Book details battle against isolating disease
Thursday, September 27, 2012
On June 5, 2009, my youngest son Drew, age 10, was diagnosed with aplastic anemia.
Our lives turned upside down. His bone marrow had shut down from an unknown cause and was no longer producing the cells needed for providing immunity, blood clotting, and oxygen and iron transfer. Thus he was severely immunocompromised, easily fatigued and at risk for bleeding.
We began living in isolation while we waited to see if ATG (a form of chemotherapy) would grant a remission by prompting his bone marrow to “wake up.” Aplastic anemia is a lonely illness and our active family was devastated not only by the diagnosis, but also the isolating lifestyle of immunocompromised living.
Drew could not be in public places and we could have no visitors in our home. I literally went underground, avoiding most contact except texting, something I previously never indulged in.
We were very fortunate to have supportive and generous friends, family, church and community.
During the first five months before Drew’s transplant, simply Googling “AA & children,” I found another mom of an aplastic anemia patient in California.
That chance online meeting led to another mom and so on. Eventually, there were nine of us communicating via email and eventually Facebook. The support of these moms kept me sane and focused.
I wasn’t as alone as I felt and we all had each other’s back. I would refer to us as “Band of Mothers.”
Together we shared joy, fears, and cried on each other’s virtual shoulders. They are the best friends I’ve never met. Someday, I will.
My son received excellent care from Children’s Hospital Boston and the Jimmy Fund, which is the center for children at the Dana Farber Cancer Institute in Boston. We were so fortunate to live close to one of the premiere children’s hospitals in the world and they were also a research center for aplastic anemia. Drew’s team of doctors, nurses and staff were exceptional, especially dealing with a distraught and often teary mom.
The ATG chemotherapy failed and on Nov. 18, 2009, four days after Drew’s 11th birthday, he received his donated bone marrow transplant.
For five months, he sailed through recovery. His team called him a rock star.
We celebrated his 100-day milestone in early March, 2010, which marks the end of the most critical and susceptible time period for recovery after a bone marrow transplant.
Then, just a few weeks later on April 11, a cough that had developed over a couple of days started to increase and I brought Drew to the ER. Within hours he was in respiratory distress, transferred to the ICU and eventually diagnosed with one of the most rare and dangerous complications of a bone marrow transplant: idiopathic pneumonitis syndrome with resulting acute respiratory distress syndrome.
In short, the virus that caused his cough irritated his lungs and because he was still recovering and fragile, his lungs inflamed and hardened making breathing difficult. As all organs in the body rely on each other – within 24 hours he was on life support and in multi-organ failure with little hope of recovery.
We were fighting defeat by the sixth day and refusing to leave his bedside, when something unexpected happened.
We had decided to refuse a recommended lung biopsy, which seemed to be a last effort to find an offending agent that caused Drew’s sudden decline. However, the biopsy would also cause his already critical condition to spiral. The next morning, the surgeon came to say that his lungs had unexpectedly improved so dramatically overnight that he would not recommend the surgery. Less than 48 hours later, Drew was extubated and a miracle kid status was in place.
It’s now been over three years since Drew’s diagnosis and his “third” bone marrow transplant birthday is coming soon. Drew has returned to school full time, is playing lacrosse and returning to his first love, soccer. His recovery has been long and is still ongoing.
Initially reluctant to investigate the miraculous recovery Drew had in April 2011, I eventually began soul searching and last February, over a period of three days, using Drew’s CaringBridge blog as a guide, I wrote a book.
Initially, an exploration of faith and gratitude that my son survived, but it also served as a purging therapy for me – a mom’s perspective of watching a child survive a devastating illness and then courageously transition back to the role of a normal kid, now age 13.
I believe that our story serves as an instrument of hope and inspiration that miracles can happen. It’s my hope that readers will be moved by Drew’s story and join the registry and encourage others to do the same. My own role is transitioning from a mom of a sick child to an advocate for aplastic anemia awareness and the bone marrow registry.
I named the book “Anatomy of a Miracle.” I have tried to incorporate guidance for new families affected by aplastic anemia, an insider’s view to our isolation and eventual re-emergence of a family back into the real world. Not an easy task when you live in isolation for nearly two years. I now intend to use the book as a tool to promote awareness of aplastic anemia and the bone marrow registry. Drew’s image and story will be featured in the next “Be The Match” campaign and I was asked to write about Drew for the October publication/website for the AA/MDS International Foundation. My advocacy work is just starting. The support I feel already is overwhelming.
I want the book to show 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. I have been contacted by other families all over the world and now so many are communicating and interacting. Most importantly, I have again learned that I am not alone.
“Anatomy of a Miracle” is not just a title, it’s our life.
Jennifer M. D’Auteuil of Amherst is a married mother of three teen boys. This is her first book. It is available at Amazon, Barnes & Noble and Westbow Press. Visit www.anatomyofamiracle.com.