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Saturday, November 6, 2010

When I Say “Barons,” You Say…

Some of my fondest childhood memories are from my times at Bethesda Chevy Chase High School in Suburban Maryland. Adorable boyfriends, field hockey victories, late nights at Tastee Diner with food expertly prepped by Dudechick, toga parties at Jerry’s Sub Shop, Teen Club forays to Assateague and Kings Dominion. In summary, good times, good times.  While my coaches may have sung my praises, and my parents were nearly always proud, certain teachers found me somewhere between distracted, unserious, and even incredibly frustrating. In particular, my English teacher Ms. Heard would be shocked to learn that I wrote a book, one that just got a wonderful review in B-CC’s fantastic newspaper, The Tattler, now celebrating its 84th year of excellence. The fact that I am considered “Illustrious” (see headline below) would simply boggle Ms. Heard’s mind.

BaronNation: A Series of Interviews with B-CC’s Illustrious Alumni: A Sit Down with Laurie Strongin, author of Saving Henry

By Marnie Klein

At BCC we have a tradition of producing excellent writers and thinkers.  Included in that tradition is Laurie Strongin, BCC class of 1983, author of the bestseller Saving Henry.  Unlike most authors, Strongin does not just possess a natural talent for the written word, but also a heart-wrenching true story.

Her son Henry spent his short life battling a rare and fatal disease.  His fight with Fanconi anemia transformed Strongin’s world as she was thrust into a world of complex medical procedures and worrying if her child would even live long enough to attend kindergarten.  Laurie and her husband were committed to saving Henry’s life.

In fact, they became the first parents in the world to use preimplantation genetic diagnosis, or PGD, to produce another child who might be able to provide stem cells to help Henry survive.  Their decision to do so sparked medical and ethical controversy. The idea of planning a child and producing a donor divided many people.  However, Strongin knew that PGD was the best chance of saving Henry’s life.

I got the opportunity to meet Ms. Strongin at a local Barnes and Noble.  Dressed sharply and smiling, she fondly remembered her time at BCC.  She ran track, led the field hockey team, and wrote for the Tattler.

Like many of us, she had no idea what she wanted to do with her life.  After attending the University of Michigan, Strongin traveled to Colorado to pursue her love of cycling.  It wasn’t until after Henry was born, however, that she started writing about her experience with his disease. “Writing can be a very good, therapeutic outlet”, she says. Strongin said that writing helped her process and organize what she was thinking. Her journal entries, combined later with emails she wrote to family and friends, eventually became Saving Henry.

During the interview, I asked Strongin to compare Saving Henry to My Sister’s Keeper, a fictional book by Jodi Picoult about a family that uses PGD to help save a daughter dying of cancer.  Strongin explained that Jodi Picoult was actually inspired to write her bestselling novel based on a New York Times article detailing the struggle of the Strongin family and another family contemplating PGD. “I think it’s very powerful to read My Sister’s Keeper and then read Saving Henry, and compare the works,” Strongin said.  However, she went on to caution, “I think it’s really important to understand the difference between fiction and non-fiction. I felt [that]…the mother [in My Sister’s Keeper] really didn’t seem very compassionate….and the children didn’t feel like they were loved for themselves.”  Strongin worries that the characters and situation in My Sister’s Keeper might reduce the understanding of PGD to “creating a baby for its spare parts,” and seem “really scary, not lifesaving.”

“Henry was an incredibly strong, courageous, and really fun-loving kid”, Strongin remembers.  Though she knew he had to receive medical attention to get better, she also believed in the importance of having fun in order to survive, and perhaps improve.  In one instance she wrote about in the book, Henry was in the hospital when his doctor wished him a good weekend.  Henry then questioned how his weekend could be “good”, because he would be stuck in the hospital during his friend’s birthday party.  Exchanging looks, the doctor and Ms. Strongin allowed Henry to be discharged from the hospital for a few hours to attend the party. “It was all about getting better”, Strongin says of Henry’s life.

Unfortunately, despite Strongin’s countless efforts, Henry passed away at age seven. His short life not only impacted the lives of everyone who knew him, but resulted in medical discoveries to save other lives.

Inspired by Henry, Ms. Strongin and her family launched an organization, Hope for Henry. “[It] really acknowledges the importance of laughter and happiness, even while you’re fighting in the hospital to get better”, she explains.  Today, Strongin and her many volunteers hold everything from superhero parties to carnivals to raise the spirits and pamper hospitalized children.  Kids can get involved too, she says, by creating “birthday boxes” full of treats and toys for sick children.  Strongin also suggests that kids hold neighborhood drives to collect DVDs and books to bring to a hospital.  “It’s pretty isolating, being in the hospital, so a group will come in, and remind you that they know you’re there, and bring the outside world to you….it’s really comforting.”

Saturday, November 6, 2010

Michigan Alumnus Magazine Review of Saving Henry

The review below just appeared in the Early Fall 2010 “Michigan Alumnus” magazine published by the University of Michigan (Go Blue!) Alumni Association of which I am a member. I graduated in May 1987 and am excited to return to Ann Arbor later this week as part of my participation in the Jewish Book Network’s fall of 2010 book festival.

This is the story of Henry Goldberg, a fearless child born with a genetic blood disease, and his pioneering parents, Laurie and Allen, who will push the limits of medical science attempting to save him. It’s also the story of others who fought for him: a team of leading specialists along the East Coast, in Detroit and in Minneapolis, and a devoted circle of family, friends, colleagues and teachers at home in the Washington, DC, area.

The hope for Henry is that a stem cell transplant from the umbilical cord of a sibling donor will wipe out the disease, Fanconi anemia. For that to happen, Laurie needs to give birth to a healthy child who doesn’t have the disease and whose human leukocyte antigen (HLA) is a perfect match for Henry. The probability of that happening in a natural pregnancy is a mere 18.75 percent.

Medical science offered the promise of greatly improving those odds, but not without creating ethical and political controversy. Through a process called preimplantation genetic diagnosis, which combines in vitro fertilization with genetic testing before embryo transfer, it is possible to screen for a healthy child who is a perfect HLA match for Henry. The only problem is that it has never been done before. Laurie, Allen and their medical team would be the first to attempt it.

What follows is a detailed account of their exhaustive efforts to make the process work. Nine times Laurie attempts it, and nine times it fails. Yet she balances this painful medicine with the everyday joys of motherhood.

Giving her narrative its great humanity and poignancy is her ability to fold the ordinary moments of her life into this mixture of extreme medicine, emotional chaos and tested faith. It’s her attention to the smallest detail—whether describing a meal or simply telling us that she and Henry used grapes for eyes when building a snowman—that reminds us how much of life is made up of such moments.  Even in the face of imponderable tragedy, life is to be experienced.

And Henry does so fully and unflinchingly. “Bring it on” or “let’s get it over with,” he stoically tells his doctors before each poke or transfusion. Incredibly, Henry never sees himself as sick, which makes him loved all the more by his legion of devoted caretakers, friends and admirers. In his seven short years, Henry has two dates with his nurse, travels to Spain and Disney World, and meets President Clinton, Batman and Cal Ripkin Jr.

Although Henry succumbs to Fanconi anemia, he remains valiant until the end and, ultimately, his parents’ dogged efforts at preimplantation genetic diagnosis paves the way for other families. At one point in the story, following yet another medical emergency, Henry refers to himself as “the boy who lived.” In this, his mother’s loving tribute, he is very much alive.

By Steve Rosoff, MA ‘87

Monday, May 31, 2010

Curled Up With a Good Book

The review below is from “Curled Up With a Good Book.”

Losing a child is the saddest experience that any parent can imagine. To try to save a child is an immense act of faith. To live beyond such life-altering events and tell the tale for the guidance and benefit of others is a hallmark of courage. In Saving Henry, we find all these elements combined.

Laurie Strongin was a rather typical first mom when she gave birth to a son who was perilously ill, whose prognosis was grim. Little Henry was diagnosed with Fanconi anemia, a genetic disability common to Jewish Ashkenazi parents. Allen and Laurie were determined to beat the odds with Henry, odds that predicted that within the first seven years he would develop fatal bone marrow failure. The only ray of hope was that a perfect marrow donor could be found, and that description fit only one person perfectly – a sibling as yet unborn. Laurie, with her husband’s constant support, underwent a procedure called PGD (preimplantation genetic diagnosis) to try to produce a sibling who could save Henry by the donation of cord blood.

The risks were known and daunting – the new child would have to be conceived via IVF using a specially selected embryo before Henry’s crisis occurred. PGD is a controversial procedure with political as well as scientific implications, since it involves harvesting the mother’s eggs and the father’s sperm, creating embryos, then destroying the ones that will not make the perfect match needed for the purpose of saving a life. Making herself a guinea pig for this drawn-out process was physically painful for Laurie and emotionally draining for both parents. Lots of parents wait to get pregnant, but the Strongins knew they had a time limit. The new baby had to be conceived and the embryo implanted, followed by pregnancy and childbirth, all to win a race with the health crisis of their beloved firstborn.

What lifts this book out of the grief and turmoil of losing a child is the child himself, the boy everyone wanted to save. He was a dynamo of childlike energy and determination, despite the illness that constantly tracked him and brought him to low points and lower points again and again. He idolized Spiderman and his characteristic reaction to the painful medical procedures he was forced to undergo was an astonishingly brave, adult cry of “Bring it on.”

Partway through the process of trying to produce a sibling for Henry, the pioneering researcher in whom the Strongins’ hopes were vested lost his job. In the end, though the Strongins did have two more sons, the donor for Henry was an unrelated person, and Henry finally succumbed to Fanconi at the so-young age of seven.

The book is told by both parents, with Allen contributing a tough and tender portrait of Henry after his death. Laurie we hear from throughout, chronicling but not complaining about the many agonies she suffered as a woman trying desperately to get pregnant in order to save a dying son. She also keeps up with Henry’s life, loves and favorite things, conveying something of his spirit to those who will never get to meet him. She and Allen spearheaded the creation of the Hope for Henry Foundation to continue the fight for more scientific investigation of his rare disorder and push for wider acceptance for PGD, embryonic stem-cell research and related issues. Through the Foundation, Henry lives on, with gifts of his “favorite things” to ill and endangered children.

Originally published on Curled Up With A Good Book at www.curledup.com. © Barbara Bamberger Scott, 2010

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Saturday, May 1, 2010

Healthy Attitudes

Below is a review of Saving Henry that appeared in The Jerusalem Post on April 23, 2010.
23/04/2010 16:58

It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv. And I’m crying.

Saving Henry
By Laurie Strongin | Hyperion | 271 pages | $22.99

It’s 4 a.m. Eastern Standard Time or 11 a.m. Israeli time on this seemingly endless US Airways flight from Philadelphia to Tel Aviv.

And I’m crying.

I’ve just reached page 246 in Laurie Strongin’s Saving Henry: A Mother’s Journey, and her oldest son Henry Goldberg has just died.

It’s not as if the seven-year-old’s death came as a surprise – it was clear almost from the beginning of the book that the youngster’s chances of survival were slim – but I found Strongin’s matter-of-fact chronicling of her and her husband’s almost mythic struggle to save their child from the killer genetic disease Fanconi anemia moving in the extreme.

Or maybe my tears stem from the presence on the plane two seats away of Noam Mechtinger, my youngest grandchild, who is only somewhat younger than Henry when he died.

The feelings I often experience when reading a Holocaust memoir – how did the person manage to survive in the face of such extreme adversity and hardship and would I have had the inner strength to make it – play out here.

I can’t help but wonder if my wife and I would have possessed the same amazing fortitude, the singlemindedness to persevere in the struggle to save one of our own children that Laurie Strongin and Allen Goldberg displayed.

It’s not only that their oldest child’s illness consumed the lives of the Washington, DC, family with endless trips to hospitals and doctors’ offices in Washington, Baltimore, Minneapolis and Hackensack, New Jersey. Or that her husband decided to forgo the search for a new job after being laid off to be at his son’s side during his long ordeal.

Or that as a result of a new medical procedure, the couple tried nine times – in vain – to make an embryo, through in-vitro fertilization and genetic testing, that would produce a disease-free child whose stem cells could save Henry’s life. The anguish they suffered cannot be quantified, but the scope of their efforts to save their son can be appreciated in some of the numbers provided in the book. In four years of IVF, Strongin had 353 injections, produced 198 eggs but still did not get pregnant. They spent almost $135,000, most not covered by health insurance.

But they were not only driven by medical realities, but also by an obsession to provide their son with days of joy, perhaps to try to compensate him for his suffering (for example, he spent a whole year in isolation) or maybe because they feared his days would be few. As a result, Henry met president Bill Clinton, Baltimore Orioles star shortshop Cal Ripkin and the boy’s biggest hero, Batman (an actor at the Six Flags America theme part near their home). And the family spent many days on special trips to Disney World, other theme parks and toy stores.

In the end, the couple endured the unendurable. “We gave it all we had,” Strongin writes. “We worked with the world’s best doctors. We hoped. We were brave. We persevered. And despite all that it didn’t work.”

But because of their experience and the inspiration they provided to others, other parents tried the new medical procedures and their children lived. And in 2003, Strongin and Goldberg founded the Hope for Henry Foundation, which provides sick kids with fun and entertainment.

This book touches on the struggle in the US over stem cell research, but it is really about a mother and a father’s heroic efforts to save their child.

Although Strongin and Goldberg failed to save Henry, they took part in an experimental procedure that apparently has brought closer the day when fewer children will fall prey to this terrible disease.

Most important, in so doing, they fought the good fight. What more could any of us want inscribed on our tombstone?

The writer is arts editor at Washington Jewish Week.

Friday, March 26, 2010

Overcoming Trepidation

I’ve heard from so many people about their trepidation surrounding reading Saving Henry. Life is tough.It’s filled with sadness. It’s hard to imagine spending what little time you have to yourself reading a book about a little boy who dies. But then something happens. Someone recommends the book. You hear about the book on the radio or on TV. You read about the book.

You buy the book.

Below is an email I got today from a recent Saving Henry book party host that so beautifully communicates one of her guest’s hesitation about reading Saving Henry and her reaction once she makes the decision to do so.

Boy, was I not going to read that book. I was certain of it, and even had trepidation about the party, but hey, I like you guys, and I like a party. Still, who wants additional tsurris; there’s enough sadness. But that Laurie was just so positive and appealing and smart that I really enjoyed her presentation, even with a tear or two rolling down my cheek. I bought the book, of course, thinking, well, it’s the right thing, but still not thinking I would read it. But maybe thinking it a little less. Then I left it on a counter near the kitchen where I would keep looking at it. I did not put it away where I could forget about it. Instead, I kept thinking about Laurie and how she presented this and what an incredible story it sounded like. Before I knew it, I cleared away a little chunk of time and read it from last night until this morning.

It reads like a mystery that you know the end of, but still need to find out how to get there.

It reads like an incredible love story that, again, you know has a sad ending, but was so worth it all the way.

It reads like a family chronicle of strength and support in a very Jewish way, for me.

It reads like an adventure story filled with Funland, Disney, Pringles, M&M’s, and lots of ice cream.

It completely reads like a true hero story, and while I know it’s Henry, it is so so Laurie. She keeps marveling at his courage, his attitude, his positivity, and while I know kids come with their own little packaged personalities, there is nurture involved, and he gets so much of his approach to life from her. That is clear as day.

It’s not maudlin. I did not cry reading it. I was too interested. She doesn’t try to pull our heartstrings, but they are pulled nevertheless. Now, digesting it, writing this to you guys, thanking you for putting Laurie and this book in my path, now I am crying. For her loss, for all of our loss. For gratitude. Since my mom got sick, we have been focusing on living each day the way Laurie talks about it. Maybe not as many Pringles, mind you, but lots of theater and dinners and spending buckets of time together and laughing. My Mom has taken whatever energy she has and gone on vacations with my dad, taken music classes, and, most importantly, continued her work on the Otis Beautification Committee, filling huge barrels with flowers all over the tiny town of Otis where they live in the Berkshires. Even as she is leaving, she is making the world a better place, as did Henry, as does Laurie.

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Friday, March 26, 2010

Publishing Executive, Soccer Mom and Much More Weighs In on Saving Henry

On her blog, ConfessionsOfAnItGirl.com, Ellen Gerstein ponders publishing, marketing, social networking, life as a working soccer mom and more. Today she turned her thoughts to Saving Henry. Here’s what she had to say:

This weekend, I had the privilege of joining a group of local moms to celebrate the publication of a new book.  Laurie Strongin’s ”Saving Henry: A Mother’s Journey” published at the beginning of March, and to mark this most momentous milestone, she has been on the road talking to groups of people and the media about Henry’s story.  Sunday’s party was hosted by Lisa Belkin and Allison Fine at Lisa’s lovely home.

Who was Henry and why did he need saving, you may ask?  Henry was Laurie’s son, who by all accounts was a charming, fun-loving little boy who had the misfortune to be born with a rare, almost always fatal disease called Fanconi anemia.

Let’s get this out-of-the-way right off the top….when you hear that a book has a child dying in it, your first instinct isn’t OH MAN, LET’S RUN OUT AND BUY THIS SO I CAN READ IT IMMEDIATELY!!!  Yet after meeting Laurie and learning a little about Henry, it’s my number one read on my Kindle right now.   Like Vick Forman’s “This Lovely Life“,  it’s a story about a family facing every parent’s worst nightmare.  But somehow, in talking about the lives that were lost, you as a reader you come out of the book hopeful and joyous.

Saving Henry tells of Laurie’s  family’s efforts to find a cure for Henry, which unfortunately was not to be.  But it’s more about how this life that was cut so short mattered greatly.  There are tons of stories about how he was as a boy, and you can only imagine what kind of man he would have turned out to be.  His life inspired the Hope for Henry foundation, that does so much good for children in need.

I was honored to be a part of this special event, and hope you will check out the following links to learn more about Laurie Strongin and her son Henry…dare I say that this story of a most amazing mother would make a perfect Mother’s Day gift?

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Thursday, March 25, 2010

Saving Henry is Slate’s “Book of the Week”

Below is a piece by Hanna Rosin that appeared on slate.com, designating Saving Henry as the “Book of the Week”

A decade ago, Laurie Strongin and her husband, Allen Goldberg, lived on the edges of reproductive technology. Their son Henry was born with a rare and fatal disease, Fanconi anemia. They used a method called preimplantation genetic diagnosis (PGD) to try to conceive another child who would not have the disease and be a bone marrow donor to Henry. The ordeal, chronicled in the New York Times Magazine, made them objects of fascination and sometimes horror: Was it OK to have one child to save another? Was this a distortion of parental love or its ultimate manifestation?

In her new book, Saving Henry, Strongin answers the question. Her answer is, essentially, how could you not try? She convinces us of this by lovingly recreating Henry’s childhood in its mundane and dramatic moments, making it clear that if you see the picture from inside the intimacy of a loving family, no parent would do it any differently.

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