The Tantons are doing everything in their power to make sure their 11-year-old daughter, Katie, has every opportunity possible to fight Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive terminal brain cancer that primarily affects children.
Earlier this year, Katie was accepted into into a new TarGeT-A Clinical Trial at Nationwide Children’s Hospital in Columbus, Ohio. The trial involves her taking two daily medications, as well as attending monthly appointments in Ohio.
Because the Tantons were living in Denham Springs and on Louisiana Medicaid, Katie’s Ohio trial isn’t fully covered by insurance. On top of the health insurance challenges, the Tantons have been making monthly round trips to Ohio at least one week a month, clocking in around 2,000 miles. They also have to pay out of pocket for hotels, food, medications, fuel, car rentals and car insurance, etc.
Read more: From headaches to heartbreak: 11-year-old’s fight against terminal brain cancer
Moving challenges
All of that has left them with no other option than to move to Ohio, which they are willing to do for their daughter. But the move hasn’t been easy.
Right now, the family has resorted to camping.
On Aug. 1, Breann Tanton, Katie’s mom, told UWK, “We are camping and it is HOT and humid. Funds are low and we’re trying to reserve what we have left for moving (if we ever find a place and get to that point).”
“Our family is totally uprooted and we have yet to find a rental home. The cost of constant travel and living for a family of 5 is weighing on us,” Breann continued. “We’re at the point where we are ready to live full-time on the road in an RV camper set-up and give up on finding a rental home, even though that’s not exactly what we want to do. But until we find something “permanent” in Ohio, I can’t get Ohio Medicaid, which means the medical costs will keep mounting.”
Breann said one of the things that would be a big help to her family right now is help with housing. “If someone has a large RV camper with a bunkhouse in great condition they would like to donate or sell for a fair price, that would also be a blessing,” she explained. “We had one donated to us several months ago, but unfortunately, it needed too much work to be livable and we just didn’t have the time or funds for the project.”
Katie’s health update
When it comes to Katie’s health, Breann said that her daughter is struggling both physically and emotionally.
“Her last MRI showed the tumor had slightly shrunk and there was some more necrosis. The necrosis has caused a lot more swelling and cysts to form in the cerebellum area,” she said. “It’s pushing on her brain stem and causing her more issues with headaches, balance, eyesight, speech and the use of her left side. If she didn’t already have the shunt in place, she would need one now.”
After seeing high liver enzyme levels recently, her numbers are back down and Katie will go back to Nationwide Children’s for her trial medications and another MRI later this month.
“We continue to pray for the success of these drugs and for her to overcome the odds set against her,” Breann said.
On top of all this, Breann said Katie is struggling emotionally right now, too.
“Katie is pretty emotional lately and unfortunately, she has become pretty self-conscious of her weight gain and her face changes due to the steroids,” she said. Katie is almost weened from those steroids now for the second time.
Calling on the community
Through it all, the Tantons are leaning on their faith. “It’s an incredibly stressful time, but we continue to give it to God and he continues to provide for us in small ways,” Breann told UWK. “He has put many people in our path over the last six months, people that just pop up in public and walk over to us without knowing our situation and ask to pray over us. It’s been incredibly uplifting at times when we needed it most!”
They’re also calling on the community for help. “We need the community’s support now more than ever. If anyone within a couple of hours of Columbus, Ohio, has a 3 or 4-bedroom rental home or knows someone with rentals that would fit our family and Katie’s future needs (for a reasonable price) we would love for them to reach out,” Breann said.
“We’ve had a surprisingly difficult time finding a single-story home or at least a home with a bedroom and bathroom on the main level. Katie has incredible difficulty climbing stairs and we are looking for a 6-month lease initially as we don’t know what the future holds for her.”
The Tantons also have a GoFundMe and a Venmo account you can donate to that will help them through these trying times. You can donate to the GoFundMe here, and find their Venmo here.
There is also a fundraiser happening on Aug. 8 at Papa’s Seafood in Thibodaux. The goal is to raise enough money to get the Tantons to Disneyland.
You can get a plate for $15 from 11 a.m. to 3 p.m. on Saturday, and it includes shrimp, potatoes, corn, and dip. Papa’s Seafood is located at 518 St. Mary Street in Thibodaux.
“Great turnouts for the fundraisers would be a blessing! It will give us a chance to catch our breath and take a real vacation and break away from the stress with Katie and the girls to Disney,” said Breann.
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