Pass the STAR Act for my daughter Rhyan, a 6-year old cancer survivor

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The petition below comes from Brad Loos, a volunteer with the American Cancer Society Cancer Action Network whose daughter was diagnosed with cancer.

It’s like a bomb that’s dropped on you. My daughter Rhyan went from playing in the cul-de-sac to being diagnosed with stage four cancer. All in 48 hours.

Rhyan had always been outgoing and loved school. When she was five years old, we started noticing that something was off with her and we weren’t sure why. Then she started limping on and off, so we took her to the doctor. Multiple doctors and many tests later, we found out that Rhyan had stage four neuroblastoma, or in other words, cancer all over her body.  

Rhyan was treated at Sloan Kettering in New York City, far from our Missouri home. Even though Sloan Kettering is on the cutting-edge for cancer treatment and research, it was scary. With cancer, and with childhood cancer in particular, there are so many unknowns. The doctors don’t know what’s going to happen. Our kids are the guinea pigs, and while we’re learning more every single day, we still just don’t know.

For a while, Rhyan was doing well. There was no sign of cancer. Months later, she started having headaches, and we learned that the cancer had come back. This time it was a brain tumor. So, we started the whole thing again: surgery, chemo, radiation, immunotherapy.

More than 14,500 children will be diagnosed with cancer this year. The survival rate for kids with cancer is going up every day, but there’s still too much we have to learn. We need to know more about the causes of cancer in children and how to treat it. Treatments we’re currently using often have long-term side effects on kids.

Too often, we’re putting kids’ lives at risk to save their lives from cancer. We can – and must – do better than that.

Today, Rhyan is doing well and there is no sign of the disease in her body. But she still has side effects from the treatments. She’s going to wear hearing aids for the rest of her life because of the treatments that saved her life. Every time she gets sick, we worry the cancer has come back. You can see the impact in other ways, too. My daughter is no longer as carefree as her friends. Kids who suffer from cancer lose a lot of their childhood in the process.

Congress will be voting on the STAR Act sometime soon – possibly within days of you reading this. The STAR Act is the first step to getting more dedicated funding for childhood cancer research. It also allows for better sharing of childhood cancer data among doctors and medical systems. Because when a place like Sloan Kettering learns something new, our local Missouri hospital should know about it.

We still have a long way to go in terms of understanding pediatric cancers the way we understand adult cancers. Please sign this petition and tell Congress to take the next step in making this happen. Pass the STAR Act immediately.