30 DAYS/30 STORIES® 2020
No one is ever prepared to hear the words “your child has cancer”. Your entire world comes crashing down around you in a matter of seconds, and you lose control of everything. You begin your nightmare of a roller coaster ride that you cannot get off of, no matter how hard you try.
Ryan’s story began when he started having stomach pains while eating. On March 18, 2019 Ryan went to his local pediatrician, who, after examination, felt a lump in his abdomen. From there, he was sent to our local ER for an ultrasound. It was confirmed there was a mass in his abdomen measuring 6 x 3 x 4 inches - so large, they could not determine its point of origin. After several hours in the ER, a pediatrician came in and asked where we wanted to be transferred to, as Ryan would need a higher level of care. Ryan was transferred to the Children’s Hospital of Philadelphia (CHOP) via ambulance. After arriving at the ER department at CHOP, a doctor pulled us out of the room and said those life changing words, “your child has cancer”.
Within 24 hours of being admitted, Ryan had a port placed, a small biopsy of the tumor, a lumbar puncture, a bone marrow biopsy, and numerous scans. We spent the next 6 days waiting for the biopsy test results to come back with a diagnosis. We would soon discover they ran out of biopsy tissue and would need to perform a larger surgical biopsy to obtain more material for continued testing. All the tests that had been run came back negative for the cancers they were testing for. After his second biopsy, we waited another 9 intense days for answers. Ryan’s oncologist came back with a long list of cancers that were ruled out and still no definitive diagnosis. They confirmed his tumor was a solid cancerous mass and they provided a generic label -- Undifferentiated Neuroepithelial Abdominal Tumor. Ryan and his doctors would go on to refer to his mass as a
“Ryan-oma”, as he had a one-of-kind, rare cancer.
Treatment had to start. Without a definitive diagnosis there was no set treatment plan, no prognosis, no staging, no statistics, nothing to compare to. The tumor board had to devise a treatment plan specific to Ryan using their best educational expertise (guess). To fight this “Ryan-oma”, they decided on alternating between neuroblastoma and sarcoma chemotherapy drugs, as his tumor displayed characteristics of both of these cancers. After 21 days in the hospital, Ryan was discharged and released to Lehigh Valley Reilly Children’s Hospital for chemotherapy, weekly care/bloodwork, and those unexpected middle of the night ER visits, as Lehigh Valley is located much closer to home.
We were thrilled to learn that the tumor was responding to treatment and shrank to about 1 inch in diameter. As the tumor receded, the doctors could see it was originating from the point where the esophagus and the stomach meet. Unfortunately, this location would make it very difficult to surgically remove.
Ryan ultimately completed 9 rounds of chemotherapy and all that remained was a piece of questionable tissue about a centimeter in size. With surgery as a last resort due to location, we were referred by CHOP to Boston Children’s Hospital/Dana Farber Cancer Institute for a second opinion. This new team was also unable to provide Ryan with a definitive diagnosis but did agree that proton therapy (radiation) would be the next step, as an alternative to surgery, in order to gain local control of the cancer.
Within days of returning home from Boston, we had an appointment with Penn Medicine’s pediatric radiation oncologist. It was determined Ryan was a good candidate for proton therapy and he would undergo 32 treatments to his abdomen, daily M-F for six weeks, while we stayed at the Ronald McDonald House in Philadelphia.
Ryan had his last active cancer treatment on February 28, 2020. After going 3 months without any treatment, Ryan’s oncologists believe all that remains is scar tissue. Ryan had his port removed this past June and continues to be re-scanned every 3 months. We have a thriving 11- year-old boy on our hands thanks to the four incredible medical teams that put so much knowledge, expertise, advanced technology and research into him. Any/all of Ryan’s unused biopsy material has been released to research studies, in hopes of saving the next child diagnosed with a “Ryan-oma”. The need for continued pediatric cancer research and funding is essential.
We share Ryan’s story to bring awareness to pediatric cancer and the Pediatric Cancer Foundation of the Lehigh Valley (PCFLV). Having to go from a 2-income household down to 1 for over 1.5 years, while fighting for our son’s life, has been extremely challenging. PCFLV was there to help before we realized we needed it. From sitting with us bedside during hospital admissions, to throwing clinic parties for the kids, PCFLV provided all of us with so much support. We were provided with numerous gift cards for gas, food, and retail throughout Ryan’s journey. During our 6-week stay in Philadelphia, PCFLV sent us CHOP cafeteria gift cards providing us with lunch. We will forever be grateful to this wonderful organization for helping us through tough financial times.
Written by his parents, Melissa and Reg