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Gold Ribbon Hero – Damon’s Story | Osteosarcoma

Damon’s Story

Damon_Dad_UHSToday, we would like to bring you the story of Gold Ribbon Hero Damon and his fight against osteosarcoma. Throughout his own personal battles with childhood cancer—battles which Damon has never once doubted that he will eventually win, no matter how long it takes and how hard he has to fight—he has sought to use his experiences to raise public awareness about childhood cancer and help others win their battle as well. As his father writes:

When Damon was diagnosed, a torch was lit in his heart.  It fueled his spirit and gave light to others.  His mother and I carry a light for him, because his torch fuels our hearts as well.  There is a scripture that reads: “Nor does anyone light a lamp and put it under a basket, but on the lampstand, and it gives light to all who are in the house. Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in heaven.” (Matthew 5:15-16)

Fighting Osteosarcoma: “I CAN DO THIS ALL DAY”

Damon was diagnosed with osteosarcoma in January 2014, at the age of 9, after his mother gave him a hug and felt an unusual lump on his left arm. 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 2015 (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; as his father notes, “His mother 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.

Mom_Damon_CaptainAYet just this month, 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 is now turning to a clinical trial in the hopes that an experimental treatment may prove more successful at finally stopping the cancer growth.  It will mean longer stays at the hospital and time away from the family, but his mother gave up her job to make sure Damon is well taken care of and always has someone with him.

Now aged 12, Damon faces 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’s father says, “Damon is a tough kid, tougher than many, and he will be okay…I told Damon it’s like boxing, sometimes the fight is over in one round, sometimes it goes 15 before you win. It just depends on the competitor. Osteo is a much tougher competitor than we were ready for, but we have too many in his corner and he’s too tough to give up.” He even has Captain America (Chris Evans) in his corner!

“A Beacon of Hope”

Being a Gold Ribbon Hero means to believe in someone or something.  Let that belief light a fire in your heart for all to see.  You’ll find when you do, even in your darkest hour, that light will guide you back and be your ‘Beacon of Hope.’ –Damon’s father

Untitled designThroughout 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.

More recently, 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, where kids can ring it 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!”

ACCO is excited that Damon will be our Ambassador at an upcoming Corporate PJammin event to be held at the Microsoft Store in San Antonio TX. Thank you Damon for your determination to let others know that kids get cancer too!
Thank you, Damon, for sharing your story with us, for all your work helping and inspiring other children facing a similar situation story, and for showing us the brave, courageous face of a true childhood cancer warrior!

Damon continues to jump at the opportunity to join other childhood cancer efforts in raising awareness. We look forward to receiving his help at our next big corporate event in Texas! A local Microsoft store is rolling out the red carpet for kids with cancer! Stay tuned…



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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.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

 

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