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Determined to Matter: A Family Facing Inoperable Brain Cancer

Overview

Shannon O'Hara, skating down the ice chasing after the puck, comes face to face with a larger-than-life opposing team player. Never one to back down from anything, barely five feet fall, Shannon tangles with the player and ends up with a penalty. As she sits in the penalty box—only thinking about getting out in two minutes—no one would ever imagine that this beautiful, vibrant, and competitive young spirit will be gone in 54 days. The devastating news that 12-year-old Shannon is diagnosed with an inoperable brain...

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Determined to Matter: A Family Facing Inoperable Brain Cancer

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Overview

Shannon O'Hara, skating down the ice chasing after the puck, comes face to face with a larger-than-life opposing team player. Never one to back down from anything, barely five feet fall, Shannon tangles with the player and ends up with a penalty. As she sits in the penalty box—only thinking about getting out in two minutes—no one would ever imagine that this beautiful, vibrant, and competitive young spirit will be gone in 54 days. The devastating news that 12-year-old Shannon is diagnosed with an inoperable brain tumor is unfathomable, surreal, and unimaginable. This is the raw and emotional story of the O'Hara's as they prepare for the fight of their lives, and their ultimate loss.

Written and inspired by a blog that Dan and Jen O'Hara wrote to keep in touch with their family, friends, and supporters near and far, the story follows the yearlong battle from diagnosis to death and exemplifies how to live the "new normal" every day, no matter what it entails. Shannon's struggle reveals why family, faith, and hope are so important in our daily lives and how the support of a community plays such a vital role through the good times and especially the bad.

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Editorial Reviews

From the Publisher
"O’Hara and her husband, Dan, try to make the best of a tragedy—their daughter’s death from brain cancer at age 13—by sharing her story. ...Readers...will find the O’Haras’ email messages to their loved ones and a year’s worth of blog entries inspiring on many levels. ...In her thoughtful afterword, Dr. Cynthia Wetmore of St. Jude Children’s Research Hospital writes that the O’Haras are so dedicated to helping find a cure that they delivered Shannon’s tumor to her after her death. That donation, and this book, may help other families channel their grief in a positive way." — Booklist

"Drawn from that original blog, with additional notes and photos, this book is a tribute to Shannon’s memory and a testament to Jen and Dan’s experiences. ...readers may embrace this as the story of a family coming together in the wake of a tremendous tragedy... Recommended for those able to find a sense of purpose in this heart-wrenching story." — Library Journal

"A brave, beautiful, bittersweet book; you will be a better person for reading it." — Julie Jones, Radio Personality, Rochester, MN

"Determined to Matter is  beautifully put together and is absolutely heart rending to read.  Jen and Dan are so honest and open with their family’s battle." — Rachel Schuldt, Executive Director Minnesota Wild Foundation

"This is a remarkable story of a remarkable family who faced cancer and death of their daughter Shannon - an all too common experience for families. Reading this book helps us to be in touch with our own experiences with cancer and other health crisis experienced by our family and friends. Shannon, her journey and this story matters." — Margaret Perryman, President/CEO, Gillette Children's Specialty Healthcare, St. Paul, MN

"The last half of the book tugs at the heartstrings as the reader walks with the family through Shannon's decline and passing, as well as witnesses their grief and valiant efforts at getting on with their lives. Determined to Matter is a good read for anyone lacking in appreciation for those special people in their lives. It is a reminder to all to look around and really see what wonderful things those we love bring into our world." — Compass Book Ratings

"Determined to Matter is a heartfelt story of facing death at a young age, and the trials that family members of a gravely ill young adult endure." — Midwest Book Review

"...a beautiful, honest expression of what a family goes through. They warn that it's not sugar-coated. It's not, and that's why it's so good. It's full of the range of emotions anyone would feel. Dan and Jen express it all." — Mike Dougherty, Post-Bulletin, Rochester, MN

"While she may be gone, she is certainly not forgotten." — Paul Christian, Post-Bulletin, Rochester, MN

"Hundreds of people kept up on Shannon's condition as her parents, Dan and Jennifer O'Hara, chronicled their daughter's final months in an honest, heart-wrenching online journal...Much like her passion for life and sense of humor, Shannon is remembered for her strength and determination." — Christina Killion Valdez, Post-Bulletin, Rochester, MN

Library Journal
Only nine months after her initial diagnosis, 12-year-old Shannon O'Hara succumbed to her diffuse intrinsic pontine glioma (DIPG), a kind of brain tumor. To keep family and friends updated, her mother, Jen, a high school teacher, and father, Dan, started a blog shortly after the diagnosis. Drawn from that original blog, with additional notes and photos, this book is a tribute to Shannon's memory and a testament to Jen and Dan's experiences. Additionally, neuro-oncologist Cynthia Wetmore (St. Jude's Children's Research Hosp.) provides a short overview of what DIPG is and how researchers are working to stop this particularly aggressive cancer. VERDICT For readers looking for a medical discussion of childhood cancers, Jeanne Munn's Children with Cancer: A Comprehensive Reference Guide for Parents is a better resource. Although some readers may embrace this as the story of a family coming together in the wake of a tremendous tragedy, others may be put off by the tragic ending of a young life. Recommended for those able to find a sense of purpose in this heart-wrenching story.—Rachel M. Minkin, Michigan State Univ. Libs, Lansing
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Product Details

  • ISBN-13: 9781938063206
  • Publisher: Scarletta Press
  • Publication date: 6/1/2013
  • Pages: 336
  • Sales rank: 1,389,372
  • Product dimensions: 6.00 (w) x 8.90 (h) x 0.90 (d)

Meet the Author

Jen O'Hara is a Rochester, MN, native and graduated from the University of St. Thomas in St. Paul, MN, with a BA in Broadcast Journalism. She has worked as a high school educator teaching television production and as a tennis instructor to students of all ages, while also being at home raising her two daughters, Shannon and Erin. Jen has been married to husband Dan for 17 years. She is an avid Broadway musical fan as well as an enthusiast of all kinds of sports, especially golf and tennis. This is her first published work, and it is in memory of her daughter, Shannon.

Dan O'Hara is the husband of Jen O'Hara, father of Shannon & Erin O'Hara, and of course, master of Sunny the wonder dog. After earning a BS in Mass Communications from St. Cloud State University, Dan spent 13 years in local television as Sports Director at KTTC TV, Rochester, MN. Today he is a Sales Executive in the Transportation/Trucking industry. Dan's passions are his golf, his backyard and his Minnesota sports teams. Dan continues to wear his heart on his sleeve. Together, Dan and Jen wrote the original blog about their journey through these difficult times, and some blog excerpts in the book are credited to him.

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Read an Excerpt

Introduction
“Seasons of Love” is one of my favorite songs from the musical, Rent. The song is about how we measure the passage of time:

In daylights, in sunsets, in midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
One year. 525,600 minutes.
How do you measure a year in life?

This is my family’s story—one year in our life—beginning with a life altering diagnosis for my daughter Shannon. My husband, Dan, and I wrote a blog during our journey, and much of that blog remains intact in this book. As we stated on the blog’s front page, we wrote from the heart, so parental discretion is advised...

Section of Epilogue
The days, weeks, and months from April 15, 2011, to now have taught us so much about ourselves and about others. We know a level of sadness and loss that we couldn’t imagine. But we also know about gratitude, grace, kindness, and acceptance. Shannon showed us the way.

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Table of Contents

Preface xi
Introduction ...xiii
The Penalty Box ...1
Diagnosis Day April 18–20 ...2
The Blog April 21–25 ...10
Shannon the Cannon April 26–May 2 ...19
Community May 3–13 ...29
Eyes Wide Open May 15–27 ...41
Family Ties May 28–June 10 ...53
Sisterhood Rules June 14–27 ...68
Fear Factor June 29–July 22 ...80
Stubborn Streak July 24–August 7 ...96
It Takes An Army August 8–24 ...109
New Normal August 26–September 15 ...120
The Sound of Music September 20–October 17 ...133
Sports October 19–November 6 ...149
Passion Found November 7–16 ...158
The Rebels November 18–December 2 ...165
Memphis on Broadway December 4–13 ...179
St. Jude December 14–23 ...194
The Dumpster December 23–January 3 ...209
EIO—Born Wise January 5–15 ...229
The Letters January 17–February 26 ...245
Grief February 29–March 21 ...275
Hope March 24–April 18 ...290
Lessons Learned ...305
Back to the Start ...307
Epilogue: Memorials and Moving on ...308
Afterword, Dr. Cynthia Wetmore, St. Jude ...311
Acknowledgements ...315
The Shannon O’Hara Scholarship Foundation ...318

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    Posted December 8, 2013

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