On May 21st, my family marked one year since we lost our daughter, sister, niece, cousin, and friend to childhood cancer. The next day, in a fitting tribute to our Kinley, we celebrated as Congress passed the Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) Act, the most comprehensive childhood cancer bill that Congress has ever considered.
President Trump signed the STAR Act into law earlier this week. Also this week, approximately 308 American children were diagnosed with cancer.
{mosads}The STAR legislation is critical because it helps to expand research capabilities, increasing the medical community’s knowledge about childhood cancer and helping doctors to work together across the country to find more effective and less toxic treatment options.
For our family, more research might have meant a better quality of life for Kinley.
Kinley battled cancer not once but twice in her short life. In January of 2011, she was diagnosed with Acute Lymphoblastic Leukemia. She endured 27 months of treatment and was eventually declared cancer-free. But troubling side-effects from chemotherapy lingered. She was plagued by chronic pain and headaches which triggered crippling anxiety and depression.
Despite her health struggles, Kinley had big dreams. She challenged herself to try new and diverse hobbies, participating in mock trial and performing with a competitive cheer team. She hoped to become a medical examiner and added EMT certification courses to her already full class schedule in order to learn more about her future career.
Kinley lived without cancer for four years, but, in April of 2017, just one month before she was to graduate high school, we learned that the cancer had returned, this time in her central nervous system. The second time, the cancer was too powerful, the treatments too tough. Kinley was 17 years old when she passed away. We held her funeral just days before she would have graduated from high school.
We ask a lot of kids who are fighting cancer. We ask them to undergo long-term treatments, missing days of school and fun with friends. We ask them to endure devastating side effects, some that will follow young survivors for the rest of their lives. We ask them to be brave and embrace life, even as they face the prospect of that life being taken away.
Now, kids fighting cancer are asking something of us in return. Congress has taken a big and important step but, as our kids know too well, the fight isn’t over. The STAR Act could be the difference maker. But, in order for the STAR Act to be effective, it needs to be fully funded. Congress, through the appropriations process, needs to make sure that every desperately needed cent is allocated.
This legislation and the research it enables will come too late for Kinley, but, in her honor, Congress should fully fund the STAR Act now. Kids like Kinley deserve college, not cancer.
Beckie Bonifassi is the Foundation Director for Kin’s Kids, a charitable organization established in Kinley’s honor to help families defray the financial burdens of fighting cancer.