Bluefield Daily Telegraph, Bluefield, WV

October 13, 2012

Cancer victims have voice

Vannatter uses her personal loss to help research pediatric cancer

By GREG JORDAN
Bluefield Daily Telegraph

PRINCETON — When little Emma Vannatter was being treated for leukemia, her mother learned one sad, simple fact — children with cancer have died from a lack of research.

Today, Karen Vannatter of Princeton, her husband Charles Vannatter and other volunteers devote time to Emma’s Touch, an organization dedicated to helping victims of childhood cancer and their families while promoting research. The Vannatter’s daughter Emma died in Oct. 4, 2008.

Before September 2007, life was normal for the Vannatter family. Karen was working as a special education counselor with Mercer County Schools and Charles was an assistant state fire marshal. Their son, Logan, was born in 2003 and daughter Emma came later in 2006.

Then they noticed that Emma was having problems. At first, they thought it was part of being a toddler. On Sept. 14, 2007, Emma was diagnosed with High Risk T-Cell Type ALL (acute lymphoblastic leukemia).

“There were no signs or symptoms in her case other than that Thursday evening I noticed some little tiny dots which are called petechial on the back of her calves,” Karen Vannatter recalled. “Of course, she was still in diapers and I had to hold her ankles in order to change her. They were hard as a rock. From there all the way to her knees, they were swollen and hard. There was a fever that came and was gone as quickly as it came. She had trouble walking, and then she would get up and start running, so we thought it was just part of being a toddler.”

The next day, Charles noticed that Emma couldn’t stand up in the bathtub; she normally would never sit down.

“The minute we got her out of the tub, she was running around. It was chalked up as being a toddler until I saw those little pin bruises on the back of her calves; and they were hard, and I knew something was wrong,” Karen Vannatter said.

She called Emma’s pediatrician, who said to take her to the emergency room. When Emma’s white blood cell count was checked, the doctors immediately made arrangements with CAMC Women’s & Children’s Hospital in Charleston and told the Vannatter family that they needed to leave immediately.

Karen remembered when the doctors told her that her daughter had cancer.

“It was over the phone at my mom’s house. We had to wait two hours. It was probably the longest two hours of my life, and the words ‘We’re 98 percent sure your child has cancer’ were echoing in my head again and again. And to look at her during that particular time, she was laughing and giggling, and the first immediate thought that came into my head was ‘What if she dies?’”

The family didn’t linger over the news because there were things to do.

“And then you go into caregiver mode, mommy mode, and the ambulance is waiting. It’s just the unknown: What am I in for? What are we in for? What is she in for? There’s a lot of unknown questions. One minute you’re fine and your family is fine and in the next minutes, everything is torn apart; and it never goes back to being completely the same again,” she said.

Emma was 16 months old when she began her first phase of treatments. This called for a three-hour, whole-body blood transfusion. Tests had shown that she had a white cell count of 630,000; the normal count is an average of 14,000. That treatment alone made the Vannatter’s “avid blood donors,” she said.

“And then they started chemo (therapy) the next morning, and they gave us this huge protocol, this huge plan of what we’re in for the next three years,” Karen said.

Emma’s cancer impacted not only her, but also the entire family.

“I couldn’t work. Any time she would spike a fever of 101 or over, we immediately had to go to the hospital; so we’re in southern West Virginia, so we’re traveling to CAMC,” she recalled.

Then on Dec. 20, 2007, Emma relapsed. Her only chance for survival was a bone marrow transplant at Duke University Medical Center. First, physicians had to get her back into remission again.

“They started her on a drug to get her there, and she got there,” Karen added. While Emma was being treated, the rest of the family needed care as well.

“There is another set of unknowns, what ifs, and then you have a child at home who’s not sick. Thank goodness I was in a company that was very supportive and able to get a lot of donated days. A lot of people are not that lucky to be able to get that,” she said. Charles Vannatter’s employers also understood the situation, so the entire family was able to go to Duke while Emma was there. They spent six months at the facility, but Karen knew she would still have to resign after Emma’s treatment was complete.

While waiting at Duke, the Vannatters met other families with children battling cancer. One problem was the limited number of drugs for child with cancer.

“Once we got down to Duke, I met some other families that had already heard of the lack of research and the lack of funding on a national level,” she said. “So I started doing research about some of the things they were telling me, and I found out they were definitely true. I hate to be as blunt as I am, but my daughter died from lack of research.”

Basically, physicians said that major pharmaceutical companies did not research childhood cancer treatments and medicines because there was no profit to be made from them, Vannatter said.

On Oct. 8, 2008, Emma passed away. The Vannatters decided to keep fighting for children with childhood cancer. With assistance from Jonathan Powell Hope Foundation, they founded Emma’s Touch in January 2010.

Emma’s Touch has several goals. They include getting childhood cancer included in the West Virginia Cancer Plan; getting people to sign a petition to get a childhood cancer pediatric oncologist on the National Cancer Institute’s (NCI) advisory board is another; and increasing awareness of childhood cancer throughout year, especially in September.

As of now, the NCI dedicates only four percent of its federal budget to childhood cancers, and there are 12 major types and groups of childhood cancers, Vannatter said. People can sign the petition to add a childhood cancer specialist to the NCI advisory council by going to petitions.whitehouse.gov/petition. The goal is to get 24,051 signatures; as of Oct. 11, the petition had 949 signatures.

“Why is it so hard for the public to take a stand and help, not turn our heads because it’s too painful to think our kids can get cancer,” she said. “They do. People will pour out for abused animals whom need a voice, and don’t turn their heads. Why? Please let us know what the childhood cancer community can do to get the voice and get support.”

Karen Vannatter can be contacted at 304-887-5398. Emma’s Touch also has a website and a Facebook page.Ɠ