Just after turning three years old, Oakley’s eyes started swelling and after three days, she started to develop a fever. Her mother took her to urgent care and the emergency room several times and was sent home with a stye in her eye and tonsillitis. Another doctor said it was allergies. After not getting a straight answer, Oakley’s mom pushed for more testing. When her doctor called in additional blood testing, her mom knew they had found something. “The next morning, I was called to rush her into the ER for what most likely is cancer – leukemia. Looking back, she started to get very lethargic, didn’t want to play outside, when normally I had to beg her to come inside. She also had a lot of bruising on her legs and a change in her skin tone.”
After being rushed to the hospital, Oakley started receiving chemotherapy almost instantly. She is currently on the blintumomab clinical trial and has undergone two surgeries.
“A big obstacle being faced is her age. Oakley was a very shy and timid girl who didn’t speak to anyone. She was terrified to go to the clinic and didn’t understand what was going on. Thankfully, she has come out of her shell thanks to the amazing nurses and staff that all adore her.”
“Oakley is very headstrong, has always had a very good memory and has an amazing imagination. She can sit and play for hours making up her own games and stories with all her little figurines. Oakley’s also a very big outdoors enthusiast, she’s been hiking with us since she was 6 weeks old. Along with hiking she tags along off-roading on difficult trails, camping, and sometimes hunting since she was one years old.”
In 2023, Oakley was selected to represent ACCO as an ambassador and is found on ACCO’sGO GOLD® the RUN website.
Q. Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
R. Not really. Knew of it, sure. Knew what they do….not really. Knew just how devastating it can be for the kids and their families…..NOT AT ALL!
Q. Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
R. There are moments in your life you can recall with great detail. Maybe it was your marriage. Maybe it is the birth of your child. For me, I can recall the night I found out Damon had cancer as if it happened minutes ago.
That weekend, I was hunting with my oldest son Brandon. While in the deer stand, my ex-wife Lisa sends me a picture of Damon’s arm (one of the twins). She said she was in line with him at HEB and when she hugged him to say ‘I Love You,’ she felt a lump. She took a picture and sent it to me. She inquired as to what it could be. I had no idea.
She decided to go to Texas Med Clinic but did not arrive until around 10pm. After an hour or so, the doctor sent them to The Pediatric Hospital for further tests. Now it is past midnight.
They take tests, X-rays, etc. and all the while I’m pacing back and forth at Deer camp waiting for news. I call constantly but no word. Plus, they are sleeping waiting for answers.
At 3:26am I received a call from Lisa (Damon’s mom). I asked what did they find out? There was silence. I asked again. The silence turned to tears and at that moment, my heart sank. I knew something was not right.
The doctor took the phone from Lisa and said (And yes, I can recall word for word what was said): “Mr. Billeck this is Damon’s Doctor…..there is no way to sugarcoat this. Damon has a form of bone cancer and we need to deal with it immediately. We are transferring him to the Children’s hospital via ambulance and he should be there within ten minutes. I’m very sorry.”
Just like that, our lives were changed forever!!
Q. Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
R. Damon followed the protocol for treating Osteosarcoma. Sadly the methods of treatment of osteosarcoma over the past 30 years have not changed. Part is due to awareness, other part due to funding. They give the kids the same schedule of chemo and expect a different outcome each time. Doesn’t happen.
How do you know what is right and what is wrong. When Damon was diagnosed, half the doctors said to amputate his arm right away, the other half said it wasn’t necessary and that Limb Salvage Surgery is just as viable.
We spoke to Damon and kept him informed at all times. We NEVER hid anything from him, and never sugarcoated it either. He knew what we knew when we knew it. Yes, he was only 9 at the time, but the one thing you will be amazed is the rapid advancement of maturity in your diagnosed kid.
For the kids going through chemo it’s painful, very, very painful. It’s equally as painful for the parents because we can do NOTHING. We can lend support, say we love them, but in the end, they have to suffer and we have to simply watch. Your heart will break daily! There is no getting around that!
Q. Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
R. Trials & obstacles go hand in hand with cancer. There will be days they are feeling great and days they are in great pain. The journey is like riding a rollercoaster. From the day your child is diagnosed the rollercoaster begins. Here’s something they wont tell you. Once you are on the rollercoaster…..you can never get off!
You will forever have highs and lows. Even if they get to a stage of N.E.D. (No Evidence of Disease), the coaster continues. Because you still have to go back for 3 month check ups and experience what we can “Scan”xiety. That Scanxiety NEVER gets easier. Osteosarcoma can lay dormant for 10-20 years and show up again with a vengeance.
The journey is not all bad though. I will say the journey is what YOU make it! You can cry about the fact your child has cancer or just say….Okay…my kid has cancer, let’s move on. It’s up to you.
Pharrell Williams sent Damon a video that changed our lives and how we fought cancer. You can look for it on YouTube.
“The past you can’t change and the future you can only contemplate. But the preset is something most people ignore. The present is a gift, it’s malleable and it can be whatever you want it go be. Think hard about that!
We chose to make the present HAPPY! Damon had cancer, so why get mad, why get sad. It will not change the fact that he has cancer. Plus, we don’t know the future. We don’t know if the surgery will be successful. If the treatment will work, etc. So why worry about it?! But today, we can be happy. We can do whatever we want and we did!
My suggestion is to be HAPPY and have fun. Cancer can be fun if you let it. You just have to open your eyes.
Q. What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
R. Damon passed away at the age of 13 after five years of fighting. He won his battle with cancer, but lost his life in the process. That’s what heroes do….sacrifice themselves to save others.
The last year of his life was spent going from one trial medication to another. Never knowing if it would work or kill him. One trial, after one day on the drug sent him into a 3 day coma. Damon’s response after waking was “Guess that one doesn’t work!” LOL…. Another trial caused his skin to change color. I said he looked like a Minion. He knew the danger, but didn’t care. Because he also knew every failure would help point them in the right direction. How many adults would be willing to do the same?!
So now we deal with the fact our son | brother & twin is gone. If any person ever tells you it gets easier as the years pass, they are lying! It NEVER gets easier. NEVER!!
If a person loses their spouse…they are a widower If a person loses their parents…they are an orphan If a person loses their child…..there is no term for that! Painful…is the term.
But…doesn’t mean every day is rocky. As we said before…we chose to live Happy and that still applies. Damon was one hell of a kid. He changed the world and inspired others! He did more in his 13 years of life than I feel I have in my 52. But I’m thankful I had him. I don’t curse his death…..I celebrate his life!
Damon was a Honorary San Antonio Fireman. He was a Brand Manager. He was a leader, and innovator and a true inspiration for many!
He had a quote that he loved: Strength isn’t measured by how much one can lift. Strength is measured by how much one can lift others.
Ten acres of sunflowers bloomed this summer at Traders Village in San Antonio. The golden display was planted by Brian Billeck in honor of children battling cancer, especially his son, Damon. Sunflowers are a symbol of osteosarcoma, the disease that Damon battled. He passed away in 2018.
In June, the sunflower field hosted the Firefly Moms, a group of women who lost children to cancer, including Damon’s mother, Lisa. They brought photos of their children so that they could take pictures together.
Damon’s sunny attitude was infectious. “I can do this all day!” was his regular battle cry. His story and open letter to cancer both appear here.
Meet Archer, a 2 year old stage 4 high risk neuroblastoma warrior. At 21 months old, Archer stopped walking suddenly and was taken to the emergency room. The MRI revealed a large mass on his spine that was compressing his spinal cord. He immediately had surgery to remove the mass and had further testing to see if there were any more tumors. Since then, he’s undergone six rounds of chemotherapy, surgery, bone marrow transplants and radiation.
ACCO is proud to announce that our Regional Advocacy Coordinator, Elizabeth Turner, has been voted as the new Chair of the Kentucky Pediatric Cancer Research Trust Fund.
Elizabeth Turner was thrust into the childhood cancer community when her son, David Jr. was diagnosed with diffuse intrinsic pontine glioma (DIPG). After David Jr. was diagnosed, Elizabeth and David were on a mission to raise awareness and make every day the best day ever. In 2021, David Jr. passed away from DIPG at the age of 9 years old.
Throughout her career, Elizabeth has focused on health and wellness and has successfully developed community relationships to engage childhood cancer families with stories similar to hers. She was appointed to the Kentucky Pediatric Cancer Research Trust Fund by Governor Beshear in June 2021. She leads a team of members as the Awareness Committee Chair planning events, leading awareness campaigns, and advocating for all families impacted by cancer. Elizabeth also serves as a committee member for the Norton Patient and Family Advisory Council focusing on positively impacting the patient experience.
Background on the Kentucky Pediatric Cancer Research Trust Fund:
In 2015, the Kentucky Pediatric Cancer Research Trust Fund was established by Senate Bill 82. $2.5 million was allocated for each year of the biennium as part of the 2018 budget bill. The fund aims to make childhood cancer a state health priority by giving all Kentucky children access to cutting-edge cancer research, treatments with less toxicity, and encouraging psychosocial support with a targeted focus on the complicated issues of long-term survivorship.
Since Kentucky’s children are diagnosed with these tumors at a disproportionately higher rate than other states, prioritization of this research warrants continued expansion and Kentucky leadership has taken notice.
States have a critical role to play in overcoming the national disparity between adult and childhood cancer research, treatment, and support. YOU can join the movement to make meaningful change by engaging policy makers at the local and state level. Take action by clicking here.
Meet Adley, a B-Cell Acute Lymphoblastic Leukemia warrior.
Two weeks before Adley’s second birthday, Adley’s father noticed she was lethargic, pale and wanted to be constantly carried. Adley’s parents scheduled her two year appointment early so that they could get lab work done. The pediatrician called and advised Adley and her parents to make their way to Penn State Hershey Children’s Hospital where a room was waiting for them.
“No parent should ever have to hear that your child has cancer. This day was by far the hardest of them all. The information, multiple doctors and worry was the worst,” remembers Chad, Adley’s father.
Adley has undergone more than 10 spinal taps, two bone marrow biopsies and a port placement surgery. She continues to have spinal taps every three months until May 2024.
Currently, Adley is on long term maintenance with an end of treatment date set for May 16, 2024.
In 2023, Adley was selected to represent ACCO as an ambassador for the year and is found on ACCO’s GO GOLD® the RUN website.
In January, ACCO’s CEO, Ruth Hoffman, was nominated for M & T Bank’s “CEO You Should Know” Award and was selected in March! We are absolutely thrilled to share this with our community. Be sure to listen to any iHeart Radio station in the greater Washington D.C. area to hear the commercial and you can read more about her here.
What makes a good CEO? Is it dedication to the organization’s mission or the ability to inspire all who she employs? With that said, I humbly nominate Ruth I. Hoffman as the next CEO You should know.
Ruth was thrust into the childhood cancer world when her 7-year-old daughter was diagnosed with acute myelogenous leukemia (AML). Since 1999, Ruth has been CEO of the American Childhood Cancer Organization (ACCO) and is the immediate Past-President of Childhood Cancer International.
To say childhood cancer advocacy is a passion for Ruth is an understatement. She has spent more than thirty years raising awareness and advocating for cancer’s littlest patients.
“Ruth is focused on advancing childhood cancer initiatives around the world and leads a team of individuals dedicated to the mission so that one day there is a cure,” said Elizabeth Turner, Regional Advocacy Coordinator.
Even on the darkest days, ACCO’s resources help to bring smiles to the faces of cancer’s littlest patients. Ruth was hands on when it came to developing resources to help kids with cancer. She said, “I am proud of all of our comprehensive childhood cancer resources, born out of parents’ frustration with the lack of readily-available and easy-to-digest information. When parents write to let me know that their child related to our book “Marvelous Marleigh” or felt empowered to face cancer treatments after playing with ACCO’s Medical Play Kit, there is an inner peace that I feel knowing that I played a role in making a family’s journey a bit easier as a result of these important resources.”
ACCO’s roots are deeply planted in the advocacy community and with the expansion of the “What About Kids?®” initiative, ACCO has proven that states play a critical role in overcoming the national disparity between adult and childhood cancer research, treatment and support. As of 2023, the “What About Kids?®” research Initiative has raised more than $72.4 million for childhood cancer research under Ruth’s leadership.
“In order for someone to work as hard as Ruth does, while simultaneously and consistently radiating such warmth, that person needs to truly and wholly love what she does, who she does it with and what she does it for. She makes it look easy and when it all comes together, it’s downright inspiring,” said Samantha Clary, ACCO’s Resources Coordinator.
Ruth’s dedication to childhood cancer doesn’t just include the United States. She has helped ACCO cross borders and address the needs of kids with cancer and their families worldwide.
In the past six years, Ruth has helped develop a nutritional program in Addis Ababa, fund a nutrition program in Ethiopia, aid in getting supplies for Beirut children following the explosion and navigated support for kids with cancer and their families during the Ukrainian crisis.
Most recently, Ruth worked with the World Health Organization (WHO) to develop a survey to amplify the voices of pediatric and adult cancer survivors, caregivers and bereaved families. This survey aims to reach more than 100,000 responders who have been affected by cancer in some way.
Ruth’s unfailing love of what she does radiates throughout the organization and her dedication to the cause is awe inspiring.
Meet Jovaniel, a T Cell Lymphoblastic Lymphoma warrior.
“No parent should ever hear the words, ‘your child has cancer’” said Marjorie, after recalling the day her 3 year old was diagnosed with cancer. Jovaniel was an active and happy little boy until a chest x-ray revealed a tumor on his chest compressing his trachea. Once the diagnosis was revealed, he had a biopsy, port placement and started chemotherapy.
According to his mother, he is currently on treatment and doing well.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®
Meet Liam, an acute lymphoblastic leukemia warrior and 2023 ACCO Ambassador.
“It was a normal day and he was playing. Around 5:30 that night, we noticed pin prick sized bruising all over his body and he was getting nose bleeds. His doctor told us to take him to the emergency room,” said Jayme, Liam’s mother. “Liam’s cancer diagnosis was a complete surprise to us.”
On July 13, 2022, Liam was diagnosed with High Risk B-Cell Acute Lymphoblastic Leukemia. He was immediately transferred to Lurie Children’s in Chicago to start chemotherapy. Liam is currently on weekly chemotherapy and has undergone multiple bone marrow biopsies and a port placement surgery.
Since Liam’s cancer diagnosis, ‘we are able to live life in a more full way. One of our triumphs is watching him fight this cancer.”
Liam is currently one of ACCO’s Ambassadors and is raising awareness for childhood cancer as part of our GO GOLD® the RUN.
In 2021, Addalyn began vomiting accompanied by excruciating headaches, vision and balance issues. “For two weeks, we were in and out of the emergency room with so many doctor appointments. I was calling and pleading to get someone to take me seriously because there was something seriously wrong with my daughter.” After two weeks, “I begged them to give Addie an MRI and they finally did. The results: she had an inoperable and incurable brain tumor and was given six to nine months to live. I was in shock, disbelief and I’m heartbroken” said Renee, Addie’s mother.
Addalyn’s mom was finally given answers and a diagnosis, diffuse intrinsic pontine glioma (DIPG). “Devastated. Our world came crashing down. I began grieving the loss of my daughter because I knew she would never be the same.”
Addie’s mom entered Addalyn into a clinical trial. She had 30 sessions of radiation and then took an oral chemotherapy for six months. After the progression, she went through another clinical trial that consisted of three higher power radiation treatments. Addalyn bravely fought DIPG for 14 months and on April 3, 2022, Addie passed away.
Addalyn was a “brilliant artist. Her favorite thing was dogs. She had dreamed of one day becoming a vet and incorporating art into her job somehow.” According to her family, she never stopped smiling and told jokes as long as she could.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®
Q. Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
That weekend, I was hunting with my oldest son Brandon. While in the deer stand, my ex-wife Lisa sends me a picture of Damon’s arm (one of the twins). She said she was in line with him at HEB and when she hugged him to say ‘I Love You,’ she felt a lump. She took a picture and sent it to me. She inquired as to what it could be. I had no idea. 
How do you know what is right and what is wrong. When Damon was diagnosed, half the doctors said to amputate his arm right away, the other half said it wasn’t necessary and that Limb Salvage Surgery is just as viable.
The last year of his life was spent going from one trial medication to another. Never knowing if it would work or kill him. One trial, after one day on the drug sent him into a 3 day coma. Damon’s response after waking was “Guess that one doesn’t work!” LOL…. Another trial caused his skin to change color. I said he looked like a Minion. He knew the danger, but didn’t care. Because he also knew every failure would help point them in the right direction. How many adults would be willing to do the same?!
ACCO is proud to announce that our Regional Advocacy Coordinator, Elizabeth Turner, has been voted 
