One of the doctors reviewing the scan saw something on the optic nerve but it was unclear what it was. The scan was only meant to check on the fluid so it wasn't very thorough and it wasn't focused on her eyes. The detailed scan they needed would take about half an hour and so they would have to sedate Ryleigh to make sure she would stay still.
The detailed MRI was scheduled for the beginning of March. Two days later I met with her neurosurgeon and he delivered the news that Ryleigh had a tumor on her left optic nerve called an optic nerve glioma and we would have to meet with an oncologist, Dr Chang. The following week the oncologist told us that the tumor was inoperable. (The location of the tumor would make it difficult to determine which tissue was good and which tissue was bad so the entire nerve would have to be removed if they operated.) The way that they treat this kind of tumor is with chemo.
For Mike and me, the idea of putting our 15 month old daughter through 12 months of chemo was repulsive. The oncologist went on to explain that the scans Ryleigh had for her surgery 6 months prior didn't have the tumor. In December the tumor was about 1/2 a centimeter and on her scan in March it had doubled in size and was now 1 centimeter. She went on to say that if it continued to grow it could eventually cause her to go blind. Our minds were reeling. Dr Chang told us that if we wanted to wait we could postpone starting the chemo for 3 months but not much longer because it seemed to be growing so fast. She told us to take time to think about everything and let her know what we wanted to do.
Almost immediately we both felt that the best thing to do would be to attack it aggressively. If we waited and the tumor continued to grow we ran the risk of the tumor affecting her vision. Once her vision was compromised there was a good chance they would not be able to fix it. Mike and I felt very confident in the oncologist. Any question we had she knew the answer, she had Ryleigh's best interest in mind, it was the same hospital that took care of me and Ryleigh in January 2008, and the same hospital that took care of Ryleigh in September.
We let Dr Chang know that we wanted to go ahead with the chemo.
This past Monday Ryleigh went into surgery around 12:15pm and it took less than an hour to have the port placed.
Since Monday, Ryleigh seems to be a little more tired and her appetite isn't quite what it was, but she is doing really well. We strongly believe that if Ryleigh didn't have to have the surgery in September we wouldn't have caught the tumor before it affected her vision.