Saturday, June 25, 2011
Here's a picture of Jamesie today. You can interpret this picture many ways, but I choose to interpret it as James' message to the tumor that he will chew it up, spit it out, and then drool on it like a Sophie. He's been much more himself today and he's sitting up well again and playing. He loves playing peek a boo with his hospital bed, he thinks it's the funniest thing ever. We are so glad that so far nothing that has happened has dampened his spirit- he's the same happy boy as ever.
I suppose I should have mentioned that Day One actually constituted two days. The days blend together when they happen all at once.
Today felt like the first day in a long time where nothing happened. No tests. No procedures. No urgency. We're in a strange state of limbo, with all the important things lingering on the horizon, the one two three of our first few days broken up by the weekend. The Doctors wanted to wait to do the surgery until Monday so that they could get the right team in place to perform the operation. I'm glad. We don't want people coming in at odd hours over the weekend to perform the most important procedure in James' fight against the tumor. We want them fresh, rested, and fully focused on our son's care. If I saw a hungover nurse anywhere near my son, the results would be unpleasant at best, and aggravated assault at worst. We're glad they're putting together a team to work on James.
Although at a slower pace, a couple of important things did happen today. First, we moved from the PICU to the neurosurgery floor. One of the great things about Children's is the level of specialization available in a hospital like this which focuses exclusively on children's care. They have an entire floor devoted to children with neurological problems requiring surgical intervention like James. Even in the PICU, the subsection of the PICU we were in focuses exclusively on neurological conditions. This means that everyone you see has seen something like this before, as people all around the country are here dealing with the same kind of problems. We are extremely blessed that it happens to be in our backyard. General practitioners simply don't see this thing very often. Our pediatrician visited us today and told us that in all of her 27 years of practice she has only had two cases of children with brain tumors- including James. I was glad to hear that the first case is now over twenty years old. Small things like that are a great comfort. The advantage of the "floor" as they call it is that we have our own bathroom (no more community showers a la freshman year at Baylor), the nurses bother James much less, the instruments are less intrusive (they mute the monitors, thank God) and that more people can visit us. We can also eat and drink here, which is nice.
The other important development today is that we discussed James' surgery with the surgeon today. He was very patient and answered all of our questions. Sadly, he wore no tie. I've come to expect magnificent ties. He used a model to show us how they will go in through the back of James' head to get at his tumor (and will not remove all of his gorgeous hair!), which rests between his cerebellum and his brain stem. They will determine the composition of the tumor and remove it by a combination of suction and incision as necessary. They will get as much as they can. Kara and I have decided not to look up the percentages on the procedure. Google is forbidden. There's no sense in knowing. I am not interested in odds. I'm only interested in James. He has to have the surgery, and we'll go from there. It's in God's hands.
The day felt a little more normal, as much as anything can be. We had a lot of visitors, all of whom loved on James, which is great. Visitors are nice, though at times it can be a bit exhausting going through the story over and over. Hence the blog, I suppose. Writing it is strangely therapeutic.. Kara displays a much higher level of grace than I do, though that's not surprising. I am amazed constantly by the amazing level of support we've received, from all corners. Someone from the church has come to pray with us everyday, and we've received meals, flowers, shower caddies, drinks, a pantry's worth of snacks, and more and more than I can remember. We appreciate everything, and we could not function nearly as well without your support.
After Monday, more pathology on the tumor will enable us to make a plan going forward with the oncologist. Again demonstrating the incredible level of specialization here, there is a pediatric oncologist who specializes in brain tumors. Our pediatrician thinks he will be in-patient here for several weeks. Kara's working on a post summarizing how we got here. It's been a long journey.