Dresses, fancy hats and sunglasses…. These days you’ll find 8-year-old Sofia dressing up, or running, biking, drawing and coloring the patio with sidewalk chalk. She’s getting ready to start the 3rd grade! To most, she looks just like any ‘normal’ kid, but just a few years ago, it was surgical caps and hospital gowns.
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. In 2016, two years later, an MRI showed the cancer had returned. Again, she had surgery and another 30 rounds of proton radiation… the standard treatment for ependymoma, her type of cancer.
But the cancer wasn’t done with her.
In 2018, her cancer returned for a 2nd time. This time the standard treatment was no longer available because she had received the max amount of radiation to her brain.
Since treatment options for a multiple recurrences in children are so limited, a clinical trial was their only hope. But the clinical trial that looked most promising for the then 4-year-old was nowhere near their home in Michigan. The Riders would have to travel to Children’s Healthcare of Atlanta. Even more challenging? They would have to make that trip every 28 days. Willing to take any action necessary to save her life, Sofia’s parents enrolled her in the clinical trial and started traveling basically once a month, but they were soon overwhelmed with the mounting expenses; hotels, airfare, Uber rides, 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. They have traveled as a family multiple times, living in Jacksonville, FL for 2.5 months in 2014, and a few years later living in Memphis, TN for 3 months for treatment at St. Jude’s Children’s Research Hospital.
This time was different. Sofia received a terminal prognosis in 2018, and it was important to them to live close to family and maintaining as much of a normal quality of life was important. Through faith and their support system they would find a way to make it work.
However, they learned about a resource that would provide the perfect 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 car rentals. 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 enabled us to keep Sofia in the trial for the long term.”
Today, after four brain cancer surgeries, and countless treatments, the clinical trial she is currently in is working. Doctors 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 COVID-19, Scott says all travel is halted, instead the hospital is sending Sofia’s medication and allowing them to do routine labs closer to home.
Just recently, they have worked with their local medical team at University of Michigan in Ann Arbor, MI, and with the approval from the FDA and the drug company that provides Sofia’s trial medication, they’re able to receive the medication locally going forward. This also means that Michigan kids with Sofia’s type of cancer will now have access to this same medication locally at U of M, Ann Arbor. “More kids will have access to ground-breaking treatment. Especially as Lazarex steps in to help them get there.”
