NewburyportNews.com, Newburyport, MA

August 25, 2011

'She's beaten the odds so many times'

5-year-old girl battles rare disease

By Katie Lovett
Staff writer

MERRIMAC — In many ways, Avalanna Routh is just like any other 5-year-old.

The little girl loves butterflies and ladybugs, princess stickers and cupcakes. She likes to wear earrings and bracelets and to give hugs.

She loves her parents and her dog, Charlotte, a Portuguese water dog that she calls her "sister."

Yet, for Avalanna and her parents, Cameron, 45, and Aileen Routh, 40, of Merrimac, much of the past five years has been anything but an ordinary childhood.

Avalanna has cancer and is fighting for her life.

When she was 9 months old, she was diagnosed with a rare brain tumor, called atypical teratoid rhabdoid tumor (AT/RT).

The tumors strike the brain/central nervous system and are extremely rare — and extremely difficult to treat.

She was diagnosed five years ago, on Aug. 18, 2006.

"Just the week before diagnosis, she presented with a slight tilt in her neck," Aileen Routh said. "We were assured that this was minor and not of any concern. However, after five days and no improvement — and an instinctive feeling that this was serious — we brought her to Children's Hospital Boston."

The infant underwent a 12-hour brain surgery. It was followed by countless other surgeries, chemotherapy, a stem cell transplant and radiation.

During the first several years of treatment, which included the stem cell transplant, Avalanna spent about 75 percent of her time as a patient at Children's Hospital. The Rouths temporarily closed their house in Merrimac and moved into Boston.

Today, Avalanna and her parents take weekly trips to the Jimmy Fund Clinic — the outpatient pediatric cancer center at the Dana-Farber Cancer Institute — for transfusions and IV chemotherapy. They make the trip about two or three times each week.

"She's very transfusion-dependent right now," Aileen Routh said.

Since Avalanna has received chemotherapy for an extended period, her bone marrow has "tired," Aileen Routh said. It can no longer make red or white blood cells, or platelets.

Every third week, she undergoes a heavier round of chemotherapy. Each day for that week, they make a trip to the clinic.

And, every six to eight weeks, Avalanna undergoes an MRI. The scan shows whether her chemotherapy and radiation has been effective or if the tumors have grown.

"AT/RT is incredibly aggressive and fast growing, and can spread out of control very rapidly," Aileen Routh said.

Research funds for pediatric cancer are limited, Aileen Routh said. Since AT/RT is so rare, with about 20 to 30 cases of children being diagnosed each year in the entire country, much of that budget goes toward cancers that strike a higher population of children, such as leukemia, she added.

"So if we want to find a cure for Avalanna, we've got to do it," Aileen Routh said.

As part of that mission, the Rouths will participate in The Josh Beckett Foundation's annual Beckett Bowl at Lucky Strikes Lanes in Boston on Monday night. The celebrity bowling tournament raises money for Children's Hospital.

They are also getting ready for the annual Boston Marathon Jimmy Fund Walk in Boston on Sept. 18. Aileen, Cameron and Avalanna all walk on the "Cure AT/RT Now" team, along with other patients, their doctors and families. The Rouths will complete the 5-mile walk, which travels along the Boston Marathon route.

The team has a fundraising goal of $100,000, Aileen Routh said. All of the funds go to Dana-Farber and pediatric cancer care and research.

Through it all, they live each moment, Aileen Routh said.

Avalanna is gearing up to start kindergarten at the Sweetsir School in Merrimac on Thursday. They take vacations, when possible, and go to Cape Cod or to Santa's Village in New Hampshire. They have been to Disney World and to Aileen Routh's native Ireland, where her family still lives.

The staff at Spa Ni'joli in Methuen is so taken with their young friend, they've given her a little job as a manager, complete with business cards and a name tag.

Avalanna loves to give manicures and pedicures, said her mother, and she wants to have a spa party with her friends for her 6th birthday in October. She painted the nails of Boston Bruins player David Krejci when he visited the Jimmy Fund Clinic.

At the clinic, she also met Boston Red Sox player Jed Lowrie, and she's completed arts and crafts projects with Kelli Pedroia, the wife of Sox second baseman Dustin Pedroia.

She loves comedian and talk show host Ellen DeGeneres and dreams of meeting her one day.

But her heart belongs to singer Justin Bieber. She married him last week when the staff at the clinic threw her a pretend wedding.

Avalanna wore a red "Future Mrs. Bieber" T-shirt and blue tutu, and carried a bouquet of flowers. There were bridesmaids, guests, a wedding cake and a singer. The staff pasted a poster of Bieber to a piece of cardboard.

"I like his music," Avalanna said. "I love to dance."

Her parents are careful to give Avalanna age-appropriate information about her disease. Negativity isn't allowed.

Devout Catholics, the Rouths continue to pray for a miracle.

"We're just really hoping and praying," Aileen Routh said. "She's beaten the odds so many times."

TO DONATE

Go online to http://www.jimmyfundwalk.org.

Click on "Give" and "Support a Walker."

Enter the name of Avalanna, Aileen or Cameron Routh.