GOLDEN CHILDREN: Remembering Alexa
Nov 14, 2012 at 2:40 PM
One year ago today, she drew her last raspy breath.
Snuggled in her parent's bed, surrounded by older sisters Abby and Amanda, brother Ethan, and parents Warren and Wendy, she chose a quiet moment just before dawn to slip away.
It was the end of her battle with brain cancer, a battle that consumed nearly a third of her young life.
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Alexa Brown, 11, never complained during years of painful cancer therapies.
She survived long beyond doctors' expectations.
In the end, her family took heart she no longer suffered -- she was free to play and ride her bike in heaven.
But Alexa's departure left a cavernous hole in her family's universe.
"There is not a day that goes by, not a minute of the day, that I don't think about Alexa," Warren said early this week.
He and Wendy sat on the porch of their home -- on the same love seat, in fact -- where only a year ago today they'd reflected, bleary-eyed, on Alexa's death.
Even now, the tears still come easy.
"I'm at peace because Alexa's in heaven. But when people talk about time making things better ..." Wendy said, shaking her head. "I think time just goes by."
Fighting for lives
As with all families where a child has cancer, the Browns rearranged their lives around Alexa's check-ups, treatments and speech therapy sessions.
They remember listening as Alexa struggled to relearn speech, after doctors removed an invasive tumor.
Yet, she could still sing all the words to "Jesus Take the Wheel."
Jesus, take the wheel, Take it from my hands, Cause I can't do this on my own.
The family was far from alone in eastern Sandusky County, where 28 children have been diagnosed with cancer since 1996.
When Alexa died, it changed her parents' lifestyle.
They'd become accustomed to spending life at her side, monitoring her health, nursing her.
That all ended on Aug. 6, 2009.
Ever since, Wendy and Warren have filled the void with fight.
"Warren promised Alexa that he would fight for all those kids who have cancer," Wendy said.
The couple kept that promise. They traveled to Washington D.C. in November to meet with legislators and top-level aides about additional funding for cancer research.
They shared their heartbreaking struggle with lawmakers, urging them to fully fund the Caroline Pryce Walker Conquer Childhood Cancer Act.
Congress unanimously approved the act in 2008, which opened the door for a potential $150 million in funding for childhood cancer research.
For now, the act remains merely symbolic -- Congress has yet to approve any actual funds.
There was no money appropriated for the fund in 2008, and only $3 million was allocated in 2009 -- and that came only after the Browns led a local letter-writing and phone campaign.
Troubled by lawmakers' willingness to bailout banks and auto-makers -- but not fund childhood cancer research -- Warren decided to throw his hat in the ring for U.S. Senate.
His race ended early, since he didn't collect enough signatures to make it to the ballot.
He may still rally for another run.
Wendy, meanwhile, asked the Clyde Kiwanis club to turn its annual 5K fun run into a memorial race for Alexa.
Money raised at the Sept. 18 event will go to CureSearch, a fundraising and lobbying group for childhood cancer research.
Warren has kept pressure on Ohio lawmakers, urging them to fully fund the Caroline Pryce Walker Act.
He has support from Ohio Sen. Sherrod Brown and Reps. Bob Latta, R-Bowling Green, and Marcy Kaptur, D-Toledo.
If the funding needs an additional push in November, of course, the Browns will make another trip to Washington D.C.
As a toddler, Alexa would travel with her family to the Outer Banks of North Carolina.
On those vacations, she adored what she called "her beach."
Last year, she packed her little suitcase, weeks before the family planned to leave for the shoreline.
But instead of going to the beach, Alexa ended up on a different journey.
Today, her suitcase still sits in her room -- untouched, packed just the way she left it.
Alexa's family hasn't touched anything in her old room.
In fact, they've added mementos of Alexa throughout the home, hanging family pictures and large photos of butterflies.
Outside, a flower garden in the shape of a butterfly welcomes the delicate creatures that Alexa so loved; creatures that were so analogous to her free spirit and fragile body.
Wendy sometimes looks out her bedroom window, absorbing the sights and sounds and smells from the garden.
Once, she saw the family cat basking among the purple blossoms. She had the urge to shoo him away.
Alexa, ever a devoted animal lover, would have stopped her.
Wendy decided to let him be.
Alexa never made it back to the beach for a final visit.
But part of her did return for good when the family visited North Carolina in July.
At a quiet oceanside ceremony, the family dedicated some of Alexa's ashes to the shore.
"I shoveled a big heart shape in the sand and wrote 'ALEXA' in the middle of it," Warren wrote on the family's blog that evening. "We all sprinkled some of Alexa's ashes in the heart.
"Right now everyone is down at the beach protecting the heart by digging a moat around it so the ocean does not wash it away."
He noted the ocean was exactly where Alexa would want to be, if she were still here in person.
Through the evening and into the next day, the tide slowly washed the memorial away.
"Hightide last night washed away one half, and hightide cared for the balance during the day today," Warren wrote.
"As she did in her struggle in life, she would not give up her name or her heart," he wrote, "even to the ocean, until the last moment."