Son’s Death Led Her To Found Brain Tumor Registry
By Richard Asa, Chicago Tribune (TNS)
CHICAGO — Carol DeAngelis Kruchko is a self-described “doer.” Usually a blur until she can be persuaded to sit down for a conversation, the president and administrator of the Central Brain Tumor Registry of the United States (CBTRUS) is indefatigably dedicated to her cause.
Essentially, the important data the organization collects and carefully codifies is the legacy of her son Willie, who died at age 3 from medulloblastoma, a relatively rare and fast-growing tumor found mostly in children.
Before Kruchko founded the registry, standard data reporting in the U.S. was limited to malignant cases. To quote the group’s website, “non-malignant brain tumors, however, may, and often do, impose the same costs to society in terms of medical care, case fatality and lost productivity as malignant brain tumors.”
The organization incorporated by Kruchko as a nonprofit in 1992 has since become a nexus for gathering and distributing current epidemiologic data on all primary brain tumors and is intricately tied to the neuro-oncology community. The registry describes incidence and survival patterns, evaluates diagnosis and treatment, helps enable causal studies, and promotes awareness of the disease.
She describes the registry, which she runs from a small office in Hinsdale, as more than a full-time job, instead referring to it as “always there” — or what she does whenever something needs doing to “keep this going.”
A native of Providence, R.I., where she grew up in an Italian-American community, Kruchko graduated from St. Mary’s College, a sister school of the University of Notre Dame, and received a bachelor’s degree in biology education. After graduation she became a librarian at Notre Dame while her husband, Bill, worked on his degree there.
They went on to have four daughters and then adopted two boys. During that time, Kruchko says, she was a stay-at-home mother who was active in the PTO and local gardening club, while organizing enrichment experiences for the children that included trips to Chicago museums and other educational sites.
After Willie died, she worked for Court Appointed Special Advocates (CASA), a network of community-based programs that trains volunteers to study the lives of neglected and abused children and file reports with judges overseeing the children’s well being. After four years, she left CASA to devote her full attention to CBTRUS as payback to the American Brain Tumor Association for its help during Willie’s fight for life. Following is an edited conversation.
Q: What made you decide to turn a personal tragedy into something so positive and far-reaching?
A: I wanted to give back to everyone who had helped out the family. It was too important not to do something, and (Willie’s) life was too important to just sit back and go on with my life. Life is too special to do that. I just feel you have to give back to humanity for what has happened and make it count for something.
Q: How has CBTRUS moved the study of brain tumors forward?
A: It gives us a true picture on the incidence of brain tumors in the U.S. and in that respect has helped research move forward. It also has affected brain tumor data collection worldwide. Other registries have (followed) our model, so it also has filled a need to quantify the impact of brain tumors on society.
Q: Have you run into obstacles or challenges along the way?
A: The biggest challenge is funding. There are tons of things we feel we can do to improve data collection and reporting but funding is the big challenge. Otherwise, if there’s a problem, I want someone to tell me right away. I want to deal with it head on. I don’t want anything to fester. I want to deal with it and figure out a way to solve it.
Q: What advice would you give to someone who wants to start a cause and follow it through as you have?
A: Keep the trust. If you’re going to be doing something that will be good for many people, trust that it’s going to work. I just believe that things intrinsically valuable to people will continue on. It might be hard but others will see what is valuable and important and it will be supported. Every once in a while I’ll sit back and say, “Oh, my gosh, how did all this happen?” It happened because it was supposed to happen. It’s fateful and faithful.
Q: What do you do to refresh yourself?
A: I visit my children and grandchildren. (She has eight grandchildren.) We have a grammy and grampy camp in the summer, and the grandchildren come and stay with us without their parents from two to six weeks. I also love watching adventure mysteries. I like movies such as “The Bourne Identity,” both Sherlock (Holmes) shows (“Sherlock” and “Elementary”) and “Person of Interest.” We also love to hike. (Laughs) I also like to clean. I don’t think that should be in (the story).
Q: Being of Italian heritage, do you treat yourself to anything particular in the way of comfort food?
A: For me, it’s angel hair pasta and I equally love mashed potatoes. I make a potato soup and sometimes, polenta with a lot of my own sauce on it. I make my own meatballs and I love them. I’ve taken frozen packages of my meat (mix) to my daughter in Hong Kong because the meatballs don’t taste the same without it.
Q: Where do you find inspiration?
A: (Having) faith. I belong to the altar guild at my church. It’s a group that takes care of all the vestments and the chalice. It’s another way of seeing people do something special as a collective and being able to articulate in their work how important God is in their lives. We all have stories and if you’re open to them you’ll receive little messages, but you really have to listen.
TNS Photo/Antonio Perez/Chicago Tribune