GOLDEN CHILDREN: Remembering Alexa

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.
Sarah Weber
Aug 7, 2010

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.

 

Mementos

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."

Comments

the unsilent majority's picture
the unsilent ma...

wow this story actually made me cry. with kids of my own who i love dearly it was heartwrenching to read. ill be sure to hug my kids a little longer tomorrow. may the family continue to find peace and keep alexa alive in their memories

Katelih-Trailer...

 I don't know the Brown's, but I can imagine Alexa and her friends chasing the most beautiful butterflies she had ever seen !  I am glad her parents are keeping their promise to her. 

Yellow Snow

Alexa is the picture of all children batteling the ruthless disease, cancer.  So many of us followed her ups and downs, so many kept her in prayers.  Her passing will never make sense, but her legacy will live on.  Thanks, Alexa.

Salvatore

This story caused tears to flow from my eyes. Sometimes I question why the Supreme Being allows children to die so young. I don't have the answers nor do I have words of comfort for the Browns and other families who have lost children for whatever reasons. I don't possess the gift of words that may bring comfort. I did find a poem that may come close to my thoughts.

 

WHEN GOD CALLS

By Cindy O'Connor

When God calls little children to dwell with him above,
We mortals sometimes question.
For no heartache compares with the death of one small child.
Who does so much to make our world,
seem wonderful and mild.
Perhaps God tires of calling the aged to his fold,
So he picks a rosebud before it can grow old.
God knows how much we need them,
and so he takes but a few,
To make the Land of Heaven more beautiful to view.
Believing this is difficult still somehow we must try.
The saddest word mankind knows will always be"Goodbye".
So when a little child departs,
we who are left behind must realize God loves children,
Angels are hard to find.

 

Buff

Earlier today I had the pleasure of seeing Mr. Brown-Alexa's Father-perform in a local production of The Sound of Music.  He played the lead Captain Von Trapp.  He is a talented actor and and equally talented singer.  His wife was in the orchestra, an equally talented musician.

I read in the program about his daughter's battle.  How selfless of this man to give his talents to this production while the loss of his daughter must still be at the forefront of his every thought and action.

Thank you, Mr. Brown.  May God Bless you and your family, especially your daughter Alexa, who I know is with Him right now.