When Jen’s son Drew was diagnosed with aplastic anemia, a blood disorder, their entire lives changed. In this blog, Jen describes how she and Drew coped with the disease, treatment and recovery, as well as the care they both received at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. (Click the link to see the center’s new website.)
By Jen D’Auteuil
When my son Drew was diagnosed with aplastic anemia (AA) at 10 years old, our lives turned upside down. His bone marrow had stopped producing the cells that he needed for iron and oxygen transfers, for blood clotting and fighting off infection, making him very sick very quickly.
All of a sudden my active and social little guy was sidelined—he tired easily and was at constant risk of bleeding or getting sick, so he needed to be kept away from almost everyone he knew. He was started on a chemotherapy regimen called anti-thymocyte globulin (ATG), which doctors hoped would reactivate his bone marrow. In the meantime, Drew and our family went into isolation because he couldn’t be in public places, and we had to ban visitors from our home. Our only real contact with the outside world was by texting. (Something I had never bothered with; but a little time in isolation can change your mind!)
For the next few months we had to sit in this medical exile to see if the AGT did its job. It was a difficult time, but we were very fortunate to have a supportive and generous group of friends, family, church and community members to lean on.
As time went on, I found myself Googling “AA and children” hoping to find another family that could relate to our struggle. Through my search, I met another mom whose child had AA and through her, I met another and then another after that.
Eventually, we formed a small support group of nine women who communicated daily through email and Facebook. The strength of these women kept me sane and focused during the hardest days. I was isolated, but I wasn’t alone—an important distinction for anyone who has ever lived in that situation. I came to refer to the group as the “Band of Mothers,” and together we shared our joy and fears, and cried on each other’s virtual shoulders. They became the best friends I have yet to meet—but someday, I will.
When we did leave the house, it was only so Drew could be seen by the doctors at Dana-Farber/Boston Children’s. I’m truly thankful we lived so close to one of the premiere children’s hospitals in the world, because not only were they treating Drew, but they’re also leaders in the field of AA research. Knowing that Drew’s team of doctors, nurses and staff were so focused on his disease made the care that much better. (Not only that, but they always took extra time to deal with a distraught, and often teary, mom.)
“I came to refer to the group as the “Band of Mothers,” and together we shared our joy and fears, and cried on each other’s virtual shoulders. They became the best friends I have yet to meet—but someday, I will.”
Unfortunately, the AGT therapy never worked for Drew. So just four days after his 11th birthday Drew received a bone marrow transplant (BMT). For five months, he sailed through follow-up treatment. He fared so well his team called him a recovery rock star. But just a few weeks after we celebrated his 100-day post-transplant anniversary—a big milestone for BMT patients, because it marks the end of the most critical recovery period—things took a turn for the worse.
It started with a cough, but within days, Drew could barely breathe. Within hours of being seen at the emergency department, Drew was transferred to Boston Children’s Intensive Care Unit (ICU) and was eventually diagnosed with idiopathic pneumonitis syndrome, one of the rarest and most dangerous complications of BMT. As doctors monitored him, they figured out that the virus that caused Drew’s cough had also irritated his lungs, and because he was still recovering, his lungs became inflamed and hardened by the virus. As his oxygen levels dropped, his other organs started to struggle. Within 24 hours, he was placed on life support, facing complications from multi-organ failure with little hope of recovery.
Things were looking bleak, but after nine days on life support the unimaginable happened. Drew suddenly did a complete turnaround and began to get better. After a week in the ICU, Drew suddenly was breathing on his own; his miracle-kid status was now firmly in place.
Just a few months ago, we celebrated Drew’s third “BMT birthday,” and he’s doing great. He’s attending school full time, playing lacrosse and is back on the soccer field—his true sports love.
Watching my son go from healthy to sick to critical care and then back to healthy again was an experience that’s difficult to grasp, never mind the difficulty in trying to explain it. But as Drew grew healthier, a part of me felt compelled to tell our story. Using Drew’s CaringBridge blog as a guide, I wrote a book called “Anatomy of a Miracle: Drew’s Story.” It’s about watching your child survive a devastating illness and then courageously transition back to the role of a normal kid while exploring the faith and gratitude that comes with it. For us and many families like ours, “Anatomy of a Miracle” isn’t just a book title, it’s our lives.
I want our story to serve as an instrument of hope and inspiration; proof that miracles do happen. I’d also like to believe that our story might inspire people to sign up with the national bone marrow registry. (Without a marrow transplant, Drew would have died. We’re so grateful that we’ve been working with the National Marrow Donor Program’s Be The Match campaign.)
But more than anything, I want the book to be a testament that you can never give up hope. Hope fuels the soul and feeds your inner strength. I created a Facebook page called “Band of Mothers in the fight against aplastic anemia” in honor of my “mom-rades” in this war. Other families from all over the world have contacted me through the page, and now so many of us are communicating and interacting—reminding us all that isolated or not, none of us is alone when facing AA.
To learn more about how Dana-Farber/Boston Children’s helps kids like Drew with blood disorders, please visit their website.