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Archive for February, 2010

Thursday, February 18, 2010

The Book I Wanted to Write

This piece appeared today in Work-in-Progress, a beautiful and informative literary blog by author Leslie Pietrzyk who explores the creative process and all things literary.
Guest in Progress: Laurie Strongin on “The Book I Wanted to Write”

I’m awfully pleased to present my sister, Susan Pietrzyk, who will introduce her friend Laurie Strongin, who has written a new book about her son that truly is a testament to love and courage:

I enjoy reading my big sister’s blog. When we were kids, I could tell Leslie had a creative process and all things literary in her. Now all these years later, I see through her blog the many ways that creative process has and continues to come to fruition. One’s creative process can be telling—telling of the nuts and the bolts of the process, as well as telling of the individual who has embarked on the process. Leslie asked a friend of mine, Laurie Strongin, to pen a Guest in Progress post. Laurie’s debut book is entitled Saving Henry: A Mother’s Journey (Hyperion). Like Laurie, the book—along with her process to live it, write it, and get it published—spells out the definition of courageous. Now mind you, some twenty years ago I learned about Laurie’s courage and creative process when we lived well and laughed hard the way all twenty-somethings should.

But once we reached our thirties, I stood in awe as I saw Laurie and her husband Allen Goldberg believe in and fight for love and science. I also saw their amazing son, Henry, who, with a whole lot of Batman-like spunk, inherited his parent’s courage and left a lasting mark on how to be a superhero. Saving Henry tells an inspiring story about what life and love mean. Gaining a glimpse of why and how this book was written provides an affecting reminder to write what’s in your heart. ..something that I suspect ultimately drives a lot of writers. ~Susan Pietrzyk

The Book I Wanted to Write
By Laurie Strongin

When I first started writing the book that became Saving Henry (Hyperion), I didn’t have to look far for information on how to get it published. From books to websites to blogs, nearly everyone said the same thing. Write a query letter and proposal, send it to a list of book agents, secure an agent, have the agent secure a publisher, negotiate a deal, get published.

Based on my research, I did a very logical thing. I wrote a query letter and proposal. I even perfected a sample chapter. Then I called all the authors I knew and asked if they would be willing to send my package to their agents. As friends are apt to do, they said ‘yes’. Unfortunately, their agents said ‘no.’ But they said ‘no’ so nicely. “It’s a compelling story. The writing is beautiful. But…it’s too sad.”

It was sad. My son Henry – the subject of my book and among the most inspirational people I’ve had the good fortune to meet, let alone parent – had recently died. I wanted to share his incredible life with as many people as possible. I had several hopes in mind when I started writing the book. One was that his story would inspire hope and determination in others and lead to life-saving or quality-of-life-improving developments. The other was more personal. I wanted to document everything we did to try to reverse Henry’s fate so when our sons Jack and Joe got a little older they would know how hard we fought to ensure that their big brother would always be by their sides.

Henry’s death is devastating, but his life is inspiring. While I respect the opinion of those agents who passed on my book, I refused to take no for an answer.

My persistence paid off. I found an agent who was interested in my book, particularly because it humanized the stem cell debate which was – and continues to – rage. I worked with her to develop a full proposal and sample chapter, focusing on what it was like to be on the frontlines of a medical discovery that held the promise of saving Henry’s life. I wrote about how we, with the support of our doctors, navigated the political and ethical challenges that threatened to destroy the science we pursued and with it, our hope for Henry. I wrote about our decision to use genetic selection of embryos to get pregnant with a baby who would avoid the fatal gene that my husband and I unknowingly passed to Henry and who would be a perfectly-matched bone marrow donor for Henry and therefore be his savior. I wrote about the distinction between choosing an embryo based on life-or-death versus selection for cosmetic traits like eye color, hair color, or even hypothetically IQ or sports ability.

The more I focused exclusively on our medical quest, the less I was satisfied with the overall book. What we did to save Henry was only part of the story. I wanted to write about Henry and his optimism, courage, and sense of humor in the face of hardship, like when he was getting yet another IV placed into his bruised veins and he raised the plastic silver sword that my dad had given him and exclaimed, “Let’s just get it over with!” I wanted to write about how he negotiated a two-hour leave from Georgetown Hospital so he could attend his friend’s birthday party or when, at age five, he woke me up one morning dressed in his blue blazer and khakis and asked me to take him to buy flowers for his seven year-old girlfriend’s ballet recital. Yes, Henry’s story is about medical discovery, but it is also about a remarkable little boy who taught me and countless others what is important and what just doesn’t matter at all.

My agent wasn’t able to sell the book for the very same reasons that I had failed to interest other agents earlier on. “Laurie is a gifted writer, but it’s just too sad a story,” they said. My agent had exhausted her publishing contacts so we parted ways on a friendly basis.

I spent a few months thinking about my next move. I considered giving up on the book. By that time, Hope for Henry, the foundation my husband and I started to honor Henry’s legacy of living well in the face of serious illness, was thriving. We were throwing in-hospital birthday parties, superhero celebrations and summer carnivals for thousands of hospitalized kids; and giving them iPods and DVD players to entertain them during painful treatments and long periods of isolation from other children. This work allows me to spend a lot of time thinking about Henry and to share his positive, spirited approach to life with the people who would benefit most. While incredibly gratifying, my work with Hope for Henry did not diminish my need to write about Henry’s life.

“Write the book you want to write,” my wise friend David Martin, author of 12 books published by Simon and Schuster, advised. “Don’t worry about whether or not it will be published.”

I took David’s advice and ran with it. I wrote on my lunch hour and into the middle of the night. I wove together our quest to save Henry with stories of his relationship with his brothers Jack and Joe; accounts of his meeting the real Batman, Cal Ripken, and President Clinton; dates with his favorite nurse Suzanne; what it was like to ride on the Paratrooper at Funland in Rehoboth Beach, DE, with him; Henry’s proficiency at transitioning from the hospital to running a lemonade stand.

I finished drafting Saving Henry in the summer of 2008, nearly five years after I began writing it. Within weeks, it landed on the desk of Hyperion’s publisher. Actually it was hand delivered by a wonderful man with whom I was working to help improve the lives of very ill children at Georgetown University Hospital in Washington, DC. No query letter or proposal, no agent, just a manuscript enthusiastically recommended by a friend.

Hyperion is publishing the book I wanted to write on March 2, 2010. ~~Laurie Strongin

[NOTE: You can read an excerpt of this extraordinary story here and see photos of Henry here.]

About: Laurie Strongin is the author of Saving Henry (www.savinghenry.com) and founder and executive director of Hope for Henry Foundation (www.hopeforhenry.org), which brings entertainment, laughter and smiles to seriously ill children. She also acts as a family advocate in the national discussion of ethics and genetics. She has participated as a panelist and guest lecturer in forums hosted by the Johns Hopkins Genetics and Public Policy Center. In 2006, Laurie joined Congresswoman Nancy Pelosi to urge Congress to pass the Stem Cell Research Enhancement Act. She is a regular panelist on Clear Channel’s Sunday radio program, “Women Talk,” and lives with her husband Allen Goldberg and sons Jack and Joe Goldberg in Washington, D.C.

About: Susan Pietrzyk, in addition to proudly being the younger sister of Leslie and friend of Laurie, is a PhD Candidate in cultural anthropology at Binghamton University. She is currently writing her dissertation based on two years of research in Harare, Zimbabwe. Her work focuses on the ways Zimbabwean literary and performative arts importantly enhance how HIV/AIDS is understood and addressed. She lives in Durham, NC, with her cat Besh by her side to make sure she writes every day.

Posted by Leslie

Sunday, February 14, 2010

Henry’s Story: A Young Boy’s Life in Glover Park

This story appeared in the February issue of my neighborhood newsletter, the Glover Park Gazette.

Henry’s Story: A Young Boy’s Life in Glover Pa rk
By Susanna Barnett

The memories of Henry Goldberg’s short life extend across Glover Park. His photo brightens the walls of Max’s ice cream shop, a brick at Guy Mason’s playground is dedicated by Henry and his brother to their father, and a plaster cast of Henry dressed as Superman greets visitors at nearby Georgetown University Hospital’s Lombardi Cancer Center.

“His whole life took place in this neighborhood,” said his mother, Laurie Strongin.

It seems appropriate that Laurie wrote a memoir about Henry and the struggle to save him from a deadly disease while she sat in Glover Park’s coffee shops and sometimes at her own kitchen table on Calvert Street. Saving Henry documents Henry’s journey as a new medical field unfolded, but more than that, it captures a little boy’s courage and laughter as he and his family faced insurmountable odds.

“It is very much a love story about this inspiring kid,” Laurie said with a warm smile over coffee. “It is a good lesson to see the difference one child can make. It is pretty extraordinary.”

Two weeks after Henry born in 1995, he was diagnosed with Fanconi anemia, a rare genetic disorder that affects only 1,000 people in the world. Laurie and her husband Allen were among the first to try a new scientific process that combined in vitro fertilization with genetic testing to produce a sibling who could be a stem cell donor for Henry. However hurdles from Congress and nine unsuccessful IVF attempts led Henry to receive a stem-cell transplant from the bone marrow of an unrelated donor when he was four years old. The treatment was unsuccessful, and Henry died in 2002 at age seven.

Laurie started writing about the family’s experience soon after beginning the first IVF treatment. The process they embarked on was cutting edge at the time, and there was no information available to guide her. Writing about it allowed Laurie to feel like she was helping others who would go through the same grueling ordeal, she said. For over two and a half years she filed away her musings, sending some to friends and family through e-mails to keep them involved in Henry’s struggle. After he died, writing about Henry became cathartic.

“One of my ways to spend time with him was to write about it,” said Laurie. She eventually left her job at Fannie Mae to serve as executive director of the Hope for Henry Foundation, which she and Allen founded to provide gifts and programs that entertain hospitalized children with life-threatening illnesses, and to weave her collection of writings together. Laurie hopes Saving Henry helps others as they face seemingly insurmountable challenges.

“It is inevitable that we are each going to face challenges in our life,” Laurie said. “This is a good reference. This is a story about how we navigated our hardship.”

The book also shows how Henry viewed his medical treatment as something he needed to do to get back to the fun part of life. “It is like he laughed in the face of danger,” she recalled. Henry showed his family and friends that no matter what the situation, he could be upbeat. On his third day of treatment for the bone marrow transplant at the University of Minnesota Children’s Hospital, a nurse came in to give Henry yet another IV. “Bring it on!” Henry cried, as he raised his toy sword. When he lost his hair due to chemotherapy, he said, “Hey, I look like Michael Jordan!” Henry charmed his medical team both in Minnesota and at Georgetown, once charmingly asking a nurse at the Lombardi Center on a date to Cactus Cantina.

In between many long and lengthy hospital visits, Henry was active in Glover Park, usually wearing his beloved Batman costume and playing with his brothers, Jack, a year younger than Henry, and Joe, six years younger. He climbed the slides at the Guy Mason playground, ate pizza at Faccia Luna, and of course, loved visiting Max’s, especially after Henry’s Stoddert Soccer team, the Dolphins, won a game.

“He was really fun—very high spirited and inspirational,” Laurie said. “It turned out he was made of something special. And he was like that the whole way through.”

Saving Henry will be released on March 2. Laurie will read and sign book at Politics and Prose on Sunday, March 7 at 5 p.m. Additional book-reading events and pre-ordering information for the book can be found at www.savinghenry.com

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