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Damon’s ‘Happy’ Perspective

Tag Archives: pediatric oncology

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.

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Meet Haven, a brave cancer warrior that was taken too soon. Haven fought a long battle with B-cell acute lymphoblastic leukemia (ALL) for almost five years with a smile on her face and concern for people around her. 

At just nine years old, Haven was experiencing fevers and swollen lymph nodes. On April 24, 2015, she was diagnosed with B-cell ALL. “We went to get blood work to see why she was having fevers and we were in utter shock hearing the word ‘leukemia,’ ” remembers Haven’s mother, Magan. Haven’s parents were fearful and heartbroken but Haven remained positive with a “let’s beat this” attitude.

Treatment started almost instantly and Haven received two and a half years of chemotherapy. She had a port placement and removal as well as a hickman placement and removal. Haven went into remission for 15 months and then relapsed again. This time, treatment consisted of four months of chemotherapy and a bone marrow transplant which resulted in Haven going back into remission for seven months. On December 20, 2019 Haven relapsed and sadly passed away on January 7, 2020. 

Haven was very strong. When she relapsed the first time, she told her mom that ‘at least it was her and not someone who couldn’t handle it.’ One of Haven’s favorite things to do was cooking and she always wanted to feed everyone. Haven asked that her family help feed other families on the oncology floor during the holidays in honor and in memory of her.  “Even on her deathbed, she was still worried about everyone else and was not scared. She was at peace knowing that her life would soon come to an end,” Magan said. Days before Haven passed she said that she was grateful that she had received the bone marrow transplant since researchers could learn from her story. 

To learn more about ALL: https://www.acco.org/childhood-leukemias/

To nominate your own Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

Together, we can make a difference.
Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®. 

For more information about how ACCO can help your family, call 855.858.2226 or visit:

 

Meet Lilliana, a survivor of Burkitt’s lymphoma!grh lilliana  

Lilli loves to draw and paint, and is currently looking at colleges to pursue a career as a social worker.

Lilli was diagnosed with thyroid cancer at the age of 13 on September 13, 2013 and was understandably scared and upset. Shortly after her initial diagnosis, the family got a call saying it was much more serious saying they needed to pack their bags for a two week stay in the hospital. Lilli was diagnosed with stage 4 Burkitt’s lymphoma.

Treatment was intense for Lilli, she endured seven long months of chemotherapy and spinal taps. She had a port placed in her chest and shortly after had to have it removed due to a severe infection. “I faced many challenges during my treatment both physical and mental but during the whole time I never let myself get a bad attitude about any of it.

“Personally, as a 13-year-old girl, my biggest trouble was feeling confident without my hair. During that time, I did not feel pretty and the only pretty thing about myself was my hair; but, I overcame it and learned that I was beautiful no matter what” said Lilli.

On April 8, 2014 Lilli was cleared for remission and in June of 2019 she was declared out of remission! She is now 19 and attends the survivorship clinic at Pittsburgh Children’s Hospital for check ups at least once a year. Please join ACCO in sending Lilli well wishes in her future endeavors.

Lilli was featured in a Buzzfeed article about her journey. Read her firsthand story here: https://www.buzzfeed.com/lillianabailey99/childhood-cancer-gmzl5dpr8
Learn more about childhood cancer here: https://www.acco.org/types-of-childhood-cancer/

Donate to help kids like Lilli fight cancer: https://www.acco.org/donate/

 

GRH_ Natalie

 

 

 

 

 

 

 

 

 

 

 

Meet Natalie, a 12 year old aspiring astronaut who wants to become the first woman to walk on the moon! This courageous and determined little girl is a wilm’s tumor survivor!

At three years of age, Natalie was diagnosed with a bilateral Wilm’s tumor. Symptoms started with a swollen stomach and developed into vomiting and constipation.  Her pediatrician ordered an x-ray of her abdomen and initially said it was stool in the images. As a precaution, labs were drawn which came back showing Natalie was severely anemic. She was sent home and ended up in the Cincinnati Children’s ER that night. The family was in the ultrasound room for more than an hour before receiving the diagnosis.

Natalie was immediately admitted into the ICU and chemo started within a few days. A month later Natalie was rushed into emergency surgery in septic shock due to complications and as a result, the tumor and her right kidney were removed. After two months in the hospital, Natalie was released. Four months after the initial diagnosis, Natalie had surgery to help salvage her left kidney however doctors had to remove it and place her on dialysis. Over the next year, she was put under daily chemo and dialysis treatments. In October of 2012, Natalie received a life saving kidney transplant from a family member.

Today, Natalie is a normal 12 year old who loves spending time with family, drawing and participating in drama club. She was officially cured in October 2016 and is very thankful to be a survivor. She still has to go in for labs and doctors visits, but according to her mom Tracy, “she handles all of that like the pro she is.”

Please join ACCO in sending well wishes to the young astronaut to-be, Natalie!

For more information about Wilm’s tumors, please visit: https://www.acco.org/wilms-tumor-and-other-childhood-kidney-tumors/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Natalie: https://www.acco.org/donate/

Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here: https://www.facebook.com/naomisfight/

To learn more about childhood cancer visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

To donate to help kids with cancer: https://www.acco.org/donate/

 

Meet Frank “Sal,” a 16-year-old sports enthusiast and Lumineers fan. At the age of 14, Sal was diagnosed with germ cell testicular cancer and is currently in remission! IMG_3438

Sal was complaining of a swollen testicle after a bike accident and his parents took him into the doctor’s to check it out. Instead, they were sent straight to the emergency room after the doctor suspected it might be ruptured. Within ten minutes, the doctor informed Sal and his parents that it was testicular cancer. Initial impressions were scared and upset but Sal was determined to beat it.

His treatment was accelerated by receiving a total of 28 chemotherapy treatments. The treatments were rigorous; both in and outpatient and once the initial 24 treatments were complete, they were sent for four additional outpatient treatments. “He went through treatments like a champ, now he can help other children to see that they can get back to normal,” his mother, Elizabeth said. During his journey, Sal had abdominal surgery to remove a mass from his kidney where his cancer had spread.

Elizabeth remembers, “I was diagnosed two years ago with breast cancer and I am currently 1.5 years in remission. I thought I handled my diagnosis and treatments like a pro until I watched my son go through this. He blew me away. He never complained, sat in the hospital for six days in a row, 24 treatments over seven weeks and still smiled for pictures. When he lost his hair, I cried, not him. He has been unbelievably strong through this.”Sal

During treatment, Sal was not able to join the football team, however he has joined the track team and already earned second place in a conference for his long jump. According to his mom, “Frank is the most giving kid, he plans to advocate that you can make it and do bigger and greater things even when you feel like rock bottom.”

 

To learn more about childhood cancer: https://www.acco.org

To donate to help kids with cancer: https://www.acco.org/donate/

FOR IMMEDIATE RELEASE – September 28, 2018 – Washington, D.C. – The American Childhood Cancer Organization (ACCO), the soleU.S. member of Childhood Cancer International (CCI) provided its overwhelming support today for the World Health Organization’s (WHO) 0announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.

Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.

Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.Screen Shot 2018-09-26 at 3.15.41 PM

How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, ACCO’s Chief Executive Officer, and President of Childhood Cancer International. “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little yet are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world.” Ms. Hoffman will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.

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  • Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;
  • Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship
    care inclusive of the needs of childhood cancers;
  • Improve access to affordable essential child cancer medicines and technologies;
  • Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;
  • Prioritize cancer as a child health priority and increase available funding at the national and global levels.

This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.

Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come.

*Some Stakeholders include: The International Society of Pediatric Oncology (SIOP), Intenational society of pediatric oncologists, Union for International Cancer Control (UICC), International Atomic Energy Agency (IAEA), International Agency for Research on Cancer (IARC), Sick Kids Hospital of Toronto, Texas Children’s Hospital, World Bank, Pediatric Oncology Rally to Transform Access to Global Essentials (PORTAGE), Friends of Cancer Patients (FOCP), Chai Clinton Health Access Initiative (CCHAI), BIO Ventures for Global Health (BVGH), Pharmaceutical Industry, International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)

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The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The U.S. largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. www.acco.org.

Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international develo
pment organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda. www.childhoodcancerinternational.org

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International. rhoffman@acco.org; 202-262-9949.