A very long week

How did we find out Anya has Retinoblastoma?
We started noticing a whiteness or glassiness in her right eye somewhere between four and six months ago. I could only see it from the side, and at first I thought it was just the light hitting it funny. I hardly thought about it, and never even mentioned it to Will. Then in March I was taking Anya to the doctor for something else and Will said, "why don't you mention her eye to the doctor". That was the first time we ever talked about it. It turns out other family members had seen it too.
So, I asked our family doc and he said he didn't see anything. After that, though, I noticed it quite often and I just couldn't let it rest. We are fortunate to have a family friend who is an optometrist. Milena has checked Will's and my eyes before, so we asked her to take a look at Anya's eye. It took all of ten minutes, but she said that there was definitely something in there and urged us to call a specialist the next day. That was last Sunday. The beginning of this very long, very dreadful week.
On Monday, Milena called Will and recommended a different specialist, a doctor who specialized in retina problems. She said she just wanted to rule out retinoblastoma. That was our first acquaintance with the word. I didn't find out until later that night. We had an appointment the next afternoon, and saying that Monday was the worst night of my life is an understatement. The possibility of Anya having cancer seemed so unreal, yet there were many clues pointing that way.
On Tuesday, May 4 we met with Dr. H in Denver. He did an ultrasound on Anya's eyes and looked closely at them and confirmed that she had Retinoblastoma - our worst fears had come true. At that point, the doctor could see a tumor in only the right eye. He needed to do an exam under anesthesia (EUA) the following day to look more closely at her eyes, but we briefly discussed treatments. When the tumor is only in one eye treatment ranges from very small amounts chemo directed precisely onto the tumor via a catheter to removal of the eye altogether. The direct chemo sounds better, but only a few clinics do it, so it would have meant traveling to New York or Philadelphia for treatment, but this is how we were beginning to think.
Wednesday brought new difficulties. We had the first of what will be many exams under anesthesia for Anya. It was quite difficult for Will and I to watch her go under and leave her in the operating room. I have never experienced a more unfriendly place than that OR. Then, the waking up from anesthesia was so very difficult. Anya was disoriented and upset. She couldn't open her eyes or talk, but she understood that we were there and what we were saying. That stage lasted about 30 minutes until she fell asleep in my arms. When she came to again, she was much calmer, although still clearly upset and in a bit of pain.
The exam showed us that the tumors were in both eyes, with the tumor in the left eye being much smaller. What this means is that the standard treatment is chemotherapy combined with laser or cryotherapy directed at the tumors. It was an about-face from what we had been preparing for, and therefore hard to hear. Fairly quickly we were able to come to terms with it as the positives were that she will most likely be able to keep both her eyes and we can do the entire treatment in Denver. The strongest negative is that bilateral retinoblastoma is linked to a gene, which means that Reese could have it also.
The next day we were back at Children's hospital for an MRI. Again, Anya had to go under anesthesia, which luckily for Will and I was much easier to come out of for Anya. The good news continued - finally! The MRI was clear and Anya has no tumors in her brain or anywhere near her optic nerves. Her vision is quite good, and the doctors expect it to continue to be so. We met with Anya's oncologist, Dr. A, who immediately won over Anya by being a lady doctor. Anya had been waiting for days to have a lady doctor! Dr. A thoroughly and patiently described what Anya's chemo treatments will look like for the next six months. I will describe that more later as these days were enough for me to live through and enough to write about for now. I'll leave you with some pictures of Anya on Friday morning, playing doctor, her new favorite game.