Rare childhood cancer a "death sentence'"says mom working to spread awareness
JEFFERSON CITY — The day Adleigh was diagnosed with a rare form of cancer both her and her mother's lives changed forever.
The cancer is so rare, Festus, Mo. mother Dawn Biles had to go to four different doctors to find out Adleigh had Diffuse Intrinsic Pontine Glioma, DIPG.
It is a type of pediatric cancer most commonly diagnosed in the ages of 5 to 7 years.
Adleigh was 3.
"I never went back to work. She never went back to school," Biles said.
DIPG is a brain tumor that lodges itself in healthy brain tissue and eventually disconnects the brain from its ability to perform important bodily functions. Patients have difficulty walking, swallowing and even breathing.
"In addition to all of your motor skills that will just go one by one, the child's brain will still be aware of what is happening all the way up the end," she said.
According to DIPG.org, there is no clear cause for the disease, and radiation is only a limited option for treatment.
"DIPG is a death sentence right away for the kids," Biles said.
On Nov. 1, 2017 doctors predicted Adleigh had as little as nine months to live. She survived 13 months.
Biles first recognized something was off when Adleigh was having trouble moving the right side of her body. Adleigh was even occasionally drooling.
Biles said she was in disbelief when the doctors at Washington University Children's Hospital in St. Louis told her: "She's not going to survive this cancer."
"And I'm thinking, well of course she is," she said. "What do you, what do you mean? You know people with cancer do it all the time."
Then Biles faced a choice. The doctor asked how she wanted her daughter to live the rest of her life.
"Do I choose quantity or quality?" she said.
So off to the beach they went.
"We went out and saw what the world had for her," Biles said. "I knew I had to fit 60 years into a year."
Even with the official diagnosis from the doctors, Biles said she still didn't know much about the cancer or how to help her daughter cope with it.
Not having the information that she would have had if it were another cancer was unacceptable to her, Biles said.
She decided to document the rest of her daughter's life on Facebook so others could learn from her experience.
"I want them to know what cancer looks like," she said.
On the Facebook page HOPE for Adleigh that Biles started, she tried to capture every remaining moment in her daughter's life—from the first week after the diagnosis when Adleigh lost the ability to form a smile, to Adleigh experiencing sand between her toes for the first time, all the way to the very end when Biles tried her best to communicate to Adleigh what heaven is.
While not everyone agreed with Biles' Facebook mission and argued she shouldn't be broadcasting her daughter's life, Biles said she knew she had to think of the greater impact.
"If we have to go through it, then it's going to be known that we're going through it, and if somebody is helped by that, then that's one more person that has more information than I did," she said.
The Facebook page grew to more than 17,000 people who followed Adleigh's story. Some videos leading up to Adleigh's death have more than 50,000 views.
Biles' said her plan to advocate for her daughter and to educate the community was working. Adleigh had an army comprised of prayer warriors, family, friends and caring strangers.
One of the soldiers from that army is Katherine Bader.
She lives in Fulton, and about 15 years ago, her young son severed an artery in his temple causing a brain bleed. Bader spent the next five years in a hospital room until her son defied the odds and made a complete recovery.
Bader, touched by the experience, began volunteering for childhood cancer organizations. Including one that builds personalized handmade doll houses for children with cancer. Adleigh received one of those doll houses.
That led to a connection between Bader and Adleigh, and Bader has been spreading Adleigh's story ever since.
Bader said parents of children who have been hospitalized naturally build a strong connection.
"The bond you have with those other mothers is like no other," she said. "I don't know how else to tell you."
Biles said experiences like her's and Bader's make them part of a group that no one wants to be a part of, normal people aren't in and normal people can't understand.
Raising the odds of survival
It would've been more likely to win the lottery than it was for my daughter to die of DIPG, Biles said.
The day after Adleigh's funeral, Dec. 12, 2018, Biles filed paperwork to turn Hope for Adleigh into a non-profit designed to help families going through a DIPG diagnosis called Adleigh is Forever.
The non-profit will also help educate and bring awareness to DIPG.
Biles also started collecting and raising money for wagons, something she knows from experience is a comfort item and a staple for children in hospitals.
Bader encouraged Biles to take Adleigh's story to the state Capitol. On Feb. 4, the two met with lawmakers and explained the need to raise awareness for and take action on DIPG.
Now, Rep. Becky Ruth, R-Festus, is working to set a hearing date for House Bill 841. It would make Adleigh's birthday, Sept. 9, DIPG Awareness Day in Missouri.
The bill passed in the House of representatives and has been sent to the Senate.
Next up for Bader, Washington D.C.
She is headed there with a group of other volunteers in May to meet with more lawmakers, seeking to increase the percentage of federal funds allocated to children's cancer research, specifically DIPG.