Jeffrey was my brother’s fourth child. He had beautiful big brown eyes and a gentle nature. We adored him.
When my family gathered for Christmas in 1976, we noticed he was falling as he tried to keep up with his siblings and cousins who were galloping around the living room.
On Dec. 30, my brother and sister-in-law decided to take Jeffrey to Cardinal Glennon Children’s Hospital for an evaluation. Only a day later, Jeffrey had surgery. I didn’t know it at the time, but his prognosis was grim.
Jeffrey was 8 years old when he died in February 1978, a little over a year later. The once-active little boy was confined to a wheelchair before his death, unable to walk, talk, swallow, and eventually unable to breathe. It was devastating.
At the time, I knew Jeffrey died of an inoperable brain tumor, but I didn’t know the disease he died from had a name.
I now know that name, because of 4-year-old Adleigh Hartog, who died Nov. 30, 2018, at 4 years old, and the efforts of her mother, Festus resident Dawn Biles, who wants people to know about Adleigh and the disease that took her life.
Adleigh died of DIPG, or Diffuse Intrinsic Pontine Glioma. So did Jeffrey.
I called Dawn for a story about legislation Gov. Mike Parson signed in July to designate Sept. 9, Adleigh’s birthday, as DIPG Awareness Day in the state of Missouri. Dawn and other mothers of children who have died from DIPG lobbied for the legislation.
So what is DIPG? It is one of the deadliest forms of childhood cancer, usually striking children who are 5 to 8 years old. Less than 10 percent of children who have it will survive as long as two years.
Located in the brain stem, DIPG rapidly destroys the connections between the brain and the body. This area of the brain controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance.
“When the brain gets suffocated off because of damaged tissue, they (the children who have DIPG) watch their running go away, their ability to eat go away, but the brain knows,” Dawn said. “They (the victims) are right there to the end.”
In the 41 years since Jeffrey died of DIPG, the treatment protocol for the disease hasn’t really changed. Removing the tumor isn’t possible without causing severe brain damage or killing the child, so doctors use radiation to try to shrink it.
But radiation has only a short-lived benefit. According to defeatdipg.org, “Even for those patients whose tumors shrink during radiation, the treatment does not increase their chances of survival, and the tumor begins to grow again within months. Because DIPG patients who do not undergo radiation have a median survival length of roughly five months, radiation therapy typically extends a patient’s life by about three months.”
No wonder a diagnosis of DIPG is so devastating.
After talking to Dawn, I began wondering if Jeffrey might have also died from DIPG, so I messaged my sister-in-law and asked her if that was possible, and she answered back, “That is what they told us it was. Back then, there was not much known about it.”
When I told her that the treatment for DIPG is still so ineffective, she replied, “I would have thought that there would have been some progress.”
She sent prayers to Dawn.
Dawn knows that having a DIPG Awareness Day is not going to cure children with DIPG, but she believes the first step to finding a cure is making people aware that the disease exists, “Because if nobody knows about it, how can we do anything about it?”
According to Dawn, only 3.8 percent of funding for cancer research is designated toward curing pediatric cancer. She said she wanted to donate Adleigh’s brain for research, but no one was interested.
“When you’re picking out a casket for your 4-year-old daughter, that really makes you mad,” she said.
But research is being done. Doctors and researchers are searching for effective chemotherapy agents that would be tailored to the particular characteristics of a DIPG tumor. Although their efforts haven’t resulted in success yet, there is hope that an effective treatment may be found.
If you are interested in joining the fight again DIPG, Dawn suggests donating to The Cure Starts Now Foundation at www.thecurestartsnow.org. After credit card processing fees, 100 percent of your donation will go directly toward research into “cancers that are immune to conventional treatment; those cancers for which there are no treatment; those cancers that affect children; and those cancers that are the biggest bullies.”
As Dawn says, DIPG is the “worst of the worst.” For the 239 children diagnosed with DIPG in the United States last year and their families, help can’t come too soon.
