Yelm resident, Nathan White, 11, is currently in the fight of his life.
A little over a week ago, on Thursday, Oct. 22, the Thurston County boy’s family heard news that no parent or relative ever wants to experience, as Nathan was diagnosed with diffuse intrinsic pontine glioma, also known as DIPG.
DIPG is a rare, fast-growing and aggressive type of brain tumor that grows in a vital part of the brain — the pons, which is in the lower brainstem. The pons controls vital bodily functions, such as breathing, heart rate, blood pressure, balance and the nerves that manage eye movement, facial expression, swallowing and speech.
DIPG appears almost exclusively in youth patients, with most cases taking place between ages 5 and 10. It accounts for 10% to 15% of all pediatric brain tumors.
Karissa Anderson, Nathan’s aunt, told the Nisqually Valley News on Thursday, Oct. 29, that the diagnosis of DIPG is “pretty aggressive” and “currently terminal.”
“They don’t have a cure-all,” Anderson said. “They can’t remove the tumor because of how it’s intertwined in the brain stem. It’s just way too risky to attempt. What they’re going to be doing is they’re going to start radiation. I believe that starts next week. They’re hoping to finish his run of radiation the week of Christmas. With radiation, we’re hoping the tumor shrinks. If not, then the other hope is that it doesn’t continue to grow.”
According to Anderson, there’s a couple different avenues with treatment trials that Nathan’s family has looked at, including with Seattle Children’s Hospital.
So far, Nathan’s family has been able to create strong contacts with families who have gone through a loved one experiencing DIPG, and with families who have, unfortunately, lost their child due to the illness.
“There’s even one family whose daughter has been battling (DIPG) up at Seattle Children’s Hospital for four years,” Anderson said. “In the last two years, her tumor has shrunk by 90% and she has been symptom-free for two years. So, there is hope.”
Anderson added that Nathan’s initial diagnosis of terminal DIPG will come down to what type of tumor he has. His family expects to hear back from pathologists by Monday, Nov. 2.
“This all just hit us really hard last Thursday (Oct. 22). That’s when Nathan’s mom, Bonnie (Burt), found out,” Anderson said. “She took Nathan in for a well-child checkup. We had my niece’s birthday party that previous Friday, and we all kind of noticed he was a little off. We just kept saying ‘Nathan, come back to Earth.’ Some other moms at a pumpkin patch field trip noticed that his stability was really off and his responses were really delayed.”
According to Anderson, Burt mentioned those symptoms to the doctors during their trip last Thursday. The doctors quickly recommended an emergency room visit to Mary Bridge, where Nathan was taken and ultimately received an MRI.
“When you hear that news, and it hits close to home, it’s devastating,” Anderson said. “Not only are you telling us that this 11-year-old has a brain tumor, but you’re now telling us that it’s a death sentence. That’s been really hard for a lot of us to stomach. Nathan has kept his hopes up through all of this. The child-life specialists at Mary Bridge have been fantastic with helping navigate how to explain this to Nathan. He has had moments where he breaks down because it’s scary. He’s old enough to know the ‘c-word’ for cancer. He’s old enough to know what death means, and he’s experienced that with having to put their animals down to sleep or us losing loved ones. This definitely hits close to home. I think all of us are taking it as needed.”
While this has admittedly been the toughest time that Nathan’s family has gone through, Anderson said it has also brought the entire family much closer together.
She noted that Nathan has been so positive about his diagnosis since receiving it a little over a week ago — but that’s just who he is.
“He’s just the most genuine kid that I’ve ever encountered,” Anderson said. “He’s just the purest form of a human being. He doesn’t have a single bad bone in his body. I’ve never heard him raise his voice. I’ve never seen him get mad. That’s just who he is, and that’s why we get so angry. Why him? He’s just too good for this world.”
Since Nathan’s diagnosis, a GoFundMe fundraiser has been launched to help support him and his family through this time of uncertainty. So far, according to Anderson, the support shown toward Nathan and his family has been incredible.
The crowdfunding campaign had raised more than $28,000 of its initial $35,000 goal as of Friday morning.
“Bonnie wants people to know who Nathan is,” Anderson said. “Whether we have days, months or years left with him, inevitably, unless there’s some cure they come up with, Nathan’s life will be cut short. Bonnie’s goal is she wants people to know Nathan, because you’re lucky to know him. You’re just so lucky to know him. She wants to bring awareness to this, because if for some reason there’s not a cure in Nathan’s time, we want to help get to where there is a cure for families in the future.”
The support shown toward Nathan and his family by those who have learned about his story, and the number of people who have reached out directly to his family to share support, is ultimately what has kept his parents, Bonnie and Jordan Burt, moving forward.
Anderson noted that it was just two years ago when Bonnie nearly died due to complications from diverticulitis. That diagnosis and recovery process rattled a lot of circumstances for her family.
“They haven’t been able to catch up. This fundraiser is helping with a huge burden off of their shoulders so they’re able to keep the home that is Nathan’s home,” Anderson said. “He is an animal lover, and so they have dogs and cats and his chickens. They’re able to continue caring for them.”
The GoFundMe link can be accessed at https://tinyurl.com/NateTheGreat1.
“I would love to say that the GoFundMe is going straight to research for DIPG, but right now, it’s just keeping our family afloat and it’s bringing awareness that’s connecting us to families who are currently working on funding for DIPG,” Anderson said.
To stay up to date with Nathan’s journey through DIPG, follow the family’s page on Facebook titled “Nate The Great- Big Heart. Big Dreams. Greatness Beyond DIPG.”
