KNOXVILLE, Tenn. (April 21, 2017) -- There’s 15-year-old Ian, who complained of a headache during a youth retreat. He eventually fell to the ground as he stepped out of the church van, which led to a helicopter ride and emergency surgery.
There’s 21-year-old Jess, who still has side effects from nine hours of surgery followed by radiation and chemotherapy. She was 14 at the time, but she still gets nervous whenever her doctor sees a need to order more tests.
There is three-year-old Tillery, who has endured 14 surgeries in the last 2 ½ years. More recently, there is four-month-old Owen, whose parents went from newborn joy to heartbreak within a matter of weeks.
All of these children were diagnosed with brain tumors. All are children of Holston Conference.
Concerned about their own children and others who will follow, a group of Holston parents and churches are supporting a new fundraising and awareness event. Scheduled on May 7, "Go Gray Sunday" aims to fight pediatric brain tumors through research.
The event (GoGraySunday.com) is sponsored by the Holston Conference Ministers’ Spouses, with 20 United Methodist churches participating so far.
“I just started my day by reading a blog written by a mom about her child who is dying -- a baby who is dying from a brain tumor,” says Alana Stephenson Phillips. “I'm immersed in this world of children who are sick and dying. This is why I'm constantly fundraising. This is why I'm constantly sharing the statistics.”
Phillips is the clergy spouse who created “Go Gray Sunday,” which invites congregations and others to wear gray, sell lemonade, take collections, pray and share information on May 7.
The gray, of course, refers to “gray matter," which refers to neural tissue. It’s a shade other than pink, representing breast cancer; or purple for pancreatic cancer; or gold for childhood cancer.
Phillips cites statistics like some people talk about sports or weather. After all, she’s the mother of a child whose head was shaved and cut open 11 times -- and she’s mad that so many kids suffer while emphasis and research dollars are overwhelmingly devoted to other causes
“In 2016, brain tumors became the number-one disease killer of children in the United States, passing leukemia,” she says, citing the Pediatric Brain Tumor Foundation.
“Every day, 13 children are diagnosed with a brain tumor,” she says, quoting The Cure Starts Now. Of the children who are diagnosed, only 66 percent will survive five years.
Phillips is married to the Rev. Joe Phillips, pastor of Norwood United Methodist Church in Knoxville. Their tiny daughter, Tillery, was diagnosed on Sept. 30, 2014. Through Alana's blog and social media, hundreds have followed Tillery’s harrowing story as she fought her way to a near-normal life today. The Phillips family discovered a huge community of people also dealing with brain tumors and childhood cancer along the way.
Since August 2015, Phillips has raised more than $17,000 to fight childhood cancer through various events, T-shirt and jewelry sales, and Facebook pleas (for instance, asking readers to give $1 for every stitch in Tillery’s head).
That’s not enough, Phillips says, and she’s found other families and congregations who agree.
Ian Conner is a member at First United Methodist Church of Hillsville, Va. In January 2016, his head started to ache while attending a winter youth retreat, Resurrection, held each year in Gatlinburg, Tenn.
“He had a five-centimeter brain tumor, the size of a lemon, at the top of his spine and underneath his cerebellum,” says his mother, Renae Conner. There was no prior warning or indication. The tumor was benign, and Ian was saved with a 13-hour surgery at University of Virginia Children’s Hospital in Charlottesville.
Yet, Conner tears up as she shares the story.
“Of all the things that can happen to a parent, this is horrible, horrible. We are one of the blessed ones, but so many children are not out of the woods,” she says.
In the United States, more than 28,000 children and teenagers are living with the diagnosis of a primary brain tumor, according to the Pediatric Brain Tumor Foundation. Survival rates for many childhood brain tumors have improved over the past 30 years. However, survivors often suffer from lifelong side effects caused by their illness as well as by treatments.
Jess McMurray, age 21, is a member at Salem United Methodist Church in Blountville, Tenn. Seven years ago, her brain-tumor surgery saved her life but left behind physical and mental challenges that are a daily reality for her and her mother.
“No one is safe from this. Brain tumors and childhood cancer touch every community,” says Cindi McMurray. “This is not pretty. People don’t want to think about kids getting cancer and dying, but people need to know.”
As Cindi spoke on the phone, she and her daughter were in the midst of visiting a cemetery. Jess had a “best friend,” Joseph, who didn’t survive his brain tumor, Cindi explained. Jess could be heard in the background, exclaiming that grass had finally grown over his grave.
Pediatric brain tumors aren’t like those in adults. Children’s brain tumors require specific research and different treatments, according to the Pediatric Brain Tumor Foundation website: “Research focusing on pediatric brain tumors is crucial to saving children’s lives and improving survivors’ quality of life.”
CLOSE TO HOME
First Broad Street United Methodist Church decided to observe “Go Gray Sunday” after learning about the diagnosis of baby Owen.
Owen Steinmann, age 4 months, is the first child of the Rev. Amanda Dean. She is a native of Holston Conference, serving at First Broad Street as associate pastor from 2014 to 2016, before moving to the North Carolina Conference. Last month, Owen was diagnosed with a type of metastatic brain cancer from which no child has ever survived. On April 21, Owen's father announced that he will begin hospice care.
“It’s an opportunity for our congregation to feel like they can do something,” said the Rev. Misti McCreary, associate pastor at First Broad Street in Kingsport, Tenn. “With May 7 falling a week before Mother’s Day, it’s a good time to emphasize this.”
At First United Methodist of Hillsville, for example, Conner handed out lemonade bottles to the youth (who are very aware of what happened to Ian). The youth were asked to return their bottles filled with change on May 7.
Other participating congregations include Norwood in Knoxville, Tenn.; Mt. Zion and North Tazewell UMC in Tazewell, Va.; Bewley’s Chapel in Morristown, Tenn.; Salem in Blountville, Tenn.; Oakland in Galax, Va.; Mt. Vernon in Hiltons, Va.; Daisy in Soddy-Daisy, Tenn.; First in Pulaski, Va.; Broadway in Maryville, Tenn; Oakdale in Oakdale, Tenn.; Trinity in Knoxville, Tenn.; Bruner's Grove in Bybee, Tenn.; St. Mark in Clinton, Tenn.; Benton in Benton, Tenn.; and Pleasant Hill, Walden's Creek, and Union Grove in Sevierville, Tenn.
In addition, the Phillips family has registered 155 people so far for a 5K on May 20. “Tillery’s Hustle for Hope” will be held at Victor Ashe Park in Knoxville and will also support pediatric brain tumor research through Alex’s Lemonade Stand. The 5K is sponsored by Powell United Methodist Church and Holston Methodist Federal Credit Union.
Annette Spence is editor of The Call, the Holston Conference newsletter.