By Gerry Callahan
So this is what happens at the Jimmy Fund Clinic on some days: An adorable little girl falls asleep after another round of brutal, painful, awful chemotherapy and wakes up to marry Justin Bieber.
What, you thought they’d just give the kid a lollipop and a coloring book?
Not here. Not these people, these angels and heroes who spend every minute of every day fighting off unfathomable suffering with a little hope and a lot of laughs.
“I’ll tell you what they do: They create beautiful moments and beautiful memories,” said Aileen Routh of Merrimac. “That’s what they do.”
Aileen Routh knows all too well what they do at the Jimmy Fund Clinic. As always, she was there by her daughter’s bedside when young Avalanna woke up to her wedding celebration. Avalanna is only 5 years old, but she is not your typical 5-year-old.
She rides horses. She sings at Irish pubs. She is an honorary manager of a chi-chi spa, and she was scheduled to bowl with Josh Beckett and friends just last night. This morning, for the second year in a row, she will paint my nails on live TV. Like I said, she’s not typical. She’s a little nuts.
You remember what Morgan Freeman’s character says at the end of “The Shawshank Redemption?” Get busy living or get busy dying. Avalanna Routh has a brain tumor, but she has been busy living for five years and nine months now. One of Avalanna’s friends had a birthday party in the middle of the storm Sunday. A bunch of the kids stayed home. Not Avalanna. “She was going no matter what,” said her mom.
She has already celebrated her first Holy Communion and her confirmation, so what the heck? Why not matrimony, too?
Lisa, Jen, Martha and the other wondrous wedding planners at the clinic knew Avalanna loved Bieber, even more than most 5-year-old girls love Bieber. And they knew Avalanna needed something, anything, to brighten up a particularly gloomy day. So when she awoke in the infusion room, there he was, her beloved Biebs, or at least his face taped to a life-sized cardboard cutout of Clay Buchholz. There were flowers and bubbles and someone playing “Here Comes the Bride” on the guitar. In place of a wedding gown, there was a
T-shirt that said “The Future Mrs. Bieber,” and there was, of course, the happiest chemo recipient on the third floor.
“It was a beautiful wedding,” said the mother of the bride.
Avalanna has been coming to the Jimmy Fund Clinic and to Children’s Hospital for most of her life, and she has been through it all: chemo, radiation, surgery, a stem cell transplant, good news and bad, ups and downs and everything in between. Every six to eight weeks, she gets an MRI and the family steps onto the emotional roller coaster together. The ride is often so cruel it leaves them wondering what kind of awful sins they committed in a previous life.
“She had some good ones,” said Aileen of MRIs. “And a couple of really bad ones. We have a rule: You cannot be sad around Avalanna. Sometimes a friend or neighbor will get the news and come to the front door in tears. I’ll just say, ‘No, no, no. Not in front of her.’ Believe me, we have massive anxiety. We wonder every day, Will this be it? Will this be our last Christmas together? Will this be her last birthday? It’s very hard, but we still have the rule. In front of her, no sadness allowed.”
Sometimes the rule is easier to follow than others. At the age of 9 months, she was diagnosed with atypical teratoid rhabdoid tumors, a rare form of brain tumor most often found in children under 3. Fewer than 30 kids in this country are diagnosed with ATRT each year. Only about 5 percent survive. Aileen and Cameron Routh got the heart-wrenching news about their only child on Aug. 18, 2006, and five years later, Avalanna fights on.
“She’s very smart and she’s starting to ask questions: Why am I so much smaller than other kids? Why can’t I run and jump like they can?” said Aileen. “But she’s very proud of how brave she is, how strong she is. She knows she’s a fighter.”
She’s a fighter and an inspiration, but what Avalanna would really like to be is what every kid at the Jimmy Fund Clinic longs to be: a normal kid. She loves doing nails, so the Spa Ni’joli in Methuen made her an honorary manager, complete with her own business card. She loves riding horses, so she has been a regular at Ironstone Farm in Andover. And don’t be surprised to see her at her favorite Irish pub in Lowell on Friday night. “She loves the music,” said Aileen.
She starts kindergarten tomorrow, and she’ll be nervous and excited like all the other 5-year-olds. Probably won’t be quite as scared, though. She was bowling with Beckett last night and will be appearing live on the WEEI/NESN Jimmy Fund Radio-Telethon this morning. She’ll be asking for your support for the Jimmy Fund, the greatest cause in the world.
Times are tough and money is tight, but you can look at this way: It’s a wedding gift. For the lovely Avalanna and the cardboard Biebs. Those two kids deserve it.