Crowns, fancy gowns and sparkly shoes…. These days you’ll find 7-year-old Sofia prancing around in her princess dress-up gear. Just a few years ago, however, it was surgical caps, hospital gowns and socks.
In 2014, when Sofia was only 18 months old, her parents noticed the troubling signs: her balance was off, she was sleeping a lot, and she had unexplained bouts of nausea. Imaging of her head revealed the family’s worst fears: a cancerous brain tumor. Sofia’s team of doctors immediately performed surgery followed by 30 rounds of proton radiation. Sofia was declared cancer-free. But the cancer wasn’t done with Sofia.
In 2016, two years later, a scan showed the cancer had returned. Since treatment options for a recurrence in children are so limited, a clinical trial was their only hope. But the clinical trial that looked most promising for the then 3-year-old was nowhere near their home in Michigan. The Riders would have to travel to St. Jude’s in Atlanta. Even more challenging? They would have to make that trip every month. Willing to take any action necessary to save her life, Sofia’s parents enrolled her in the clinical trial and started traveling once a month, but they were soon overwhelmed with the mounting expenses; hotels, airfare, Ubers, etc.
“We love Michigan, we needed to be close to family, we have a great support system, an active church that’s supportive,” said Sofia’s dad, Scott, “but it’s expensive to not be able to work all the time when you need to support your family, it’s expensive to be sick, it’s expensive to travel.”
Sofia is the oldest of four kids. So, Scott says moving to Atlanta simply wasn’t an option. As luck would have it, they learned about a resource that would provide the lifeline they needed. “After a couple months on the trial, we found out about Lazarex Cancer Foundation through another cancer family whose son had passed away. I reached out immediately.”
Scott says the assistance provided some relief to their financial stress, allowing them to focus solely on Sofia’s health. “They reimburse us for our flights, hotels and cabs. We would have tried to find a way to make things work… but there’s nothing out there like Lazarex. A reliable planned reimbursement resource, Lazarex is a necessary piece of the clinical trial environment. They connect patients with clinical trials… and they enable us to keep Sofia in the trial.”
Today, after three brain cancer surgeries, and countless treatments, the clinical trial she is currently in is working. Doctor say Sofia shows no sign of cancer – and it’s been that way for more than 2 years – a milestone she’s never hit in her life. Now, because of COVID19, Scott says all travel is halted, instead the hospital is sending Sofia’s medication and allowing them to do routine labs closer to home.
“While not traveling is less of a burden, we know the travel will resume as it had in the past… and the mountain of travel expenses will resume. Because of that, we are thankful Lazarex Cancer Foundation is there for us.”