Project Description

Nick

Nick’s parents write, “Sunday, April 17, 2011, Nick had a great day hanging by the pool and throwing the football with friends. He had been experiencing headaches off and on for a few months and more recently he was complaining a little about his vision. We were thinking that he might need glasses and his vision problems could be causing the headaches. That seemed pretty logical. On April 18, Nick experienced a fall while riding his rip-stick (like Tony Hawk, he says). He had a pretty large goose egg on the right side of his head. After school the next day, he was not feeling well. He was tired, nauseated and had a headache. Jennifer noticed his eyes were dilated and suspected a concussion and took him to urgent care where they confirmed the concussion and sent him for a CT Scan. Upon receiving the CT results, the doctor called us back and told us the CT scan was not entirely normal. He went on to explain that Nick has a tumor in the area of the brain known as the fourth ventricle. We were told it is about 4cm large. He said we would need to see a neurologist at 11am the next day. On April 20th, the neurologist confirmed the diagnosis and stated the upper ventricles were larger than normal due to the displacement of fluid. He stated the tumor may be a medulloblastoma or a ependymoma. He referred us to the hospital. Nick received surgery April 22 to remove the tumor.

At the hospital, a MRI was done and we found out that Nick had five tumors. Surgery was needed to remove the largest one, but surgical removal of the others was not recommended as it would be very invasive and risky, and they could be treated with radiation and chemo. Following the removal of the largest tumor Nick was unable to speak of make purposeful movements and was diagnosed with posterior fossa syndrome (PFS). PFS is one of the risks associated with the surgical procedure used to remove the tumor. About 20% of patients experience PFS after this procedure. Pathology results identified the tumors as medulloblastoma, a type of cancer that grows in or near the fluid spaces in the brain & spine.

Nick was transferred to inpatient rehab to get his speech and coordination back, but he did not make good progress initially and required surgery to install a shunt to drain fluid that was creating pressure in his brain. Following this procedure Nick had two seizures which were likely a result of the shunt installation. A port was then surgically installed to facilitate chemo and he was transferred to the inpatient oncology unit to begin radiation and chemo therapy while continuing physical therapy and speech therapy.

Nick received radiation and chemo for six weeks. About 2 weeks post-radiation he developed pneumonia and surgery was required to remove infection and install a temporary chest tube for drainage. While recovering from this an MRI was done about 4 weeks post-radiation and it showed that all of the tumors responded well to the radiation and chemo and were gone.

While still recovering from the pneumonia, Nick was moved to inpatient rehab for more aggressive speech and physical therapy. On September 13th he was discharged after making amazing progress at inpatient rehab. His cancer treatment plan calls for six cycles (approximately 6 months, but potentially longer) of chemo which started in September. He will continue speech and physical therapy as much as possible throughout the 6 month chemo regimen.”

Rally For

Medulloblastoma