Tag Archives: sarcomas

Meet Damon, a childhood cancer advocate and forever 13 year old. The day that Damon was diagnosed, he heard the song, “Happy” by Pharrell while in the ER with his mother Lisa. His father Brian suggested that he make it their theme song and make every day “happy” which helped Damon be positive every day.

Brian’s radio background afforded him the opportunity to reach out to Pharrell’s recording company where he requested an autograph. Pharrell did something much more exciting; he recorded a video for Damon which proved to be a lasting memento in his life. Pharrell’s message conveyed positivity and to treat every day as a gift. Watch Pharrell’s video here:

One night while in surgery, Brian watched the video several times and allowed it to speak to him. When Damon woke up, Brian showed Damon the video and told him to watch it until he got the message. The video challenged the Billeck family to live in the moment, cherish the gift of today and Damon started having fun. He loved having fun with his family and could often be found making videos with them in WalMart.

Damon’s spirit was infectious. Damon was able to meet Buddy and the staff at Carlo’s Bakery to take a tour and learn more about the company. He made such an impression on Buddy and the staff that he was invited to Buddy’s bakery and restaurant opening in San Antonio, Texas. He was even able to collaborate with Jumo Health to create a comic book titled Understanding Osteosarcoma. Read his comic by clicking the picture below.

During his fight, Damon was able to overcome many challenges including a limb amputation and a relapse. His strength and humor helped him to get through the tough times. Damon wanted to help other kids with cancer at University Hospital by securing a bell for them to ring when they complete chemotherapy or they were declared N.E.D. – No Evidence of Disease. Damon was able to make friends with the San Antonio Fire Department and Chief Hood who made his dream happen. The bell is aptly named “Damon’s Victory Bell” which helps to celebrate an end to cancer and memorialize firefighters who passed to occupational cancer. Appropriately enough, Damon was able to ring his own bell at the age of 12!

Texas lawmakers invited Damon to the Capitol where he became Governor for the Day. His proclamation as newly appointed Governor was to declare October 6, 2016, “Pediatric Cancer Awareness Day.”

On January 3, 2017, Damon learned that his cancer had returned. By this time, Damon had tried all procedures and protocols to kill the cancer and the only treatments left would be trial medications. A few months prior, his parents had a conversation with Damon talking about the prospect of cancer returning. “If it comes back, we will turn you into a guinea pig, get you a nametag and call you Bugsy (from Bedtime Stories)!” they said, jokingly. In the Billeck family, humor helped them cope with his prognosis. Damon looked at his parents and said, “well, I guess y’all need to get me that nametag now.” Damon’s perspective on his prognosis was, “I can do this all day!” Brian was so inspired that he decided to tweet Chris Evans, star of Captain America. Evans retweeted the post about Damon and his story went viral. From then on, Damon and Chris kept in touch. Despite his prognosis, Damon continued to raise awareness for childhood cancer. He was the Ambassador for ACCO in 2016 & 2017 and attended the PJammin® for Kids with Cancer event at Microsoft in San Antonio & Austin, Texas. Check out his appearance here:

Damon fought a long and hard battle with osteosarcoma and passed away on April 3, 2018. His legacy lives on and he continues to help raise awareness for childhood cancer. When Damon was 12, he wrote a letter to cancer, illustrating what it took away and what it taught him. It’s a lasting impression on how children fight and deal with cancer. Read his letter here:

Lisa and Brian have become instrumental in the childhood cancer fight and they continue to advocate for kids with cancer. In early 2019, Brian joined hundreds of advocates at the Texas State Capitol to advocate for continued funding of $3 billion in cancer research funds as part of the Cancer Prevention Research Institute of Texas (CPRIT). Damon’s parents and family continue to advocate and have big plans to help in the fight against childhood cancer.

Follow Brian on Twitter or Instagram @happy2badad or on Facebook at @teamdamonbenefit/

Read Damon’s original Gold Ribbon Hero story here: https://www.acco.org/blog/golden-ribbon-hero-damons-story/

You can take action in your own state by learning more here.

Learn more about the types of sarcomas and read more stories here during our Sarcoma Awareness Month feature.

Meet Will, a forever 11 year old childhood cancer hero.

At three years old, Will was diagnosed with adrenal cancer. He immediately started chemotherapy when it was discovered that he had Li-Fraumeni syndrome (LFS). This syndrome causes a mutation of the TP-53 gene which results in a susceptibility of several cancers. Since being diagnosed with LFS, Will underwent full body scans each year.

For four and a half years, Will was considered to have no evidence of disease(NED). In April 2018, doctors found a tumor on his left pelvic bone and began treatment for osteosarcoma. Will endured chemotherapy and surgery on his pelvic bone. The team resected a large portion of his hip bone. After his surgery, he was declared NED in February 2019. For seven months, Will remained NED until a scan in August 2019 revealed osteosarcoma in his right hip bone. Hip replacement was necessary and this time, unfortunately chemotherapy was not an option.

Will was a fierce competitor in basketball and baseball and loved playing video games with his friends. He loved the color blue because it represented many of his favorite professional teams including the New York Giants, New York Yankees and the New York Rangers.

Will was determined to not let cancer get him down. Despite his diagnosis, he continued to brighten up every room he entered and giggle helping his family and friends feel at ease. On June 2, 2020, Will passed away peacefully surrounded by loved ones, after a courageous battle with pediatric cancer. According to Judy Shields, Will’s grandmother, “he was certainly a gift to the world! He taught us all how to fight and stay strong right to the end. Smart as a whip with a smile to light up a room. We will miss him forever.”

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.

Damon’s ‘Happy’ Perspective