“It’s eye-opening to realize how fragile life really is when you’re young.”
Drew D’Auteuil certainly knows whereof he speaks. He is a 16-year-old animal-loving, skiing, rowing, volleyball-playing, honor roll student and licensed driver with braces and a shock of red hair. In April 2010, five months after receiving a stem cell transplant to treat the blood disorder severe aplastic anemia, Drew suffered rare, life-threatening complications.
One day Drew was biking with a friend near his New Hampshire home, suffering little more than a mild cough. The next day he was in the intensive care unit at Boston Children’s Hospital, intubated because of respiratory failure. Soon other organs were failing, too. Quick action by ICU and transplant clinicians saved the boy’s life.
Although the donor stem cells that would replace his failing bone marrow with healthy marrow were engrafting well, Drew developed Idiopathic pneumonitis syndrome (IPS), a dangerous inflammation of the lungs that occasionally arises in transplant patients who receive stem cells from an unrelated donor.
“IPS is a very rare but known complication of stem cell transplant, with a high fatality rate,” says Dr. Allison O’Neill, Drew’s pediatric hematologist/oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “Drew’s ICU and transplant teams showed a lot of foresight. They gave him a drug that dampens the abnormal immune response thought to contribute to IPS, and he started on his long road to recovery.”
Drew is diagnosed with aplastic anemia
Drew’s original condition — aplastic anemia — occurs when the bone marrow produces too few oxygen-carrying red blood cells, too few infection-fighting white blood cells and too few clot-promoting platelets.
“I remember I would get weird bruises, and I would have red dots all over,” Drew recalls. A blood test at a regular check-up in June 2009 revealed the bone marrow failure syndrome.
Over the next 11 weeks, Drew was admitted to Boston Children’s 14 times and spent no more than 20 hours at home at a time. He was transfused two or three times a week. In November 2009 he had the stem cell transplant, after which he was home in isolation, able to see friends only outdoors and Skyping and working with a tutor to keep up with school work. IPS added another 10 months to his period of isolation — including weeks of using a walker and struggling to even turn his head.
None of this dramatic history is evident on first meeting Drew today.
He is a junior now at Sowhegan High School in Amherst, NH, taking world literature and history, chemistry, anatomy and physiology, pre-calculus and Spanish — and AP psychology online. “I like to push myself,” he says. Drew rows on his school’s crew team and works part-time at the Boys and Girls Club and looks forward to his 17th birthday when he’ll finally be old enough to work with cats and dogs at the Animal Rescue League, where he volunteered with rabbits and guinea pigs over the summer.
In April, Drew and his family traveled to Germany to meet Drew’s donor, Steven Manro, who says, “I know it’s a great gift for the D’Auteuils, but it was a rather small act for me.” He and his wife and 2-year-old daughter hosted a barbecue for the visitors. “It was like meeting a friend for the first time,” Drew says.
Today, Drew gets physical therapy for a mild case of graft-versus-host disease that causes some stiffening of his body.
“It’s definitely life-changing physically and mentally. I have a different outlook than other kids my age. I don’t take things for granted,” Drew says. “I’m not a physical powerhouse. Just doing sports is remarkable — and something I never thought about before this happened.”
Learn more about the Dana-Farber/Boston Children’s Stem Cell Transplant Center.