What a week

The past 15 months have had a lot of ups and downs for us. As many of you know Ryleigh was 9 weeks early and she had a lot of complications at birth. Due to those complications Ryleigh had scare tissue that formed in her brain and started to cause hydrocephalus. In September doctors performed surgery to remove as much scare tissue as they could and to create a bi-pass in one of her other ventricles. In December Ryleigh had to go in for an MRI to make sure the scare tissue didn't grow back. The MRI showed that the surgery in September had been successful but it also showed something that wasn't supposed to be on the scan.
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. Her port placement and first treatment was scheduled for April 20th . (A port is a device that is about the size of 2 peanut M&M's and would remain under her skin for the duration of her treatment and has a tube that delivers the chemo directly into her vein.)
This past Monday Ryleigh went into surgery around 12:15pm and it took less than an hour to have the port placed. She then went up to recovery and they monitored her for a while before they would start the chemo. A little after 6:30pm they started the chemo and it took about an hour to finish. Originally they were thinking about keeping her overnight but she handled everything so well she was able to come home that night just after 10pm.
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.