Mom's blog about son's rare illness led to new book
AMHERST -- As her son Drew battled against a rare disease, Jennifer D'Auteuil struggled to live each day with the fear that her youngest boy might be taken from her at any moment. But now that her son is stable, D'Auteuil is sharing her family's story with others to inspire hope that miracles can happen.
Drew, 14, an eighth-grader at Amherst Middle School, fell ill in July 2009 with aplastic anemia, an extremely rare disease that prevented his body from producing red and white blood cells and platelets, and opened him up to infection, uncontrollable bleeding and other life-threatening conditions.
He went through chemotherapy, a bone marrow transplant, radiation and other invasive therapies to cure the illness. For months he divided his time between isolation at home, where risk of infection was on everyone's mind, and at Children's Hospital in Boston, where he received treatment.
Throughout his illness, at the urging of friends, Drew's mom, Jennifer, blogged about the experiences her family was enduring.
"I was reluctant to write the blog because it meant that I had to admit he was sick," said Jennifer, a nurse practitioner in pediatric care at Children's Hospital at Dartmouth. "If you read those early blogs, they were very raw, superficial and pragmatic."
But a near-death experience with Drew five months after he received his bone marrow transplant changed Jennifer because it was then that she discovered miracles do happen.
By April 2010, Drew was well on his way to recovery, the bone marrow transplant apparently having taken well. But when he suddenly developed a cough, he was rushed to the hospital and diagnosed with pneumonia.
"For the next four hours I watched him decline," said Jennifer. "By morning, he was in complete respiratory failure, and within 24 hours, he was in multi-organ failure."
The next seven days were excruciating as doctors tried every possible solution. At one point, the outcome looked so bleak that the parish priest was called in. Drew was scheduled for a last-ditch surgery, but the night before the surgery, something changed.
"That morning, the surgeon walked in with a smile on his face," Jennifer said.
Over the course of the night, Drew had started to recover. Within 48 hours, he was completely out of danger.
"And we still don't know why," Jennifer said. "It was miraculous."
After that incident, Jennifer said, her blog became her vehicle for coping until one day her father recommended that she take some of what she had written and turn it into a book.
In February 2012, she sat down with her posts and went to work. She managed to pull together "Anatomy of a Miracle" in just three days.
Writing the book was cathartic for Jennifer, providing another outlet to share the story of a miracle and say thank you to God for saving Drew, who is back skiing, playing lacrosse and soccer, and bringing home A's.
But the book also is intended to help others find the support they need when experiencing something as rare as aplastic anemia.
"One night when we were in the hospital, I was Googling and came across a mom in California who was going through the same thing," Jennifer said. "From there, we found another mom and another, and eventually there were nine of us from across the country emailing and Facebooking. They were a lifeline because nobody else knew - nobody else understood what I was going through."
Through her website, www.anatomyofamiracle.com, Jennifer brings people together who need support.
"I feel compelled to give back," she said. "My ambition is to do as much as I can to help people who are facing this."
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