Avalanna Routh received a special valentine yesterday. The 6-year-old from Merrimac who is being treated at Dana-Farber Cancer Institute for a rare cancer has long dreamed about meeting Justin Bieber. At the Jimmy Fund Clinic last year, her family gathered for a staged wedding between her and the popstar.
On Monday, she met her faux hubby during a visit to New York. Bieber tweeted a photo of himself planting a kiss on Avalanna’s cheek and said that meeting her was the best part of his day.
“#MrsBieber really inspired me,” he said.
It was a dream come true for Avalanna. But, more than that, said her mother, Aileen Routh, it has become an opportunity to raise awareness of the cancer Avalanna was diagnosed with in 2006, atypical teratoid rhabdoid tumors (ATRT), and the work being done at Dana-Farber to investigate potential cures.
The meeting with Bieber came after Avalanna’s family and friends started a Facebook campaign to that aim. (See more photos from the meeting and last year’s wedding on that page.)
When Avalanna saw Bieber, Routh said, “she just threw her arms around him.”
The pair played the board game Candy Land, ate cupcakes, and snapped photos together.
“He was just a dream,” Routh said. “We were Bieber fans before, but there is now a whole new respect for this kid that did such a great job with her and was just so graceful in doing it.”
But, Routh said, the visit was “a moment, and it’s important at this point to look at the bigger picture. I want Avalanna’s legacy to be more.”
Avalanna was back at Dana-Farber today to start a round of radiation therapy. She also receives regular chemotherapy and other treatment.
Dr. Susan Chi, director of the pediatric brain tumor clinical trials program, has been treating Avalanna since she was diagnosed at about 8 months old with ATRT, which is caused by a genetic mutation. Doctors, depending on their location and access to the latest research, often tell families there is nothing they can do to help. Historically, the average survival time is about 6 to 11 months from diagnosis.
“Many times, treatment is not even attempted,” Chi said.
But Chi said aggressive treatments being tested through clinical trials at Dana-Farber provide hope for slowing the progression of the disease and even curing it.
“This is a curable tumor that we just need to know a little more about,” Chi said.
In the nearly six years that Avalanna has been in treatment, and through multiple relapses, she has become “the mayor” of the clinic, Chi said.
“She’s just a joy,” she said.
The Rouths created a website to provide information about ATRT and to raise money for the research that Chi and others at Dana-Farber are doing.Chelsea Conaboy can be reached at email@example.com. Follow her on Twitter @cconaboy.