In April 2009 we started noticing Jacob's eye was blinking funny. We didn't think anything of it at first, and figured he was just tired.
The week of 5/11 is when the issues really started. That Tuesday Jacob started complaining of a headache and "seeing double". He was also acting spacey. I called and made an appointment with the pediatrician for the next day, but was only able to get in with the nurse practitioner. She looked him over, and then referred us to an opthamologist.
My first thought was his medicine dose was too high for him now since he had lost five pounds since January. We tried a couple of days off the medication, but it didn't have any affect.
Monday (5/18), the school nurse called because he was having another headache and she commented that his right eye wasn't as reactive as the left. The nurse at the ped's office wanted us to just go to urgent care (I really think they assumed I was overreacting), but I felt more comfortable taking him to the ER. The ER doctor's noticed his coordination was off and that he was slurring his speech so they did a CT scan
I started to get nervous when it was taking a while for them to come give us the results, and then my heart sank when three people walked in the room.
They found something on the CT scan....
Jacob was then admitted to the hospital. The next day they did an MRI, and several hours later we got the news that it was an inoperable brain tumor called a brain stem glioma, more specifically a Diffuse Intrinsic Pontine Glioma. This type of tumor is so rare, that there are only about 200 cases diagnosed each year.
Due to the diffuse nature of the cancer there are no surgical options, and current chemotherapies have been found to be ineffective. While radiation therapy does permit some relief of the symptoms, the benefits are short lived, and there are no known long term survivors once the tumor returns.
Jacob completed six weeks of radiation and several rounds of chemo. Unfortunately, we learned the tumor was growing again at the end of December. We started a trial of a new medicine called PF-02341066. We got good news at our March MRI that the tumor had shrunk 10%. Unfortunately it was short lived, and the tumor grew back quickly. At that point, per Jacob's wishes, we stopped treatment. He passed away peacefully home three days later on 3.21.10.