A Gold Ribbon Hero Dad Goes Fishing for Greater Awareness!
In celebration of Father’s Day, we would like to take a few minutes to introduce Gold Ribbon Hero Thomas “TA” Tucker, the proud father of childhood cancer warrior Harley and now a dedicated childhood cancer advocate. An avid bass fisherman, TA has created a unique and incredible decoration for his fishing boat that showcases the gold ribbon symbolizing childhood cancer as well as his family’s childhood cancer motto: #HARLEYSTRONG. Now, he is taking his message on the road, or should we say…on the water…to spread awareness about childhood cancer and the need for new and better treatment options for this rare and devastating disease!
ACCO is so excited to share the Tucker family’s story with you and help TA on his mission to raise awareness about childhood cancer: what it means for children, what it means for parents, and what it means for families. TA is exactly the kind of advocate kids with cancer need today, and we hope his enthusiasm and dedication will inspire you this Father’s Day.
TA Tucker, Childhood Cancer Advocate
When his daughter Harley was diagnosed with a rare form of childhood cancer—Rhabdomyosarcoma—in January 2015, TA was devastated. “I couldn’t believe when my daughter was diagnosed with cancer. The feeling I had was unexplainable, and I’m sure that’s how every parent feels.” As TA and his wife began the difficult task of guiding Harley through treatment, he was disappointed and frustrated with the lack of innovative, more effective and less toxic treatment options for Rhabdomyosarcoma and other forms of childhood cancer. As TA states, “Children are the future of America and I feel the majority of funding for research should go towards saving our children.”
Unwilling to simply sit back and do nothing, TA has made it his mission to do what he can to raise awareness about childhood cancer and the need for greater investment in finding better treatments—and cure—for all types of childhood cancer. So, he decorated his bass fishing boat with the gold ribbon symbol for childhood cancer and is taking it—and his message of awareness—on tour throughout the Southeast United States!
Harley’s Story With Rhabdomyosarcoma Cancer
To understand TA’s dedication to this critical cause, we celebrate Harley as well! Harley was diagnosed with rhabdomyosarcoma in January 2015, at the age of six. While preparing for a previously scheduled surgery on her nose and sinuses, the surgical team quickly realized that there was a problem. An emergency MRI revealed a tumor growing between her eyes and nose, pressing on the optic nerve.
Rhabdomyosarcoma is the most common soft tissue cancer in children and accounts for about 3% of all childhood cancers, with approximately 350 new diagnoses every year in the U.S. Rhabdomyosarcoma develops in cells that normally grow into skeletal muscles. As in Harley’s case, rhabdomyosarcoma commonly begins in the head and neck area (near the eye, nasal sinuses, throat, or spine), but it can also grow in the urinary and reproductive organs, the arms and legs, as well as the chest or abdomen.
Traditional treatment for rhabdomyosarcoma includes radiation therapy and chemotherapy, and if possible, surgery to remove the tumor. Luckily, Harley’s tumor responded to radiation therapy and began shrinking immediately! After six weeks of intensive radiation therapy, Harley celebrated her final radiation treatment on March 3, 2015. Chemotherapy continued for several more months, but Harley was able to celebrate her final chemotherapy treatment in November 2015. Regular scans show that 18 months later, she is still NED!
TA and His Boat on Tour for Greater Awareness
Working with Balance Graphics in Charleston, WV and ACCO’s graphic designer, TA developed a truly unique and distinctive branding for his bass fishing boat by incorporating the gold ribbon and the ACCO trademarked logo …because kids can’t fight cancer alone!® And of course the decoration also features the logo the Tucker family used during Harley’s treatment: #HARLEYSTRONG. TA currently plans to use his boat in bass fishing tournaments throughout West Virginia, Virginia, North and South Carolina, Kentucky, Tennessee, Georgia and possibly as far as Florida. At every stop, during every tournament, TA’s message of awareness will be prominently visible. He hopes that it will encourage people to ask questions, learn about childhood cancer and join in the fight to encourage and stimulate the development of more effective and less toxic treatments for childhood cancer.
On this Father’s Day, ACCO is very excited to partner with this amazing Dad and help him bring his vision and mission to life! TA’s enthusiasm, determination and love will surely carry his message of awareness about childhood cancer far and wide.
About American Childhood Cancer Organization
American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.
One of our Gold Ribbon Heroes, a brave childhood cancer warrior from West Virginia, is in desperate need of a show of support.
Eli’s cancer journey began just before Christmas 2016. While playing Peter Cratchet in a local production of Scrooge the Musical (Eli wants to be an actor someday!), Eli suddenly began to vomit. The unexplained vomiting continued through the holiday season, and despite “a mother’s instinct” telling her it was something more serious, Eli’s family first accepted the pediatrician’s explanation that it was likely related to diet or a stomach bug.
Unfortunately, Eli’s tumor has not responded to the aggressive treatment as well as his oncology team hoped. Scans in mid-May showed the growth of additional tumors, including one the size of a golf ball. His second round of chemotherapy, which began immediately after the last scan, has led to more serious complications, including a seizure and a stay in the PICU. His oncology team believes that this next round of chemotherapy will last at least another six months.
The Mother’s Day traditions of paper cards and handmade crafts will not be the current reality for all families this year. We know that an inside look into the reality of Mother’s Day may include a family celebrating a child’s successful, but excruciating cancer treatment. We also know that other scenes are filled with moms comforting a sick child in a hospital or even worse, moms shielding a broken heart in the empty silence of a house that, at one time, used to be full of chaos and noise. This unfortunate depiction is often the sad reality left in the devastating wake of childhood cancer.
Eleven years ago, on May 11, Derek Madsen passed away after a long struggle with an aggressive type of childhood cancer, neuroblastoma, at the age of 11. That year—2006—May 11 was just a few days before Mother’s Day. On that day, Derek’s mother, Cyndie French, was forced to make the most difficult decision a mother can be asked to make: the decision to let her son go, to help Derek take his final breath. So, it seems only appropriate that we begin this special multi-part series on Derek and Cyndie honoring a very brave childhood cancer mother, eleven years after Derek passed away in the loving arms of his family.
Cyndie’s goal in sharing her story exclusively with ACCO is to raise awareness about the devastating consequences of a childhood cancer diagnosis on the family. It is easy to discuss the need for greater research into finding a cure for childhood cancer but can be difficult to face the grim realities that families go through—physically, emotionally, and financially—after a cancer diagnosis. Like ACCO, Cyndie’s goal is to shine a light onto those problems, in the hope that bringing this light will also bring a solution: more financial and emotional support for families coping with a cancer diagnosis.
Over the next several months, ACCO will chronicle Cyndie’s story, from her own perspective. In this multi-part series, we will attempt to offer a comprehensive view into what family life is like during treatment for an aggressive and ultimately terminal case of childhood cancer. Cyndie’s story will include the financial consequences of a cancer diagnosis, the challenge of caring for siblings and maintaining a supportive family structure, the difficulty of helping her child cope with hospital stays and treatment protocols, and the gut-wrenching discussions and decisions that must be faced as treatment fails. In each segment, we will share Cyndie’s goals for helping families cope and share information about ACCO’s mission of support and assistance as well.
Right from the start, Cyndie would like to thank Renée for the dedication, care, and compassion that she has brought to this story. During the year of Derek’s treatment, Renée became more than simply an interested third party, she became a friend. Both Cyndie and Derek came to trust her and welcome her into their lives, even during some of life’s intimate moments. As her photos show, Derek was often angry, frustrated, and scared during his treatment, refusing help from everyone but Cyndie, yet he came to realize that Renée was there to share his story and to honestly and appropriately capture his feelings. ACCO would like to thank Ms. Byers for allowing us to incorporate these amazing photos into our series on Cyndie and Derek.
Evan Mario Macrone was 11 years old when he was diagnosed with childhood cancer, in August 2015. First, Evan noticed a small lump in his groin while playing with his little brother, Gavin. A biopsy revealed the worst-case scenario: a soft tissue sarcoma. So instead of starting middle school, Evan started an intensive treatment regime involving 17 rounds of chemotherapy, 6 weeks of radiation, and surgery.
On March 15, 2017, Evan passed away while traveling to California with the Make a Wish foundation to visit his best friend and see the famous sights of Los Angeles. Unable to make the trip home, Evan was surrounded by his family, including his two beloved brothers Mike and Gavin, and his best friend. He was laid to rest near his family home in Florida.
“Evan touched lives in so many ways, more than I could have known. More important, Evan was a kind, gentle, loving, joyful, and giving person. He made sure others in his class understood concepts and went out of his way to assist them and reach out to those he saw may be having difficulty. He gave of himself to his friends and scouts selflessly.
Throughout Life I have learned
Thank you
Finally, we would like to thank:
The goal of the 2017 Childhood Cancer Action Days was to give members of the childhood cancer community, including parents, children with cancer, survivors, healthcare professionals and advocacy groups the opportunity to learn and implement effective advocacy approaches specifically relating to childhood cancer. This two-day event started with a day of formal advocacy training where participants learned critical “tips of the trade” from experienced advocacy experts within the childhood cancer community. On Tuesday, after an inspirational breakfast meeting, participants were off to “The Hill” to meet with their Members of Congress and staff in person to share their stories and show their support for childhood cancer issues currently pending before Congress.
Advocacy is Ongoing: Keep the Pressure On!
