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Archive for December, 2009

Wednesday, December 30, 2009

The Lost Words

You’ve heard of the Lost Tapes, the Lost Files, the Lost Songs. Cutting room floors are cluttered with all sorts of lost things. Here is a little story I wrote for Saving Henry that didn’t make it into the final book, but I think is worth sharing nevertheless.

Traditionally, my parents host a family Hanukah celebration for me and Allen, my siblings and their spouses, and all the grandchildren. In the winter of 1999, the grandchildren numbered seven, the oldest was six and the youngest two were one year-old. Henry was four at the time.

Together we celebrated the lighting of the family’s collection of menorahs, followed by a delicious homemade dinner by my mom, and an exchange of gifts.  It’s always noisy, festive, and a little more out of control than usual given the presence of a big pile of Hanukah gifts.

It was one of the few times during that particular year when the thoroughly festive atmosphere created by the three generations present, overtook the continuous heartache associated with Henry’s future.  He appeared perfectly normal next to his cousins and was a full participant in the wondrous chaos.

When the time came for distributing the Hanukah gifts to all the grandkids, there was great excitement.  Despite all the noise, chatter, and positioning before the pile of gifts, my dad became mesmerized by Henry’s totally wide-eyed smile, as he stood back a bit leaving room for his younger cousins to push closer to the gifts.  Henry knew that his time would come. My dad decided that Henry needed a little reward for such sensitivity and patience.

Without notice, he took Henry by the hand and led him to an empty room.  He taught Henry to spell P-A-P-A S-Y, his name to all the grandkids.  Henry was asked to spell it three times and he did so perfectly each time.  My dad then led Henry back to the pack of cousins. Nobody had noticed their absence.  As Nana Pat was about to distribute the gifts, a tradition, Papa Sy asked her to wait a moment. My dad then declared that whoever could spell his name would be the first to open his presents.  Before any of the kids had an opportunity to say anything, Henry—carrying a smile as bright as the Hanukah candles—immediately raised his hand, stepped to the front of the crowd, and slowly and carefully spelled P-A-P-A S-Y.  I will never, ever, forget the astonished look on everyone’s face, including Henry’s, as he received a thunderous applause.

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Tuesday, December 15, 2009

Kirkus Review: Saving Henry is a ‘heartrending story…’

SAVING HENRY
A Mother’s Journey

Author: Strongin, Laurie

Review Date: DECEMBER 15, 2009
Publisher:Hyperion
Pages: 288
Price (hardback): $22.99
Publication Date: 3/2/2010 0:00:00
ISBN: 978-1-4013-2356-1
ISBN (hardback): 978-1-4013-2356-1
Category: NONFICTION
Personal recollections of the mother of a child with a deadly disease, revealing the high and lows of his short life and advocating support for embryonic stem-cell research.

Strongin, founder of a foundation that provides programs for children with life-threatening illnesses, gave birth in 1995 to Henry, who had Fanconi anemia, a rare genetic disorder. Stem cells from the umbilical-cord blood of a perfectly matched sibling—a healthy brother or sister whose human leukocyte antigen was the same as Henry’s—offered the best chance for Henry’s survival. When Strongin and her husband learned that a new process called preimplantation genetic diagnosis (PGD) could select a matching embryo by extracting and examining its DNA, they opted to use the available science to try to produce a life-saving sibling for Henry. However, after Congress passed the Dickey Amendment in 1995, embryonic stem-cell research was greatly hampered and their doctor, a leading PGD researcher, lost his job, costing them precious time. Henry was two years old before the process could restart. Strongin kept a journal, recording her hopes and disappointments during her experiences with the PGD process, which involved repeated injection of fertility drugs, in-vitro fertilization and implantation. After four years, nine attempts and thousands of dollars, time ran out, and doctors gave Henry a stem-cell transplant from the bone marrow of an unrelated donor. The author relates not just the medical and emotional ups and downs, but the family’s successful efforts to give Henry, an outgoing boy with a winning personality, a happy childhood. Additional glimpses of Henry appear in lists of his favorite things—collecting marbles, sleeping in tents, root-beer–flavored anesthesia, reading by headlamp—that precede each chapter, and excerpts from postings on her husband’s blog about Henry round out the portrait.

A heartrending story that sends a clear message about the life-saving potential of stem-cell research.


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Friday, December 11, 2009

When Friends Become Superheroes

David Shenk, an author of many books including the soon-to-be-released The Genius in All of Us, blogged about Henry, Allen, and me on the seventh anniversary of Henry’s death.

http://correspondents.theatlantic.com/david_shenk/2009/12/when_friends_become_superheroes.php

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Monday, December 7, 2009

Compassion

The other day I was talking with my dear friend Susan about the premature death of her husband—a death that left a 38 year-old widow with two young sons, Alex and Simon, who were just two and four years-old. Henry met Simon on the first day of preschool and they remained among the best of friends.

I vividly remember the day when I learned of Thierry’s death.

It was October 10, 2000. Like most of the days that proceeded and followed it, Henry, Jack, Allen and I were in a small treatment room in the bone marrow transplant clinic in Minneapolis, waiting for the platelets that would be pumped into Henry’s central line to boost his blood’s ability to form clots, thereby preventing the threat of excessive bleeding. Henry and Jack were laying on their stomachs on the examination table swished up next to one another, each one with his chin resting on his palms, mesmerized by the Pokemon movie playing on their portable DVD player. Allen and I sat in chairs reading the newspaper, grateful that the boys were happily occupied. My cell phone rang. It was my friend Linda calling to deliver the shocking news that Simon’s father, Thierry Imbot, had just died during a freak accident in Paris, France.

Shocked, I took Allen’s hand and pulled him out of the room and into the hallway to tell him about the devastation that had just befallen our friends and talk about how we could possibly be of help, given that we were so far away from home. We agreed that we should tell Henry what happened and talk about how he might be able to help Simon, who for months had been sending Henry encouraging notes along with Pokemon figures in the mail to help Henry feel better during his recovery.

We went back into Henry’s room and I said, “Henry, a very sad thing happened today to Simon. His daddy died suddenly.”

“You mean he can’t ever see his dad again?” Henry asked.

“No, he can’t ever see him again. I’m sure he is very sad right now,” Allen answered.

Henry was quiet for a couple of minutes. “I want to make him feel better,” he explained. “I want to call Simon and talk to him about his daddy.”

Henry was on to something. I like it when people call me to talk about Henry. I like it a lot.

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