Globally, more than 300,000 children are diagnosed with cancer each year. In commemoration ofWorld Cancer Day on February 4 and International Childhood Cancer Day on February 15th, Sue Matthews is telling her story.
Matthews—a CPA, wife, and mother of three—was living a normal life fifteen years ago until the day came when her middle child, daughter Taylor, was diagnosed with cancer at the age of eleven. In her forthcoming book, Paint Your Hair Blue (Morgan James, June 2018), Matthews and her sister Andrea Cohane take you through the heartwarming tale of heroic courage and devastating blows that characterized Taylor's odyssey through the underfunded world of pediatric cancer. It is an inspiring story of the power of love and determination, as well as a cautionary tale that provides support and specific advice for other parents confronting cancer and for anyone going through a cancer diagnosis, or caring for someone who is.
I had a chance to interview Sue to learn more.
ï Why was it helpful for you to divide and conquer responsibilities at home?
First and foremost, my husband, Bob, and I became a synergistic team.
Throughout Taylor’s illness, Bob and I each took on certain roles and responsibilities: Bob alone would meet with the doctors, while I stayed with Taylor. This strategy worked well for us, as Taylor never felt abandoned and I didn’t have to hear what the doctors had to say. Bob was the strong one. I was responsible for Taylor’s day-to-day care: tracking all of her medications and learning how to minimize her suffering as well as making life with cancer as much fun as possible. Bob, on the other hand, diligently researched treatments online almost every night and got many second, third, fourth, and fifth opinions. We never stopped being a team and worked extremely hard to complement each other throughout her battle.
ï What advice would you have for those who are dealing with having a child with cancer?
There’s no way for any parent to completely avoid the fear and pain that comes with a cancer diagnosis, but you do have some control. First, your most important job is to make your child feel safe, and believe he or she will survive. You don’t have to hide your sorrow, but try to hide your fear. Second, you must understand that your family has to go on living and experiencing life to its fullest. Lastly, you cannot ever stop advocating for your child. Even if you have the very best doctors, you still have to question them and your child’s protocol at every turn, making sure he or she is getting the most effective and creative treatments available in the world.
ï What lessons did you learn from your experience?
Taylor taught us:
- To never be a victim, never pity yourself no matter what your circumstances are.
- To live life in the moment.
- Have fun wherever you can find it.
- Live life on the edge.
- That LOVE is all you need.
- That every day is a gift. Enjoy it! Cancer is not a death sentence. In many ways, it provides an eye-opening opportunity to live your life to the fullest.
Taylor’s life was not only about what she accomplished, but also about what she left behind. Her boundless optimism at the bleakest moments, concern for others even when she was at her worst, and her zest for life even as death neared, taught me more about love than I thought there was to know. If you have love, you have everything.
ï Can you share a little bit about the foundation?
My daughter, Taylor, founded the Taylor Matthews Foundation (TMF), when she was diagnosed with cancer at the age of eleven. The shock of diagnosis gave way to the alarming reality that treatments for Taylor’s disease had not changed in decades. Even though cancer is the number one cause of death by disease in children, only 4% of the National Cancer Institute’s budget is allocated to childhood cancer research. Unless you are in the world of pediatric cancer, this is a well-guarded secret.
Taylor was horrified that thousands of children could be suffering from cancer, yet their cries for help were being ignored. Taylor was determined to make a difference. Less than a month after diagnosis, she founded The Taylor Matthews Foundation, a tay-bandz organization, which is a 501(c)(3) nonprofit organization dedicated to raising awareness and funding pediatric cancer research. We fund innovative research and treatments that can reach sick children today, not months or years from now, to improve outcomes and reduce the long-term survivorship side effects associated with pediatric cancer.
TMF has raised $1.4 million and funded research at several leading institutions, including Memorial Sloan Kettering, The National Institute of Health, Children’s Hospital at Columbia University Medical Center and MD Anderson Cancer Center. TMF actively lobbies Congress for legislation to improve access to cancer treatments for children.
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