AY Magazine / September 2011 / You’ve Been Called to Rise

You’ve Been Called to Rise

Lara Beebe is a beautiful woman. This mother of two exudes energy and happiness, and just as most mothers, when she speaks of her family — husband Kyle Beebe and daughters, Laken, 2, and Alexandria, 16 months — her face simply lights up. Perhaps her joy is more pronounced as her family has endured a test all too familiar for families of children with cancer: Alexandria, Alex as she is called, was diagnosed with neuroblastoma just 11 weeks after her birth.

“I had a routine pregnancy,” Beebe said. Though Alex was a surprise — after all the girls are just 11 months apart — she was a happy surprise. Mom and Dad were thrilled when she was handed to them at birth, May 14, 2010, with a declaration: she’s perfectly healthy. “We went home, and everything was fine, but Alex cried all the time … 24 hours a day … she never stopped crying.”

Initially, Beebe thought it was colic or that Alex was simply a weepy baby; she’d been seen for her regular checkups and all seemed fine; but Beebe began to feel ill at ease. “I remember the exact moment I knew something was wrong. I bent down with her, and she hesitated, drew in her breath as if she was in pain, and then she just screamed. I thought, ‘That’s pain.’”

So the Beebes made the trip to Little Rock to seek a second opinion. Alex, at just 11 weeks, was diagnosed with neuroblastoma.
Neuroblastoma is “a solid tumor cancer that arises in immature nerve cells and strikes primarily infants and children” (cncfhope.org). The neuroblast is the immature form of the nervous system. Normally, these neuroblasts become mature, functioning nerve cells. “However, in some babies the neuroblasts do not go away. We’re not certain why — it may be due to a genetic disposition. It’s a mystery,” said Dr. Robert Saylors, pediatric hematologist/oncologist; he’s Alex’s doctor. Saylors has specialized in this area for more than two decades; he’s been with Arkansas Children’s Hopsital since 1993. He said neuroblastoma tumors often form near the adrenal glands and usually grow to the front of the belly. “They are often felt there or in the chest. Alex’s tumor started at the adrenal gland, grew forward, then backward and around her spine; it exhibited as a mass that poked out at her back. Most families come in because their child has stomach pain or because the child is having ‘growing pains’ that are truly painful. These tumors can spread through the body and in the bones, feeling like a broken bone.”

Beebe distinctly remembers getting the news: “The doctor said, ‘It’s either neuroblastoma, which can have a 90-percent cure rate, or rhabdomyosarcoma, which does not have as high a cure rate.’ I know it’s strange to think ‘I hope it’s this cancer and not the other, but all I could do was pray. I am so thankful, because a lot of parents [get a cancer diagnosis like this] and have to simply watch their children fade.”
Saylors said the treatment for neuroblastoma is complex; however, he summarized it:

• low-risk — usually found in children less than 1 year old; tumor is small and requires surgery only; the cure rate is about 98 percent.

• intermediate risk — patient requires about four to eight cycles of chemotherapy and usually does not need surgery or radiation; the cure rate is about 90 percent.

• high-risk — usually found in children 2 to 10 years old; often starts with a tumor in the belly that spreads; requires an intensive surgery and chemotherapy/radiation therapy, bone marrow transplants; a good number of these patients are in Stage 4; the cure rate is approximately 60 percent.

Alex’s case was considered intermediate, even though she required surgery. Doctors removed the majority of the tumor, which had wrapped around Alex’s spine and affected her mobility. A small, noncancerous mass remains as its removal was too risky. Alex then underwent two rounds of chemotherapy. “It was hard. Alex just didn’t feel well. She lost her hair. She’s so precious to me … I look back at pictures of her, and I didn’t even see [how sick she was]. I simply saw Alex.”

Today, Alex is a beautiful, active toddler. Beebe is overjoyed to report she is crawling. She wears braces to assist. “We didn’t know if she’d ever move her right leg. At first, we simply focused on her living. For the first time, she’s actually starting using her right leg.”
“You know, no one wants to talk about pediatric cancer because it’s just too horrid. But when I think of how I was just living my life” — Beebe was a full-time model before marrying Gov. Mike and Mrs. Ginger Beebe’s son — “and how I had no idea what the families of children with cancer go through … I feel that my purpose was dropped in my lap,” Beebe said. “My heart was opened when I saw what families go through and how much people care.”

One of the ways Beebe is giving back is through support to the Arkansas chapter of the American Childhood Cancer Organization of America. “This organization assists with families’ medical costs, supplies, transportation costs … even funeral expenses. While we were at the hospital, there was a woman who would not take her son home. We later found out she was living in her car and didn’t feel she could provide clean facilities for her son who had a tracheotomy.”

It’s in instances like these that the Arkansas chapter of ACCOA helps. The organization, formerly known as Candlelighters of Central Arkansas, also serves the families of pediatric patients by providing new-diagnosis bags (containing adult toiletries, prepaid calling cards, gift certificates for local restaurants, pens, notepads and more) and educational materials. Volunteers visit families after diagnosis to provide support and information. The organization also sponsors toy drives, events,  social activities and more.

One way in which the organization raises funds is through their event Gallery of Hope. This year’s Gallery of Hope will be held at 6 p.m., Sept. 23 at the Arkansas Governor’s Mansion. Tickets are $50 each and are available by calling (501) 993-6688 or at arkansascandlelighters.org. The evening will include live and silent auctions; artists painting on-site; heavy hors d’oeuvres; beer, wine and champagne provided by sponsor Glazer’s Distributors — Arkansas; and live music provided by Rodney Block and The Real Music Lovers. This year, the organization, according to Jennifer York, chair for Gallery of Hope, hopes to raise $80,000. Last year, after expenses, they raised half that allowing them to serve about 250 clients.

“I promised myself that when — and I did mean when — we got through this with Alex, I would lend my energy to an organization that helps families like ours. ACCOA is a worthy cause. There’s a quote from Emily Dickinson that I just love,” Beebe said. She feels it epitomizes her journey — and the journey of other families who fight for their children’s lives: “We never know how high we are … ‘til we are called to rise.”