This was written by Abby’s mom, Patty Furco.
Cancer can make you feel helpless. You want to fix things for your child and you can’t. During and after treatment, parents have little control. Yes, we can advocate for our kids, find the best medical team, the best treatments, hospital, and love on them. But how can we help?
I want to help others that are on the path we lived on for years. Witnessing the devastation and disruption that childhood cancer families go through, it’s impossible to not be changed by what I’ve seen and experienced. My journey as a hands-on, living it day to day, childhood cancer caregiver is over. My incredible daughter Abby, forever 15, passed away last October after a valiant 11-year battle with cancer and its effects. However, my role in the childhood cancer world is not over. I need to help. I do not want other families going through things that we did. How can I (and we as a childhood cancer community) make things better for children and families? How do we create more survivors? Where do we go from here?
In 2012, we learned about the St. Baldrick’s Foundation funding childhood cancer-specific1 research and knew we wanted to join their efforts. Before we were part of the childhood cancer world, St. Baldrick’s had funded two trials that Abby had access to during her treatments – one drug helped her gain remission in 2011, and the other brought her out of heart failure in 2014/2015. Both of these drugs helped her live and love longer. We have fundraised, participated, and organized St. Baldrick’s Foundation events since.
We have been champions of childhood cancer research federal funding by visiting the halls of Congress in person and virtually over the years and by serving as a 2017 Ambassador family.
The St. Baldrick’s Foundation co-chairs a childhood cancer coalition called the Alliance for Childhood Cancer, which brings together other organizations and families to advocate for initiatives to help increase federal funding and federal childhood cancer support as a whole. We have introduced why childhood cancer-specific funding is needed and have secured support and funding for the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever. This funding has created programs that help facilitate more research in childhood cancers and survivorship, ultimately in hopes to increase survivor rates and one day find cures.
Participating in these advocacy days has allowed me to meet other incredible families of both bereaved children and survivors. Not only are we able to support each other with a deep understanding, these meetings continue to fuel my fire to do more.
I was honored this year to be selected to nationally represent childhood cancer advocates and attend the American Association of Cancer Research (AACR) Scientist <-> Survivor Program. I joined 30 other patient advocates in person in New Orleans along with 20,000 researchers, doctors, medical representatives and overall just smart people. We learned so much as advocates and were exposed to exponentially more information about where cancer research is today and where it is headed in the future. Our program was founded, created, and facilitated by the incredible Dr. Anna Barker, past deputy director of the National Cancer Institute (NCI). Dr. Barker is a firm believer that a well-educated patient advocate role within cancer research is a pivotal piece of the puzzle. Our program was created to build us up, help us learn from one another and the thousands of educators at the conference, and then let us go out and do good things.
As a part of this program, I had the honor of presenting the St. Baldrick’s Foundation’s current action plan during a poster session and educating anyone that wanted to listen about the great things St. Baldrick’s does for children battling cancer.
But I am just one person. How can I be a bigger voice and spread the impact? I’m learning there isn’t one straightforward answer. The power of many is a key part of this. How can we as parents, family members or friends in the childhood cancer world help?
One way to help is by building support for the Childhood Cancer STAR Reauthorization Act. This bill will allow the programs from the STAR Act – including the investments in childhood cancer research – to continue for 5 more years. I invite you to click the link below, or text STAR4KIDS to 52886 to take action today.
For those of you in the trenches, I’ve got your back. You love on your child, you plan those appointments, scans, hospitalizations, medicines, treatments…do what you do each day. If there is a day that you have a moment to take a breath, do that first. Do something for yourself or other family members and friends. After that, if you feel the need for action, share your story. Take a moment to write or talk about your every day.
Even though I lived it every day for 11 years, I never quite grasped how powerful our stories can be. They are meaningful and can be helpful to others, not only in getting funding and sharing the importance of research, but also instilling hope.
We continue to fundraise, raise awareness, fund research, and love on our children, our families, other families in the battle, while we support one another. My story isn’t ending here, I’m still thinking, wondering, acting…what is next? How can I help even more? Stay tuned…
Click the link below, or text STAR4KIDS to 52886 to take action today
Read more on the St. Baldrick’s blog: