One of the worst things for a parent to imagine is being told that their child has a terminal illness. Two Jeffersontown families were given this news about their sons, both of whom have diffuse intrinsic pontine gliomas (DIPG), which are tumors located in the brain stem. While some brain cancers are treatable, DIPG has a two-year survival rate of 10%. According to the Michael Mosier Defeat DIPG Foundation, the median survival rate is nine months from the time of diagnosis.
David Turner Jr. and Kyler Buckner have had different DIPG experiences, but what they have in common are families that adore them, school communities that have rallied around them, and positive attitudes that would put the bravest adults to shame.
What You Need to Know About DIPG
Renowned astronaut Neil Armstrong’s daughter Karen was diagnosed with DIPG in 1961, and according to Liz Turner, David’s mother, not much has changed regarding the protocols for the disease since that time. Radiation is the only tool proven to reduce symptoms, and it may shrink tumors. There is no cure.
It might seem that DIPG, or any cancer, would have common symptoms, but there is a wide variance in DIPG symptoms and progression. David Turner Jr. came home from school on April 16, 2018, when he was six years old, saying that he had hit his head. Liz says he was acting silly and holding his head to one side, which she thought may have been related to David having torticollis as an infant. She took David to a pediatrician that afternoon, and was given instructions to watch him that night and bring him back the following morning if things still seemed unusual.
The next morning David’s face seemed to droop on one side, so Liz took him back to the pediatrician. When the doctor checked David’s muscle tone by tapping his knee and elbow, his leg shot out and his fingers flared in a response that was dramatically different from anything Liz had seen before. She was told to take David to the emergency room.
At the hospital, David was taken in for an MRI while Liz waited with her mother and her husband, David Sr. Before the MRI was complete, the emergency room doctor told them there was a mass on David’s brain stem, and they needed to bring in an oncologist. When Liz called David’s school, Tully Elementary, to ask about when he hit his head, she was told that he hadn’t.
“Come to find out, he had had a headache,” Liz says. “His head hurt like he had hit his head.”
David was moved to the oncology floor so that doctors could determine whether they could do a biopsy, which would allow him to participate in clinical trials. Some neurosurgeons advised David Sr. and Liz not to do a biopsy since it wouldn’t change the ultimate outcome and could cause damage due to the location of the tumor. Other surgeons thought it was possible. Ultimately a doctor determined that he could do a biopsy, but it wouldn’t happen until he returned to the U.S. from an international conference.
Rather than sitting at the hospital since nothing could be done at that point, David’s parents took him to the Thunder Over Louisville event for the first time.
“At the end of the night he said, ‘Mommy, this was the best day ever – I want to come next year,’” Liz says. “So that became our theme.”
Since that time, the Turner family has tried to do something to make each day the best day ever for David.
Kyler Buckner’s diagnosis was different. In September of 2019, he began complaining of headaches. His pediatrician noticed that his face was drooping, but his neurological tests suggested everything was fine. After the headaches stopped his personality began changing, as well as his balance.
“He became irritable and didn’t want to play with the other kids at Cub Scout camp,” his mother, Kristen Mackin, says.
Mackin took Kyler to the emergency room, thinking he may have had a stroke. A CT scan showed a mass and bleeding on his brain, and he was taken to a children’s hospital where an MRI was done. He was diagnosed with DIPG and hydrocephalus, which required a shunt to drain fluid.
“Basically, with DIPG they just tell you, ‘This is the end result. There’s nothing we can do,’” Mackin says. “They gave us a book if I wanted to read it. I didn’t get past page two before I started crying uncontrollably and threw it to the side.”
Following his diagnosis, David was not able to participate in any clinical trials, but he has been able to undergo three radiation treatments and take high-dose steroids, which cause facial swelling and mood swings. His first six-week radiation treatment shrunk the tumor by 50%. He was also able to take some chemotherapy infusions at home, as a way to keep the tumor from growing as quickly.
A second round of radiation in the summer of 2019 worked well for David. However, in December of 2019, he experienced increased symptoms that worsened in late March of 2020, to the point that David was having trouble swallowing and breathing. He had a third round of radiation treatment in April of 2020 that improved his symptoms again. As of late June, Liz says David has a significant foot drop, and wears a brace in order to walk. He is unable to use his right hand past his elbow.
Kyler has been traveling to San Francisco, California, every four to eight weeks to participate in a convection-enhanced delivery (CED) treatment trial, in which a chemotherapy drug goes through a catheter directly to his tumor.
“They drill a tiny hole into his skull and screw in a type of plastic cap,” Mackin says. “It takes them from 9 a.m. to 5 p.m. or later to do half the treatment. If he doesn’t show too much weakness, they do the second round.”
In late June of 2020, Kyler finished his third round of CED.
How Life Has Changed
In addition to scheduling treatments and managing side effects, as well as contending with the symptoms of DIPG, David and Kyler’s families have had to make adjustments to life in many ways.
Both families’ lives have been impacted economically. David Sr. stopped teaching after his son’s diagnosis, and Liz has had to take leaves of absence from her job at UPS. Mackin left her job as an office assistant in order to care for Kyler, whether he is in Louisville or California. Both mothers say their sons’ elementary schools, Tully and Farmer, have been supportive and organized fundraisers to help the families pay medical bills and do special activities with their sons.
One of the biggest effects of DIPG for the families has been psychological. What you expect to do and be as a parent changes dramatically the moment you know your child will not live to see adulthood, Liz says.
“His diagnosis really changed everything – the little things that we used to worry about and that people get caught up in do not matter to us anymore,” she says.
The Turners strive to make David’s life enjoyable each day, especially when he has had to undergo radiation for 30 days in a row.
Kyler’s stepdad, Brian McElroy, and Mackin try to keep Kyler’s life as normal as any other nine-year-old boy’s life might be.
“We just live and laugh and love, and spend time together,” Mackin says. “We do everything we can to make the most of every day that we have together without worrying.”
What Mackin keeps inside herself is challenging.
“I am not doing great – I have high-level stress and anxiety,” she says.
Both boys have done Make-A-Wish trips, and David’s parents have taken spontaneous trips with him to Myrtle Beach, South Carolina. Liz’s brother, who works in federal law enforcement, has helped to schedule fire truck and police car rides for David. He has also been able to explore military cockpits and ride in a helicopter. Kyler, who has an older brother and younger sister, has been trying to have a normal summer before his next trip to California.
The rarity of DIPG puts affected families in a small and lonely group. David and Kyler’s parents hope that by telling the boys’ stories, more research can be done so that 60 years into the future, a child suffering from DIPG might only have to undergo radiation as a standard treatment and live a longer life.
Writer / Carrie Vittitoe