The snow had fallen, and with it an inch of ice, making treacherous the roads leading from Falls Church to Washington, D.C. on Wednesday, Feb. 14. The conditions had closed the schools that morning and persuaded most motorists to stay indoors after the sun had set. The Baumgartner family, on the other hand, was not about to be deterred from their downtown destination. They were bound for a performance of Disney on Ice at the Verizon Center and with their five-year-old daughter, Ava, draped in a pink princess gown in the back seat, it was going to take more than a winter storm to keep them away.
It was not the first hard trip the Baumgartners had made for Ava’s benefit, though in the past the trials were more emotional than meteorological. For the past 1 1/2 years, Ava’s mother, Annisa, and father, Richard, have brought their daughter 10 minutes up Route 50 to Children’s National Medical Center and the care of Doctors Marcie Weil and Jay Greenberg, where Ava receives a series of blood tests, spinal taps and oral chemotherapy. The procedures have been part of Ava’s life ever since she was diagnosed with Acute Lymphoblastic Leukemia (ALL) in August of 2005.
ALL is a cancer that attacks white blood cells, those designed to fight off infection, and is the most common form of cancer among children, accounting for 23 percent of cancer diagnoses among children under the age of 15. It occurs in roughly one of every 29,000 children in the United States each year. Though the condition is curable in approximately 85 percent of cases, the treatments are still daunting for a child to endure. Doctors have surgically inserted a Mediport to allow Ava to receive medicines directly into her body, and every month Ava undergoes a five-day course of steroids to keep up her strength. Then there are the side effects of chemotherapy.
“We are a following a road map. That, we can count on,” Anissa says of her daughter’s treatment.
The chemo has not slowed Ava much mentally (it has been known to cause learning problems for young children). She attends kindergarten at Timber Lane Elementary and attends tap and ballet lessons after school. Physically, her copper colored hair has grown back and now reaches her ears.
Still, the family also faces daily reminders of Ava’s condition that include fever, fatigue, frequent infections, swollen or tender lymph nodes, paleness, easy bleeding or bruising and tiny red spots (called petechiae) under the skin. The winter months are especially difficult for Ava, as her white blood cell counts are low this time of year and with infection, treatment has to be postponed.
For reasons like those, respites like Wednesday’s are a welcome distraction —particularly when they evoke the carefree grin of childhood from the Disney-obsessed Ava. A poster from Tinker Bell hangs in Ava’s bedroom — signed by the fairy herself. Disney princess gowns hang in her closest and movies such as “The Little Mermaid” and “Cinderella” (and their direct-to-video sequels) are frequent viewing. Mulan is currently her favorite character though Cinderella and Ariel are not far behind. Thus, it was no wonder that the wish made by Ava (“anything to do with Disney princesses”) and fulfilled by the Make-A-Wish Foundation would be connected to the Magic Kingdom. Like many children Ava’s age, the fascination with Disney and its beloved characters fostered creativity and imagination at a young age. In Ava’s specific case, transforming into her favorite Disney princesses also helps her escape rigors of her constant medical treatments.
In May, Ava and her family will travel to Disney World, but more immediately the Baumgartners got a personal audience with Mickey and Minnie when the Disney characters came to D.C. for the performance of Disney on Ice.
After slogging through the winter weather (“We dug out and made it,” Annisa Baumgartner laughs.), the family was greeted like royalty in a reception hosted by The Make-A-Wish Foundation and Ava was dressed for the part, sporting her princess gown and a sparkling tiara. The Baumgartners were given prime seats for the performance. Ava watched wide eyed, with the remnants of a giant chocolate chip cookie smeared at the corners of her mouth — her wish was coming true.
But wishes have their limits. After the performance, Ava turned to her mother and asked her a simple question — when would she be able to learn to ice skate?
“It broke my heart to tell her, ‘I don’t know,’” Anissa says.
The ultimate wish for the Baumgartners is to see their daughter grow up hoping the “road map” they follow, the treatments, the chemo, the spinal taps, will ultimately cure their daughter. For the moment, the Baumgartner family is excited for the trip to Disney World, and for the look of joy on Ava’s face
“As I saw her face light up,” Annisa says. “I was so thankful that The Make-A-Wish Foundation gave her this chance to enjoy being a kid and not have to focus on the treatment — for the night.”
