Holding on to hope: Deion's battle with DIPG
Posted July 7
Madison County, NC — Each day is a battle for 5-year-old Deion Douglas. He was diagnosed in August 2016 with a rare type of brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG).
Deion was given between 9 and 12 months to live because there is currently no cure for this type of cancer. He is now on month 10.
"My son was 4, and they tell me, 'Quality over quantity,' and to make memories," his mother Amber Kimery recalled.
She documents every moment with Deion through videos and photos. Looking at photos taken at his birthday party just weeks ago, Amber is heartbroken as she sees how quickly her son is changing.
"Now he can barely walk, and if we go anywhere, he's in a wheelchair. My 5-year-old son is in a wheelchair," Amber said.
She said 30 rounds of radiation shrunk the brain tumor about 40 percent, but 3-months later, an MRI revealed the tumor had grown back to the same size.
Deion's doctor, Dr. Krystal Bottom, a pediatric hematologist and oncologist with Mission Hospital in Asheville, said radiation is the best treatment available right now, but only provides temporary improvement.
"It is a very aggressive tumor," Dr. Bottom said. "It takes over and it manifests itself as just a progressive decline. In the neurological function and the basic walking, talking, eating, drinking and eventually the heart and the breathing," she described.
Dr. Bottom said each year in the United States between 200 and 400 children are diagnosed with this type of brain tumor and only five have been diagnosed in Western North Carolina in the past few years.
Deion's mom is putting hope in a treatment option in Mexico called "intra-arterial chemotherapy." Dr. Bottom said this treatment is offered in the United States, however it is temporarily closed for revisions.
Dr. Bottom said she is doing everything she can to support Deion and his family through this tragic time and hopes that doctors outside of the country are also being honest with them.
As Deion races against time, his mom is holding out hope for a miracle.
"Miracles happen every day, and I'm hoping and praying he's one of them," Amber said. She hopes that by sharing Deion's story, it will raise awareness and funding for DIPG.
Amber said they are still awaiting approval for the treatment in Mexico, but trying to raise funds for the trip because of the steep out-of-pocket cost.
Chief of Pediatrics for Mission Children's Hospital, Dr. Susan Mims, said raising awareness is the first step to increase research and improve the outcome for children battling this type of cancer.
Dr. Mims said Mission Children's Hospital has more than 60 board-certified pediatric specialists in 23 different disciplines and they also reach out to partners around the nation to deliver treatments and care to their Asheville patients.
She encourages families who have children battling brain cancers to also reach out to the Pediatric Brain Tumor Foundation, located in Asheville, for additional resources.