Gold Ribbon Hero: Kelsie

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Meet Kelsie, a forever 17 year old glioblastoma warrior.

After battling months of nonstop headaches and losing peripheral vision in her right eye, Kelsie underwent surgery to remove an egg-sized glioblastoma in her left occipital lobe. After recovering from surgery she went through 30 days of radiation and chemo, followed by a year long course of chemotherapy. Kelsie thrived during the time after treatment. She was actively involved in her school, community and church. She participated as a cheerleader and majorette for her high school, was involved in missions, and loved music and singing.

Kelsie went 18 months off-therapy with no evidence of disease. In January 2018, Kelsie had a seizure and after a scan found multiple inoperable recurrent tumors she was put into a clinical trial. Kelsie started the HSV G207 clinical trial at Children’s of Alabama followed by 25 rounds of radiation but it was simply not enough to keep up with the aggressive nature of the disease.

Kelsie’s mom, Tracey, remembers her by saying, “Kelsie lived her life to the fullest. She never let her diagnosis discourage her. She kept a positive attitude and a smile on her face. She never stopped striving for success in everything she did. Whether it be school work, mission work, cheerleading, band…you name it. She even tried out for varsity cheer just one month after undergoing surgery, and of course made the squad. She was determined. She was always more concerned with other people being okay rather than herself. She never let you know anything was wrong with her. She wanted more than anything for life to just be normal. Kelsie loved the people in her life BIG and with all she had. Her life made such a huge impact on everyone that knew her. Cancer can take many things from us, but it can never take the love and the legacy our loved ones leave behind.”

Learn more about Glioblastoma here: https://www.acco.org/blog/childhood-brain-tumors-staging-and-prognosis-factors/

Follow Kelsie’s Hope on Facebook: @LifeOfEucharisteo

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

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.

GRH Jericho Meet Jericho, a 4 year old B-Cell Acute Lymphoblastic Leukemia warrior.

At just 3 years old, Jericho was experiencing a swollen, bruised and spotted stomach accompanied by fevers, so his parents took him to the doctor. The pediatrician sent the family to the emergency room. His parents suspected some sort of infection but when doctors and nurses started running additional tests, they knew it wasn’t just an infection. Tests were completed overnight and the next morning doctors confirmed the leukemia diagnosis. “Our world collapsed, it changed our lives completely. We were devastated, terrified and deflated. We felt crushed for a while, then accepted it. We were ready to kick cancer” said Jami, Jericho’s mother.

Treatment began immediately with weekly chemotherapy treatments and physical therapy for the next three years. In his first month of treatment, he had a picc line placed which is now a port implant. “We were bombarded with medicines, schedules, routines that we must keep, words that we had no idea what they meant or how to properly say some of them, nurses, oncologists, anesthesiologists, child life specialists, chaplains, and all other forms of hospital staff,” remembers Jami.

Jericho has had several lumbar punctures and had a very serious allergic reaction to PEG chemotherapy. Jericho went into anaphylactic shock and received compressions for 27 minutes before regaining consciousness. On the way to the PICU he went into cardiac arrest and received compressions for an additional 13 minutes before regaining consciousness for the second time. Doctors confirmed there was no sign of brain damage so they unhooked him from monitors. Last July, Jericho’s parents decided to shave his head after several handfuls of hair began to fall out. He was so upset, but in December of 2019 his hair began growing so fast, it needed a trimming!

A year into his battle, Jericho is four years old, full of life and happiness. His family helps him celebrate small victories and make the most out of every day. He loves spending time with his family and playing with his brother, Jamison. He loves to swim, play outside, play with friends in Sunday school and play on the swings.

Follow Jericho’s story on Facebook @MarchingAroundJericho.

To learn more about Acute Lymphoblastic Leukemia, go here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Meet David, an adventurous 8-year-old DIPG warrior. He is a bear cub scout and a roller coaster enthusiast with a zest for life! david1

David Jr.’s symptoms came on quickly. Within a day his parents knew something was wrong. David was participating in his weekly jiu jitsu class when he could not roll. His grandfather brought him home and his parents noticed that his head was wobbly and tilted and he was acting goofy. David’s parents took him to the pediatrician who suggested David could have gotten into some medication. The doctor had ruled out an ear infection and possible recurrence of torticollis, a problem with the muscles of the neck that causes the head to tilt down. When David was a baby he had suffered from this condition and his parents thought this could be a recurrence. The doctor sent him home and said that if he had any headaches or was dizzy to bring him back to the office.

On April 17, 2018, David was taken back to the doctor’s office because of dizziness and a headache. The pediatrician mentioned that it might be a brain tumor, but his mother remembers laughing it off thinking it was so off course. The pediatrician advised his parents to take David to the ER for fear of a stroke. After a stat MRI, the ER doctor told them that there was a mass on David’s brain.

david3 David was brought into the PICU almost immediately where they met the oncologist who advised David and Elizabeth about David Jr.’s condition, DIPG. Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. After receiving the diagnosis from the oncologist, David’s parents decided they wanted to get a biopsy even though that was against the head of pediatric neurosurgery. They were advised that having the biopsy would not change the result and a cure didn’t currently exist.
David Jr.’s parents were not accepting this, so they decided to go forward with the biopsy. He received 30 days of radiation to his brainstem and then received radiation in 2019. In the summer of 2019, David made his way to Cincinnati for a trial. Unfortunately, he was denied admission because he was doing ‘too well’ to participate. The family was advised to bring him back after Christmas.

In December 2019, he lost the use of his right hand. He was on a match trial in January of 2020 and by February of 2020 he was in the ER. He was extremely lethargic and the tumor had changed. He was prescribed high dose steroids again and they waited. The first week of April during the covid pandemic, David was rushed to the hospital. This time he stayed for five days and doctors were thinking of doing radiation for the third time. In late April, David was having problems breathing. He underwent radiation for the third time and just last week he got out of bed by himself, with no assistance!

Like night and day, David went from being unable to roll, speak, move, breathe properly, and david2 swallow to talking like normal, walking normally and getting around with no assistance!

Every day, the Turner family talk about their “good day score” and last week David said he had an “11, because I got out of bed and walked by myself!” This week, he rated one day a “14” because of surprises throughout the day.

David is surprising all of the doctors with his turnaround. His family went from talking about end of life care to walking around normally. During his DIPG journey, David has remained positive. When he was initially diagnosed, his parents had pre-existing plans to take him to a popular outdoor event in his hometown and they weren’t missing it just because of the diagnosis. He told his mom that “today was the best day ever” and asked if they could come back next year. Of course they did. David’s parents were dedicated to making memories with him while he was able to get around and remember. For a 9 month diagnosis milestone, his parents celebrated with a Chuck-e-cheese party. For the one year diagnosis, his parents celebrated with a Nerf party.

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth. david jr

This past January, David was able to meet the Governor and Senator of Kentucky where he rummaged through their desk drawers and banged the pens on the desk. Both the Governor and Senator welcomed David and helped declare May 17 as DIPG Awareness Day. Last year 32 states got proclamations passed and this year the proclamation was signed for DIPG awareness. David even declared Ice Cream Day at the youth advocacy day in the rotunda this past January.

Follow David’s Adventures on Social Media:
Facebook: @davidsadventuredipg
Instagram/Twitter/TikTok: @davidjrmom

UPDATE: May 21, 2021 – David Jr. battled DIPG since 2018 and this morning, David passed away.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

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!

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/

grh Adrian Meet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16.

Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.

On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma. Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.
Snapchat-457468502

Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”

Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.

Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.

Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica. edit2

Adrian is now 18, and thriving as a survivor. He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!

For more information about childhood cancer please visit: https://www.acco.org

Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.

Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.

Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.” The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.

Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.

Grace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.

According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”

Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys talking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!

*Special thanks to Barbara Zobian and the Candlelighters NYC*