Chris Hansen, ACS CAN President

ACS CAN President Lisa Lacasse shares her views on the impact of advocacy on the cancer fight.

Share

Guest Post: From Checkup to Capitol Hill for Childhood Cancer Action Day

June 7, 2016

Kay and Ian Lock, of Wisconsin, have become household names among our ACS CAN family, but I want to share the story of this impressive mother-son duo far and wide. Five years ago Ian, now 22, was in high school when a so-called "lucky hit"  in football left lasting pain in his leg that ultimately sent him to the doctor. The pain wasn't a product of the football injury. A scan revealed osteosarcoma — a form of bone cancer. The Lock family was thrown into the world of cancer treatment, which thankfully has been successful. This year, Ian and his mother, Kay, were invited to Childhood Cancer Action Day in Washington, D.C. to share their story. The trip coincided with Ian's five-year post-treatment appointment at Milwaukee Children's Hospital. I invited them to share their story of a whirlwind week that started with a full day at a cancer clinic, and ended on Capitol Hill explaining to key legislators their role in pediatric cancer research, treatment, and recovery.

Kay: I never wanted to be doing anything like this. Of course not. No one does. I was living a nice life in Fond du Lac, Wisconsin, and six years later I'm a cancer activist. I've had to push myself past my comfort zone so many times as a mom during Ian's treatment and now as an advocate. It's something I have to do.  

Ian: We both do so much now in terms of cancer advocacy. We know how important this work is for cancer patients and their families because we've lived it. As a college senior, I'm working with a cancer researcher and I'm the advocacy chair on the national campus leadership team for Colleges Against Cancer. If you had asked me six years ago what I wanted to do, I would have said "go to State in football, not go to the state legislature." But going through what we have, I know how much legislation and the government affects people with cancer. The people who make these decisions have to hear from us so they will know what to do when the time comes.

Kay: The recent appointments at the children's cancer clinic were very routine. Ian underwent four hours of tests. Then came the painstaking wait for the results. Good news. The results again were great. The bad feeling I had, thankfully, didn't come true. It was a long day, though, in a place that I have a lot of emotions about.

Ian: When the doctor said we didn't have to come back until next year, that was a great moment. And then I realized, "Hey, it's time for me to go to D.C."

Kay: Ian and I made the trip to Washington to join six other advocates representing ACS CAN at the Childhood Cancer Action Day May 16-17. The event, in its fifth year, was coordinated by the Alliance for Childhood Cancer. We received advocacy training on the first day so we would be confident when we met with our legislators on Capitol Hill. On Tuesday, we had three meetings and dropped by all of the Congressman in the Wisconsin delegation. We shared our cancer story, and specifically thanked them for their support of the STAR Act (H.R. 3381/S. 1883). This legislation provides resources to study childhood cancer survivorship, develop new treatments, provide better access to care, and increase pediatric cancer research.  Kay and Ian met with their congressman, Rep. Glenn Grothman (R-WI), during the 2016 Childhood Cancer Action Day.

Ian: It's definitely empowering to walk into a congressman's office with your story and see the impact. You see so many people coming and going from their offices, asking for their time. I felt really confident during my meetings and also like I was doing something important.

Kay: Ian was so great. Being in those meetings with him was a privilege. There are parents who were there without their children. Six years ago, I didn't know what was going to happen. I was terrified for my son and our family. Now, I still feel that, just as personally. We can't go back to the days when we didn't know better, even if we wanted to. But we can use our experience to make a difference and I feel like we did that this time.

Kay and Ian Lock are from Fond du Lac, Wisconsin. Kay serves as ACS CAN's ACT Lead for Wisconsin's 6th congressional district. Ian is the advocacy chair for the American Cancer Society's National Campus Leadership Team.