Philadelphia

We came to Philadelphia to meet with the leading expert on Retinoblastoma. We have heard and read the name Dr. Carol Shields many times since Anya's diagnosis, and her work at the Will's Eye Institute in Philadelphia is legendary. About three weeks ago we found out that she is the sister of a friend of my aunt. Did you catch that? So, through that connection, I ended up on the phone with Dr. Shields and she said that she would like to see Anya. She stated that Anya is old for this diagnosis, which we have been told all along, and that she wanted to make sure we had the correct diagnosis and treatment plan.

Two days ago we met with the famous Dr. Shields and three things became clear. First of all, she agreed with Anya's diagnosis and treatment. She didn't have much new information to give us, which was actually what we were hoping for. It is nice to get confirmation that we are on the right path, even if that confirmation took seven hours to get. Yes, we had to wait seven hours to see the doctor. We arrived at the hospital at our scheduled time, 7:30, and no one even spoke to us until 10:30.

That brings me to the second thing we learned on Monday - we are extremely happy with the care we are getting in Colorado. The only time we had a long wait was with our first ophthalmologist and that was an hour and a half wait. Even an hour and a half is hard on a child, but seven hours is painful. The Children's Hospital in Denver has both a facility and a staff that are geared towards kids. When you spend a lot of time at the hospital, as we do lately, it makes a huge difference to have it be kid friendly - from the people to the stickers to the playrooms to the tiny toilets, it really does make a difference. An example of the difference is eye drops. For every exam, Anya has to have her eyes dilated. That means a minimum of 5 drops in each eye. Usually the process starts out as tolerable, but quickly gets difficult as some of the drops sting, and it is just generally irritating to her. The staff at the Children's Hospital is so used to kids that they have a variety of tricks and prizes to ease the pain of it all. On Monday, Anya made it through getting her eyes dilated just fine, but the wait was so long that she had to have it done a second time. Simply put, having eyes dilated after sitting around waiting for 6 hours, not getting to eat much, and not having a nap does not make a happy little girl.

Which brings me to the last thing we learned, something we have learned over and over in this process: Anya is truly exceptional. She puts up with it all and still gives the doctors a hug at the end. That she can still trust doctors is something I am thankful for. For her exam she was not put under anesthesia, but had three doctors, two techs, three med students, and Will and I in the room with her. Many of these people were there to hold her down, and we were warned that they would likely use eyelid spreaders. She didn't need them. They held her head still and told her to look around in different directions and she did it. All the while, the doctor was using a light and a giant lens to see into her eyes. I had this done to me earlier in the day, and I can tell you that it feels like a searing bright light in your eyes. Anya's ability to remain calm and agreeable through her exam brought me to tears. When finished, every person in that room remarked how they have never seen a child do so well.

Having Anya do so well in that exam meant that there was no need for an exam under anesthesia. It also meant that after Monday, we were done. In planning for the trip, no one at Will's Eye Institute could tell us how long to stay for, so we planned a return on Friday. Now, with our extra time, we are visiting family and playing a bit. What a nice surprise to get to have this trip feel a bit like a vacation.

The pictures above are Anya at a variety of ages taken by our friend Chris. He also took pictures at the party, and I will post some soon.