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Saturday, April 6, 2013

Amherst mother’s book describes her son’s ‘miracle’ recovery

Dean Shalhoup

Something was slowly killing Andrew Liam D’Auteuil. And although he lay in one of the best pediatric hospitals on the planet, nobody, no matter how deeply they searched, could say what.

Jennifer and Peter D’Auteuil (pronounced DOUGH-tay) floated through the hours, alternately grieving, denying, praying, wondering. How, they kept asking, could this 11-year-old kid have gone from playing and riding his bike to needing a machine to breathe for him in less than 24 hours? ...

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Something was slowly killing Andrew Liam D’Auteuil. And although he lay in one of the best pediatric hospitals on the planet, nobody, no matter how deeply they searched, could say what.

Jennifer and Peter D’Auteuil (pronounced DOUGH-tay) floated through the hours, alternately grieving, denying, praying, wondering. How, they kept asking, could this 11-year-old kid have gone from playing and riding his bike to needing a machine to breathe for him in less than 24 hours?

The harrowing episode, which played out three years ago next week, wasn’t even the first health scare that leapt from the shadows at Drew and his family.

Ten months earlier, after a long holiday weekend of soccer games and other normal kid stuff, Drew discovered a rash and asked his mother, an APRN – advanced practice registered nurse – who specializes in pediatrics, to take a look at it.

“You’re fine. Time for bed,” Jennifer D’Auteuil recalled telling her son after glancing at the small patch of red that could have been caused by almost anything – but surely nothing serious.

The next day, a Tuesday, Drew demanded she take another look. The rash was everywhere. Still, Drew went to school, took part in its spring field day and came home a little more tired than usual.

Mom took him to his doctor on Wednesday. By Thursday, Drew lay in Boston Children’s Hospital. On Friday, he underwent a bone marrow biopsy. The diagnosis: aplastic anemia.

Suddenly, Drew was one of the estimated 300-600 Americans who hear that diagnosis each year.

That Wednesday visit had set in motion a blurry succession of events that the D’Auteuils will never forget – nor do they want to.

Jennifer D’Auteuil, although reluctant at first, decided – largely at the urging of her father – to start putting her feelings into words. The floodgates opened. An improbable fusion of words and emotion filled D’Auteuil’s computer screen over and over again.

The result was “Anatomy of a Miracle: Drew’s Story,” a roughly 150-page softcover book D’Auteuil published several months ago through Indiana-based WestBow Press.

“I resisted the idea of a blog, because people only do that when bad things are happening,” D’Auteuil said this week in the family’s busy Amherst home.

But spending day after day, night after night in Drew’s hospital room with a laptop an arm’s length away, she began to fill time with a few Facebook posts.

“I started to feel relief,” D’Auteuil recalled of her little epiphany. “Pretty soon I was sitting there Googling aplastic anemia with the names of states.”

Her first score was a California mother of a child with “AA,” as those close to the disorder call it. Together, they searched cyberspace for kindred spirits. In short order, a new Facebook group called “Band of Mothers” debuted, nine members strong.

Her new cyberfriends, D’Auteuil says, just may have kept her from going over the edge. Sequestered at home for the better part of 20 months, living in isolation from the world because of Drew’s high susceptibility to infection, it was a sentence she’d gladly serve again to save one of her loved ones.

“I was so alone. Those moms saved me,” D’Auteuil said softly.

Just days before Drew was stricken, D’Auteuil was walking Ginger, their German shepherd – she recounts that day in the book – and reflecting on how lucky she and her family had been: “We were very busy, but very happy.”

“That particular day is one that has come back to me very often in the last few years,” she wrote in the prologue to “Drew’s Story.”

In retrospect, taking time that day to count her blessings would become an integral part of her and her family’s ability to summon the strength to see Drew through his illness.

“I needed to recognize how blessed we were in order to handle what was about to come our way,” she wrote.

Eventually, doctors at Children’s came to realize Drew would need a bone marrow transplant. His “angel” was a German man named Steven Manro: “Our hero … without your generous gift of life, we wouldn’t have such cause to celebrate. Forever in your debt,” D’Auteuil wrote in the book.

The predictable ups and downs marked the next weeks and months of Drew’s life. Thanks to what D’Auteuil calls a very accommodating school system – and the magic of Skype – Drew was able to keep up with his classes without the need to repeat any grades.

Team D’Auteuil was formed. D’Auteuil’s blog, a catharsis for her and a news source for friends and faraway relatives, flourished. To maximize their precious time, Peter and Jennifer D’Auteuil came up with a plan to rotate 24-hour shifts between home and Drew’s room at Children’s.

It was a big step for a mom who hated to leave her ailing son’s bedside for even an hour.

Drew had been piling up a slew of victories, albeit slowly and sometimes with a struggle, on his way to recovery when he crashed out of the blue that April day three years ago.

How the D’Auteuils coped, how they blended their belief in science and medicine and specialists’ intuition with faith and believing is the crux of “Drew’s Story.”

Today, without an iota of prodding, Drew’s older brothers – fraternal twins Ryan and Kevin, Souhegan High School seniors – are basing their senior projects on aplastic anemia and their brother’s journey.

“We’re so proud,” D’Auteuil said of her sons’ choices. “They were typical teens, 14, 15, 16 when all this was going on with Drew. You really don’t know what they’re thinking at that age. But they came up with this on their own.”

Ryan is hosting a bone marrow drive, while Kevin is compiling a “survival guide,” of sorts, a how-to aimed at siblings of children and teens with aplastic anemia.

It was just over a year ago that D’Auteuil sat down with all of her posts and went to work, according to an online overview of “Drew’s Story.”

Dean Shalhoup’s column appears Saturdays in The Telegraph. He can be reached at 594-6443 or dshalhoup@nashuatelegraph.com. Also, follow Shalhoup on Twitter (@Telegraph_DeanS).