DIPG Patient Family Sleeps in Tents to Save Every Dollar

An eleven-year-old girl fighting a rare and deadly brain tumor is now sleeping in tents with her family. They want to save every dollar for her medical care. Katie Tanton has spent months moving between hospitals since her diagnosis back in January. She suffers from Diffuse Intrinsic Pontine Glioma, or DIPG.

Her father Austin called the news a parent's worst nightmare. The disease attacks the brainstem and controls breathing and heart rate. Survival rates are near zero. Most children live only nine to eleven months after finding out they have it. Surgery cannot remove the tumor because it grows into healthy tissue. Katie first felt double vision and lightheaded while running cross-country last year.

Her mother Breann noted that she had constant headaches before January changed everything. Doctors at a Baton Rouge hospital found a mass on her brainstem. She went to the emergency room right away. On February 18, which was also her eleventh birthday, Katie started radiotherapy. Since then, costs have become impossible for them to handle.

The family left their home in Denham Springs, Louisiana. For the past week they slept in tents while she joined a clinical trial at Nationwide Children's Hospital in Columbus, Ohio. Moving to Ohio helped them get Medicaid coverage. The heat inside the tent is not easy on anyone.

It is not nearly as enjoyable as the phrase suggests when a situation lasts longer than just a couple of nights, Breann told reporters at age 37. Pictures showed Katie sleeping inside a tent on an air mattress with a stuffed teddy bear right beside her. The family moved to Ohio because travel and hotel costs became too high to manage. They needed Medicaid in that state for Katie's treatment. The Tantons explained they could not find housing without jobs, so camping was their only option until then. Breann and Austin told WBRZ that their daughter has stayed strong despite frequent headaches and deep fatigue. Her last MRI showed the tumor had shrunk but caused necrosis. Unfortunately, doctors said the brain cannot tell the difference between living tissue and dead tumor. As the mass shrinks, it causes swelling in Katie's brain. Her mother added that cysts formed right on her cerebellum, making daily symptoms much worse.

Austin Tanton described his daughter as a truly beautiful and lovely sweet girl who undoubtedly does not deserve these challenges of cancer. With three other daughters at home, Breann said they began selling items they could spare. They also raised money for a camper that the family of five could use to live and travel together. Katie kept a smile on her face while hunting for fossils with her sisters and spending time with loved ones in Ohio. Her diagnosis in January hit the young family like a heartbreaking shock. Financial stresses weighed heavily on them all. On Facebook, her father wrote that if he had a million dollars, he would spend it all making Katie happy. He let her do everything she wanted while she could. Life is so cruel and unfair; one minute she was running track, the next minute cancer was killing her.

Katie's aunt, Annie Normand, said she and her family have worked hard to support the Tantons. She started a new fundraiser with a goal of raising $50,000. Once I raise that amount, I will shave my head, she declared. Katie's aunt recently had her niece's name tattooed on her arm as a reminder to keep working hard to help Katie. She described the young girl as amazing. Austin called the diagnosis a parent's worst nightmare because it targets the brainstem and has a near zero percent survival rate. On Facebook, Normand wrote that she hopes this gives her brother and sister-in-law one less thing to worry about. They can spend their time and energy where it belongs with Katie and her sisters. Hair grows back, but these struggles do not always fade away so quickly.

Normand recently inked her niece's name on her arm to keep pushing for help with Katie. She told reporters that she is proud of her strength and loves her deeply. The story spread quickly. Within hours, Cajun Navy 2016 contacted the family on Tuesday. They offered to pay rent for four to six months once a rental home is found. Jon and Laurie Bridgers, the founders, explained their mission clearly. Neighbors helping neighbors remains their core purpose. They feel blessed to continue that work. The non-profit covered hotel costs until Thursday. Now the family stays in an extended suite through August 18 while they search for permanent housing. Breann said it feels like breathing again after a long struggle. She never imagined such support would arrive. This aid matches their prayers exactly. Austin voiced his pain about what comes next. He fears the anguish his sisters will face when left alone. In early July, he wrote on Facebook that he would go to any extent to save her. DIPG is an unrelenting force that destroys everything in its path. The pain of knowing her outcome is devastating. He watches family after family suffer the same fate and is consumed by fear. Austin described his daughter as a truly beautiful and lovely sweet girl who doesn't deserve cancer's challenges.