As a parent, your whole world revolves around your child’s health and well-being. You want to make sure they are happy, healthy and live a long, fulfilling life.
Exactly two years ago, my world came crashing down: My 18-month-old daughter, Sofia, was diagnosed with Ependymoma, a cancerous brain tumor. Here’s my story on my family’s journey through this difficult time and Sofia’s fight for her life.
One month after my youngest daughter, Nora, was born, my family was presented with the greatest challenge we ever faced. Sofia started getting seriously ill. After multiple visits to our pediatrician and ER at our local hospital in Flint, we still didn’t have a diagnosis. We were referred to a hospital in Detroit, where doctors gave us the news – Sofia had a brain tumor. Our amazing 18 month old had cancer.
After Sofia’s diagnosis, we read any information we could get our hands on. A friend of the family suggested proton radiation therapy (also known as proton beam therapy) – an alternative to traditional radiation therapy. The survival rates are the same, but proton therapy is significantly less damaging to the surrounding tissue. With proton therapy, radiation enters the body in smaller doses, then gains momentum until it reaches the tumor site. Once there, the radiation deposits the maximum dosage amount and then disappears. This leaves no exit radiation, reducing the risk of secondary tumors and sparing countless amounts of healthy tissue. What was important to us was that it reduces the risk of all side effects, which in addition to the long-term impact, could help make Sofia more comfortable through the painful process (how she felt was one of the highest priorities for us during this difficult time).
As you can imagine, the availability of this type of treatment was amazing news to us! But we were nervous if our insurance, Blue Cross Blue Shield of Michigan, would cover this treatment, as many insurance companies do not cover the cost.
Through my family’s research we identified the University of Florida Health Proton Therapy Institute, a treatment center in Florida with doctors and staff who specialize in proton therapy. We felt this was the best option for Sofia and headed south. Even if Blue Cross wouldn’t cover proton radiation, we decided we’d rather go into debt to spare as much of Sofia’s brain tissue as possible than stick with traditional radiation. We went ahead and made plans to proceed with proton therapy while simultaneously working with our designated Blue Cross case manager in hopes the treatment would be covered.
The Help We Needed
When our case manager told us Sofia’s treatment would be covered, the news was one of the biggest blessings we’ve ever received. In that moment, I couldn’t put into words how thankful I was for that kind of support in one of my family’s most challenging moments. It was a relief to have the support of our insurance company for the path we chose.
I have heard of many cases, similar to Sofia’s, where insurance companies simply would not cover this treatment, forcing families to choose the invasive radiation method. I continually hear people complain about their health insurance – how it doesn’t cover enough or won’t cover what they need. In the two years we have been dealing with cancer and its aftermath, we never have had an issue with Blue Cross refusing to cover something, not paying or asking us to try a different medication or procedure. I believe it’s something rare and worthy of recognition.
This past Christmas, my parents came to stay with our family for the holiday. My dad has diabetes and I watched for two weeks as they battled with their health insurer, spending hours on the phone simply trying to get his insulin. They were on the phone nearly every day, saying the same things repeatedly, sending in the same forms, requesting the same approval and having to restart the entire process over and over again. It was awful. It was then I realized how lucky we were to have Blue Cross’ support during Sofia’s treatment.
The assistance we received went beyond health insurance coverage. Throughout our time at the University of Florida Health Proton Therapy Institute, a child-life specialist coordinated Sofia’s ongoing medical needs with our Blue Cross case manager – an effort by both organizations that went above and beyond putting our family at ease during such an emotional period of our life. That difficult time was made a little easier by having one point of contact who understood Sofia’s situation and made sure the next step of our daughter’s treatment was approved before it began.
Sofia’s Path to Recovery
This spring, we will be going to a Disney theme park with the Make-A-Wish Foundation, but our biggest wish has already been granted. Because Sofia was able to receive proton therapy, she will be making the trip cancer-free and without any of the side effects we had originally worried about. She will walk on her own, she will eat on her own and she will have the same million-watt smile she has always had. I could not be more grateful.
This post is part of a storytelling series we call, “Beyond the Card.” These stories will feature Blue Cross Blue Shield of Michigan members, employees, and communities who are making meaningful differences throughout our state.
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