Detailed Diagnosis and Hospital Stay

On the morning of March 31st, Noah was nauseous and threw up. He had been intermittently having blurry and double vision for a few weeks. We were working to diagnose the issue and waiting for a CT. After he threw up, we rushed Noah to the CHOC ER. After several hours in the ER they performed a CT.

The CT showed a mass/growth on Noah's brain stem. Unfortunately the resolution of the CT did not allow for proper diagnosis. It did however show the mass is blocking the pathway that allows cerebral spinal fluid to drain properly from the brain down his spinal cord, thus causing the fluid to build up in his brain and create pressure. The pressure was believed to be the root cause of his intermittent blurry vision, double vision, nausea, etc.

Noah had a shunt (a small drainage tube and valve) placed on April 1st that provides an alternative drainage pathway for the excess cerebral spinal fluid. The shunt was placed under the skin, from his head down to his abdomen. The shunt operation was successful, and the shunt is performing properly and released excess fluid and thus reduced the pressure on his brain. The side effects subsided over the next two days, including headaches, nausea, and double vision.

Noah received an MRI, shortly after the shunt operation, on April 1st. The MRI provided a much clearer picture and supports the Neuro and Oncology team's diagnosis of a brain tumor in his brain stem.

Unfortunately due to the type of tumor (diffused) and the location (brain stem) it is non operable. Additionally, there is currently no available treatment or medicine to remove the tumor. That said, there are cases of long term survival in patients from various clinical trial treatments, so not all hope is lost.

Thankfully Noah's personality is not affected by the tumor. The brain stem controls basic functions (breathing, eating, heartbeat, mobility, etc). Noah is super positive and optimistic during everything. He is confident he will "make the history books" and help find a cure to this terrible disease. Noah is fully aware and understands the diagnosis, prognosis, and gravity of the situation. He has a strong faith, and his strength and belief in God is driving his journey.

To help gain additional information on the tumor our Neurosurgeon recommended a biopsy be performed to collect tumor tissue and send it off for genetic and pathology testing. On Sunday the 3rd, the Neurosurgeon performed the biopsy. The results will give us further information about the tumor and potential treatment options.

Noah did well through the multiple procedures and recovered sufficiently to come home from the hospital Wednesday the 5th. We've been resting and recovering as a family ever since.