Gold Ribbon Hero: Johnathan M.

Posted on June 30, 2024 by American Childhood Cancer Organization

Meet Johnathan, a Ewing’s Sarcoma survivor!

Johnathan was an active kid who participated in tennis and basketball who started to suffer from a sore leg. His parents took him to the doctors office for scans, but they refused to check it out. A few months passed and Johnathan collapsed in gym class. He was taken to the emergency room where bloodwork was taken. A local osteopath looked at Johnathan’s labs andordered an MRI immediately.

“We were in disbelief. We were angry that our pediatricians wouldn’t listen to us. They kept telling us it was a pulled muscle or growing pains,” remembers Stephanie, Johnathan’s mother.

Once the MRI was completed, Johnathan’s family and medical team arranged a zoom call to go over the results. Images revealed that the tumor was located in his pelvis and mushrooming out of his hip bone. Doctors were sure it was some sort of sarcoma, just not sure what type. A few days later, Johnathan was taken to Boston Children’s to have a PET scan performed.

“Johnathan’s diagnosis came when the world was shutting down due to Covid. Only one parent was allowed in the hospital at a time. Between his Dad and I, we would take turns. If dealing with the after effects of chemo wasn’t enough, he developed a blood clot in his lungs due to Covid.”

Johnathan spent eight months going through treatment and officially rang the bell in August of 2022.

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

Gold Ribbon Hero: Khloé

Posted on June 23, 2024 by American Childhood Cancer Organization

Meet Khloé, a stage 4 Sacrococcygeal Teratoma germ cell tumor hero.

had the stomach flu for two weeks and was complaining of stomach pain. The third time she visited the pediatrician, her mother, Kelly, urged them to get blood tests because she felt that there was more going on. Khloé’s doctor called to let her know that Khloé’s blood counts were off and that she needed to get to Children’s Hospital immediately. Initial ultrasounds didn’t show anything, so a second doctor came in and found a massive tumor.

“Once my daughter had her ultrasound and doctor informed us of tumor we were in a state of shock and disbelief! More doctors came in to talk with us as I had many questions, but the number one question was Is my daughter going to die? Is the tumor cancerous,” remembers Kelly.

Khloé’s treatment started immediately after the tumor removal from her abdomen and she underwent two years and eight months of treatment. The tumor ruptured which led to surgeons removing her left ovary and cancer cells from her uterus. In the span of one year, Khloé relapsed three times. She underwent Hyperthermic Intraperitoneal Chemotherapy (HIPEC )Surgery in hopes of applying chemotherapy directly inside her abdomen but it did not work. After an excruciating 12-hour surgery, Khloé spent three days in the intensive care unit and several weeks after in patient. At that point, the cancer had metastasized to Khloé’s lungs and liver.

Khloé had two autogolous stem cell transplants along with chemotherapy to eliminate the cancer and put her back into remission. Unfortunately this was the last option for Khloé and her family and she was given six months to live. Her family was determined to help her live as long as they could, so they explored other options including holistic medicine.

“Our beloved and precious Khloé fought for as long as she could, but lost her battle with cancer on August 30, 2022, four months after her 11th birthday.”

Learn more about Khloé’s tumor here.

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

Gold Ribbon Hero: Ben C.

Posted on June 16, 2024 by American Childhood Cancer Organization

Meet Ben, a 9-year-old astrocytoma warrior!

At 15 months, Ben started to have seizures which prompted doctors to take a closer look. When he was just 16 months old, Ben had surgery to remove 75% of the tumor from his temporal lobe. “It felt surreal, like a bad nightmare we couldn’t wake up from. There really are no words to describe the pain – just like you don’t know love until your child is born; same with pain. You don’t know pain until your child has cancer” remembers Stephanie, Ben’s mother.

When Ben was five years old, his cancer began growing again and diffused with his brain stem. He underwent another surgery that was meant to relieve the pressure and during the procedure, he had a stroke leaving him with right side paralysis and partial blindness. Doctors were able to remove 90% of the tumor but the cystic component of the tumor continued to grow which meant that Ben needed to start chemotherapy.

Ben currently attends five different therapies a week including chiropractic appointments and acupuncture to help with side effects. He’s had to retrain his brain to remember he has a right side and how to use it. Ben still cannot move his write or wiggle his fingers which prevents him from doing normal kid things like playing at a park or climbing trees.

ACCO spoke to Stephanie, Ben’s mother, in late April and gave the latest update on Ben: “Ben’s last scan showed almost no tumor and we have moved to scans every 6 months. This is a huge victory with brain cancer. He’s not been on chemo for 1 year.”

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

Steven ‘the Cancer Crusher’ Cooks with Gordon Ramsay!

Posted on June 12, 2024 by American Childhood Cancer Organization

Four years ago, the ACCO staff reached out to Gordon Ramsay to extend heartfelt birthday wishes to Steven, fondly known as the ‘Cancer Crusher.’ Prompted by this email, Ramsay not only sent Steven a personal video, but also issued a playful challenge: a ‘chicken-parmesan’ cook-off. Steven eagerly anticipated the chance to meet and cook alongside his idol.

However, various hurdles, including the pandemic and scheduling conflicts, derailed their plans for four long years. Finally, this past weekend marks the long-awaited rendezvous between Steven and Gordon, an event ACCO wouldn’t miss for anything.

Contrary to the original plan of meeting in Las Vegas, the meeting took place at Foxwoods in Connecticut, accompanied by Steven’s mother and the ACCO staff. The itinerary included: a behind-the-scenes tour of the ‘back of house’ behind ‘Hell’s Kitchen,’ an exclusive meet-and-greet with Gordon Ramsay, attend a ‘Hell’s Kitchen’ taping during dinner service, and, of course, the chicken parmesan cook-off.

During the pandemic, Steven launched “Chemo Bites,” a video series featuring his cooking lessons and recipes. This endeavor, which resembled a genuine television show, gained popularity and caught Gordon Ramsay’s attention. Through his cooking, Steven fostered community spirit, and the series remains available on the ACCO website.

In 2020, Steven was hailed as a Gold Ribbon Hero and shared his battle with acute lymphoblastic leukemia (ALL). His journey began with frequent bruising and nosebleeds, leading to an ALL diagnosis on his 10th birthday. “I felt my gut instinct was right,” recalled Wendy, Steven’s mother.

Despite facing near-death experiences during treatment, Steven emerged resilient. He now channels his energy into advocacy, hosting blood drives, fundraising, and sharing his story at various events. His mantra of perseverance and positivity continues to inspire others.

Watch below as Steven battles Chef Gordon Ramsay in an epic Chicken Parmesan Battle!

Gold Ribbon Hero: Zoey

Posted on June 9, 2024 by American Childhood Cancer Organization

Meet Zoey, an 8-year-old ganglioneuroma survivor!

Zoey’s tumor was found quite by accident. Initially, she had gone to the doctor for a bad cough which led to an x-ray. Zoey was misdiagnosed with pneumonia and after two weeks, her doctor took another look. At that point, the tumor was found and Zoey spent 9 days in the hospital. Surgery took 8 hours to complete and doctors removed 80% of the tumor. The remaining 20% was left in her spine and too close for removal.

“When Zoey was diagnosed, it was a complete shock as she was a healthy 3-year-old” remembers Susan, Zoey’s mom.

Zoey’s tumor is located in her spine and was too close for removal so the team tried two rounds of chemotherapy first. After the tumor didn’t respond, the team continued to keep an eye on it through scans every six months. During her treatment, she encountered many doctors who were quick to start one treatment rather than taking time to assess all avenues of treatment. Her parents decided to take her to specialty doctors instead.

“She handled everything with a smile and took to learning about her cancer and treatment. She has become knowledgeable about what she’s going through and loves to play doctor with her medical play kit she received from ACCO.”

ACCO spoke to Zoey’s mother, Susan in late April 2024 who provided us with this update: “Zoey’s treatment is going good. She had surgery and chemo back in 2020 and now we monitor it. 20% is left but it is in her spine so they are not touching that. We see a neurologist every 6 months and she has tests ran. So far, so good. Her tumor does press on her spinal cord and the free flowing fluid but you would not know it. She is a happy, adventure-seeking 8-year-old how loves participating in gymnastics, trampoline and swimming.”

Gold Ribbon Hero: Justin P.

Posted on June 2, 2024 by American Childhood Cancer Organization

Meet Justin, a stage 3 acute lymphoblastic leukemia hero.

One week before Justin’s 12th birthday, Justin was diagnosed with cancer. He had complained of chest pains and was taken to urgent care. After a chest x-ray was performed, the family was told to go to Stanford Children’s Hospital for additional testing.

He relapsed in 2017 but still continued with his chemotherapy treatments. A bone marrow transplant was no longer available. The last few months of Justin’s life were ‘extremely challenging’ because of long-term side effects. He suffered with mobility issues and loss of kidney function.

His mother fondly remembers Justin by saying, “warriors are not born; they are forged through adversity and hardship. Justin’s name means ‘righteous, just, fair. Since the day he was diagnosed, he lived up to his name. He was loved by all he came in contact with. He was the life of any party and loved basketball.

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

Gold Ribbon Hero: Hailey R.

Posted on May 26, 2024 by American Childhood Cancer Organization

Meet Hailey, a diffuse intrinsic pontine glioma hero.

When Hailey began experiencing headaches and loss of bodily control, her parents were quick to take notice. Initially, doctors suspected drug involvement but soon discovered she was battling DIPG. Tragically, Hailey succumbed to DIPG shortly thereafter.

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

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Gold Ribbon Hero: Maddi

Posted on May 19, 2024 by American Childhood Cancer Organization

Meet Maddi, an astrocytoma warrior.

For one year, Maddi suffered from chronic headaches that were lessened with allergy medications. Maddi delayed her speech until she was well over two years old. She began complaining of headaches at three years old and at four, when she began Pre-K, her headaches became more frequent and intense. Doctors suspected her headaches were because of poor eyesight so a strong prescription was given to her parents. At five years old, Maddi was in kindergarten and complaining of excruciating headaches.

The cause of Maddi’s migraines was pilocytic astrocytoma hydrocephalus. She was put on chemotherapy immediately and despite 19 months of treatment, Maddi’s tumors did not respond. She was accepted into a study that would help shrink the tumor by 37%.

As a side effect of her treatments, Maddi has gained weight at a rapid pace which caused severe obstructive sleep apnea with oxygen needed. When this happened, Maddi received an emergency tonsillectomy and adenoidal surgery to correct the obstructions and now she is oxygen-free.

As of April 2024, Maddi’s tumor has shrunk and she is enjoying being a kid. She enjoys swimming and making new friends.

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

Gold Ribbon Hero: Madeline

Posted on May 12, 2024 by American Childhood Cancer Organization

Meet Madeline, a forever 14-year-old DIPG hero.

When morning vomiting, loss of balance and double vision were affecting Madeline’s daily life, her parents took notice. She was able to get an appointment with a neurologist and after ten minutes, the doctor told her parents that she needed to be taken in for an MRI immediately. After six hours in the emergency room, the devastating results were shared, a Diffuse Intrinsic Pontine Glioma (DIPG) diagnosis. Madeline was then rushed to Children’s National Hospital for further evaluation.

Madeline went through two rounds of radiation treatment and two separate clinical trials including several high-dose dexamethasone treatments.

The following excerpt was taken from Madeline’s obituary. “Even though the last 13 months of Madeline’s life were very difficult, her bright light never died, and she stayed positive throughout her journey. After her November 2021 DIPG diagnosis, she underwent brain surgery for a tumor biopsy, received two separate rounds of radiation, and participated in two clinical trials. Ultimately, these efforts were unsuccessful in saving her precious life, and her neurological symptoms worsened shortly before Thanksgiving.

Despite gradually losing the ability to walk, talk, and write, Madeline remained hopeful and faithful and continued to do many of the things she loved. She was an avid baker of cookies and banana bread, and she was also an excellent artist. In fact, she continued to draw, knit scarves and bags, and make beaded necklaces and bracelets until her hands no longer worked. Madeline loved playing cello, but unfortunately, she could not do that when she started the 2022-2023 school year. However, she began high school via homebound, receiving instruction remotely through Zoom, and she maintained straight A’s.”

Learn more about DIPG by clicking here.

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

Gold Ribbon Hero: Trey L

Posted on May 5, 2024 by American Childhood Cancer Organization

Meet Trey, an Atypical Teratoid Rhabdoid Tumor (ATRT) survivor!

“Trey attended his first day of soccer practice at daycare and came home with no appetite. He was completely exhausted. The look in his eyes is one I’ll never forget, it was like he wasn’t there. We were in complete denial” remembers Trey’s mother, Ebony.

At two and a half years old, Trey walked into the emergency room able to recite his colors, ABC’s, and body parts. He was potty trained and did all of this with a tumor that covered the majority of his head. On March 7, 2023, Trey was rushed into emergency surgery to resect his brain tumor of which his surgeon had never seen in his 20 years of practice. Trey endured two brain resection surgeries, a stroke, seizure, chemotherapy, platelet and blood transfusions, stem cell treatments and proton radiation. He spent almost nine months inpatient.

As of April 2024, Trey’s six-month post-treatment MRI showed no evidence of disease (NED) on his brain and spine!

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

Learn more about brain cancer here.