DENHAM SPRINGS — The Tanton family is working hard to do everything they can for their family, and they have been for years. The Tantons have two daughters, both of whom are facing medical challenges.
Their daughter Isla, 8, has cystic fibrosis, requiring daily medication and ongoing care. And earlier this year, their now 11-year-old daughter Katie was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG, a rare and aggressive terminal brain cancer that primarily affects children.
In May, Katie was accepted into into the new TarGeT-A Clinical Trial at Nationwide Children’s Hospital in Columbus, OH. The trial involves her taking two daily medications, as well as monthly appointments at the OH.
Read more: 11-year-old with terminal brain cancer begins new trial
Bumps in the road
Now, that trial has the Tantons looking for an out-of-state move. The family has been looking for somewhere new to live for months, after the roof of the house they were renting leaked, causing mold.
They put their belongings into storage and moved into a camper, which they planned to drive back and forth to Ohio. But now, two months in to the trial, they’re hitting some bumps into the road.
Katie’s mother, Breann Tanton, posted on social media that Louisiana Medicaid won’t cover any part of Katie’s care that is out of state, and the trial she is in at Nationwide Children’s Hospital doesn’t cover every aspect of her care, only the two trial medications. The doctor they are working with is trying to give Katie free clinic visits.
On top of health insurance challenges, the Tantons learned the monthly trips to Ohio aren’t sustainable. Breann said it’s 2,000 miles round trip to Ohio at least one week every month. They also have to pay for hotels, food, medications, fuel, car rentals, car insurance, etc.
Read more: Denham Springs family facing mounting financial, housing challenges during daughter’s cancer fight
Making a move
Breann learned that if her family moves to Ohio and gets on state insurance there, everything Katie has to have done at the hospital will be covered.
“The hospital confirmed that they are taking Ohio Medicaid again so it feels like we have no other option than to move here so everything is covered and we’re not taking a week or more out of every month to travel and get treatment,” Breann told UWK.
Once they make the move, they will also have to focus on getting Isla’s cystic fibrosis care transferred over, too.
“Hopefully it doesn’t take as long as it did with Louisiana Medicaid to get her special meds covered,” Breann said.
Now the Tantons are looking for rental property in Ohio. “We’re still in Ohio, searching for a rental home, praying someone will approve us without an income up front,” she said.
Breann said that they have no income, and right now, they are surviving on crowd-funding and some small grants. “We’re drowning,” Breann’s post said. “Please share Katie’s story, donate to our family if you’re led by God to do so, and help raise awareness for pediatric brain cancer.”
Friends and family members created a GoFundMe for Katie and the Tantons as they navigate all of their medical, financial, and housing challenges. You can also donate using the Tantons’ Venmo, which you can find here.
Medical updates
According to Breann, Katie’s latest MRI showed more tumor necrosis, which means it’s dying off, and it looks like her tumor may me slightly smaller. She said Katie has some fluid built up where the tumor spreads off the stem into the cerebellum. The MRI also showed some inflammation, which she said doctors believe is from weening Katie off steroids for the last six weeks.
In a Facebook update on July 8, Breann said:
Katie’s ALT (liver enzymes) are still too high to continue to trial meds and the Ronald McDonald House will not let us stay here another week with no appointments. They want us to travel back home and get her labs done in Louisiana on Tuesday and then return on Thursday if her numbers are within the safe range again.
They are trying to get the Trial to give the okay to not have another MRI before getting the meds as well, because we would be paying out of pocket for it. The way the Trial is written is that she has to start the meds within 7 days of her MRI. It will be over two weeks past her last MRI if she starts them again next Thursday.
Ugh! Katie is not feeling good, her energy is low and she can barely walk 10 feet without feeling exhausted. She has a headache daily from the swelling and fluid in her cerebellum area. She was emotional and cried last night saying “I just want one day where I feel good all day!” It’s so hard watching her go through this and nobody ever sees the reality of what cancer does to a child or their family.
How are we going to pay for this treatment?!? She needs these trial meds. There’s a big misunderstanding that clinical trials are free. They are not. Only certain aspects of the trials are covered-in this case only the trial meds are covered and the research that goes along with it. Then, they expect insurance to cover the rest. Well, insurance is not covering any of it done outside of Louisiana.
Now the extra burden of the cost of her clinic visits, MRIs, labs, etc are not covered. We are financially responsible. Katie needs these meds. Please help my baby, help our family.
We are frantically searching for a home to rent outside of Columbus, Ohio before we return to Louisiana – especially since we can’t stay here at the RMH. Please DM me if you have connections anywhere in Ohio that can help us!
Breann said her daughter has been feeling unbalanced the last few weeks, and is also experiencing frequent small headaches, constant acid reflux, stomach aches, and has less energy all around.
Despite all of this, Breann says Katie is still her funny, beautiful self in spite of learning of her life expectancy.
If you can, you can donate to the Tantons’ GoFundMe here, or their Venmo here, and support the family.
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