The doctors told them the news: Tucker had a medulloblastoma, a malignant brain tumor located at the base of the brain. Adam's mind went blank with shock: "It was a literal punch in the gut." This began the 10-month journey of Tucker’s cancer battle.
After surgery to remove the tumor, Tucker spent another 26 days in the hospital. He had developed posterior fossa syndrome, a rare complication from surgery that left him unable to purposely move and communicate. “He was in a wheelchair, and he was just grunting and making sounds,” says Kelly. “That was the hardest. It was like having a traumatic brain injury and cancer.”
Overnight, Kelly and Adam had to make quick lifestyle changes to accommodate Tucker's condition.
"There was no way both of us could work," Kelly says. Since the family's health insurance was provided through Adam's job, they decided Kelly would stop working to focus on Tucker's care. The couple alternated between days in the hospital with Tucker and staying at home with Brooks.
In addition to Tucker’s health, Adam and Kelly were stressed about the costs of treatments. As their out-of-pocket expenses mounted, Kelly thought, “There’s no way. We’re going to be paying medical bills for the rest of our lives.” They had no savings for this kind of emergency, but they were committed to do whatever they needed to give Tucker the best treatment regardless of cost.
On top of the loss of income and rising medical bills, the Davis family also had to make purchases to accommodate Tucker's lack of movement, such as a wheelchair and a chair for the bath. They were thankful the hospital was not far from their home, otherwise travel expenses would have been another concern.
After brain surgery, Tucker's treatment plan consisted of 30 sessions of proton beam radiation therapy and six rounds of chemotherapy. On the days Tucker needed a clinic checkup alongside proton therapy, a single day's treatment without insurance would cost over $20,000. As more bills started coming in, Adam and Kelly stopped looking. In the middle of Tucker's chemotherapy, his accumulated treatment costs went over $2.5 million. With deductibles and copays, the Davises' share ran to several thousand dollars.
You don't save up money for your child to get cancer.”
Thankfully, Tucker was able to regain speech and movement about two months after surgery. Although his treatment ended in February, and he has since been cancer-free, Tucker's health journey is far from over. He will need to have CT scans every three months for the next two years, then every six months, and then every year for a total of ten years. He will also need to continue his physical and occupational therapies and get educational support.
Despite the long-term effect Tucker's cancer will have on him, Kelly is confident for her son. “He’s such an adaptable kid. I have no doubt that he is just going to take it on and keep moving forward," she says. "He is so strong, and just so resilient.”
Kelly and Adam know that in many respects, they are fortunate: They had health insurance, steady income, and a community that supported them with meals and childcare. And most important, Tucker is recovering. But when it comes to finances, Kelly is conscious of what could have been.
"I still go over scenarios in my mind: If the floor dropped out, if we lost our jobs," she says. "We're lucky that it turned out the way it did. But it could have been so much worse."
The couple is still working to pay off their medical bills. They have saved some money in part by consciously cutting back on expenses, and also because Tucker's illness kept them from spending money on activities they normally might have done, like taking a trip to Disney World. And they know more out-of-pocket expenditures for Tucker are on the horizon.
"There's as much stress now, knowing that this year he's got to have four CT scans, so we've got to set aside more than I usually would," Adam says. As with many necessary procedures, the deductible and coinsurance payments can add up, highlighting the need for a financial safety net.
“Tucker is a beautiful and wonderful child, surrounded by a loving community. His parents, Kelly and Adam, had done everything they could with saving and preparing for their future. It is frightening to imagine that this can easily be rattled when someone is diagnosed with a long-term illness.”
— ROSEM MORTON