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. …