Adobe Stock
The STAR Act would expand research and empower targeted treatments with the goal of improving outcomes while using the minimum effective dose of powerful cancer fighting drugs.

Last week, my son JP’s second-grade class posed for its class picture. Despite my worries about his health, I gave in to JP’s pleas and took him to school so that he could be in the photo. As the mother of a child fighting cancer, I am constantly weighing my need to protect him against his need to be a normal kid.

Every year, more than 15,000 children are diagnosed with cancer. That means, every year, 15,000 families like mine are forced to make impossible choices between taking precautions and allowing participation in the activities of childhood.

Right now, our representatives in Congress have the opportunity to do something to make life better for kids fighting cancer and their families. The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) Act — the most comprehensive childhood cancer bill that Congress has ever considered — would help to expand research capabilities, explore effective treatment options and enhance understanding of medication implications to improve survivorship outcomes. This legislation is important, and Congress should act on it now.

JP was first diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer, in February of 2012, when he was 2½ years old. The next three years brought grueling treatments and sleepless nights, but, eventually, remission.

Most experts agree that if cancer stays away for two years, it is probably gone for good. But JP was cancer-free for 27 months when, inexplicably, his cancer returned last July.

JP’s relapse is indicative of the gaps in our knowledge about childhood cancer. The STAR Act would break down barriers, allowing physicians to share information and increase the overall amount of data available to families facing cancer. More data would help families gauge expectations and manage fears.

We have learned that cancer is a harder opponent the second time around. The disease is more aggressive when it returns. Additionally, there are fewer available treatment options for second-time fighters, and even less is known about the long-term implications of those treatments.

The STAR Act would expand research and empower targeted treatments with the goal of improving outcomes while using the minimum effective dose of powerful cancer fighting drugs. Additionally, the legislation would advance work on survivorship, enhancing study on the impact of medications on young patients, both at the time of treatment and as they grow. Any additional information gained would bring comfort to families confronting difficult treatment decisions.

Over the course of JP’s fight with cancer, my husband and I have watched him become a tireless advocate for his cancer friends. His bravery and charm have won him high-profile supporters and brought thousands of followers to his Instagram account. In the fall of 2014, while JP was in remission, his beloved Utah Jazz signed him to a one-day contract, complete with a team uniform and time on the court. Our family has traveled to Washington, D.C., several times with the Alliance for Childhood Cancer where JP has met with Sen. Mike Lee, talked with him about his journey and taken some pictures.

But, make no mistake, childhood cancer sucks. Many days, JP is too medically fragile to go to school. He has to skip birthday parties and can’t play on sports teams. Next month, when our friends at the Alliance head back to Washington, our family will not be with them because of JP’s chemo schedule. For us, childhood cancer often means staying home and missing out.

JP can’t go to Washington this year, but we can still ask Congress to help him — and other kids — to get better information, better treatment options, better prognoses and better lives after cancer. We know that Congress is busy. But we also know that Congress has the power right now to make a difference on this important issue.

4 comments on this story

Childhood cancer is unrelenting. Families like mine face that reality every day. We are asking Congress to stand with us to fight this disease. Together, maybe we can fulfill JP’s goal of making the next family’s journey with childhood cancer a little less daunting and a little more hopeful. We could all be proud of that.

Megan Gibson is mom to cancer fighter JP and his siblings, Elsie and Theo. She and her husband, Josh, are active in the local Utah pediatric cancer community, where they founded a nonprofit organization to support participation in sports for childhood cancer families. The Gibson family lives in Layton.