Published: November 28, 2008 11:07 am            

Parents fight cancer for ‘Angel Emma’

PRINCETON — Emma Ruth Vannatter’s family believes she was born to be an angel.

Just weeks after complications from leukemia took the little girl’s life, her mom finds comfort knowing that her “Angel Emma” doesn’t hurt any more.

After watching for 13 months as Emma endured countless tests, 106 blood or blood product transfusions, chemotherapy, radiation, a bone marrow transplant and more, Karen Vannatter said she now imagines her baby girl running and playing without a care from the world she left behind.

“I know she’s not suffering anymore, that she’s in heaven, that she’s got a new body,” Karen said. “She can walk. Who knows? She’s probably got hair down to her toes by now. Knowing that gives Charles and me joy. It gives us comfort.”

But, along with the comfort, Karen said the Vannatters have also found a determination to make things better for the thousands of other children battling cancer each day. That’s why they’ve joined forces with People Against Childhood Cancer and the American Red Cross to push petitions for more federal funding and the lifesaving blood donations that most cancer patients need throughout their treatment.

They are especially proud that the Red Cross is hosting a blood drive in honor of Emma Saturday at the Princeton Church of God on Oakvale Road, noon—6 p.m.

“The goal is to collect 100 units, and we just ask everyone who can to give blood,” Karen said. “I know it’s not the most fun thing to give, but it is really, desperately needed.”

•••

Sept. 9, 2007, the Vannatters — Charles, Karen, Logan and Emma — came home from a perfectly normal trip to church. That afternoon, Karen said she noticed Emma had a fever, but the 16-month-old’s temperature spiked and then fell back to normal. Later that evening, the fever reappeared, but only for a short time.

In the days that followed, Karen and Charles noticed that Emma’s tiny tummy was more distended than normal and that her ankles were beginning to give out occasionally when she walked. Since Emma hadn’t been on her feet that long, they hoped it was just a growing pain of sorts.

That Wednesday, Charles called Karen in when Emma couldn’t help herself stand after a bath, and the following day, Karen discovered the first telltale sign of leukemia.

“I was changing her diaper and noticed that from about mid-thigh all the way to her feet, her legs were just hard and swollen,” Karen said.

She had also developed petechiae, small red spots that are indicative of anything from a broken blood vessel to leukemia. The spots, along with Emma’s hard, swollen legs, prompted the Vannatters to schedule an appointment the next day with a pediatrician.

On Friday, Sept. 14, 2007, Dr. Inas Al-Attar examined Emma and told Karen the little girl’s spleen and liver appeared to be enlarged. The doctor scheduled a series of tests, and Karen took Emma to her mother’s to await word on the results.

“We only waited about two hours at my mom’s house, when we got the call. She said, ‘I’m sorry, but it is leukemia,” Karen said.

From there, the treatment began in a frenzy. Emma’s white blood cell count was through the roof, more than 400,000 above normal, in the tests administered at Princeton Community Hospital. Within minutes of getting the diagnosis, Karen and Emma were headed for Charleston Area Medical Center’s Women and Children’s Hospital, and they met Charles along the way.

When leukemia attacks children, it manifests itself and progresses very quickly. Karen said medical experts estimated the cancer had only been inside Emma up to two weeks when she started feeling the effects. When she was diagnosed, her condition was so severe she was already in the range considered at risk for stroke and hemorrhaging.

By the time Emma got to Charleston, her white count had rocketed even higher, and she required a complete blood transfusion that night.

“She started chemo the next day,” Karen said, still marveling at how laid-back Emma was throughout the ordeal. “Even at that young of an age, they were amazed that she was so calm.”

•••

Emma’s doctors’ early goal was to hit remission within a month, and the amazing little girl did it. She even stayed in remission for a while, but three days before she was set for a scheduled round of chemotherapy, Karen noticed something was wrong.

“I saw that her pupils were really dilated and that she was having trouble seeing,” she said. “She held things really close to her face to see them.”

The Vannatters kept the appointment in Charleston anyway, and as doctors were conducting a CT scan, Emma’s blood work results came back. This time, the news was worse.

“She relapsed, and the cancer had entered the central nervous system,” Karen said.

Because the cancer invaded Emma’s spinal fluid, it had reached her brain and eyes by that time. That was what kept her from seeing.

The Vannatters tried a new drug designed to get a patient into remission quickly; the only problem was that it wouldn’t sustain remission. So, they started working toward a bone marrow transplant at Duke University Medical Center, while the drug had Emma’s condition stable.

Along the way, Emma made it through several rounds of chemotherapy, including one week of extremely intense treatment right before the transplant, and she sustained cranial and spinal radiation in an attempt to target the cancer that had moved into her spinal fluid.

By summer, she was ready for the transplant. She made it through the surgery like the trooper she always was, and though she battled both the leukemia and a common side effect called graft-versus-host disease (GVHD), Emma was headed home from Duke by early August.

Emma’s bone marrow match was strong, and Karen said it looked briefly like her angel was on the road to healing. Then, the GVHD flared up again, causing a rash on Emma’s torso. Docs at Duke decided she was still well enough to go home on Aug. 12, so the Vannatters left the North Carolina apartment they rented for $2,100 a month to be near Emma and returned to West Virginia.

Here, the GVHD got so much worse that the three creams three times a day prescribed at Duke weren’t keeping it at bay. Their Charleston physician sent the Vannatters back to North Carolina, where a special drug was already on hand to tame the GVHD.

That trip resulted in the diagnosis of a staph infection inside one of Emma’s central lines, and she was again admitted to Duke on Aug. 16, and though intense rounds of antibiotics and more blood transfusions controlled the infection, by that time, the treatments used to kill cancer and keep Emma alive were beginning to take their toll on the little girl they were supposed to save.

•••

After a frightening bout with CMV, a virus harmless to most but deadly to cancer patients, elevated blood pressure and electrolytes Karen described as “dangerously out of whack,”

Emma proved she was still a fighter. She was discharged on Aug. 27 and was due back in Duke on Sept. 4, for a six-month visit to follow-up on the progress of her marrow transplant.

As that visit approached, her spirits were high, and she appeared to be doing well right up until the day before the doctor’s appointment.

On Sept. 3, she repeatedly told Karen and Charles her “head hurt,” and she developed a bad case of diarrhea. Though Emma endured most of the testing she was scheduled for that day, Karen said she stopped the exams on the final phase because Emma had gotten so much sicker.

A quick blood test revealed that once again, Emma had contracted either a bacterial infection or a virus of some sort. She was admitted in Duke again.

It seemed every step forward brought at least two or three back in her treatment.

Despite the fact that Emma’s marrow transplant was successful, the complications from her deficient immune system were exacting an extreme toll on the child.

This time, she had adenovirus, which is extremely dangerous to cancer and post-transplant patients. Because of a shortage of research dollars, Karen said there is only one drug approved to fight the virus, and its side effects are scary.

“It will kill the viruses, but unfortunately, it will also kill the kidneys,” Karen said, explaining that September was a time of excruciating decisions for her family. “We knew that if we gave her the drug, she could be facing prolonged dialysis, and we didn’t know if her body could handle that. But, if we didn’t give her the drug, the virus was going to kill her anyway.”

On Oct. 3, the Vannatters reached the point where they had to approve the drug. They gave the OK, but they also signed a do-not-resuscitate order, deciding their baby had been through enough if God decided to take her anyway.

That last day, they made sure to spend as much quality time as possible with Emma, even bringing Logan in to play with his baby sister for what they feared could be the final time.

At approximately 2 a.m. Oct. 4, Emma died with her parents at her side in Duke. She fought for more than a year and was just five months past her second birthday when cancer claimed her.

•••

One of Karen’s favorite photos on the family’s Caring Bridge website, caringbridge.org, is of a butterfly released at Emma’s gravesite ceremony lingering on Logan’s finger, much like Emma’s sweet spirit lives on in her family.

“God gave us a gift through Emma. I truly believe God showed us a small slice of heaven. She never complained through all she had to go through. She always wanted to be happy and help others, to be with others, show others things she learned,” Karen said recently when she spoke to her church congregation at First Baptist Church. “Charles and I look at some of her traits, and we see Jesus and how he wants us to treat others. We truly were given a child of His, not ours.”

Though she knows heaven has one more angel than it did Oct. 3, Karen said there’s still a void in her family. Sometimes the longing hits harder than others.

Logan, who will be 5 in December, was wishing for more time with his baby sister just Tuesday.

“It’s really been hitting Logan the last couple of days,” Karen said. “This morning, we were getting him ready for school, and he looked at Charles and me and said, ‘I want my sister back here.’ We just looked at each other and didn’t say anything, but of course, she won’t ever be back here.”

•••

While nationally, the Vannatters don’t believe nearly enough is being done to combat kids’ cancer, locally, they said the community could not have been kinder.

“We’d just really like to thank all of Mercer County, and it extends even beyond that,” Karen said. “We’ve had so many phone calls, cards, prayers and monetary donations, and people just don’t understand how much they helped.”

They kept every one of the cards, and Karen estimated they alone would fill three or four large shoeboxes.

Though money was not one of their primary concerns for the last year, Karen said the experience with Emma had taught her how much need there is for more cancer research funding and how generous everyday people can be.

Charles works as a representative of the West Virginia Fire Marshal’s Office, and members of the Athens Volunteer Fire Department started the Emma Vannatter Fund at First Community Bank to help them make ends meet.

Those funds became increasingly welcome as insurance funds dwindled, apartment rent became essential and the mortgage back home stayed the same, Karen said.

“Fighting cancer takes a huge debt toll on families,” she said, explaining that Emma’s treatment exceeded the lifetime $1 million mark Public Employees Insurance Association allows for one person.

In fact, there was still more than $200,000 in medical bills that remained in question this week.

The Jonathan Powell Hope Foundation was also extremely helpful, providing an EZ pass to travel on the West Virginia Turnpike without tolls, gas cards to furnish fuel and more. The organization established in tribute to another little boy who fought cancer also administered funds donated in Emma’s name for the Vannatters.

“They’re just a wonderful organization,” Karen said.

•••

For more information on People Against Childhood Cancer, visit curechildhoodcancer.ning.com. To sign the online petition to raise awareness and funds for research, visit www.thepetition site.com/1/CureChildhoodCancer.

To donate blood for anyone served locally by the American Red Cross, simply stop by the Princeton Church of God Saturday, noon—6 p.m.

Emma doesn’t need the donations any more, but her mom said she’d love knowing everyone showed up to support her and help other kids in need.

“She just always smiled and loved everybody,” Karen said.

— Contact Tammie Toler at ttoler@ptonline.net.

        

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