The Emily Updates (Vol. 1): One Year in the Life of the Girl Who Lived

The Emily Updates (Vol. 1): One Year in the Life of the Girl Who Lived

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by Thomas P.M. Barnett

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Seventeen years ago, when Vonne was 33 and Tom was 32, they 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, Tom worked for a defense think tank in the Washington, DC area and


Seventeen years ago, when Vonne was 33 and Tom was 32, they 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, 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.

What followed was the defining crisis of their now 25-year marriage: 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 over one hundred relatives and friends. The couple started this diary because they tired of having to rehash all the details in phonecalls, but over time they 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 Tom and Vonne hoped she would become.

Several things came together in the last couple of years to convince Tom and Vonne that now was the time to finally publish this amazing diary. First – and most obviously – has been the meteoric rise of eBooks themselves. After all, the Emily Updates basically constituted a blog before there were blogs. Second was Emily’s own matriculation into college, where she now majors in East Asian studies and English. Having made it to adulthood, Tom and Vonne felt the time was right for their family – and Emily herself – to share this story with the world.

The family now hails from the Indianapolis area, and besides 19-year-old Emily – the girl who lived, it boasts five additional children: sons Kevin (16) and Jerome (11), an adopted Chinese daughter Vonne Mei (7), and adopted Ethiopian sisters Metsuwat (4) and Abebu (3). Would the Barnetts have achieved such a blended clan absent the early experiences of Emily’s cancer? Probably not. But yes, that’s perhaps another reason why they wanted to revisit this tumultuous early family chapter at this time. As Vonne now finally gets back to restarting her professional career, the couple wanted to take this moment to remember how they 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 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 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. Various stories concerning the period between those initial treatments and the beginning of the updates in January 1995 appear across most of the 45 updates.

Tom and Vonne haven’t made an effort to “improve” the updates from today’s perspective, feeling it was important to leave them in their raw, written-in-the-heat-of-battle state. Yes, they now claim to be wiser on a host of subjects, 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.

Once all of the updates are published as eBooks, Tom, Vonne will publish a fifth retrospective volume co-written with their daughter Emily. It explores our memories of those tumultuous events and how they've continued to shape their collective and individual lives ever since. The volume also includes commentary on the updates themselves, and provides general advice to parents facing similar crises in their family life.

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.

Editorial Reviews

Mark Safranski
Culled from a blog originally written by Tom and his wife Vonne Meussling-Barnett to keep family and friends appraised of the details of Emily’s medical treatment, the series paints an intimate portrait of parental desperation and the amazing grace of a toddler facing a life-threatening disease.

There are two sizable groups of people who will react most strongly to The Emily Updates : parents of young children and those who have faced cancer themselves, or in a loved one.

Product Details

Barnett Consulting LLC
Publication date:
The Emily Updates, Vols. 1-5 , #1
Sold by:
Barnes & Noble
File size:
242 KB

Meet the Author

Tom Barnett (dad to Emily, husband to Vonne) was born in Chilton, Wisconsin in 1962, but grew up in Boscobel WI. The eighth of nine kids, he attended Catholic grade school and public high school there. Tom attended the University of Wisconsin-Madison from 1980-84 (BA in Russian and International Relations). While working as a cook at an Italian restaurant there, he met and started dating Vonne Meussling, another student. After a year spent apart while he attended Harvard grad school in 1985, Tom proposed and they were married in 1986. After getting his PhD in Political Science in 1990, Tom began a work career in national security, information technology and management consulting that continues to this day. Tom is the New York Times-bestselling author of The Pentagon's New Map (2004) and three other books. A sought-out professional public speaker, he is available to speak on The Emily Updates.

Vonne Meussling was born in Fort Wayne IN in 1960 but grew up across the state line in Payne OH on her family's farm until she left the area with her mother and younger brother in the early 1970s. Vonne attended high school in Eau Claire WI and Fredonia NY, and then went on to a BA in journalism and an MS in Urban Planning at the University of Wisconsin-Madison. She met Tom while waitressing at an Italian restaurant where he was a cook. While Vonne stayed behind to finish her Master's degree, Tom went to Harvard for grad school. After a year apart, they got engaged and Vonne joined Tom out East. They married in 1986 in Madison WI and celebrated their 25th anniversary earlier this year. While Tom was in grad school at Harvard, Vonne worked in elder affairs (service supervisor) in Boston (North End) and later as a nursing home ombudsman for the South Shore and Cape Cod. Following her move to the Washington DC area with Tom in 1990, Vonne attended law school but withdrew when she became pregnant with her first child, Emily. While the family lived in northern Virgina, Vonne worked part-time in retail and then as a unit secretary in a major regional hospital following the birth of her second child, Kevin in 1995. Vonne has been a stay-at-home mom since mom since 1998, through her third child's birth, Jerome, in 2000, and the international adoptions of three daughters: Vonne Mei from China in 2004, and sisters Metsuwat and Abebu from Ethiopia in 2010. Vonne is now getting her Master of Social Work from Indiana University/Purdue University at Indianapolis (IUPUI).

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The Emily Updates (Vol. 3): One Year in the Life of the Girl Who Lived 4 out of 5 based on 0 ratings. 1 reviews.
debramathis More than 1 year ago
This was such a touching thing for the family to share. Written like a blog, these weekly letters to family and friends bring you into the life of parents Vonne and Tom. Their young child Emily has been diagnosed with an advanced pediatric cancer. An inspiring story that will give hope to many.