Welcome to the Fearless Fighters Foundation
Our foundation is dedicated to funding advanced pediatric cancer research as well as easing the financial strain of families facing pediatric cancer treatment and supplying those families with resources to help keep them connected and together throughout treatment.
We are committed to finding new and targeted treatment options for childhood cancers and crushing cancer off the planet.
In June 2020 we noticed a slightly swollen lymph node on the right side of Dylan’s neck. He was scheduled for his 14-year-old checkup that month. His pediatrician was made aware and was not concerned at that time. In July the lymph node seemed just a little bigger. Dylan was seen by a Nurse Practitioner who was not overly concerned due to no other symptoms being present. We were told to come back if there was any further increase in size or any other symptoms. Dylan had been playing baseball, Lacrosse, doing CrossFit training, and was very active with friends that whole time without incident. By August, the lymph node had become much bigger and he was having increased thirst.
We made an appointment with the pediatrician and after Dylan was assessed he immediately referred us to a Pediatric surgeon at Akron Children’s Hospital.
On September 4, 2020, Dylan had surgery to remove the lymph node on the right side of his neck and a lymph node biopsy was done. After the surgery, the Pediatric Surgeon told us that Dylan had Lymphoma, but it was not clear which type. The stains under the microscope were not staining for classic Hodgkin’s, which is what they originally thought he had. The immunostains were repeated and the results were still unclear because the immunostains were showing characteristics of both Hodgkin’s and Non-Hodgkin’s Lymphoma. The stains were then sent to an adult hospital and there was still no answer. After that, the stains were sent out to a well-known pathologist at the National Institute of Health. An accurate diagnosis was needed to be made in order to determine the correct treatment.
While we were waiting on results for a diagnosis, Dylan had extensive blood work done, EKG, Echocardiogram, CT scans with contrast of his neck, pelvis, chest, and abdomen. He also had an MRA and MRI of his brain and a bone marrow biopsy. Those results showed disease all over. The lymph nodes in his neck, right and left supraclavicular nodes, his chest, and spleen, thoracic spine with a T-3 compression deformity, soft tissue areas at the skull base, soft tissue into the spinal canal, and bone marrow were all involved. On September 22, 2020, an official diagnosis was made and staging was determined based on the scans. Dylan was diagnosed with Non-Hodgkin’s T cell histiocyte-rich mature B cell Lymphoma stage IV. This type of cancer is not typical in kids and there are few case reports in adults. Hearing that our son had cancer was the most heartbreaking news, but to also learn it was a rare form of cancer was extremely devastating.
The outcome was unknown. The fear that we felt was indescribable.
How could this be happening? Our son had cancer… this couldn’t be real.
On September 21, 2020, Dylan had surgery to have a double lumen med-port placed in his upper left chest so he could have IV access for chemo, fluids, medications, and blood draws. On September 23, 2020, Dylan was admitted to the hospital and started chemotherapy. He was to have 6 rounds of chemo and lumbar punctures to have chemo put directly into his spinal fluid, ALL INPATIENT. Dylan’s oncologist told us that 95% of the time patients end up back in the hospital after chemo due to fever or mouth sores. This was very accurate. Dylan ended up in the hospital after every round of chemo due to side effects. He endured long hospital stays with so much discomfort. He dealt with frequent fevers, chills, body aches, mouth sores (so bad that he needed a PCA pump to control his pain), allergic reactions, antibiotics, change in taste, weight loss, hair loss, vomiting and diarrhea, weakness, and fatigue, numbness, rashes, oral thrush, infections, shortness of breath, anxiety, pain, and emotional distress. He spent a total of 106 days admitted to the hospital. He had 13 platelet transfusions, 9 blood transfusions, 15 lumbar punctures, and 4 bone marrow biopsies.
When scans were repeated to check his progress from chemo, they continued to show improvement and reduction in size of areas of concern. January 29, 2021, Dylan had surgery to biopsy the mass in his chest to determine if disease was present or if there was dead scar tissue. These results determined the next course of treatment. If the biopsy showed active disease, his treatment plan would change and he would need different chemo and more than likely an autologous stem cell transplant. Thankfully it showed that the mass was dead scar tissue and he could move on to the maintenance phase of treatment. He finished his chemo in March and had scans in April which showed that everything looked stable -to -improved. His bone marrow showed no evidence of Lymphoma. Dylan was in REMISSION! On May 4, 2021, he rang the bell signaling that he was done with treatment. What a glorious sound that bell made! On April 23, 2021, he had surgery to remove his med-port. We couldn’t be more proud of Dylan for continuing to fight for 8 long months. For never giving up, when sometimes it was hard not to. He will have monthly check ups with his oncologist and blood work done. He will have CT scans and or ultrasounds/X-rays every 3 months. This will be done for 3 years and then hopefully he will move on to survivorship after that.