Parents Perspective

Their First "Normal" School Year

Their First "Normal" School Year 33891
Emma Whitehead is 8. Alannah Shevenell is 11. And until this September, neither girl—whose families I interviewed for Parents 10 Best Children's Hospitals story—ever had a "normal" school year. Or a normal much of anything. The summer before kindergarten, Emma was diagnosed with acute lymphoblastic leukemia. It's typically one of the easiest cancers to treat. But after months of chemo, she relapsed twice and ended up being the first child in the world to have her body's own infection-fighting T Cells re-programmed to attack her leukemia cells—a treatment developed at The Children's Hospital of Philadelphia. Read more about it here. Her ordeal caused her to missing a lot of kindergarten, all but six weeks of first grade, and much of the fall of second grade.

Alannah also had an uphill battle. When she was 4, a tumor began growing and eventually engulfed her entire abdomen. After trying to fight it with chemo and surgery, oncologists starting discussing end-of-life care with Alannah's grandmother, Debi Skolas. Then a transplant surgeon suggested removing Alannah's damaged organs and replacing them with donated ones. It took about a year to find a match, and Alannah underwent a 14-hour surgery at Boston Children's Hospital. She didn't begin school until third grade—and even then it was just part-time. In between setbacks, she made it to class for some of fourth grade.

Their First "Normal" School Year 33892
This year, both girls started school with their classmates, and their families are happily getting a taste of what it's like to have to worry more about math tests than medical ones.(Emma's first-day-of-school pic is at the top, while, at right, that's Alannah on her first day.) Emma's mom, Kari, told me yesterday: "We appreciate the little things we missed out on in the first few years, like watching her walk into school everyday and asking her about how it went when she comes home. Her biggest problems now are figuring out how to talk us into buying her a pet hamster and having sleepovers with her friends every weekend!" I also learned that Emma joined Girl Scouts—her first after-school activity.

Fifth-grader Alannah is taking up the flute, loved shopping for school clothes (the more bling, the better in her opinion), and is doing very well academically. Debi, who was a warrior in her granddaughter's care, has now turned her energies to her education: "I'm running for school-board president this spring," she told me. "After years of fighting to save Alannah, we are unwilling to drop the ball when it comes to her education."

And one final update: More children with leukemia, who haven't responded well to standard treatments, have received the T Cell therapy that Emma had at The Children's Hospital of Philadelphia. And the results are incredibly hopeful. Eighty percent of these kids are cancer-free 28 days after the treatment!