Gold Ribbon Hero: Athena

Posted on March 17, 2024 by American Childhood Cancer Organization

Meet Athena, a 19-year-old Hodgkin’s Lymphoma warrior.

In the spring of Athena’s senior year in high school, she developed a low-grade fever for a week. Thinking nothing of it, her mother took her to the doctor and they did blood work. Doctors noticed that her pulse was a little off, so they sent her for an x-ray. “The first time cancer was mentioned, I was at her high school picking her up. The doctor said she needed another scan,” said Athena’s mother, Tina.

“They called while I was in the school office and they suspected Hodgkin’s Lymphoma. I immediately fell to the floor. My brain couldn’t process what they were telling me.”

At that moment, everything changed.

Athena’s initial diagnosis was stage 2B Hodgkin’s Lymphoma. “Everyone said, it was the ‘best’ cancer you could get if you were going to get cancer. Let me just say, that is a terrible thing to say.” Treatment started immediately and consisted of four rounds of chemotherapy. Athena underwent weeks in the hospital, the loss of her hair, multiple scans and long hours in the clinic. At that point, Athena was in remission. In November of 2023, she went in for a follow up x-ray where doctors saw something on her lung. Three more scans followed and doctors suspected a relapse had occurred.

“We had barely had a chance to breathe before this “best” cancer was back. Now it is considered very aggressive.” Since the cancer relapse, Athena will need fertility treatments, immunotherapy, a stem cell transplant and 30 days of consecutive radiation. “What was supposed to be a quick few months of treatment is now at least two years with the possibility of radiation causing other cancers or it [the treatment] not even working to begin with.”

Athena is actively undergoing treatment for her relapse and has taken part in ACCO’s 18Loop VR study. She uses VR and gaming to help during difficult treatments. She is also an incredibly talented artist and gets pleasure from the simplest things like finding a rock or getting a new stuffed animal.

Please help ACCO send well wishes to Athena and her family during this time.

Learn more about Hodgkin’s Lymphoma by clicking here.

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

Gold Ribbon Hero: Jackson

Posted on March 10, 2024 by American Childhood Cancer Organization

Meet Jackson, a 4-year-old acute lymphoblastic leukemia (ALL) warrior and 2024 ACCO Ambassador.

Jackson was just three years old when he received the diagnosis of ALL. It all started in September of 2023 when he had persistent fevers, pale skin and low energy. His mother, Meaghan, remembers that “he hardly wanted to play with his twin brother, Henry, so we knew something was wrong.” Jackson was tested one month before diagnosis and doctors said it was a virus. There was no evidence of leukemia at this point.

“Although the diagnosis explained why he wasn’t feeling well, there are no words to describe hearing that your child has cancer; our world was shattered. We were completely devastated to learn Jackson had leukemia. Our world changed forever,” said Meaghan.

The day of diagnosis brought tears and a lot of information for Jackson’s family to process. “They told us to pack a bag and head to the ER as soon as possible and to prepare for a long inpatient stay. Later that evening, we spoke to an oncologist who confirmed the results and reviewed the plan for the next two years.” Jackson spent an initial 32 days inpatient at Boston Children’s Hospital and endured numerous bone marrow biopsies, lumbar punctures, needle pokes, blood transfusions and chemotherapy treatments. By October, just a month after being diagnosed, he was in remission but will still have to complete two years of treatment to ensure his cancer doesn’t return.

Jackson became one of ACCO’s 2024 Ambassadors and has been helping create content to share with our community. He received our medical play kit and sent us some clips using it. Watch below as he listens to his heartbeat and interacts with the kit through play therapy.

The biggest obstacle that Jackson has to face is that he is away from twin brother, Henry while in the hospital. The pair had never been apart for more than a day and this was incredibly difficult and confusing for the both of them. They missed each other greatly.

Jackson loves cars, trucks and monster trucks! He loves watching Blaze, Bluey and Storybots. He loves riding his bike and walking his dog, Maddie.

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

Learn more about ALL here.

Gold Ribbon Hero: Devyn

Posted on February 25, 2024 by American Childhood Cancer Organization

Meet Devyn, a 2-year-old stage 4 neuroblastoma survivor.

Shortly after Devyn turned one, she had eye swelling, sweating and pupil changes. After testing, biopsies and appointments, the doctors determined that Devyn had stage 4 intermediate risk neuroblastoma. Doctors found a large tumor in her chest and wrapped in her spinal nerves that had metastasized to lymph nodes in the right side of her neck. “The day of Devyn’s biopsy, both the surgeon and oncologist told us that the mass in her neck looked cancerous. We held our breath until that horrible phone call two days later confirming it was indeed, neuroblastoma. My husband and I are both nurses and we were devastated. We committed our lives to caring for others and never imagined illness would strike in our own home. There was a lot of silence and tears that day,” said Joanna, Devyn’s mother.

Devyn underwent chemotherapy and scans to see if they tumors could be removed surgically. Following chemotherapy, the plan was to do surgery based on scans but we are happy to report that the scans came back clear of any disease. Devyn was declared in remission in the beginning of August and will start maintenance thereafter.

“Devyn is a funny, spunky little girl who loves dancing, singing, and being outdoors. Her favorite thing to do is stomp around and pretend to be a dinosaur.”

Devyn’s maintenance ends March 2024.

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

Learn more about neuroblastoma here.

Gold Ribbon Hero: Ariana

Posted on February 18, 2024 by American Childhood Cancer Organization

Meet Ariana, a 7-year-old acute lymphoblastic leukemia warrior.

In early 2021, Ariana stopped eating and started experiencing vomiting, weight loss, stomach pain, bruising and petechia. She was taken to two doctors and when her pediatrician wasn’t helping, Ariana’s pediatrician was switched. “They saw her right away and didn’t look at me like I was crazy. She did a CBC and sent us to the emergency room immediately” said Monica, Ariana’s mother.

“The [car] ride there was scary, so many thoughts. We felt like the world was over.”

Ariana was diagnosed with acute lymphoblastic leukemia on February 1, 2021. She underwent chemotherapy almost immediately, a gallbladder removal and port placement. According to her mother, “she was on tract and set to finish, but relapsed three months before the end of treatment.”

According to our last update, Ariana is full of energy, even on her bad days. “She continues to surprise all of us.”

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

Learn more about acute lymphoblastic leukemia diagnosis here.

Joel’s Story

Posted on February 14, 2024 by American Childhood Cancer Organization

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

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Prior to our son having cancer, I followed two college friends’ stories as both of their sons were fighting leukemia. It was helpful to know some of the terms and lingo and have a small idea of chemotherapy protocols.

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?
My son had complained of leg pains and we were trying to determine the cause. Growing pains? It was during his basketball season so we thought maybe a muscle strain. He tripped and was in great pain and his leg swelled up. We knew it was time for x-rays to see what was going on. The doctor saw a tumor in his femur and we had an appointment at Duke 3 days later. After more tests, imaging, and a biopsy, it was confirmed to be osteosarcoma.

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?
Chemotherapy was hard to see our son endure. He fell after his first treatment resulting in a painful femur fracture- making his journey more difficult. In true warrior fashion, he held tight to his faith in God and leaned on Him for strength during the tough times of chemo.

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?
Joining the cancer club was something we never even thought of- no parent does! Your life goes from routine and schedules with family time, meal planning and grocery shopping… to doctor appointments, lab checks, watching for fevers, keeping the puke bucket handy, and praying that your kid doesn’t catch the common cold now that his immune system is near zero! Our son’s journey didn’t follow the usual script they told us about at diagnosis.

He faced many challenges; an angulated fracture from a fall, that was above the tumor. This led to weeks of immobility in bed with a pain pump resulting in a blood clot under the tumor area.

After the limb salvage surgery, his recovery had several complications to fight through. Our family was separated because of cancer and then because of COVID. Our girls were never allowed in the hospital and for several months only one parent was allowed in at a time.

Movies depict scenes of family visiting, playrooms, art, and pet therapy. That was not the case for us!

Recovery after chemotherapy ended was another transition to journey through together. Our family was surrounded by friends near and far, uplifting our son in prayer. Our faith carried us through the darkness times we faced in the battle against osteosarcoma. After treatment, we are healing both physically and mentally, adjusting to life after cancer and chemo. We have been able to share our story and encourage others in the club.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
Currently, our son is 6 months NED!!!! His leg has not healed and he has limited weight bearing on that leg. He will face another surgery soon to help the healing process. We don’t know what his future will look like, but hold onto to our faith in God to get us through post treatment just as He did during treatment.

Update: January 2024 – Joel had surgery on his left leg (non cancer leg) to stop the growth plates. The right leg is growing at a slower rate so when it’s time to do the limb lengthening process (18-24 months) the limb difference won’t be as much.

Ashton’s Story

Posted on February 14, 2024 by American Childhood Cancer Organization

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.

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.

Phillip’s Story

Posted on February 14, 2024 by American Childhood Cancer Organization

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.

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.

Pumpkins & Possibilities

Posted on October 18, 2023 by American Childhood Cancer Organization

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

ACCO Expands into Four Additional States

Posted on October 5, 2023 by American Childhood Cancer Organization

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.

A Proclamation on National Childhood Cancer Awareness Month, 2023

Posted on September 6, 2023 by American Childhood Cancer Organization

During National Childhood Cancer Awareness Month, we honor the extraordinary courage, strength, and optimism of the tens of thousands of families now fighting the leading cause of death by disease for children: cancer. We remember the bright lives cut short and recommit to ending cancer as we know it, for all those we have lost and all those we can save.

Cancer is brutal no matter whom it strikes, but it is particularly cruel when it affects the youngest among us. When they should be learning in school and playing outside, children with cancer are oftentimes fighting for their lives in hospitals instead. A cancer diagnosis takes a tremendous toll on their family, friends, and community. Caregivers are often left struggling to deal with a flood of medical information, to make sense of treatment options, and to navigate mounting medical bills all while trying to stay hopeful and steal moments of joy with their loved ones.

Over the past 50 years, cancer researchers have made major advances treating some types of pediatric cancer — but we have much more to do. Last year, the First Lady and I reignited the Cancer Moonshot, setting an ambitious new goal to cut America’s overall cancer death rate by at least half over the next 25 years, turn more cancers from death sentences into treatable diseases, and improve support for patients and families. As a first step, I worked with the Congress to establish the Advanced Research Projects Agency for Health, securing $2.5 billion in bipartisan funding to develop breakthroughs in preventing, diagnosing, and treating cancer and other deadly diseases and pioneering partnerships to get those breakthroughs out to patients and clinics across the Nation. We’re also making lifesaving health care more affordable for millions of American families, expanding health care coverage for families through Medicaid and the Affordable Care Act, and helping millions of families save $800 per year on health insurance premiums.

At the same time, the National Cancer Institute has developed a National Cancer Plan to speed up the development of effective cancer treatments, including those for children. The Institute’s Childhood Cancer Data Initiative is also providing free molecular testing of tumors, further helping my Administration implement the RACE for Children Act, to quickly identify and approve precision pediatric cancer drugs. Earlier this year, I was also proud to sign the Childhood Cancer STAR Reauthorization Act, boosting funding for childhood cancer research, including research into late effects of childhood cancer treatment and new ways to care for survivors. And as a part of the Cancer Moonshot, the National Cancer Institute launched the Childhood Cancer–Data Integration for Research, Education, Care, and Clinical Trials, a first-of-its-kind, public-private partnership that will help children, adolescents, and young adults with cancer and their families reach out for support, connect to excellent care, and obtain opportunities to participate in research.

During National Childhood Cancer Awareness Month, we honor the absolute courage of the tens of thousands of children who fight cancer every day and all of the loved ones who support them. And we recognize the medical professionals, researchers, companies, philanthropies, and academic institutions who search tirelessly for early detection methods, better and safer treatments and even cures. Together, we will create a cancer-free future for our kids.

NOW, THEREFORE, I, JOSEPH R. BIDEN JR., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2023 as National Childhood Cancer Awareness Month. I encourage citizens, government agencies, private businesses, nonprofit organizations, the media, and other interested groups to increase awareness of what Americans can do to support the fight against childhood cancer. I encourage anyone experiencing uncertainty around risk factors or treatment options, or looking for other opportunities for support to connect with a trained specialist at 1-800-4-CANCER or visit www.cancer.gov.

IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand twenty-three, and of the Independence of the United States of America the two hundred and forty-eighth.

JOSEPH R. BIDEN JR.