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.”
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.”
Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady got to meet Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since.
This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York.
Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.”
“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome.
Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.
After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years.
Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/
Please help ACCO send well wishes to Mady and her family by commenting on this post!
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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.
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.
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!
Matthew Donald: a baby named for two amazing people in his parents’ lives, both of whom were taken by cancer. And Matthew Donald—“Miracle Matthew”, as his parents and doctors like to call him—is himself a true childhood cancer warrior, having gone through more in four short years than most people see in a lifetime. But Matthew was born a fighter into a family of fighters, showing us through it all the true meaning of courage, spirit, and joy.
Matthew’s cancer journey began even before he was born. Two weeks before his birth, his parents learned that he had fluid in his brain. The tumor was discovered at just four days old, during a surgical procedure to drain the fluid. Doctors removed a portion of the tumor, as well as the fluid, but the diagnosis was stark: Matthew had an aggressive type of brain cancer, a grade 4 neuronal glioma, consuming more than 40% of his brain, most of the right side. Matthew’s parents faced a grim choice: take Matthew home with a hospice team and make him as comfortable as possible or immediately schedule aggressive treatment.
Neuronal glioma is an extremely rare type of brain cancer, most often diagnosed in adults and appearing in less than five births per year in the United States. Gliomas grow in the connective tissue of the brain that holds the neurons in place and enables them to function. Neuronal glioma is usually fatal in children; in fact, no child has survived more than five or six years after being born with this type of brain cancer. According to the National Brain Tumor Society, not a single drug has been developed and approved specifically for the treatment of malignant pediatric brain tumors. The outlook for Matthew was not good.
Matthew’s parents, however, refused to give up on him. They chose to pursue chemotherapy and surgery to fight the tumor spreading through Matthew’s brain. After the first surgery, Matthew had five additional surgeries and six rounds of chemotherapy. He spent the first 13 months of his life in the hospital. And because of the damage to his brain from the toxic treatment protocols, the surgeries, and the tumor itself, doctors warned Matthew’s parents that even if he lived, he may never walk, talk, hear, or “live a normal life”.
Yet Matthew showed his doctors and his parents that miracles do happen! His tumor responded to the aggressive treatment, and in late 2015, Matthew “graduated” into a survivorship program at the hospital, where he will continue to receive medical treatment and frequent monitoring and testing.
Today, Matthew embraces his life with the same courage, spirit, and determination with which he fought cancer. Now 4½ years old, Matthew has begun walking independently; not bad, as his mother notes, for a child who spent the first 18 months of his life confined to bed! He can say a handful of words and continues to build strength in his left side, which was left weakened by the tumor consuming the right hemisphere of his brain. He goes to school where he receives specialized therapy, and sees specialists outside of school three times per week for speech, occupational, and physical therapy.
Still, the tumor and the aggressive treatment have had significant side effects for which Matthew receives constant medical care. He suffers from seizures, a common side effect of any brain surgery, and will likely be on anti-seizure medication for the rest of his life. His hearing has been impacted and he wears hearing aids in both ears. The veins in both of his arms have been severely damaged from so many IV lines and blood tests, making even routine tests and scans problematic. Still, as Matthew’s mother notes, “his happy spirit has never changed!”
Thank you, Miracle Matthew, for showing us what it truly means to be a childhood cancer warrior!
For more information about Matthew and to follow his amazing story, we encourage you to view his family’s YouTube video: http://youtu.be/WZL_7pj4Nvg and visit their Facebook page at:
The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information on our resources or information on how to obtain our resources free of charge, please visit our website at www.acco.org.
For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit: