Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Ashton’s journey through medulloblastoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, when I was in second grade at a small catholic school in Indiana, my classmate Mikey had brain cancer. I believe his fight lasted around two years and then he passed away. I still remember being so sad and carrying at the wake and his funeral. Although I did not understand cancer, or what was going on it was scary.

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?
It started like any other day. She was getting ready for her second day of school. Then, when she came downstairs, she told me her stomach hurt, then her head hurt, and then she ran and threw up in a bowl. It was then I called my husband to come home and that she needed to go to the ER at Cincinnati Children’s immediately.

I’d had a feeling that something was wrong for a few weeks.

It began when Ashton started coming to me and telling me when she would get off the couch she felt dizzy. I told her “that happens to mommy too, it’s okay.” Then she started getting a lot of headaches. I thought nothing of them until I finally asked her where they hurt. They had become so frequent it was no longer normal. That was when she pointed to the back of her head, right above her spine and told me “here.” I took her to the ER where we were sent to urgent care and my concerns were dismissed as overreacting.

On that second day of school, when she should have been playing and learning with her friends, we found out she had a large, aggressive tumor growing in her cerebellum. And as every cancer story I’ve read goes, that was the moment our lives changed forever.

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?
We begin radiation on 9/25 for 6 weeks, an ovarian tissue preservation surgery, and chemo therapy for a year.

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?
For now though, being thrown into this world is every parent’s worst nightmare.

It’s a club no one wants to join.

It’s heartwrenching and there are no words that can make things better, take away Ashton’s pain, or fast forward time to know how everything will turn out. In Ashton’s short journey there have been days that are terrible, good, and great.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?

{From her facebook page}
Every parent understands that innate, supernatural yearning for your kids to be happy and to be able to protect them from whatever it is that could harm, hurt, or damage them. You know, the inexplicable bond that makes it so you know that you will always do whatever it takes for them.

And even though I try and hide from my own thoughts, and I spend very little time on social media anymore, I see pictures of her friends, and wonder, would Ashton be in the picture, if she didn’t have cancer?

And I truly think, yes, yes, she would probably be.

And then the tears come. Every. Single. Day.

Because within a second, that was taken from her. From us.

From even one round of chemo, Ashton’s blood counts have gotten so low, that we are anticipating a blood transfusion any day before her second round of chemo even begins mid-February.

That means more isolation, more hearing I am “bored” and more trying to create the best memories we can from within our home.

It means more time to forget the things she’s learned, the life she used to have, and memories that she doesn’t remember anymore.

She remembers so little, that even when I show pictures or things in real life she has no recollection at all.

It’s so hard.

Read more stories about kids with cancer, this ICCD

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Phillip’s journey through hodgkin’s lymphoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, my friends daughter battled leukemia before my son was diagnosed

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?
In December 2018 my kids came home from winter break with colds. My daughter ended up with pneumonia and I figured Phillip was also dealing with pneumonia until the urgent care doctor told me to take him for a CT scan. The radiologist saw something on his chest X-ray and wanted us to follow up. His symptoms were cough, fever, and occasional night sweats which I assumed was his fever breaking. After the CT scan, the doctor told me to go home and they would call me with results… I refused and said I want to know now what is going on with my son.

The doctor left and paged a doctor and 20 minutes later came into our room and said “the oncologist wants to admit Phillip for further testing.” I knew then he had cancer. I just didn’t know what kind.

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?
Phillip was put into a clinical trial. Phillip received Brentuximab, doxorubicin, vincristine, etoposide, antibiotics and tons of prednisone. On his third inpatient round of chemo he had an anaphylactic reaction to etoposide and was switched to etopophas.

It was the scariest thing I ever saw.

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?
There were so many obstacles we faced.

At first, my husband and I were at the hospital all the time.

Once we knew what type of cancer Phillip had my husband seemed to pull away, he was very emotional seeing our son go through all of this and he stopped coming to see Phillip as often while inpatient.

I felt totally alone. I felt like I was left to tackle this without him. My daughter was also affected we put her on an independent study for 6 weeks of her 6th grade year. She was bounced around to two of our family members houses because of the time spent in the hospital consumed us. Phillip’s first hospitalization was 23 days.

Every round of chemo we knew Phillip’s immune system was more fragile so when we were home we did not go anywhere, this journey isolated us from people we love because we didn’t want to risk him becoming ill.

Watching my son go through all of this changed my perspective a lot, I cherish everyday with my kids, I take more pictures, I stopped worrying about saving money and now feel like we need to enjoy ourselves.

I feel like I don’t want to miss anything with my kid’s, so I don’t work as much as I did before we struggle a lot financially but I can’t imagine spending less time with them. Anytime Phillip gets a cold symptoms I start to panic. I developed PTSD and horrible anxiety.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
Phillip is celebrating two years of remission currently. Post chemo Phillip has suffered from severe neuropathy, he’s always having pain in his extremities. Phillip also complains of his “heart” hurting.

Every decision we made is not without a possibility of something bad happening down the line.

I don’t handle the unknowns well. I often wonder did I make the right decisions, what if we didn’t do the radiation would he be having these symptoms? I’m constantly in fight or fight mode. I don’t know how to stop these feelings. I do speak to a therapist and have since his treatment started, I feel like that has helped me cope.

Read more stories about kids with cancer, this ICCD.

How can you make this spooky season extra sweet?

Celebrate fall this year with all treats and no tricks! When you fundraise for ACCO, you bring hope and comfort to childhood cancer families and you support the advancement of childhood cancer medicine and treatment.

Pjammin® Spooktacular
Wear your coziest pajamas and spread awareness with seasonal goodies, snacks, & crafts! Why not spook up your pajama party with a black cat onesie or bat-print pjs while you share pumpkin cookies? We’ve curated a spooky playlist for your bash.
PLAYLIST

Pjammin® Dance Glow Party
Don’t just stand in solidarity – crack a glow stick & get the dance party started! ACCO provides free glow sticks and glow-in-the-dark bracelets for fundraising events just like yours! Looking for some glow party jams? Look no further!
PLAYLIST

Ghouls & Goblins GO GOLD®
Kick off the giving season with spirit! Have a spooky costume contest of ghouls and goblins with one rule: you must wear something GOLD! Dress up your party with a seasonal playlist!
PLAYLIST

Hope Harvest Go Gold®-en Festival
Celebrate beauty & bounty with music, pumpkins, cider, and all things golden! Whether you’re holding a classy soiree or a cozy little get-together, there’s plenty of ways to celebrate pumpkin spice season! We hope this playlist inspires you!
PLAYLIST

Want to get started?

Click on one of the logos below to learn more and sign up!
Questions? Email Samantha at sclary@acco.org

Through ACCO’s leadership, our What About Kids State Research Initiative made significant strides in expanding state-based legislation during September Childhood Cancer Awareness Month! We are thrilled to announce that our ongoing work resulted in four more states partnering with ACCO to expand appropriations for childhood cancer research. 

New York
Assemblywoman Linda Rosenthal championed Bill A1302, paving the way for taxpayers to contribute to the Cure Childhood Cancer Fund.

Michigan
Representative Amos O’Neal authored and introduced HG5062, establishing a dedicated trust fund that will enable the state to invest in childhood cancer research, driving innovation and progress.

Massachusetts
Senator Patrick O’Connor and Representative Jessica Giannino introduced SD 2773/HD 4592. This legislation aims to create a trust fund dedicated to funding research projects focused on the prevention, treatments, and cures for childhood cancer.

California
Senator Susan Robio’s leadership led to the passing of Senate Resolution 71, officially designating September 2023 as Childhood Cancer Awareness Month, marking a critical step in raising awareness and gathering support for childhood cancer in the state of California.

These legislative successes underscore ACCO’s leadership in childhood cancer advocacy since 1970, and our commitment to combating childhood cancer by reducing the disparity between state-based adult and childhood cancer research funding.

…because kids can’t fight cancer alone!®

Please register here if you live in MA, MI, or NY and are willing to join ACCO in working towards the passing of the above legislation in the four states listed above.

The American Childhood Cancer Organization would like to thank our generous corporate partners who helped further our mission in 2023! Together we continued to “make childhood cancer a national child health priority through shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors, and their families.” Through these partnerships, ACCO has been able to impact the lives of tens of thousands of children with cancer on active treatment and their families across the U.S.

From corporate donations earmarked to specific ACCO programs, donating a percentage of sales and childhood cancer resources, to offering customers the opportunity to give, these corporations have strengthened their partnerships with ACCO during this unprecedented year.

Amazon has partnered with the American Childhood Cancer Organization for the past 6 years to expand much-needed childhood cancer research. Amazon’s support of ACCO’s “What About Kids® Research Initiative has resulted in ACCO securing more than $75 million in appropriations at the state level for childhood cancer research!

Amazon GOES GOLD® has led to their largest community engagement with employees around the world wearing their pajamas to work as a symbol of solidarity with children fighting cancer in their Pjs! Together, Amazon has raised awareness of childhood cancer across the U.S. and around the world through ACCO’s signature PJammin® events! CCO is working hard to train grassroots advocates, update state cancer plans to include childhood cancer language and objectives, and elevate state funding for childhood cancer in order to close the gap between budget allocations that go towards adult and childhood cancer research.

La Roche Posay, one of L’Oreal’s brands and recognized worldwide as the number one rated dermocosmetic product line, partnered with ACCO to enhance the quality of life of children with cancer. Based upon the design and impact of the pediatric pain scale, La Roche Posay + ACCO designed an Emoji scale tool to help children with cancer express their feelings. The toolkit allows the child, his/her family and the medical team explore the emotions associated with the treatment regimen and beyond. More than 5,000 children with cancer across the U.S. have received a free emoji toolkit as a result of the corporate partnership.

Since 2008, Jel Sert’s partnership with ACCO has helped children with cancer manage the physical and emotional pain associated with toxic cancer treatments. Jel Sert + ACCO donates freezers stocked with a continuous supply of Fla-Vor-Ice freezer pops to kids with cancer in clinics and hospitals nationwide to assist with maintaining fluids during times of chemo and radiation induced mouth sores. Jel Sert’s employees raise awareness and funds through an annual corporate PJammin event. Additionally, Jel Sert’s generous funding to ACCO provides tens of thousands of free educational resources to children with cancer and their families across the country. Jel Sert’s CEO’s personal commitment provides funding for nutritional support for children fighting cancer in ACCO-sponsored countries in Africa.

Servier Pharmaceuticals provides funding support  to continue to provide these essential educational resources without charge to children and adolescents with cancer. Servier also recognized the global childhood cancer survival disparity. As the producer of Peg-asparaginase, an essential chemotherapy required in the successful treatment of numerous types of childhood cancer, Servier addressed the medical needs of children with cancer in several low-middle income countries (LMICs). Together. Servier + ACCO provided nutritional support to children with cancer in Ethiopia, Uganda and Myanmar, recognizing that malnourished children with cancer have a significantly poorer cure rate. And in partnership with ACCO, Servier responded to the shortage of asparaginase in Beirut after the deadly explosion that took place there on August 4th.

Texas Materials Group, Inc reached out to ACCO in the beginning of 2023 to set up a PJammin® event to honor the memory of an employee that had recently passed away. In a matter of hours, the Texas-region employees had raised more than $12,000!

Texas Materials Group, Inc vowed to match donations and was successful in raising $26K!

The group asked ACCO where their money was needed the most and decided to allocate their funds to the medical play kit resource that ACCO provides to kids, free of charge. Following this extremely successful event, organizers at Texas Materials Group, Inc challenged their Louisiana branch, Barriere Construction to host their own PJammin® event!

Because of their successful event, ACO was able to purchase final components for our medical play kit and host a volunteer day at our headquarters in Maryland. Two employees from Texas Materials Group, Inc, flew to Maryland and attended our volunteer day where they helped make more than 1000 kits!

CRH is the leading provider of building materials and has market leadership in North America and Europe. As the main corporation, they employ branches throughout the United States including Texas Materials Group, Inc and Barriere Construction.

18Loop and TRIPP have joined forces with ACCO to launch the Virtual Comfort research program for children with cancer. In existing studies, Virtual Reality (VR) headsets have shown to reduce cognitive pain by 44 percent, emotional pain by 32 percent, and sensory pain by 27 percent. In a joint experimental intervention research study, 18Loop + ACCO have distributed more than 50 Oculus headsets to children on active cancer treatment.

At Amped Electric Games, we dare to dream big and inspire change through the electrifying world of personal electric vehicles.Driven by our unwavering values of abundance, community, giving, growth, leadership, inclusivity, and safety, we are united in our mission to elevate the sport, bring people together, and make a positive impact on the world.

Since 2022, Amped Electric Games has raised awareness and funds for kids with cancer at their races across the United States. Their first event promised big jumps, high flying thrills and an unparalleled time.  With more than $7,500 raised, Amped is committed to helping raise funds one race at a time.

Kendra Scott creates jewelry for every look and occasion, from simple & classic to bright & bold. Jewelry that makes you feel like your most confident self. Doing good has been built into Kendra Scott’s business model from the very beginning and they are committed to hosting Give Back events all over the United States. ACCO has worked with Kendra Scott for years and in 2023, they plan on expanding their program with us to include California, Pennsylvania, New York, New Hampshire, Massachusetts and Florida. From hosting color bar parties to showcasing ACCO’s curated collection of jewelry during a GO GOLD® event, ACCO and Kendra Scott events are here to stay.

Interested in becoming an ACCO corporate partner? Click here to learn more. 

Together, we can make a difference.

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

Not only is a PJammin® or GO GOLD® event fun, it also raises awareness for childhood cancer! Events can be held anywhere – from schools to the workplace, in person or virtual – anyone can join in. Become part of a movement and give back to kids with cancer and their families.

How do I get started?

• Pick a fundraiser: Choose either a PJammin® or GO GOLD® event! Not sure which to choose? That’s okay! Email Samantha at sclary@acco.org to learn more.

• Spread the word: Let friends and family know you are raising awareness for childhood cancer in the workplace, school or in your community! Share via email, social media, word of mouth, however you’d like! ACCO can help you by providing a flyer with custom QR codes for donors to donate!

• Get Ready: You’ve got the swag, flyer and custom donation page, now get out there and fundraise! Need something else, let us know!

The most that anyone could hope to do for a child with cancer is to make their cancer go away. However, defeating cancer can take years or a lifetime, and too many children lose the battle. In the time between a first diagnosis and the first cancer-free day — if that day ever comes — these children are facing the most intense challenge of their lives. At ACCO, we support children on the front lines in the fight for their lives. They all deserve a cure.

Until that day comes, they will have our care.

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.

By those standards, he was one STRONG kid!!!!

Follow Brian on Twitter or Instagram @happy2badad or on Facebook at @BBilleck

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.