By Jenny Neyman
The Vannatter family didn’t need to struggle to retain memories of their 2-year-old daughter, Emma, after she died of cancer in October 2008. It takes no special effort to be reminded of her. Her existence is still omnipresent — tangibly in photos and keepsakes of the smiley little blonde; and in a more visceral sense, in the daily ache still felt by her parents, in the motivation of friends and family to help any way they can, in the way their nearly 7-year-old son, Logan, reveled in the camaraderie of no longer being an only child when visiting his three cousins in Kenai this summer.
“You could tell Logan was real lonely,” said Rhonda Baisden, of Kenai, Logan’s aunt and sister of Charles Vannatter. “Our 2-year-old daughter, you just kept hearing them reference, ‘Emma used do to that. Emma was that way.’ I think that was therapeutic for them to see that little sassy spice of a girl, that their niece and cousin is carrying those traits.”
The fight for the Vannatter family isn’t to remember Emma, it’s to do something to honor her memory, to make sure their daughter’s impact stretches beyond just the indelible, little-girl-shaped mark she made on all their hearts. They want her life to be an inspiration to help soothe the hearts of other families suffering the challenges of a child with cancer, by filling in the gaps and addressing the needs for connection and support that are missed by the established cancer treatment network. The family had to learn about those gaps and needs the hard way.
Charles, Karen and Logan Vannatter live in Princeton, West Virginia. Emma was 16 months old when she was diagnosed with leukemia on Sept. 14, 2007. She died Oct. 4, 2008, at 28 months old. The challenges — financial, logistical and medical — and sorrow that came in that time period were more than they ever could have imagined or prepared for.
Rhonda Baisden, a southern transplant who lives with her husband, James, and their three kids in Kenai, knew from her medical background as a laboratory technician some of what Emma would be undergoing physically.
“When Charlie told me the diagnosis I knew what was ahead of her, I knew what she faced,” Baisden said. “I was mourning her suffering before anybody understood what she would be suffering.”
But none of them were prepared for the nonmedical side of fighting cancer. Karen had to leave work to manage Emma’s care, driving hours back and forth to the nearest hospital for treatment. Being admitted for a bone marrow transplant meant effectively being cut off from the outside world. Even after being released to outpatient treatment, they had to get an apartment within a few minutes of the hospital.
The family had insurance and was able to manage medical bills without declaring bankruptcy or losing their home, which many families in similar situations have to do. But still, Emma’s lifetime limit of insurance coverage was exceeded, and the transportation, rent and other extra costs incurred above and beyond covered insurance expenses ballooned to tens of thousands of dollars.
“Financially, on average, families can incur $45,000 to $50,000 in extra things insurance doesn’t cover,” Karen Vannatter said. “Insurance, yes, we did have that, which helped pay tremendously. A million dollars seems like a lot of money, but when you’re talking about the American medical situation, in 13 months we went over her $1 million lifetime coverage.”
Baisden, who has familiarity with oncology treatment from her medical experience and had faithfully participated in Relay for Life and other fundraisers for cancer organizations, immediately told Vannatter to contact the big, national organizations like the American Cancer Society. That’s why they’re there, that’s what they do, surely they can help, she said.
The family discovered the hard way that there is very little direct assistance available from the big-name organizations, especially for children’s cancer. The American Cancer Society, for example, devotes the majority of its resources to cancers that strike adults.
“It’s hard to criticize somebody like the American Cancer Society because they do good for a lot of people, but when it comes to kids they’re doing little to nothing. It’s like less than 2 percent of the money raised goes to all childhood cancers. The majority of their cancer research goes to breast cancer or prostate cancer, and kids don’t get those,” Baisden said. “Emma had such a larger future in front of her than, say, a 75-year-old guy with prostate cancer, which I feel bad for, too. But when you look at a 2-year-old, she has a whole lot more potential there.”
Instead, the Vannatters found help from their community. Another family who had suffered through the loss of a child to cancer and realized the lack of support available had established the Jonathan Powell Hope Foundation, which seeks to support families battling childhood cancer, primarily in West Virginia, by helping with costs of transportation, housing, groceries and the like.
“We Googled different organizations out there and there just wasn’t any help. If it wasn’t for our local community and our church and the Powell Foundation, I don’t know how we would have made it,” Vannatter said. “Lots of times people end up having bankruptcy and losing their home from medical bills that are outstanding.”
After Emma’s death, the Vannatters decided to follow in Jonathan Powell’s parents’ footsteps and start a nonprofit organization to address the needs they saw — specifically, to promote awareness of childhood cancer and to help families fighting through it.
“When you go through something like this you want to reach out. You want to spread more awareness and see if there’s anything you can help another family with,” Vannatter said. “With Emma’s diagnosis, there was not a lot of awareness or help out there for kids with cancer. So while she was going through it we felt led to help others, and after she passed away there definitely was a need that we saw.”
The Vannatters started by supporting the Jonathan Powell Hope Foundation, and in January founded their own organization, Emma’s Touch. Their goals are to hold two blood drives a year, raise awareness of childhood cancer and help support families fighting childhood cancer. For awareness, they got a 12-mile section of road in their area named the Childhood Cancer Survivors and Memorial Highway, and have TV commercials and media campaigns produced in honor of September being National Childhood Cancer Awareness Month.
“Forty-six kids are going to be diagnosed with cancer every day (in the U.S.),” Vannatter said. “It doesn’t sound like a lot, but childhood cancer is the leading cause of death in kids, outside of accidents. Seven kids will die every day of cancer in the U.S. We didn’t know any of that before Emma.”
For support, they help provide comfort kits to newly diagnosed cancer patients and their families, who oftentimes end up stranded in the hospital immediately and unexpectedly. They also help provide money for a local hospital to throw “hero parties” for kids finishing up their cancer treatment.
Wherever they go, whether it’s traveling around West Virginia or visiting family in Kenai, they spread awareness and try to encourage people to support organizations that target childhood cancer, like St. Baldrick’s Foundation and Alex’s Lemonade Stand, and to directly support families in need. For instance, they brought gifts for a Kenai family with a child battling cancer. Vannatter recommends investigating organizations online through charitynavigator.org, which rates organizations and provides information on where donations go, before deciding which to give money to.
Baisden said she’s now a huge supporter of children-specific cancer organizations, Emma’s Touch — of course — and tries to directly reach out to families in need.
“I still support the cancer patents, I just don’t so much support the agency,” Baisden said. “When I hear of a kid who has cancer, I mail boxes to people I don’t even know, just to let them know they were being thought about, and that we understand the stresses you’re going through and you’re not alone.”
The isolation was one of the biggest hurdles for the Vannatters, Baisden said. With a sick kid, you’re often trapped in a hospital with little or no contact with friends, family, your regular life or others who may be able to relate.
“When you’re going through it and you don’t see anybody else dealing with what you’re dealing with, you really think you’re alone,” Baisden said. “I don’t know how many times Karen said to me, ‘I think I’m the only one having to deal with this in the whole world.’ It’s just the nature of the beast, it keeps you isolated. You can’t get out and see what other people are going through, too.”
Financial support is of course appreciated, but sometimes the little gestures of personal connection can have a far bigger impact than just money, Baisden said. And that’s where local organizations and networks like http://www.caringbridge.com — which allows families to post updates and interact online — are so important. The big, national cancer organizations won’t provide you with a laptop computer equipped with a camera, so you can visit with family members online while in the hospital, for instance. But that’s what the Baisdens did for the Vannatters.
“She couldn’t get out of that room, or only on very rare occasions. And Emma liked to watch our dogs, so I’d chase our dogs around with this laptop so she could get a glimpse of them. And our dogs are old. They were like, ‘Oh my God, what are you doing?’” Baisden said. “We’d read stories to her and our kids would talk to her. That computer gave her and Karen a little bit of freedom outside of that hospital setting. How cool would it be for a family to have a pair of computers so they can connect during that time?”
That’s a need a local organization or community effort can see and meet, that a larger organization wouldn’t bother with, Baisden said. Just like Emma’s Touch, the Jonathan Powell Hope Foundation, a church congregation or extended family members can’t cure cancer, the large organizations providing money for research aren’t in a position to cure the daily feelings of isolation or comfort the fears that come with fighting cancer.
The national groups can keep on doing what they’re doing; meanwhile, the Vannatters and Emma’s Touch encourage community members to do whatever they can do to comfort cancer families in their area.
Those needs can be financial, spiritual, or sometimes just plain wacky. At Emma’s funeral, butterflies were released at the graveside ceremony. Emma’s brother, Logan, was given a butterfly, a symbol of childhood cancer, but lost it on the way back to the church.
“And that child was devastated. He was just devastated,” Baisden said. “I thought, ‘You know, this child has lost a lot today. If I can help it, I don’t want him to have another loss on this day.’”
So Baisden and Vannatter spent two hours running around the cemetery hillside, formal heels kicked off, throwing a jacket in the air trying to capture another butterfly to bring to Logan.
“If anybody had drove by and saw us crazy women out running through the cemetery throwing a jacket up in the air, they probably would have called 911 and said, ‘You’ve got a bunch of crazies lose.’ But we caught him a butterfly and we brought it home and said, ‘Emma sent you a butterfly back,’” Baisden said.
“I never would have dreamt I’d have spent two hours out in a cemetery trying to catch a butterfly, had it not been that reason. Motherhood will make you do crazy stuff. But she understood and I understood. To us, it made perfect sense. That’s just what needed to be done, so that’s what we did.
“I don’t see any CEOs out there trying to catch butterflies.”
For more information on childhood cancer, visit http://emmastouch.webs.com, http://www.jonathanshope.org, http://www.curesearch.org, http://www.stbaldricks.org, http://www.alexslemonade.org and http://www.rallyfoundation.org,