September is Childhood Cancer Awareness Month, and each year we have the honor of meeting these brave kids and their families. We will be sharing stories from some of the families we have had the pleasure to meet. The following story is about Damon Billeck as told by his mother, Lisa. A special thank you to Lisa for sharing her son’s story.
Damon was diagnosed with osteosarcoma in January 2014, at the age of 9. We were in the grocery store that Friday night and as I gave him a hug, I felt an unusual lump on his left arm. I immediately took him to the ER thinking he was having an allergic reaction to something and that’s when we were told our son had Osteosarcoma Bone Cancer. Osteosarcoma is the most common form of bone cancer in children and teens, and while it can develop on any bone, it is usually found at the quickly-growing ends of the “long bones” such as those in the arms and legs. In Damon’s case, the enormous tumor had destroyed most of his left humerus (the upper arm bone between the elbow and the shoulder).
Despite the damage from the tumor, Damon underwent limb-salvage surgery in April 2014 (a complex operation which removes as much cancerous tissue as possible without amputating the entire limb), followed by ten months of highly-intensive chemotherapy. In January 2015, exactly one year after his diagnosis, Damon was declared N.E.D.: No Evidence of Disease!
Unfortunately, what appeared to be a victory in Damon’s fight against cancer was little more than a respite between rounds. In November 2015, routine scans showed that the cancer had returned to his arm. This time, limb-salvage surgery was not possible; the only option was amputation. Yet Damon refused to give up the fight;, “His Dad and I cried; Damon did not. He said he understood and he would rather hug us with one arm than to die with two.” After surgery and more chemotherapy, Damon was again declared N.E.D. in September 2016.
Yet again, his first routine scan since September showed more bad news: the growth of three new nodules in his lungs. One of these nodules is inside the lining of the lungs—a “pleural metastasis”—which could potentially break through the lining and spread into the pleural fluid surrounding the lungs. Having exhausted all available chemotherapy options, Damon’s oncology team at M.D. Anderson Children’s Cancer Center turned to a clinical trial in the hopes that an experimental treatment may prove more successful at finally stopping the cancer growth. It meant longer stays at the hospital and time away from the family, but I GLADLY gave up my job to make sure Damon was well taken care of and always has someone with him.
Damon faced this new challenge just as he has faced every one before, with courage and determination to win this fight, no matter how long it takes. Calling himself “Bugsy” after the guinea pig in “Bedtime Stories” with Adam Sandler, he understands the experimental nature of the treatment options available to him. Yet when asked by his doctor if he was ready, he quoted Captain America by saying, “I can do this all day!” Damon is a tough kid, tougher than many. Osteo is a much tougher competitor than we were ready for, but we had too many in his corner and he was too tough to give up.” He even has Captain America (Chris Evans) in his corner!
Throughout his cancer journey, Damon has never let his personal struggles prevent him from raising awareness about childhood cancer. When Damon’s story caught the attention of musician Pharrell Williams, Williams sent Damon an inspirational video encouraging Damon to “do wondrous things and inspire many.” Damon took this to heart! He became the “spokes-kid” for the WNBA Silver Stars’ cancer program “Assist Against Kids with Cancer,” as well as for the San Antonio Rampage. He also took part in an advertising campaign for University Hospital.
During his journey, Damon wanted to find a way to help kids with cancer celebrate their victory over this disease, so he coordinated with the San Antonio Fire Department to secure a bell from an old fire truck. This bell is now on display at University Hospital in San Antonio Texas, where kids can ring the bell when they receive their final chemotherapy treatment! The bell also memorializes firefighters who have passed away due to occupational cancer. Damon’s public spirit caught the attention of Texas lawmakers, who invited Damon to become “Governor for the Day.” Damon’s first order of business was to proclaim October 7, 2016 “Pediatric Cancer Awareness Day!”
Damon and our family were selected for the 2016 Kidd’s kids trip to Disney World! To see the smile on his face the day I told him was one that I will never forget! Neither Damon nor his brothers or twin sister had been to Disney World, so it is one that we will never forget! Damon had the time of his life! He got to do so many things at the park and even met Laura Murano from “Austin & Ally!” Damon fell in love and got to spend lots of time with The Kidd Kraddick morning show including riding on Space Mountain with Kellie Rasberry and hanging out with Buzz lightyear and Big Al! Thank you to the cast and crew of the Kidd Kraddick Morning Show for making a dream of Damon’s come true at a time that we would not have been able to.
Sadly, Damon won his battle but lost his life doing so at 11:26am, April 3, 2018. He left behind his mom, dad, 2 older brothers – Brandon and Stephen and his twin sister Dara. He also left behind a world of family and friends that absolutely love and adore him! The friends we made on his cancer journey will forever live in our hearts. September is Childhood Cancer Awareness Month , so please hug your children extra tight tonight and think of all the children fighting Cancer.
