girl Who Lived dispels any cliffhanger fears while insinuating that, like Harry Potter, Emily survived a very deadly set of circumstances/events) and the picture will convey the right mix of themes.
The covers as I've put them together now:
Why the black and red motif? You can't tell from the black and white photo, but she was wearing a red shirt over her Spandage vest (which is why her neck looks kinda fuzzy), plus her hat was blood red with black trim. So when I see that picture (we just refound the black-and-white negative in the memorabilia box we unpacked and perused today), I see red and black - simple as that.
Saturday, July 23, 2011 at 12:01AM For now, it seems like I can't reserve a space at Amazon for pre-orders, because you can't formalize the page until you upload the book file. I'm expecting to get the files back mid-September, so we target 19 Sept for the first volume, with the other four coming in a sequence of three-week intervals, finishing in mid-December. Emily, Vonne and I are writing the retrospective Vol. V this summer. It's a family affair.
So for now, we just have this starter page that I will expand over the coming weeks.
by THOMAS P.M. BARNETT, with VONNE M. MEUSSLING-BARNETT
A five-volume eBook serial to be published in all major venues (Amazon's Kindle, Barnes & Noble's Nook, Apple's iBookstore, etc.) starting in late September 2011.
Tentative publishing schedule (subject to change):
All books will be priced @ $2.99.
PRODUCT DESCRIPTION:
Seventeen years ago, authors Tom and Vonne Barnett were suddenly confronted with every parent’s worst medical “bolt from the blue”: their only child, 30-month-old Emily, was diagnosed with an advanced – meaning metastasized – pediatric cancer. At the time, the thirtysomething couple were living in northern Virginia.
What followed was the defining crisis of their union: an intense 20-month battle to keep their first-born alive. About six months into the struggle, Tom started writing a weekly update on Emily’s progress (or lack thereof) for interested parties. Vonne contributed to this blog-like diary, and it was sent out by email, fax and regular mail to several hundred relatives and friends who spontaneously organized themselves into their family’s extended support network. Over time, the couple came to view the updates as something more important: a real-time memoir that would someday prove crucial to Emily’s understanding of how she became whom Tom and Vonne hoped she would become.
The journey from blog diary to this eBook serial is worth recounting. The original diary ran about 400,000 words, or somewhere in the range of an 800-page book. In the late 1990s, Tom edited the text down to approximately 200,000 words and posted the 45 updates online at a website he created specifically for that purpose. Having received a lot of positive feedback from readers, they sought publication as a regular book, but then fate intervened in the form of a new job for Tom in Rhode Island and the project was – pun intended – shelved.
But the recent meteoric rise of eBooks has convinced Tom and Vonne that now is the time to give publication another try (Vonne, for example, is a Kindle fanatic!). After all, the Emily Updates basically constituted a blog before there were blogs, so eBooks struck the authors as an entirely appropriate venue for the material, especially since they’re interested in making it easily available and they know - from first-hand experience - how parents and relatives of patients experiencing medical crises typically turn to the Internet to locate sources of information, comfort and inspiration in their time of need.
What you now have the privilege to read in this series of eBooks are the original weekly updates as Tom wrote them – with Vonne’s continuous inputs – across all of 1995 and into early 1996, a period encompassing the last 14 months of Emily’s treatment protocol. Those 45 updates constitute Chapters 3 through 9 in the series: Chapter 3, which concludes with the birth of their second child, in included in this volume; Chapters 4 and 5, which cover the difficult summer of 1995, make up Volume II; Chapters 6 and 7, which chronicle the family's final push on the chemotherapy, fill out Volume III; and Chapters 8 and 9, which encompass the post-treatment diagnostics – and Make-a-Wish trip to Disney World, constitute Volume IV.
The first two chapters presented in this Volume I are actually recreations of the events surrounding the initial diagnoses (Chapter 1) and the beginning of in-hospital treatment (Chapter 2) in July of 1994. Tom put these diary-like remembrances together in June of 1995 to mark the one-year anniversary of the diagnosis, and they are based on the voluminous medical records from that time period.
The authors haven’t made an effort to “improve” the updates from today’s perspective. Tom and Vonne now claim to be wiser on a host of subjects that arise in this family memoir, but a lot of that wisdom stems directly from these experiences, so they felt it made most sense to share them with you, the reader, in this unaltered format.
The concluding fifth volume in the series is written from today's perspective, to include that of a grown-up Emily - the girl who lived!
If this series of eBooks helps you better understand an analogous past experience or ongoing crisis in your life, then Tom, Vonne and Emily have accomplished what they set out to do by sharing their intense story.
Sunday, May 22, 2011 at 1:35PM 
I am in the process of working out the details with my literary agency, Zachary Shuster Harmsworth, to publish the "Emily Updates," our (Vonne and I) real-time diary of our first-born's battle with cancer as a three-year-old in the mid-1990s, as a eBook serial this summer. We're looking at four volumes, roughly 50,000 words each, released sequentially as eBooks via Barnes and Noble and Amazon.
Today I turned in the edit of Volume 1, which encompasses the discovery/diagnosis (chapter 1), the long initial hospital stint (chapter 2) and then, after a time jump, the start of the weekly updates six months into her chemo protocol. The rest of the updates take the reader through the end of her treatment 14 months later.
I'll be doing the same light edit of the rest of the 150,000 words of text over the next couple of weeks. I am enjoying the process immensely and remain very proud of the work. The original e-diary (really a blog before there were blogs) came to 400,000 words. I spent 1996-1998 editing that down to 200,000, and that's the version I'm editing now. That version was online from 1998-2004.
This collaboration with Zachary Shuster Harmsworth will be an experiment for both of us - a first-time event. But I wanted to explore doing eBooks, and I think this is the perfect venue and the perfect time to finally put this out. It is especially joyous for me to work the text with Em herself home from her first year of college!
Today I edited a bit where my 1995 Tom was dreaming of watching an older Emily pull away from the pack at the 2.5-mile mark in the road race, as well as stun the audience with her brilliant comment during the competition. I have since witnessed both events: Emily winning her division in a 5k race at the Naval War College sometime in the early 2000s (the trophy is upstairs); and Emily helping her constitutional team take first honors in a state competition in Indianapolis as a HS frosh (I was in the audience when she pulled out the constitutional case that was the lever civil rights lawyers used to start overturning a certain class of discriminatory laws in the South (interstate commerce clause, if I remember)).
Anyway, it was just so amazing to see the words on the screen - dreams that have literally come true since then I penned them in pure aspiration 16 years ago.
More news on this project to follow, but for now the plan is to get all four volumes out as eBooks this summer. Reason for my personal push is that I begin discussions on a new professional book in the fall with 1-2 potential collaborators. Pretty excited about that too, so want this out of the way. Scrambling on the edit now because of the Wikistrat grand strategy coming up, where I'll be judging 200,000 words of submissions (minimal) every week for four weeks running. I take grading very seriously, so I expect that effort to be consuming.
