I'm why you're here

Ryan

Hopes to be a firefighter when he grows up.

In January of 2011, Ryan started throwing up. It seemed he had a flu bug, but then he became worse. After much testing and lots of visits to the pediatrician, it was determined it must have been a neurological disease. An MRI at Children’s Hospital Colorado confirmed Ryan had a 4th Ventricle Anaplastic Ependymoma.

Within days, Ryan had a partial resection of the tumor. The tumor had metastasized, so Ryan had chemotherapy injected directly into the spinal fluid. Ryan then had thirty-three days of chemotherapy and radiation.

In May of 2011, Ryan had a second surgery and all of the tumor was resected. Ryan then had three rounds of chemotherapy, followed by a third resection of dead tissue, and his last round of chemotherapy in the fall of 2011. Ryan continued to have observational MRIs and was cancer free for five years! Ryan experiences some deficits in speech, hearing, cognition, gross and fine motor skills, and swallowing, but despite his challenges, he is continuing to get stronger. Additionally, he takes growth hormone and synthetic thyroid medication.

In May of 2016, Ryan started having pain where his original tumor was that Tylenol and ibuprofen were not helping. He had a CT scan showing his ventricles were okay and that his shunt was working as expected. The pain did not lessen, and within two days the radiologist and neurosurgeon requested an MRI for swelling and questionable tissue. The MRI showed Ryan had a recurrence of the tumor. It was in the area where the pain was and it was small. He had five days of GM-CSF injections, in hopes that his body would attack the tumor with its own immune cells. On June 1st, all of the tumor was successfully removed. It was encapsulated and removed without causing further nerve damage or neurological effects. Ryan then had five days of radiation over two weeks. He had an MRI in August that showed no tumor!

Ryan is currently waiting for another immunotherapy drug that will be injected directly into the spinal fluid. In the lab, it attaches to the tumor cells so the hope is that it will attach to any remaining tumor cells. These immunotherapy drugs are new in the last five years and are a direct result of the ongoing research done by the pediatric neuro-oncology team at the Children's Hospital Colorado.

We checked in with Ryan's mother for an update: "We thank God for everyone that gives to this Foundation, the staff at the Morgan Adams Foundation for their dedication and hard work, and all of the researchers, Ryan’s neurosurgeon and neuro-oncologist’s that have helped Ryan and made him a survivor! Ryan just celebrated his eighth birthday! He is in second grade and enjoys playing with Superman, Batman and Robin Lego’s, fire trucks, listening to music, reading books, and playing with his brothers, sister and friends. His hope is to be a firefighter when he grows up."

Thank you