Families from across the country are observing September as Childhood Cancer Awareness Month to recognize the more than 15,000 youth diagnosed with cancer every year. Florida mom and pediatric cancer advocate Cristina Maxwell shares her son’s story of overcoming cancer and finding the best educational options.
My son, Nic, was diagnosed with a malignant brain tumor at age 5. To say it was the worst day of our lives doesn’t quite capture our devastation. While other families were picking outfits for the first day of school, we were changing Nicolas into a hospital gown so doctors could save his life. Nic received brain surgery to remove the tumor, followed by radiation and chemotherapy for more than a year. During the surgery, he also suffered a stroke.
When he finally got out of the hospital and started his education again, our hope initially was to keep him in the school that he was attending before becoming ill. Unfortunately, as a result of the tumor itself and the treatment to save his life, Nic now has severe learning disabilities.
We quickly realized that Nic was just not able to learn in a traditional environment. His disabilities were just too severe, and he was falling further and further behind. Nic’s doctors told us that he would need extensive speech, physical and occupational therapy. He also needs personal one-on-one teachers who are trained in teaching children with his disabilities.
The cost to our family for the “recommended plan of care” was substantially more than any working family could afford. That was the second worst day for our family — having to come to terms with the fact we could not afford to give our son all the help that he needs.
For months, we searched for a school that could accommodate his unique situation. He’s a child who is socially typical but also severely disabled when it comes to academic learning. We just couldn’t find the right fit. There seemed to be no place for Nic. After making such progress to regain his health, we felt defeated again by the lack of educational options and the astronomical cost of paying for everything Nic needed to be successful.
A friend of mine told me about a unique program in Florida that helps kids like Nic, and those with other unique abilities, receive needed therapies and other educational services. The Gardiner Scholarship is an education scholarship account program that allows parents to customize their child’s education by choosing which educational settings, therapies, services and supplies are needed to create a quality education.
Unfortunately, the likelihood of Nic joining the program was slim. He didn’t qualify because of the type of brain injury he received and the program’s substantial waiting list of other students with special needs. However, instead of dashing our hopes, the rejection only strengthened my resolve that the laws governing scholarship admission needed to be expanded to more students.
I thought it would be easy, or at least easier than I was expecting. Who wouldn’t want to help kids with cancer and other disabilities receive a quality education? So I called my elected representatives, and when they declined to even return my phone calls, I called their colleagues. Then I called leaders in both the Florida Senate and Florida House. After hundreds of phone calls and emails sharing Nic’s story and why kids like him need access to this scholarship, I almost gave up.
I kept thinking about all the kids who are diagnosed with cancer each and every day. Thankfully, Florida’s legislative leaders, like Rep. Jennifer Sullivan who sponsored legislation to expand the program, listened. The battle to get this legislation across the finish line waged on for weeks.
Finally, in the summer of 2017, I received the best news I had received in years.
First, Governor Rick Scott signed into law both an increase in funding and expansion of who could qualify for the Gardiner Scholarship.
Second, we received an official letter stating that Nic had received the scholarship.
Third, Nic’s quarterly screening came back clear. He was still cancer free!
With the help of the Gardiner Scholarship, we were able to create a customized education plan for Nic. We found a licensed teacher specializing in learning differences who works with Nic in a one-on–one setting four times a week. Over the last year, she has been able to keep Nic learning, even as one technique seems to work one day and then not work the next.
His teacher adapts, changes it up and reintroduces concepts as Nic requires. Nic is not progressing by leaps and bounds, but he IS progressing. Some weeks it’s three steps forward and two steps back, but at least we are still one step forward! Without one-on-one instruction, Nic would be lingering in a classroom watching and understanding that his peers were passing him by. With the help of the Gardiner Scholarship, Nic knows he is making progress and he is proud. He will reach HIS full potential. As a parent, isn’t that always our goal for our children?
We’re now another year cancer free, and thankfully Florida leaders have recently funded additional students to receive a scholarship. My new hope is that all kids, no matter where they live or what they have lived through, can develop a love of learning and truly become their best selves.
Cristina Maxwell and her husband, Todd, are the parents of Nicolas, a 10-year-old pediatric cancer survivor. They live in Pembroke Pines, Florida.