Introducing "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
I need a break from the everyday grind of producing posts, as I haven’t skipped a day in 14 months now.
So … from here through the 6th of January, I’m going to share the most important (to me) thing I ever wrote — and self-published: my real-time diary of my daughter Emily’s roughly two-year battle with Stage IV cancer as a two and three-year-old.
The material matters and mattered to me on three levels:
If I hadn’t written it all down in real time, I wouldn’t remember hardly any of it, it was such an exhausting blur. You know how it’s hard to remember stuff that happened during the COVID lockdown? Well, my wife and I and Emily were effectively locked down for about 17 months, so we were all very familiar with that weird mushing of time.
It kept me sane to write throughout the long ordeal. It was my release and my gift to Emily as a remembrance.
It was when I really learned to write. I had written tons of papers, a dissertation, and I had turned that diss. into a published academic book, but I didn’t become a WRITER until this.
Why do this now?
Thirtieth anniversary this year brought back a ton of memories.
I do need that break across the holidays this year, especially since we’re packing up half the house and I’m driving a truck to Minnesota after New Year’s to put it all in storage there in anticipation of our move next summer.
Plus, I’m going to the Packers-Bears game during the same trip, returning on 6 January.
So, I repurpose some old material that I feel deeply about and enjoy sharing with you all while processing this busy time and “relaxing” by not writing all the time.
I’ll be back to regular posts on the 7th, then.
Today, I preview the 11-part serialization of this serialized diary, which we published in five volumes back in 2011 on Amazon and elsewhere as an e-book. These 11 posts will cover only Volume 1 of the five.
No idea if I bother putting up the rest here at differing points in the future.
I will just play it by ear.
Here’s the Introduction to the e-book series:
The Emily Updates: A Year in the Life of a Three-Year-Old Battling Cancer (VOLUME I)
By
Thomas P.M. Barnett
With
Vonne M. Meussling-Barnett
(2011) Introduction to eBook series
Seventeen years ago, when Vonne was 33 and Tom was 32, we were suddenly confronted with every parent’s worst medical “bolt from the blue”: our only child, 30-month-old Emily, was diagnosed with an advanced – meaning metastasized – pediatric cancer. At the time we were living in northern Virginia. Tom worked for a defense think tank in the Washington, DC area and Vonne was a largely stay-at-home mom prepping for a return to her earlier professional career in social work. We were trying – in vain – for our second child.
What followed was the defining crisis of our marriage: an intense 20-month battle to keep our 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 over one hundred relatives and friends who spontaneously organized themselves into our family’s extended support network. We started this diary because we tired of having to rehash all the details in phone-call after phone-call, but over time we came to view it as something more important – a real-time memoir that would someday prove crucial to Emily’s understanding of how she became whom we 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, following Emily’s successful progression to complete remission, 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, we 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.
As a result of that new job, which saw Tom work for the Department of Defense, he later wrote a trilogy of books for G.P. Putnam & Sons on globalization and international security, one of which was a New York Times bestseller (The Pentagon’s New Map: War and Peace in the Twentieth Century, 2004). Vonne was his research assistant for all three volumes. But even with that heightened literary profile, we found the path toward traditional publication of the Emily Updates to be problematic. “Cancer stories” are considered a bit of a downer and thus not the “sure thing” that most publishers desire nowadays.
But several things came together in the last couple of years to convince us that now was the time to give publication another try. First – and most obviously – has been the meteoric rise of eBooks themselves. After all, the Emily Updates basically constituted a blog before there was blogs, so eBooks strike us as an entirely appropriate venue for the material, especially since we’re interested in making it easily available and we know how many parents and relatives of patients experiencing medical crises turn to the Internet to locate sources of information, comfort, and inspiration in their time of need.
Second was Emily’s own matriculation into college, where she now majors in East Asian studies and English. Having made it to adulthood, we felt the time was right for our family – and Emily herself – to share this story with the world.
Our family now hails from the Indianapolis area, and besides 19-year-old Emily – the girl who lived, we boast five additional children: sons Kevin (16) and Jerome (11), our adopted Chinese daughter Vonne Mei (7), and our adopted Ethiopian sisters Metsuwat (4) and Abebu (3). Would we have achieved such a blended clan absent the early experiences of Emily’s cancer? We can’t ever be sure, even as we suspect it played a significant role in our subsequent decisions to expand our family in this manner. But yes, that’s perhaps another reason why we wanted to revisit this tumultuous early family chapter at this time. As Vonne now finally gets back to restarting her professional career after all these years, we wanted to take this moment to remember how we got here – or how the journey truly began.
What you are about 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 our 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 our 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. We 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.
Various stories concerning the period between those initial treatments and the beginning of the updates in January 1995 are covered retroactively across many of the 45 weekly updates.
We haven’t made an effort to “improve” the updates from today’s perspective. We think it’s important to leave them in their raw, written-in-the-heat-of-battle state. Yes, we 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 we felt it made most sense to share them with you, the reader, in this unaltered format. Simply put, we didn’t think we could make them any more honest than they already are – despite the passing of time.
Once all of the updates are published as eBooks, it is our intention to pen a fifth volume wherein Tom, Vonne and Emily look back at these events from today’s perspective. At this point, we can’t tell you what that effort will entail, because – quite frankly – we first need to undergo the same reliving of events that we now share with you, and we just don’t know what that process is going to unearth in each of us.
We do know this: if this series of eBooks helps you better understand an analogous past experience or ongoing crisis in your life, then we will have accomplished what we set out to achieve with this storytelling effort.
