The Union Recorder

September 17, 2013

One day at a time

Local child stares down cancer, inspires a community

Kyle Collins
The Union-Recorder

MILLEDGEVILLE — In Georgia, cancer will affect more than 430 children this year.

Mark and Natasha Gainous heard the terrible word May 1, 2012 when doctors diagnosed their rambunctious, fun-loving son Abram “Abe” Gainous with pre-B Acute Lymphoblastic Leukemia.

A bone marrow test on Day 29 still showed signs of the disease, placing Abe into the group of only 5 percent of children not in remission at that time mark. 

A clinical trial with inpatient chemo for the next seven months knocked out the leukemia. After a long road of inpatient and outpatient therapy, Abe reached complete remission stage in the spring.

“When it finally happened, it was just a relief off of our shoulders. We knew at that point it was gone and feel confident it won’t return,” Mark said. “Some parents never get that. (Abe) has been cancer-free for a while now, and we are pretty pumped up about it.”

• Top-notch facility helps a tough kid

While in remission, the Gainous family returns to Atlanta’s Aflac Cancer Center at Egleston once a month for maintenance chemo and spinal taps. Abe remains on clinical trial to reduce a 40 percent cancer return chance.

Natasha said the last maintenance month will be August 2015.

Both parents credit the cancer facility’s world-class care.

“Egleston is an unbelievable place. Some of the best doctors in the world work there,” Mark said. “We decided Egleston would be the place for us, and we don’t regret that.”

Everything was taken care of down to financial assistance. Natasha said a social worker came the first day at Egleston.

“She knew all the paperwork we had to fill out. That was huge,” Natasha said. 

The facility features a playful environment to keep children’s spirits up.

“There were some rough patches there as far as the chemotherapy went, but we never told him or acted like he was sick. We had a policy in our room where there was no negative energy, thoughts, comments or words. That’s how we wanted to keep it,” Mark said. “He’s been through a lot. I don’t think he realizes all that happened.”

Natasha said cancer’s presence didn’t stop her vibrant son’s running lifestyle. A normal, euphoric early childhood probably contributed to an impressive recovery.

“People ask me all the time if I think Abe knows he was sick. I honestly don’t think he has any clue. Even his doctors commented on how well he did. They said he never seemed depressed,” Natasha said. “A lot of kids get depressed because they are separated from their normal life. We didn’t isolate him from the world. He was everywhere. His doctors were big on letting him be a normal kid.” 

• The passing storm leaves bright mission

The Gainous family attends Milledgeville First United Methodist Church (FUMC). Faith previously and still does guide both parents.

Before Abram was born, his father remembers a guest pastor’s resonating sermon.

“He was talking about the storm that was coming and are you ready for the things that are going to happen in your life. We didn’t know it at the time, but God was talking to us directly,” Mark said. “I believe being members of the church got us prepared to handle some things that maybe we weren’t going to be prepared for. I don’t know if we could do it if we didn’t open up to God.”

The Georgia College Athletics and John Milledge Academy community all came to the coaches’ aid.

Game fundraisers and moral support over the past year and a half made all the difference.

“With those two ties, it felt like Abe was so loved. Everybody wanted to do something. We were extremely lucky and blessed for everything that was done for us,” the JMA girls’ basketball coach said. 

Orange-Out and Play for Abe days made for special memories. Now moving beyond a single cancer survivor, the Gainouses are turning up childhood cancer awareness.

“At first it was a one track mind on getting (Abe) well. It’s drifting toward wanting to make a difference some way and give a little bit back,” Tasha said. “I want to make it my job in Milledgeville that no one feels like they have to go through something like this alone.”

As the Georgia College men’s basketball assistant coach, Abe’s dad thinks more about community service teaching collegiate players about giving back. Blood drives are huge.

“Blood saved Abe’s life,” he said. “I’m thinking if people don’t give blood what happens?”

Considering the outpouring of love from local friends and family, Abe’s parents want to help others the same way. 

“We are trying to help the cause. We are basically foot soldiers for CURE,” Mark said. “We are trying to raise awareness and money to find a cure for future kids. It will help somebody maybe a year from now that gets sick.”

• CURE turning the research tide 

Currently, only three percent of federal cancer funding focuses on childhood cancers. 

CURE executive director Kristin Conner directs the non-profit cancer research foundation hoping to sway the scale. Her group and similar non-profits lend young children a voice.

There are more than 25 different childhood cancers, each requiring their own research. Childhood cancer is not the same as adult cancer. Separate research and treatments are required.

Overall progress has flatlined over the last 10 years, which according to CURE indicates a strong need to increase research.

This year the organization committed $2.5 million to 13 major studies.

“We are able to do so much more in terms of patient research and family support efforts,” Conner said. “These are the kinds of things we can do now because we’ve grown so much.”

Conner said CURE understands the family dynamic from beginning to a hopeful remission.

“When a child is diagnosed with cancer the whole family is diagnosed with cancer because it is so difficult on the extended family because everyone is affected,” the CURE director said. “There is a need to help everyone along the way.”

Considering September’s National Childhood Cancer Awareness Month designation, CURE rolled out “Kids Conquer Cancer One Day at a Time” honoring special children each day through Sept. 30.

Abe’s story continues running on the website helping spread the word. At press time, Abe’s September online feature through CURE’s campaign raised $2,825.

“We felt like there is no better way to raise awareness of what the journey is like then by sharing the stories of our kids,” Conner said. “We ask people to start their day for one month reading the stories of the children honored on that day. It takes five minutes or less. As you really read the stories and see their pictures, you are changed a little bit by the courage of the children. It’s so inspiring.”

People are taking action, as CURE’s $200,000 September goal looks attainable.

Now 3 years old, Abe’s energy and spirit never changed showing his parents and community friends what life is really about. 

“We’ve seen the goodness of people. It’s all for Abe,” Tasha said. “He takes everything he has to go through and forgets about it the next day. Abe is a sweet, good kid.”

Visit www.curechildhoodcancer.org to read CURE’s kids’ stories or donate for cancer research.

To view or purchase the Neighbors feature page published in the print edition, visit http://unionrecorder.smugmug.com/buy/25684023_DKg5s5/2772174626_39pzLS2/

Click here to subscribe to The Union-Recorder print edition. http://tinyurl.com/6qdm4oj

Click here to subscribe to The Union-Recorder e-edition and view this full article. http://unionrecorder.cnhi.newsmemory.com/