For parents, hope then memories all that remain after DIPG

ABOUT DIPG

About 250 kids in the U.S. are diagnosed with DIPG each year.

The most common symptoms are:

SOURCE: Diffuse Intrinsic Pontine Glioma (DIPG) Foundation

Brooke Desserich remembers walking into the hospital and seeing doctors in the office.

They were there to discuss the diagnosis of her daughter, Elena, 5, who she was told had Diffuse Intrinsic Pontine Glioma, or DIPG, a fast-moving brain cancer without a cure.

At the time, Desserich had never even heard of that type of brain cancer.

She was informed by the medical experts that less than 1 percent of children diagnosed with DIPG survive.

“I knew that meant zero percent,” the mother said. “They just didn’t want to say zero percent.”

Still, Desserich held out hope, as any parent would.

“Surely there is a chance, surely there’s something,” she remembers thinking at the time.

Now she knows that’s not the case.

“There is nothing,” she said of the aggressive form of cancer.

DIPG has been in the news lately.

The one-year anniversary of Lauren Hill's death was April 10, 2016, the same day a Cincinnati boy, Huxley Williams, 3, died from DIPG.

Kyler Bradley, 10, a fifth-grader at Fairfield Intermediate School, died Tuesday night, hours after his parents, Kirk and Rebecca, took him off the ventilator. He was diagnosed with DIPG on Oct. 16, 2015.

On Tuesday night, as news of Kyler’s deteriorating health spread throughout the community, a prayer vigil was held outside his home. When Pastor Drew Wilkerson of BridgeWater Church, where the family attends, announced Kyler’s ventilator was removed, several people on the front lawn broke down in tears. Kyler died about 90 minutes later, Wilkerson said.

One parent at the prayer vigil said she knows how Kyler’s parents may have felt. Tiffany Taylor, of Deer Park, lost her son, Jacob, 9, to DIPG in 2010. She brought another son, Nathan, 12, to the vigil.

When asked to describe the pain of losing a child to DIPG, she said: “It takes away everything but their brain function. They know what’s going on, but they can’t use their arms. They can’t communicate but they are fully aware. As a parent when you watch your child go through that, it’s unbearable.”

She paused, then added: “This disease is relentless. It’s a monster. It doesn’t give up until it takes over everything in a child’s body. You are helpless to do anything.”

Throughout Elena’s nine-month battle against the disease, Brooke Desserich said she never lost faith, though she already knew the outcome. She had to fight for her daughter.

“You get strength out of necessity,” she said. “You can’t give up if you expect them to fight.”

She said every week Elena lost a physical function while her brain remained active. One week, she couldn’t stick out her tongue, the next the right side of her face was paralyzed.

“It was terrible,” Desserich said. “It’s a horrible way (to die).”

After Elena’s death in 2007, the Desserichs founded The Cure Starts Now Foundation. Nine years ago, little research was being performed to find a cure for DIPG. Since about 200 to 300 children are diagnosed with DIPG every year in the United States, Desserich said hospitals and research centers spend more time — and resources — working to cure more prevalent cancers.

Only 4 percent of donations given to national causes such as the American Cancer Society go to pediatric cancer research, and most of that goes to the more common types such as leukemia, according to the society.

Through the work of the foundation, Desserich said $3.7 million was raised last year earmarked for DIPG research.

“We are light years ahead,” she said, comparing 2007 to 2015.

Those funds offer parents “a little more hope,” said Jen Gault, marketing coordinator for the foundation.

Much of those funds were generated by Hill and her supporters.

As a senior at Lawrenceburg (Ind.) High School, Hill was diagnosed with DIPG just 49 days after signing on to play basketball at College of Mount St. Joseph. Determined to help fulfill her dream of playing college basketball, Mount St. Joseph Coach Dan Benjamin got a waiver from the NCAA to move up the team’s season opener so that she could play before her condition worsened.

About 10,000 fans packed inside Xavier’s Cintas Center as Hill, 19, made her first layup as a college basketball player. She played in three more games before becoming an honorary coach.

She raised $1 million and an additional $1.2 million was raised after her death, the foundation said.

Desserich said Hill “lives in my brain.” The two became close friends, and every time Desserich visited, Hill greeted her with the same question.

“Have we found a cure yet?” she said Hill would ask.

Since Hill passed away, hundreds of other kids have died from DIPG. That bothers Desserich, who said one death is one too many.

“I know we’re not moving fast enough,” she said. “Lauren didn’t want any child to go through what she went through.”

Lauren Hill’s mother, Lisa Hill, said when her daughter was diagnosed, she focused on the positive, not the statistics.

“You want to be the first to buck the system,” she said. “You want to be the first to find a cure. You need that mentally.”

You fight for yourself almost as much as you fight for your child, she said.

“There are days you can barely get out of bed,” Lisa Hill said. “It’s very challenging. But you keep going through the last shred of hope. But in the back of your head, you know how it’s going to end.”

Three months after Lauren was diagnosed, the “DIPG monster” started taking over her body, her mother said. One day she couldn’t swallow. Then she couldn’t walk.

She called DIPG the “biggest bully on the block.”

In the days, weeks and months since her daughter died, Lisa Hill has gotten “lost in the sea of emotions and loneliness.”

Then she added: “You almost have to force yourself to be happy. You don’t want to go on.”

This New Year’s Eve was difficult for the Hill family. They turned their calendar from 2015 to 2016 without Lauren there to celebrate.

But Lisa Hill said she is thankful for the number of years her daughter lived. She knows Lauren could have been diagnosed much younger and died a little girl.

“For me I feel like one of the lucky ones,” she said. “I got to see her become a woman. I got to see my completed work.”

That wasn't the case for a Hamilton mother, Karen Wright. Her daughter, Kyleigh, died on July 12, 2015. She was 14.

Kyleigh, an eighth-grader at Garfield Middle School, was diagnosed on Dec. 9, 2014 with Glioblastoma, a cancerous brain tumor.

Her tumor was too large for an operation, so the doctors started chemotherapy and radiation. But after she absorbed the maximum doses medically allowed of each treatment, it was clear nothing was working. And on Feb. 11, doctors told her mother the tumor was incurable.

In the nine months since Kyleigh’s death, her parents, Roger and Karen, have had to learn how to live again. They were so focused on Kyleigh and her care, they forgot about themselves.

“You put your lives on the back burner,” she said of caring for an ill child. “We had to start living again. Start going to the store, paying bills.”

Your child never leaves your mind, her mother said.

“Every conversation started with, ‘Kyleigh loved that…Kyleigh did this…Kyleigh did that,’” she said. “At some time, and I’m sure it’s different, you have to accept that there is no cure. There is just a helpless feeling and that’s not something you want as a parent.”